March 4, 2011
has been very ill. She is now in hospice.
September 28, 2009
Aaron, has it been 5 years? It seem's like yesterday. Your Mom said today she feels as if the pain
is only getting worse. I know that feeling well. The pain and sorrow we feel today feels like it has just been multiplied
by 5. We did celebrate your life today in our visit to the cemetary, and sat quietly weeping on the couch where you died at
253pm, candles burning, we felt your presence more than ever before. We miss you Aaron and love you so. Mommy & Daddy.
Chicago was in the path of a major flood, caused by, remnants of hurricanes Gustav and Ike. Chicago’s
O’Hare International Airport set its all-time calendar day record rainfall of 6.64 inches. Over the weekend we received
over 10 inches of rain. Our basement flooded and our yard filled with over 50,000 gallons of water threatening Aaron’s
pond. Needless to say this was an event we could have lived without. Our basement flooded, and of course the hardest hit room
was the finished playroom I had made for Aaron, which was carpeted. During the clean up effort, Florence came down with a
pretty severe strep throat with a high fever following her doctor’s orders, finally had to seek refuge at her parents
house. Needless to say it took a month to completely clean and rebuild the rec room. Someday, I will put my shop back together.
Dan Tani visit’s us at our home in Chicago! Preparations for today had been underway for a few weeks.
Many of Aaron’s classmates, his teacher, and many family, friends and neighbors joined us for a Thank You! Dan picnic.
When Flo & I were at NASA last October for the launch of STS-120. The Tani family treated us
so well, we thought we might return the favor with a nice reception for him. Prior to us joining everyone outside, Dan returned
the lock of Aaron’s hair to Florence, along with a certificate documenting it’s over 50 million mile journey on
board Discovery, for launch of STS-120 to space, it’s 4-month stay on board
the International Space Station and the return trip to Earth on board STS-122 February, 20th. He also presented us with a photo of Aaron’s lock framed by an ISS
window and our planet in the background. We had the chance to show Dan our astronauts room which is filled with Aaron’s
To say we were thrilled is a total understatement. This visit meant the world to us and Aaron. We joined the
others outback for sandwiches and cake. The weather was perfect, and Dan had another opportunity to answer hundred’s
of questions about space, again. It was a humbling experience for Florence and I, a day we will never forget. We hope to see
Dan again someday, as his work continues with NASA near his Texas home.
June 20, 2008
So much has happened. I have been
working on an 85 foot raised flower bed around 2 sides of our yard, to help stem water runoff into our yard from neighboring
properties. Last fall we received 3 inches of rain in a few hours and our yard filled up with water and threatened the pond.
This was a major small construction project for me to take on and have just finished moving 78 wheelbarrow loads of dirt from
our driveway into the flower bed. I am tired. Also, Flo and I are excited about a visit from Dan Tani this July, plans and
preparations are in the works.
April 30, 2008
I want to express a heartfelt thank you to each of you who may have thought about Flo and I and hope
you like Aaron's new web address..
Tuesday, December 25th, 2007
The best Christmas gift
Flo and I were so surprised by the best Christmas gift we could have gotten this year.
Yesterday, we recieved a post from ALD Life an ALD organisation in the UK. We had not opened it until tonight. It was ALD
Life newsletter for December of 2007. I knew they might mention Aaron's story this month, but we had no idea they would so
kindly feature a full page (with 3-color photographs) of Aaron and his story regarding the launch of the space shuttle Discovery!
Florence and I just cried and cried, we were especially moved by their choice of headline on the page that read: Remembering
Aaron Robert Hultman - The First ALD boy in Space! I am going to try to add their page to Aarons News Coverage page soon.
We can't thank ALD Life enough the wonderful gift they gave us this Christmas. Here is a link to their website:
Tuesday, November 13, 2007
HAPPY 12th Birthday Aaron!!!
We made it to Florida! We are so proud of Aaron and Dan Tani. We know Aaron
helped the entire crew of STS-120. They were faced with many challenges, one of the most technical missions for NASA to date.
It was exciting as we watched Dan enter the International Space Station, we knew Aaron was with him, and still is. Dan will
be on the station until the next shuttle launch when he will return to Earth.
To read the story about Aaron that was in the local newspapers here in Chicago, go here:
Monday, October 9, 2007
Well here it is October! A spring and summer season has gone. Aaron's pond spent the months
generating new life from 1000's of dragon flies to 100's of tadpoles. We didn't have too many baby fish this summer or if
we did they were consumed by the giant Bullfrogs, that sang all night.
The big new's is of course the launch of the shuttle in 2 weeks. I am working hard to make
it happen. We were so shocked and overjoyed when I received the cell call from Dan Tani.
I am very concerned about transporting Florence down to Florida and back. But at least we have agreed
to rent a new mini van so we have plenty of room to include a wheelchair. Flo's labs have not improved in anyway and her days
are being limited by a need for sleep. She is having a hard time maintaining a 13 hour day and at the same time trying to
accomplish as much as she did before.
Monday, April 2, 2007
Again, I find myself somewhat mystified at how the time
has flashed by. I have been with my new company in downtown Chicago for just over one month. I am enjoying the position. I
had a very steep learning curve as I am learning a lot about post marketing, research and reimbursements in the medical device
field. Have also learned about clinical trials for new or emerging medical device products. I contact only senior level management.
And invite them to our medical device conferences. The program I am selling now is in Palo Alto, California in mid-may.
The company I work for produces highly focused, interactive conferences. I work with good people. There are only like 6 of
us. It is a small start up business, almost 2 years old.
The latest on Florence is her bloodwork labs have shown a serious spike in the number of red and white
blood counts in her system. They are infact off the charts. This is in addition to the poor compliment levels we have
watched for years. The changed happened within one month. This is not very good news. She struggles every moment with a brain
that isn't working right. Which in itself is not new, but to the degree of impairment is. I can tell she is getting sicker.
We are in need of help and I am not sure yet how I am going to attain this help as we can not afford any in-home care for
A bright spot in our weekend was at 345pm on Saturday, March 31st. Aaron's pond sprang to life to greet
the warm spring air, as I powered up the waterfalls and seeded the biological filters to jumpstart the ponds natural ecosystem.
Today the water is crystal clear. All the fish are greatful for the added oxygen the falls create.
I again hope to update this a little sooner. We just past the 2-1/2 year mark from the day we lost Aaron.
And facing another Easter without him is always sad too. But, he gives me strength to face every day.
Tuesday, February 21, 2007
So much has happened over the last 8 weeks. Yes, we made it through Christmas (see Christmas pictures).
The holidays are not easy.
As of January 1st, I relaunched a new resume. Thankfully my daughter Lisa gave me a few pointers. It
really worked well, the response was awsome. I was so busy interviewing, making calls, setting up interview dates. I am now
getting a short chance to breath before a long awaited return to employment. The good news is that I have a new job, in the
loop, working for a firm that produces medical conferences. It's really great. Flo and I look forward to February 27th my
first day on the job. I don't think Flo will miss me that much.
We also have good news about Lisa. She and husband Nathan are moving to a new base near Washington DC.
They will be near Johns Hopkins University, where we are praying, Lisa get's the proper medical care she need's. Good bye
New Orleans! We were so happy to hear from her the other night, she sounded very upbeat and positive about the move. Flo is
planning a trip out as soon as they settle in to assist Lisa in anyway she can. We are not sure for how long Flo can stay,
but hopefully it will be at leat ten days.
Flo's battle continues. She woke up last Sunday morning with one of the extreme headaches that she battles
from time to time. She has headache pain all of the time in varying degrees. When it's extreme she can barely talk, walk and
function. She spent the week doing Moriphine, her medicine of last resort. She usually tries her best not to use it because
it is very hard on her stomach.
Anyway, I am sorry for the long overdue update. I will try to upload some new photo's soon. For those
of you that stop by and read this, thank you!
Thursday, December 21, 2006
So, it's Christmas time again. Flo and I are far behind the entire world when it
comes to Christmas. We are still working on mailing out our cards, we have been working on them for a good part of the day.
I had to go to the post office to ship a package out to my daughter Lisa and her husband Nathan. The post office told me that
mail was not delivered there on Saturdays? It may be because they live on a joint Naval and Airforce base.
My daughter Lisa continues here battle with an unknown disease. She was recently hospitalized
again for a week, with no clear outcome. I look forward to their move, in February, to Maryland where her case will go to
John Hopkins University Hospital. With luck they will have the resources to get to the bottom of her illness.
Besides the post office I did the usual Walgreens and grocery shopping. Yesterday I was at an
optical shop to order a new pair of glasses and it was near a very popular shopping mall. Traffic was crazy! I am so glad
I don't participate in the mall tradition of shopping. In order for us to get home I had to sneak through back streets to
avoid the overflowing main street.
About Aaron, we are preparing a little fun for him. We have a stocking with some little toys
we plan to bring to the cemetary on Christmas Eve. We will return again on Christmas day. We have candy and everything. The
little creatures that live around there always enjoy the candy we leave.
The house here lacks almost any sign of Christmas, we have been so busy. I guess we just were
not ready to deal with decorating. I used to love Christmas so much. I guess the holiday will never again be what it was before
we lost Aaron. We miss him so much.
Many people who have not suffered such a loss tell us that we should do this or do that. We listen
to them. But they have no clue. We are where we are and it's perfectly ok for us to be where we are. Thanks to the Compassionate
Friends network we have a lot of information about what people will say to us and how to handle it. Were lucky to have that,
we hear some pretty mean stuff.
Aaron's pond is doing great. Flo goes out almost every night with a flashlight to see who is
out and about in it's depths. She will came in and report to me who was out where and what they were doing. It's amazing to
see that inspight of the winter temps many of the ponds creatures continue on there little adventures.
I would like to thank you again for taking time out of your busy schedule to check in with us.
It means everything to Flo and I that people do care and have not forgotten our most precious son Aaron.
Thursday, November 23, 2006 Thanksgiving
Dearest Aaron, Happy Thanksgiving son. Thank you for a nice day.
Monday, November 20, 2006
Thank you very much to those of you who have entered Aaron's new blog and posted
notes to us. Florence and I are very happy to read the entries and so few words from others mean so much to us. Thank
Yes we have had a rough go at November. Starting with Aaron's birthday, then a very difficult memorial
service at Lutheran General Hospital where they remembered Aaron and his little sister Elaine both born there, and now
trying to find the "thanks" in Thanksgiving.
At the same time I am researching and searching for a new position as I am still unemployed. Since I
have been out of the cast now for about seven weeks, and working since very aggressively seeking a new position. I
feel a little more desperate now. Yet, I do feel thankful that I am able to do much of the work from home on the computer,
which didn't happen at all 13 years ago when I found my last company in 1993!
Aaron's Pond Update! As we saw so many wonderful new and exciting creatures over the summer, we
survived the falling of millions of leaves none of which are in the pond today, the news has not been so good for some of
the birds that visit the habitat. Our feathered friend Mr. Sarpshinned Hawk has been busy preparing for winter. 2 days ago
he successfully hunted down 2 sparrows one of which I saw him catch, he then flew to the front yard where I watched him as
he stood still waiting for his dinner to die. He flew off after a man on a bicycle passed. And today I found he had caught
a morning dove right outside our bedroom window where he'd done some feather removing. Just like life so is with the pond
and the habitat come life and death. Sorry bird's.
Monday, November 13, 2006
11th birthday Aaron!, we miss you so much. Flo and I are going to go bowling today at the same bowling alley were Aaron
celebrated his 8th birthday! Light a candle today and join us in celebrating the life of a brave, wonderful and kind son.
Think of a favorite memory and feel free to add it to Aaron's new blog.
Friday, November 10, 2006
I can't believe it's been over a month since my last update!
I have been so busy. Interviewing for a new position. It's very exciting for me as
I look forward to beginning a new career path. As soon as I was out of my cast from this summers surgery to remove the hardware
in my leg from the broken ankle incident, I have been actively seeking a new position. I have a few weeks of experience at
this new way of approaching employers. E-mail, the internet, it is so great, I am really enjoying the experience.
Flo is doing about the same.
Well Aaron's pond is netted. The pond is like a leaf magnet. If you end up with too much rotting vegetation
in the pond, it can eat up the pond's supply of oxygen over the winter. So while the leaves are falling I have a fine netting
over the pond. I still have to remove the leaves from on top of the pond. The fish have all stopped eating once the water
temperature drops below 50 degrees they will not eat. It's seem like the crawdads are out at night looking for anything they
can get their little pincers on. Research is scetchy about when they stop eating. We had an early snow. It didn't last long.
It melted the same day.
So please keep me in your prayers as I continue my job search. Thanks for visiting Aaron's website.
Thursday, September 28, 2006
It was 2:53pm two years ago today when Aaron past away. It seems like yesterday. This morning we went to a service at the
local church at 830am then had breakfast at a little restaurant. We brought flowers, balloons and many little things to Aaron’s
grave. When we got home about an hour and a half ago Florence and I had each written Aaron letters which we attached to balloons
and let fly across the street near Aaron’s tree. We attached some balloons and flowers to Aaron’s tree also, some
kids who were outside of the school building came over and asked us if it was someone’s birthday, when we told them
that this was the day Aaron had passed away they all spontaneously kneeled and said a prayer for him it was really something
to see. Flo and I will now spend the rest of the day in our very quiet house knowing that Aaron’s spirit is with us.
Wednesday, September 6, 2006
Well Aaron would have started 5th grade yesterday at the school across the street from our house. It is so hard
for us to hear the children gathering in the morning or playing at recess or during lunch and again as they all head home
for the day. It's sad.
As we approach the 2nd anniversary of Aaron's passing we are brought back to every single second of our fight for
Aaron's life, we continue to second guess the actions we took when we were in Minnesota. We could have done so much differently. If we had only done this or if we had asked them to do that, would Aaron still be with us today? It’s
a terrible place to have to live life from. Is it getting any easier? No it’s not. To us it is as raw of a reality as
it was in September of 04. We cry a lot, sometimes together and sometimes alone. Just the other day I heard a song from one
of Aaron’s favorite "space" movies. I cried for an hour. Flo & I both know very well that Aaron wouldn’t want
us to be sad, (we hear that) but there are times when we just can’t help it.
Flo is continuing to have problems with her foot that she had surgery on now over a year ago, it’s quite painful
for her to walk at times, she sometimes wishes she would have never had the corrective surgery at all.
I had surgery on August 15. Something I wasn’t planning on. The surgeon who fixed my ankle last December decided
it would be a good idea to remove all of the hardware in my right ankle as it was starting to cause some problems. After the
procedure they gave me a container with the screws, pins and the titanium plate in it!
At Aaron’s pond in the backyard Flo and I have seen many signs of life renewing itself we have had baby crayfish,
3 baby koi, several baby bluegills we discovered we have a couple of giant adult crayfish and as of now we have 2 bullfrogs,
and some smaller frogs.
We have managed to attract American Goldfinches to our yard (not seen in our yard before) Eastern Tiger Swallowtail and
Black Swallowtail butterflies, so many creatures I just can’t name them all. Florence has recently spent many hours
resetting some of the stone around the edge of the pond and when she finishes with an area not one rock will budge, she is
a master stone setter.
In July, August and a few nights in September we were treated to the song of one of the bullfrogs at night singing for
his mate. Aaron’s pond is a joy for us.
Saturday, July 22, 2006
Hi everyone. Florence and I have had two trips back to back.
First we traveled back to Minneapolis for a wonderful reunion with our friends at the Ronald McDonald House. The house
has added a giant ceramic heart to one of the walls. In it are the names of some of the angels that lived there recently,
including Aaron. We were invited to the dedication of the artwork but we were unable to attend last fall. We were so moved
by the addition, its just beautiful.
We then visited the childrens BMT Unit at 4A and the transplant clinic in the hospital and saw some of the staff we came
to know when we were there. We were flooded with memories.
Then to finish off the visit we had dinner with our friends Len and Bonnie who live a couple of hours outside Minneapolis,
they were kind enough to drive in and treat us to dinner. There son was being treated at the clinic at the same time Aaron
was and Flo & Len became friends. Sadly there son passed away also, he was 28 and an ordained priest.
On our way home we took a scenic route through Wisconsin, in hopes that we may stop by another families house that was
at the Ronald McDonald house at the same time we were. Flo had become good friends with Kim whose son Bryce has experienced
a full recovery. Unfortunately they were not home that day. The trip home was a long 12 hours. It was a very special trip
as you can imagine very sad and happy at times.
We have just returned from our vacation in Walhalla, Michigan. We had a pleasent 2 week stay. Lots of chores. Flo's sister
Margaret and her daughter Mary stopped in for a visit. We had an interesting experience one night (I was asleep already) when
Flo heard a most unusual sound she described it as a gravel truck dumping gravel on the roof, she could hear it run all the
way down the roof. Looking outside she could only see blackness of night. About an hour after I was up the next day, I thought
I would look out of the front porch to see if I could see anything and the only thing I could see was tree, tree where there
wasn't suppose to be tree. It turned out a fairly massive branch of an oak had fallen on the house. Lucky for us it landed
with the fine branches on the roof sending its 11" base out into the front yard. I didn't know what I was going to do. Lucky
for us our good neighbor Dave had a chainsaw and the section of tree was cut down to size.
After arriving home... more chores.
Last weekend we were busy unpacking. We attended the baptism of my Nephews son. Nate & Ellen Hultman of Washington
DC celebrated the baptism of their second child Silas Oliver Hultman at a church a block away from our home. It was at least
105 inside the church.
The next day was just as hot when Silas, his older sister Linnea, Nate, Ellen and Nate's mom Nina stopped by for a brief
visit to see Aaron's pond. We were so happy they had time to take it all in. Little Silas who just turned 1 thought he was
going to be going for a swim!
I finally had a chance to work on the pond yesterday and get it back to top condition ridding it of the last of the spring
Friday June 9, 2006
Hi, thanks so much for coming to Aaron's website, again. It really warms our hearts a lot to know so
many people care about us. I recently spoke with friends and family in Washington, DC, Minneapolis, MN, Hollywood and Chicago
and so many people check here for news about us! Imagine that. It really makes our day to hear about the visits.
I recently had to drive, in an emergency fashion to New Orleans. My daughter Lisa began having
serious health problems on May 3rd. By the time I had arrived my son-in-law Nathan had already been at 3 emergency rooms trying
to get a hospital to admit her.
She was having very serious headache pain, loss of cognitive skills, she was dizzy when she would stand
up and if she was up too long she would blackout. Had many multiple symptoms too numerous to mention and she was getting weaker
by the day.
Nate had to take leave from the Navy. He and I then bagan trying deperately to get her the medical help
New Orleans is a mess. I would think it must be one of the worst places to be in America today. Hospitals
are trying to operate without enough help, rooms,....it's awful. We went to an additional 4 emergency rooms before a hospital named
Oschner Memorial finally admitted her. By this time she could not walk anymore. And after a week of vigorous testing they
diagnosed Lisa with a rare low blood pressure disorder.
I can't begin to tell you what a struggle we had down there...at Tulane University Hospital in New Orleans
we had a doctor tell us the only way Lisa would be admitted is if she was either stabbed or shot, having a heart attack or
stroke or if pregnent and having a baby, he said all others go home.
I was never so happy to point my Jeep north and head home. Nathan is looking to transfer, hopefully
to the Great Lakes Naval Air Station here in Illinois where there are medical hospitals and doctors that are familiar with
On another note Florence and I added a statue of a small boy (we like to think of as Aaron) at pond
side. He is holding a frog in his hand. I will post a few photo's from my trip and the pond today.
I am looking forward to the end of my sales sabbatical as it approaches in July and look forward to
the beginning of a new and prosperous job. I am really excited about it.
Sunday May 7, 2006
Well here I am again. I would have a sooner update but we have been busy dealing with our bad luck.
While I was recovering from my broken leg in March, after my last entry, I recieved a notice from my
employer Pioneer Press, well it was a buy-out offer lets say. In other words good money to say good-bye. I had this offer
reviewed by my lawyer, and sought out the advise from a few others about this in the few days they gave me to respond.
Well I took the money and the buy out package. My last day of work was April 14.
So I now am unemployed.
I am taking a little sales sabbatical right now just to catch my breath, so many things have
been happening and so quickly.
I want you to know that Florence is very sick again. Yes, I know you have heard that before. It is very
commen for the husband of a Lupus patient to say that sentence and everyone must just think I am a broken record or let's
say a skipping CD. I apologize. Flo's recent lab reports were very bad. She has lost her ability to fight anymore and has
surrendered to an illness that has been trying to win for over the last 14 years and afflicting her since she was 16.
I don't know what to do anymore except try to help her out in anyway I can. She is very sick and is very uncomfortable. Not
once in a while but every single minute of every single day. I can't add to this. I just can't. I wish more people really
understood what's happening to her, but they don't or they refuse to I don't know. Pray for her if you can, we have a hard
time praying anymore.
Easter was hell. We spent some time at Aaron's gravesite and left him some goodies.
I am not looking forward to Mother's day.
I try to feel close to Aaron when I have a campfire outback or when I hear one of our favorite
songs on the radio. I have worked on the pond and the yard a lot lately, I think he likes the pond the best. He must love
to look down and see all the wonderful creatures that it supports. The koi, bluegill, goldfish, sunfish, a catfish, minnows,
frogs, tadpoles, birds, bees, I was even treated to seeing baby dragonflys emerge from the weedbed yesterday. Yes I know he
loves his pond.
I miss him so much.
Saturday February 25, 2006
Finally I have uploaded new photos!
Well here it is the end of February already. The time has flown since I broke my leg in December. Physical
therapy has kept me busy working on my leg. Now I can walk around with a cane! But if there is snow here in Chicago I have
to use my walker still! The doctors that did the surgery do not want me to break my leg again.
Florence is still recovering from here broken foot too. Luckly she has driven me everywhere since it
is her left leg thats in bad shape. She still is in the boot (see photo of us).
We visited Aaron's grave site on valentines day. We can't help but cry, which we still do
a lot of. Our lives are still turned over. We think of our son Aaron almost every minute to this day. There is little relief
to our grief. I know Aaron want's us to be happy and I think we would be a little more happy if so many bad things would stop
happening to us, but that is not to be. We are having a lot of problems in our lives today that I am not going to list here,
for I might be writing forever. It's hard to believe but true, we just want life to stop dealing us bad cards. We continue
Tuesday January 31, 2006
Well yesterday I was able to have my cast taken off for the last time. My broken bones in my ankle are
healing very well according to the doctor. Now I will spend the next 4 weeks trying to get my leg and foot stronger. Right
now on a scale from 1-10 my pain level is a 9. Since I don't have the cast on I am in a lot of pain. I still have to use a
walker most of the day.
Florence just got some good news today from her doctor about her broken left foot. As you know she had surgery last July
28, due to her lupus and many, many years using steroids to fight her desease, at the end of November her doctor saw no signs
of healing, at ALL. She then was prescribed a very high end electronic device that sends electrical current through her bones
to help promote healthy cell development. Florence has had to sit with this machine on her leg every night. Just today
she found out that her bones are starting to heal. She has a long way to go before she is 100% but at least we have a sign
About Aaron, we visit his gravesite often, we still cry daily and you know at times we still can not believe he is gone.
We miss him so.
Wednesday December 22, 2005
This is most likely the last entry I will make for 2005. I am not sure if anyone even still reads this page.
But of course life was not bad enough with Flo's foot not recovering from her surgery in July, now she has a new machine
to help the bones produce new bone cells, the Doctor told her he saw no sign of healing at all, hence the new machine. She
is still in alot of pain and wears a removable cast to keep her foot together. Then on Thursday, December 1st I slipped on
an 8th inch of snow and broke my leg in 3 places and dislocated my foot from my leg as well. The brake was complete both leg
bones and it broke a third time on one bone as well. I had to have reconstructive surgery on December 2nd. I spent a great
day in the hospital waiting for surgery to happen on Friday at noon. They had to put a plate in my leg with 10 bolts and 2
pins going into bones.
Now Flo is having to help me as I can't use my right leg at all. I am using a walker. Today was the first day I could
walk without her behind me. I had a bad fall one day because I lost my balance.
So I am glad we have no Christmas Decorations up. We were planning to go to a cabin over Christmas that got cancelled.
I don't know when I will be able to walk again. So lets continue to pile the crap on Florence and I because we all know we
don't have enough to deal with in our lives.
I am happy that my daughter Lisa is flying in on Christmas night.
Thursday November 24, 2005
Today was Thanksgiving. We stayed home most of the day, no dinners with any family, Flo and I did not have
an appetite and we had a very difficult time with the whole "We are thankful for" thing. We are thankful that Aaron spent
8 years with us.
Wednesday November 23, 2005
Today was the 3rd worse day in our lives. We spent some time at Aaron's gravesite today, we were planning to have
nice little picnic with cake there, but no we only had the worst windstorm of the year so even the smallest leaves falling
were leaving marks on our faces 50-60mph winds. We had cake at home.
Friday November 11, 2005
We are approaching Aaron's 10th birthday Sunday, and we continue to struggle to just get through each day.
It doesn't feel like anything has gotten any easier for Flo and I. Flo's newly operated on foot took a giant leap backward
as it was discovered by her doctor that the fused bones had begun to seperate. This put her back in the boot again and I believe
she will be in it now through the New Year. After a lifetime of being prescribed steroids to battle the lupus (our fears realized)
her bones now are having a very difficult time healing.
Aaron loved the fall. Each year he and his mother would go down to the park with rakes and rake up a big pile of leaves
Aaron would have his picture taken and then he would run, jump and play in the leaves. We have pictures from every year.
Florence and I are going to visit with some family tomorrow (on Sat.) have some birthday cake and cry. We are then planning
a little picnic on Sunday at Aaron's grave site.
Yes I know some of you may write me about this, some have told me it's time to let go!, or maybe you should move on Aaron
would not want you to be sad. We know he wouldn't want us to be sad, that thought in itself is pretty simple. That is
easy to say but hard to do. We live here in the house Aaron lived in with us we have many many happy memories everywhere
we look. At the same time this is where we waged a battle against ALD and we lost. We lost our Aaron the very foundation
of our exsistance is gone and yes we are trying to rebuild and we know every single painful step we take we are praying
for healing and it just doens't come.
I know it will come, but I can't tell when and I don't believe anyone could tell us when that might be. Please try to
understand it from our point of view.
We have begun to make certain changes in our lives, see Flo and I have always been concerned about others, well we have
decided it is time for us to make us happy so we are taking certain steps. Our first step is that we are going away for Christmas
to a single room log cabin at Starved Rock State Park. We are spending 4 days there and we'll be home after Christmas. We
are not decorating. We are thinking about passing on the holidays altogether it's hard for us to celebrate and be around happy
laughing people, when they just pass us and say "sorry man" it will be easier for us to just do some serious hiking.
We have even gone way out of our way to help people only to be told we were not doing it the way we were "suppose to". So
tuff. It's way past time for us to be concerned first and foremost about us and now we are.
Aaron's grave site is where we have to be Sunday and thats were you'll find us. In closing, just last night and today
I spent much of the time crying, because I miss him and I just can't seem to get used to living without him, he was my best
We love you Aaron and Happy Birthday!
Love Mommy & Daddy
Saturday October 29, 2005
My brother Dean & I went up to Walhalla and closed the cabin for the winter. We were able to have a
nice visit during the drive. We got the work done and before I knew it we were on our way back home. I was only away from
home one night.
Flo's foot is recovering very well. She doesn't have to wear the funky boot thing anymore just sneakers. It is still
quite painful at times.
I have made good progress in my backyard completeing many details around the pond now I am preparing the pond for winter.
Also I received a certificate designating my backyard as a registered National Wildlife Backyard Habitat. Very cool.
We have had a quiet month and that is what we needed. Aaron's tree was checked out this week by the arborist and everything
Wednesday September 28, 2005
The second hardest day in our lives.
I know I am a little late in making this entry.
We spent the day in the Chicago area. At 8:30 am there was a mass at Florence's parents church in Streamwood. We were
so greatful to see the peolple who really cared enough to attend. It was a hard service for Flo and I. We stayed and visited
afterward with friends and family for a little while.
On our way back into Chicago we stopped at a florist and picked out some special flowers. Our visit to Aaron's grave
site, as you can imagine was very sad. We still have so many unanswered questions. Why couldn't his life have been spared?
Why couldn't we get that one miracle? why?....I am crying.....why Aaron.
At 2:53pm we were right where we were supposed to be, in our livingroom where Aaron passed one year before. It was a
special and sad time for us.
We filled the rest of the day with things we thought would make Aaron happy. I set up Aaron's big G-gauge trains in his
playroom in the basement. Spent some time reflecting on his life at Aaron's pond in the backyard. We also read some very special
letters we had recieved from many friends and family members who took the time to respond to Flo's letter.
Thanks to all who have sent us e-mail, we are busy reading through them as well. A special thank you to Nathan Hultman,
Aaron's cousin, for sending us his favorite photo with Aaron. Aaron was so happy when he spent time with Nathan and his wife
Ellen, they had a very special friendship.
Good News! Aaron's Uncle John has finished assembling Aaron's Joke Book. It looks fantastic!. We can sure see why he
spent so much time on it over the last 10 months or so. Aaron's jokes overlay a background of Aaron's drwaings of space vehicles,
he drew many. This is no little book either, Aaron wrote many, many jokes. He said to us once "Since I can't play with toys
I will play with words". I can't wait to either have it published or if we can't have it published we will have a printing
company build the books for us. We will then distribute them to the Ronald McDonald House in Minneapolis, Aaron's school,
the library.... We are so excited about it. Thanks so much Uncle John you are a real hero.
Friday September 9, 2005
I am sorry for not getting an update here sooner.
Florence & I made it up to our families summer home. We spent 4 days in Walhalla, Michigan, Aaron's favorite place
in the whole world. From the time Aaron could walk he would do this little dance when we first arrived at the cabin, we called
it the dance of joy, he would only do it when we first arrived and never anywhere else. It was a pure expression of happiness.
We had a very difficult time going. We had to face the sadness sooner or later, so I guess were glad we made it. We spent
much of the time there crying. Seeing the bunk bed he loved to sleep in, photo's of him having fun during happier times, so
many reminders of him. We cried at the campfire, another of his favorite activities.
Florence spent her time doing embroidery on the front porch watching a wide variety of Hummingbirds dart back and forth
to our feeder.
I managed to do a little painting on the north side of the cabin and I did make it in for a swim, trying out the new
24' raft my brother Dean set up this summer. Aaron would have really loved that raft. I missed him so much I cried when I
got back up to the cabin because Aaron was supposed to be there swimming with me. I also fished for about an hour and caught
1 small bass, I enjoyed that.
In the photo section I have placed a photo from Wahalla.
I continued Aaron's tradition this summer of raising Monarch butterflies. He was always amazed to watch as they grew
from egg hatching to caterpillar then into their crysalis and his favorite was when they emerged as butterflies and he could
release them. We released about 35. See photo.
Florence is having more difficulty lately with her Lupus. It's beginning to impact her brain again. She has sent out
a letter to our family & friends requesting written favorite memories of Aaron. Flo's memories are only of the time Aaron
was sick, she can't remember the time when Aaron was well. This is because her brain has seriously been injured similar to
a frontal lobe brain injury. She has a very limited amount of space for recall and I think all of that was refilled during
the time Aaron was sick. Very much like a small computer running out of memory.
If you wish to call us and just chat we wouln't mind (not between 3-6pm Flo is resting then) we want to talk about Aaron
and his life as I said before we want everyone to remember him.
We we are approaching the first anniversary of Aaron's passing September 28. A mass is being held at my inlaws church
in Streamwood that day. I am already beginning to feel effects of this tragic day. Again my sadness grows deeper. It's hard
for us to imagine so much time has gone by, it still feels like yesterday to us.
A final note for those of you who knew my daughter Lisa was in New Orleans, the news about her and her husband Nathan
is they evacuated from the joint Navy/Airforce base they live on, just south of the city and spent the first days safe in
Houston. They are now in Baton Rouge. Lisa has landed a temporary job at LSU and Nate is finding volunteer work also
the Navy is taking good care of them too.
Thursday July 28, 2005
Today is the ten month anniversary of Aaron's death. To others it must seem like ten months to us
it was only yesterday. We cried and cried...
We have a fear that may be unfounded but we feel as if people don't want to talk to us about Aaron. To us it feels like
people are forgeting him. We want you to talk to us about Aaron, his life, the good memories you may have of him, whatever,
yes we may cry but we want to talk about our son. Please don't be afraid to call us because your call may "bring things up
again" or hurt our feelings it won't. We just want to talk about Aaron with people.
I have alot of catching up to do and I will try to do some of that now.
Back in May (when I began digging a hole for our new pond) Aaron's favorite girlfriend Kyra wrote us to share with
us a poem for the PTA's Reflections Program. The theme this year was, "A Different Kind Of Hero". Kyra wrote about Aaron,
here is her fabulous poem.
My Friend Aaron
My friend Aaron is a different Kind of hero,
in my eyes.
When I look up,
I see him in the sky.
Sometimes when I see,
butterflies pass me,
I feel he is with me.
I'll never forget how brave he was,
living with this horrible disease.
Aaron went through alot,
but he never gave up.
He went through a bone marrow transplant.
We hoped he would get better.
Aaron was brave to the end.
My hero lost his life last month,
but his spirit lives on in my eyes.
When I look up,
I see him in the sky.
Kyra'a poem was given an award at the district level and was sent on to the states PTA competition
where she recieved on April 30th, 2005 an Honorable Mention in the Literature Category. Thank
you Kyra your poem is held close to our hearts.
Oh well, I dug the pond everyday from May through June. On June 28th my brother Dean, brother-in-law John and our friend
Duane helped me finish the digging. After that I had to lay a layer of padding like felt to the bottom of the pond. Then we
added a rubber liner which holds the water in. John and I spent 1 day building up, one half way on the waterfall, the following
day Flo and I had finished it. Last week I was off on vacation and Flo and I worked for 7 days in a row on the project placing
all of the rocks around the pond (approx. 3 tons). See the picture page for a photo of the almost finished pond. I still have
to add plants around the back and sides of the waterfall. The pond has 6-Koi fish in it along with several other fish, schools
of minnows , a turtle, 1-frog and 7 tadpoles.
Saturday July 9, 2005
Well here I am again for those of you who still read our news.
After I last wrote, Florence & I went to our little memorial day parade. Well that was a big mistake. After we went
home it hit us both very hard. Seeing all the children running to pick up candy, those school mates of Aaron's that were in
the parade and the festive atmosphere were just too much for Flo and I to take. We did stay to see the end because Flo's niece
and sister were with us. But the after affect was devistating. I was in such bad shape I had to take a day off work.
Where have I been?
Well back in May I began digging in my backyard. I am building a pond. I dug and I dug. I dug every night and every weekend,
that was why I didn't get to Aaron's website, I found peace in working on this project. My brother-in-law John help me out
in June. Towards the end of the digging he also joined my brother Dean and friend Duane and on that last Saturday in June.
The digging was complete. However our work was not done as a big dump truck delivered a yard of stones which my sister-in-law
Betty donated to the cause. She works for a firm that delivers that kind of stuff. Well John, Duane and I moved that entire
pile of stones to the back yard, lucky for us we had a Johnson with us because as John and my backs gave up, Duanes just kept
going to see us through the end.
Next week Florence and I were supposed to go up to my families cabin for a week. But this past thursday night we
started talking about a funny feeling we were having about going. This was Aaron's favorite place in the whole world. We have
an opportunity to go again in August which we are going to do, but we are just planning an extended weekend. The cabin is
full of reminders of Aaron. Flo and I were afraid if we went now we would spend the entire time crying, which we will do in
August but I think we may be in a better position to handle it then. I know it seems like we are avoiding the inevitable which
we are, but still at this time it seems like the right thing to do.
I will spend the week finishing the pond. Right now the waterfalls are built and in operation, now we just need to finish
placing the stone around the border.
Wednesday May 25, 2005
I am sorry for not writing sooner. So much has happened. Florence & I went on a weeks vacation to Arkansas.
We stayed at Flo's aunts lake house in Cherokee Village. We had a nice time but I must add that the whole time we were there
everything kept going wrong. We ended up leaving a day early. I suppose we just aren't suppose to have a good time.
We have a trip to Michigan coming up in July, hopefully that will go better. We were going to go to New Orleans to visit
Lisa & Nate in August but because of this trip I am going to postpone going south until January when it's not so hot down
there and just stay home in August no traveling.
It may seem to other people that there is some time between us and Aaron's death. Well to Flo and I it just seems like
we lost him yesterday. We are doing everything we can do to get through each day. It's hard to find a reason but we are day
by day. Florence is making alot of blankets, this keeps her occupied.
I finished refinishing our bathroom, new tub, surround, wallpaper and a new vanity light, and a fresh coat of paint on
the ceiling. Now I am well into my next project. I am putting in a water feature in my backyard in other words a pond.
Yes it will have fish! This keeps my mind busy and my body aching.
I still think of Aaron every moment I just can't stop I miss him so. Flo and I are still suffering so much, we still
don't understand things and I know we never will.
Friday April 22, 2005
We have put some time between our selves and Easter. It was bad. Now we are beginning to feel just a little
relief from the overwhelming crush of grief, though we still cry each and every day.
Last weekend we had to endure taking Aaron's fort and swingset down. We were going to move it to my sister-in-laws house
and I was even kind enough to go out and rent a Buget 10' truck but we still failed to get it in the back of the truck, the
fort was just too big. This was all a traumatic thing for Flo and I afterall I built that fort with my father and never in
a million years would I have imagined I would be taking it down. That was a very sad day for us. And the fort remains in our
backyard still. Hopefully it will be gone soon.
Aaron's tree is getting it's first leaves it exciting to watch, in a couple of weeks it should be covered with red leaves
before they turn green. I will try to post a photo of it.
Thursday, March 31, 2005
Well what can I say the Easter holiday has come and gone. For us it was worse then we could ever
have imagined. Both Flo & I experienced a deep deep sorrow. Is it because of the spring and all things coming up a-new
or the resurrection?, we don't know.
We had a short vacation to the Mammoth Cave area of Kentucky. We did several cave tours the longest was a 4-mile 4 1/2
hour climb through Mammoth. The week went by quickly, and we cried during a good portion of the trip.
We miss Aaron so much. It seems like we lost everything when we lost him.
Wednesday, March 16, 2005
No Easter basket over flowing with wonderful surprises, no Hot Wheels, no hidden eggs full of goodies,
no Peeps, no coloring eggs, and no Easter egg hunts. Florence and I are not celebrating Easter.
Last Easter Aaron was so worried because he didn't believe the Easter Bunny knew that he was up in Minnesota. Well he
didn't know that I had smuggled in his familiar Easter basket and all the goodies. He was becoming quite disabled by this
time and when he found his Easter Basket he was so happy he just sat next to it and smiled. He had to call me in Chicago to
tell me the Easter Bunny found him, he was almost in tears.
I thought I would be spending this Easter with him instead I missed his last Easter because I was in Chicago.
I would like to ask Jesus exactly why Flo and I have lived through nothing but shit since we were married. And it is
not because we didn't pray to him, we did daily! None of our prayers have ever been answered.
Why did Aaron have to suffer longer than Christ did before he died?
Don't worry we won't get any answers, we never do.
Jesus can do anything? I quess he wants Flo and I to continue to live through hell.
Saturday, March 5, 2005
Well we have passed the 4 month anniversary of Aaron's passing, to some people it may seem like a
while but for Florence and I it seems like 4 minutes ago. It was pointed out to us by our pastoral counselor that others around
us are moving on down the recovery road but that Florence and I are back at the start date and we will be there for as long
as we need to be.
I am feeling a little better than I was when I wrote in February.
Florence has begun working on her PTSD, though even today she again was experiencing the flashbacks, it's just awful
to have to watch her suffer so.
On the homefront the news is my father & I are replacing the bath tub and surrounding walls. As of this writing the
shower has not functioned since Thursday morning! Yikes... Hopefully by Monday it will be back up and running in. (Flo is
going to her folks house to shower tomorrow). I will also be installing a new vanity light (on a plaster wall..yuck) we will
finish the job with new wallpaper along with a fresh coat of paint on the ceiling. All other fixtures are new, so it will
be a completed upgrade of our bathroom.
For those of you who wrote or write to Florence I just wanted to say thank you. I think it really helps her spirits.
We love all of you who continue to stay with us through this website. I will try to write sooner.
Thursday, February 17, 2005
Well we had to make it through Valentines day with no little construction paper cards or artwork,
it was a sad day for us.
Very sad days is something I have been forced to handle since last thursday. I am not sure what happened or exactly why
but it seemed as if the bottom fell out of my heart and once again was plunged deep into an overwhelming feeling of utter
depression. I feel like the coyote on the road runner show. Going along feeling just a little better when that big rock plunges
from the sky and pounds me down into the earth. Thats exactly how this happens to me. With little or no warning POW.
I have been given some reasons why this may happen and I guess it is mainly do to Gary always watching out for Flo. I
am worried about her, I focus on her, I try to help her, sometimes forgeting about how I might be feeling. I bottle up my
emotions inside to take care of my family. Then for a moment in time I don't worry about Flo as much, and whammo
my emotions come flooding out.
We pray every day that we will feel Aaron closer to our hearts. Right now neither Flo or I feel Aaron's presence in our
hearts and home, we so badly want to. We are having an extremly hard time coping but we will continue to try to take
each day at a time.
Nathan leaves for Bahrain this coming Tuesday. His flight is going to layover at O'Hare for 4 hours Tuesday afternoon,
so we are going to go out and meet him and bring him lunch. Good news also for Nate he passed his Chiefs test. Now that he
has made the board in a couple of months a board of senior officers will review the candidates and select the best to be advanced
to Chief Petty Officer. We know Nate will be selected.
Saturday, February 5, 2005
One year ago today Aaron recieved his transplant.
It's a very sad day for us as we look back at a time when we were filled with so much hope. And we still don't understand
what went wrong, why the transplant did not work. We still can't believe Aaron's gone. We still wish he would come back.
Florence & I are both struggling day to day. Please pray that Florence finds some relief from the devastating Post
tramatic stress disorder. She almost always is seeing pictures in her head of Aaron when he was suffering so and she can't
get these flashbacks to stop. It's very sad to have to watch her in such intense pain. I am powerless over PTSD and wish I
knew how to help her. None of Florences memories of Aaron are of happy times. She can only remember the worst of times and
this is what is constantly running through her mind.
Today was also Aaron's dog Corky's birthday he turned six today. We had a special dog food cake for him (you can see
it on the pictures page).
If you read this and you have time maybe you could send Florence a note telling her your thinking about her, I don't
know maybe every little bit of help we can muster is needed. At times Florence feel's like she is not going to survive this
and that she is just lost sitting doing her crocheting. She said tonight she hates her life. I know the feeling.
Keep her in your thoughts and prayers. Thank You.
Tuesday, January 25, 2005
I have no date yet for Nathans departure to Bahrain.
We have yet been given a new challenge that we must over come. Florence was diagnosed with Post-traumatic stress disorder.
She has been having serious flashbacks to the final days and moments of Aaron's life. She sees multipal pictures in her head
of Aaron, when this occurs she feels as though she is going to colapse. I was very worried about her before we knew what it
was. She just kept telling me about these terrible pictures she was seeing and I felt quite helpless as to what I could do
to help her.
With PTSD Flo is repeatedly re-experiencing the frightening ordeal of Aaron's final days leading up to his death.
When Aaron could no longer walk, or when we couldn't understand what he was saying or the sound he made when he was having
trouble breathing. When this occurs Florence feels as if she is going to collapse. She sees very vivid images as if they were
on a HD-TV. We hope through therepy that one day she will see these images more like a black & white image, something
she can handle, but this is going to take some time to recover. But in the meantime these pictures can be triggered by
many things in our home.
I just pray that we can get her through this. In the meantime she continues her crocheting.
Tuesday, January 11, 2005
We have news about my son-in-law Nathan. He is being called up to return over seas to a Navy base in Bahrain.
Bahrain is a small group of islands. The main island is named Bahrain, it is just east off the coast of Saudi Arabia. Most
of the smaller islands are uninhabited and are known for a variety of migrating birds.
Bahrain is an American friendly nation. The base there is secure. Nathan leaves in one month and his orders
are for a 4 month stay though that could change. Lisa will stay in Belle Chase a suburb of New Orleans while Nathan is gone.
Flo & I watched a little bit of video I shot of Aaron starting in June of 2004. The 10 minutes we watched were difficult,
but we were hoping to just try to remember the joke telling, face making Aaron to help erase memories we have of him suffering
at the end of his life. It may have helped a little, I don't know.
Monday, January 10, 2005
Sorry for the long delay in me getting to this update.
New years was another very difficult holiday to get through. We went out to Flo's parents house, went out for a nice
dinner and spent the evening back at their home. Saying good-bye to 2004 was hard because in 2004 we had a son.
My daughter Lisa and her husband Nathan came in just for the weekend from New Orleans. It was nice to spend a little
time with them. The high point of our weekend was a trip over to Skokie, IL to a Cigar shop called Cigar King, we enjoyed
a complete cigar tour by a host at the store. We shared nice Christmas gifts with each other. Lisa and Nate got a chance to
visit with both sets of grand parents. Were so proud of Nathan he was nominated for Sailor of the Year in his division!
Also he is studing for a test in a few weeks which could qualify him for Chief Petty Officer.
It was so hard to say good-bye this morning as I dropped them off at O'Hare.
Our struggle continues every day. We cry every day. We keep praying and hoping Aaron would just give us a sign to let
us know he's with us.
I know we need help during this most depressing season, please continue to say a prayer for us. We thank you for
Monday, December 27, 2004
The worst Christmas ever.
Christmas eve we went to a 7:30pm christmas service at our church. We attended with Flo's Mom & Dad.
They said "There was no other place they would rather be than to be with us" that was very special to us. Aaron's photo was
set up on the alter with a candle burning brightly. The service was wonderful.
But later that night I commented to Flo that this was the first Christmas eve that didn't feel like a Christmas
eve at all. There were no stockings hung, no Aaron, no children. I never had a Christmas without great expectations and excitement
over Christmas morning. Its a very empty feeling. Christmas eve and Christmas are no longer going to be happy events.
Forever I must get used to this new Christmas reality.
Christmas morning was hell we woke up and after getting a cup of coffee went out to the tree to exchange our gifts and
within minutes we were crying so much, we miss Aaron.
On Christmas day we hosted all of Flo's family for a big Christmas day dinner, everything went very well.
The next day we went to my cousins house in Orland Park, they hosted the Hultman family with a great dinner. At each
event everyone was so surprised when Florence passed out the blankets or throws she had crocheted. Everyone loved them. She
made and gave away 15 of them.
Sunday morning we visited Aarons gravesite. A friend of ours had left a little stuffed animal (a frog) at Aaron's headstone
it was very thoughtful.
Now we have to get through New Years.
Tuesday, December 21, 2004
With the holiday approaching we are having a difficult time, and we should be. I have been hit again with
deep sadness that I have a hard time overcoming, it makes my day very long because it seems like I am swimming up stream but
the current sends me back further. I ask Aaron to help me and I suppose he is because I don't think I could do this on my
own without him somewhere saying "come on daddy you can do this."
We are not looking forward to Christmas morning that will be the worst. But later that day we are hosting all of Florences
family for a Christmas celebration. The event usually takes place at Flo's parents house. But having it this year at our house
is given us a reason to decorate plus we hope we are closer to Aaron's spirit.
I will be posting a few Christmas photos of Aaron so watch for that in the next couple of days.
For those of you that continue to read this I want you to know that I feel really great when I get an e-mail
or I see someone and they say they read my updates, in some way I think this helps me. And it's nice to keep
in touch with those of you that have supported us all this time.
Saturday, December 11, 2004
Another week closer to Christmas something Flo & I are not looking forward too. I am not sure how much
worse it can get.
Florence & I made it out to our first party. Many of my co-workers at Pioneer Press met at a pub for a holiday party.
We had a very nice time, it felt good to get out and laugh a little. But just that 3 hours left us with little energy to spare
today. We were out past 11pm. We are usually in bed by 8 so we were worn out. It took alot out of us just to get ready and
go to the event, it's hard for us to do. Inside we don't feel like going but we sort of have to force ourselves to do things,
but we agree we have to pace ourselves and not make too many commitments on the same weekend. We are taking baby steps as
we go forward.
Well I am adding a couple of photo's of Aaron's train under our Christmas tree.
Saturday, December 4, 2004
Well this past week started off fine but quickly became very bad. Florence & I were both crippled with
grief once again as if Aaron had just died. I am telling you it hit us just like lightening. Now looking back at the week
we believe that our beginning to decorate the house for Christmas was at the root of our depression. I unpacked our trains
to set one up under the Christmas tree this morning and I just cried and cried. The last Engine that Aaron bought with his
own money is the one that is going to lead the train for the rest of the season.
I struggled so to get through the week. I keep asking questions;
Why Aaron, why did he have to get this disease?
Why didn't the transplant work?
Why weren't our prayers ever answered?...
It doesn't help, I am still left with so much pain. I am reading a book right now called The Worst Loss. It says that
human beings do not have a worst stressor than lossing a child. I can believe that. Florence & I are going though hell.
Small steps. This morning I also went out very early for a mens breakfast from our church, they gather monthly and this
was the first time I attended. Also we are going to try to make it to church tomorrow for the first time since Aaron died.
Friday, November 26, 2004
Aaron's headstone was placed this past week. You can see it in the photo section.
Flo and I continue to struggle very much. We have been up against the events of last year at this
time. The day before Thanksgiving was the day Aaron fell over in school and began to have a seizure. Thanksgiving day we spent
in the hospital, and the day after Thanksgiving we found out that Aaron had ALD and were simply told Aaron would die. These
are hard days for us. It hasn't even been 2 months since Aaron died.
Friday November 12, 2004
Tomorrow is Aaron's birthday.
Saturday November 13. He would be nine years old. We are going to visit his grave site and then we are going to lock
ourselves away in the house. All the pain is right back at the surface again. I don't know how were going to get through it.
Friday November 5, 2004
Florence & I managed to escape from our harsh reality this week. We spent three days at White Pines
Forest State Park. We rented a little log cabin. It was nice to get away. The weather was bad but we managed to hike about
6 of the trails in the park. When it was raining on our second day (it rained all day) we went into Oregon, IL and did some
shopping at a cool native american store. Then back at the park we managed to build a nice fire out in a shelter that had
a fireplace in it, that kept us warm. It would have been nice just to stay there a few more days, it was difficult coming
With a donation of some funds from my cousins and some of our money we purchased a Red Oak tree that was planted today
in Aaron's memory at his school right across the street from our house.
All the children from Aaron's class came out along with teachers and the Principle. Florence & I both placed the
first shovel full of dirt in the ground. It was like a dedication service but not that formal. Grampa Roy then hauled 10,
5 gallon buckets of water from our house and soaked the roots. Our local newspaper was there but we will have to wait to see
if they run the story in our local paper.
Flo & I are going through hell. I now know just how long it may take us to recover and that isn't for a long time.
We can't even pray about it but maybe you could pray for us. I don't know how we are going to survive the trauma. A week from
saturday is Aaron's 9th birthday.
Sunday October 24, 2004
My second week back at work was very difficult. The people there are all ssoo understanding they couldn't
be better, it's not them it's the confusion I feel in my thinking. Maybe I returned to work too soon?
Tuesday afternoon, exactly 253pm the exact time of Aaron's passing I had run home so that I could
sit on the couch where he died three weeks earlier. I held his picture, Flo held another picture and we just cried & cried.
We miss him so. I did this in hopes of making the rest of the week a little better. It didn't really help.
Saturday at Flo's parents parish they held a special mass for Aaron. It was very hard to get through it.
The service brought us right back to where we were a couple of weeks ago. But so many people from that church were praying
for us and coresponding with us that it was an honor to not only share in the joy of Aaron's life with them but to also share
in the sorrow of his death.
I took a personal day Friday so this has been a 3 day weekend for me and I think that has helped me. I
got a few things done around the house. I have so much more to do to be ready for the winter. I will get it done a little
at a time.
I keep thinking Aaron is at a friends house and he will be back, or he's just in his playroom and then
I always realize he's gone and that these are the very difficult and confusing things parents like us go through. It's hell.
Friday, October 15, 2004
Our hearts are so broken. When we turn and walk down past his room it's only natural for us to expect to
see him, but he not there. It was just yesterday we were celebrating Aaron's birthday last November and then in the blink
of an eye he's gone. It doesn't make sense to us. What happened? Why did this have to happen to Aaron. I don't know how Florence
& I are going to get through this. It is so painful.
I just finished my first week back at work. It was not easy. I did not fall apart once in my office. I hope next week
is as kind.
I spend my nights crying. Wishing I could see Aaron again just for a while.
It won't happen. I know he is in my heart. Maybe I will see him again someday. I hope so.
I put a few new pictures up.
Wednesday, October 6, 2004
Florence & I are having a very difficult time as we miss our little Aaron so much. But I wanted you
to know to watch this news space as we will continue to update it for as long as we need to. To review the events leading
up to Aaron's death, please see the Aaron's Passing page on this web site. Also, you may wish to read Aaron's Eulogy, that
too is on the website now. The jokes are all written by Aaron.
Tuesday, Sept. 28, 2004
Today, Aaron Robert Hultman died at 2:53pm. Aaron had a very difficult final 6 days. The disease caused Aaron much suffering
during the final 6 days, the worst of which were the final 48 hours. At the very end Aaron found peace and freedom from
this dreadful disease.
Thursday Sept. 23, 2004
The day we never wanted to come is here. Aaron is no longer consious. He's vomiting and has asperated some
of the vomit. Aaron has been having siezures all day. Father Paul & Pastor Dave Jones gave Aaron his final blessing. Aaron
is breathing very shallow as if he is too weak to breathe and he probably is. He is dieing now. The entire hospice team has
been here all day working to maintain Aaron's comfort. He could pass tonight or as late as a week from now but they don't
believe he will make it past then. Please keep us in your prayers.
Saturday September 11, 2004
I have lost all my incoming e-mail from the last week would you please write again? Thank you!
This has been another bad week. I have been unable to understand much of what Aaron is saying for
the past week or so, I do get a few words in here and there. The bad news was Thursday & Friday Flo began having a hard
time understanding Aaron. Maybe this is our next burden. Unable to hear what Aaron is saying will really make the impossible
even more so. I can't tell you how bad life will get if we don't know what Aaron wants to eat! or all of the other words we
have been hearing. He can't hear us, this is crushing us I don't know what we will do.
We failed to get proper sleep again this week. Aaron was back to waking up at 2 or 3. He has a sleeping pill he takes
but as soon as 8 hours is up, so is he. Today he woke us at 3am.
To make matters worse we are pretty sure Florence re-fractured a rib that broke a couple of years ago. Bending over and
lifting Aaron is hard to do now that he weighs over 100 lbs. She is wrapping it and putting a heating pad on it. Her foot
too still is painful but thats getting better.
So tomorrow is Aaron's big benefit here in Chicago. We are excited. Flo & I will take turns going. She is going from
1-2 or so and then when she comes home I will go. That will be very good for Florence and I, because we don't see what all
these folks are doing for us. We are just here dealing with Aaron, ALL THE TIME. So we will enjoy seeing all of our friends
and family and people we don't even know.
Friday September 3, 2004
Big scare last night. I have been using the wheelchair to get Aaron from bed in the morning out to
the couch. At night we help him walk to bed to make him use his legs. Last night we gave Aaron a sponge bath near the couch
so he doesn't have to walk far and it involves some sitting and standing on his part. As soon as we were done with his bathing
he took his nightime meds and we walked him to bed.
In bed Aaron began to tremor. His whole body was shaking but he was not having a seizure as he could still say words
and try to talk to us. His breathing was fast and short. We pulled a blanket over him but that did not stop the tremor. They
subsided in time. But in the meantime we thought Aaron said "I'm not ready to go yet" we were so scared and crying and didn't
know what to do except sit there by his bed and be with him. Finally 2 hours later Aaron fell into a deep sleep, his breathing
had returned to normal the tremors had gone an hour earlier.
We don't know if Aaron knows his fate. For a few minutes last night it seemed like he did. But we can not be sure that,
that is what he said. That's what it sounded like.
Needless to say tonight (Friday night) I was not going to take any chances I used the wheelchair to get Aaron to bed.
I still think that maybe when Aaron is up on his feet too long his brain begins to short circuit cuasing the problems we experienced
last night. Hopefully Flo & I will sleep tonight.
Tuesday August, 31, 2004
No Sleep. During our last week, without much warning Aaron began waking up early in
the morning, and once he is awake he thinks it's time to get up. Last Friday morning he woke up at 2am. He did not go back
to sleep nor did he take a nap that day! Later that day, one of Aaron's nurses was here and she arranged for Aaron to get
a sleeping pill at night. So far it seems to be working.
The other twist to our week has been the inability to understand what Aaron is saying to us.
For the last 5 days I have had a very hard time understanding what Aaron is saying to me. For the most part Florence can still
understand about 80% of what Aaron says. Aaron's voice is very very soft. I hope this is only temporary, it breaks my
heart to not be able to understand him plus that just complicates so much. If he is asking me for something to eat and I can
not understand him, I don't know what I am going to do.
Florence continues to recover from her foot surgery, it still is very painful. The pain gets
worse when she has to do a routine of toe movements several times a day.
Sunday August 22, 2004
Florence is recovering from her foot surgery very well. Since I last wrote we have had numerous
people come over to help Florence with Aaron get through the day while I am at work. One person who I failed to mention, who
has helped us out many times is Flo's sister Margaret. She has been here through many of the tough times we face everyday.
Aaron is always asking if Aunt Margaret is coming over too.
Aaron is still getting sick to his stomach in the middle of the night. Saturday morning we
woke up for the same reason at 2am. Aaron thought it was time to get up. We tried to tell him it was the middle of the night
but he could not understand, and was going to climb off his bed with or without us. We changed him out of his wet clothes
and got him dressed and began our day at 3am. He did not nap the entire day.
He had lots of visitors during the day. His friend from next door Erin came to spend time
with him. Aaron's Uncle Dean came in from Porter, Indiana for a nice visit. A very close friend of our's Micheal Byrne from
Hollywood flew into Chicago just to spend the day with us, he flew back home this morning. Then during our day, Coleen
our neighbor had arranged to have her beutician come and cut Aaron and Florence's hair, thank you Carla for that great donation
of time and service. This was Aaron's first haircut since his hair began to grow back, so he looks real sharp now
So as you can see we had a very busy Saturday. The three of us recovered peacefully today.
And so another week has gone by with its ups and downs. It was sad for me to know the Chicago
Air Show was this weekend and for the first time in 4 years Aaron & I would miss the show that had become a father
& son tradition.
Saturday August 14, 2004
Last Saturday we had quite a scare. I was going to give Aaron his sponge bath in our bathroom. I
guided him by walking backwards in front of him holding his hands. As we turned into the bathroom Aaron sat down too soon
and went all the way down to the floor, I was still holding his hands so he went down gently. Then I called my brother-in-law
John to come quickly to help me lift Aaron up and onto the stool. Once we moved him Aaron had passed out, gone. I gently slapped
his face saying "Aaron, come on Aaron wake up buddy". Well for 5 minutes John, Flo & I all held our breath waiting to
see if Aaron was going into a seizure. Well he finally began to come out of it. We were all relieved that we were not
calling the paramedics again.
We figured out that a possible trigger for Aarons seizures is motion, (like walking down a hall) so now we are moving
Aaron around the house in his wheelchair.
Florence had surgery on her foot last Thursday and is recovering from that now. She does not slow down well. But she
has to stay off her feet for 1 week. Needless to say she has put a few miles in since thursday, but thats down from her usual
100. She hates having me wait on her so I think her foot will recover in record time.
We do have lots of help scheduled for the next 2 weeks during the days when I am at work, to help take care of Aaron.
Friday August 6, 2004
Just a short addition to the below update.
We ended this week with Aaron again having no feeling before urinating so were back to pull ups and wrestling them onto
a 90lb. boy.
I hope to put up some more pictures now.
Wednesday August 4, 2004
Sorry I haven't updated this lately. We have been very busy. Over the last 10 days Aaron's care has
really been intense.
The good news is that Aaron regained a slight bit of his sight and once in a while he can hear us.
During this time, Aaron had lost the ability to know when he had to urinate so we have been dealing with childrens pull
ups to help Aaron stay dry. Just last night he was able to tell us he had to go to the bathroom maybe 3 out of 5 times.
He seems to be getting a little better.
Aaron's half sister Lisa came up with her husband Nathan from New Orleans were they live on a Navy Air Base.
Aaron was so excited when he was able to understand that the person sitting next to him was Lisa. We had an outstanding visit
with them, they helped out with Aaron during the few days they were here. It was sad to say good-bye as it always is. Lisa
say's she will come back soon.
And as if we didn't have enough going on Florence has to have foot surgery on August 12. So we are lining up our
families to help out during her recovery.
Aaron's care is very hands on and hard to do because he will say he wants something to eat and every time you bring what
he wants he takes a bite, spits it out and request something different this can happen several times until you just give up.
It's very frustrating. Plus he always wants his best friend to come over or one of his favorite Uncles.
Then when his best friend Adam comes over we can't get Aaron to even know that Adam is there, it's very sad, because
we have no choice but to send Adam home. Adam is the best friend Aaron could ever have. He is so understanding of Aarons condition
and takes it in stride, and continues to be Aarons friend.
Sunday July 25. 2004
Last Saturday night (July 17) Aaron was awake most of the night very sick to his stomach, this continued into Sunday
(July 18) morning.
We had critical medications that I knew Aaron had to have, but he did not get any break where I could have him swallow
his pills. Just after 10:30 Aaron said "Help me dad" and then went limp, I knew he was having a seizure because his
chin was twitching in a funny way. I immediately began to give Aaron emergency medications to stop the seizure, it did not
Aaron was no longer consious. I could not get him to my van so we had to call 911. The entire Chicago Fire department
showed up. They radioed for special permission to take Aaron out to Lutheran General Hospital, that is where all of Aaron's
In the ER they began giving Aaron test, like he had an CT scan, and many other test. Drew blood for testing. By this
time Aaron's seizing had stopped but he still was out of it, just limp. We had early hopes that the emergency meds I gave
Aaron would take effect and help Aaron wake up again. No luck. They admitted Aaron later that day.
Monday morning all hell breaks loss. They were giving Aaron a EEG to see if Aaron had any seizure activity in his brain,
the test was going fine no sign of anything unusual, and then wham Aaron had a full blown grand mal type seizure it only lasted
seven minutes, his body temperature shot up to 104 degrees snd his heart rate was 200. We thought the worst. And even
though the seizure may have only lasted seven minutes the damage by then was done. Aaron would have 2 more episodes before
his body stopped. He was sick with a very high temp, and for the first 2 days he was still sick to his stomach.
Aaron had to have many test like an MRI and spinal puncture and more. For the next 3 days we watched as Aaron fought
what now seems to have been some form of a virus. His temperature remained high and he was unconsious for three days, we were
afraid he wasn't going to come back to us.
Thursday his fever broke and he began trying to speek but we could not understand him. We did find out something from
Aaron, he now is totally blind.
On Friday he had no temp, no vomiting and no seizure activity so they decided to discharge Aaron and we brought
Saturday was a very difficult day with him just because of his blindness, and the fact that he can not hear us at all
anymore. The seizures pushed Aaron's sight and hearing (what he had left of it) over the edge.
He now says are you my real father? I place his little hand on my cheek and have him rub my scratchy face and shake
my head for yes.
Sadly Aaron will be entering hospice. We have already begun that
Saturday July 17, 2004
I was surprised to find that my website is missing the entry from
July 10, 2004 not sure where it went.
Well, I will try to fill in the blank here. I have returned to work full time at Pioneer Press. All of my co-workers
and staff expressed their sadness. I work with the greatest people at the best company. Everyone helped me to feel very comfortable.
At home we have been fighting a rather new battle, Aarons digestive track has been trying to get back to processing food.
(Aaron still receives his hydration and nutritian from his IV every night) We are encouraging more food in the hopes that
at some point Aarons catheter could be removed. Maybe we're foolinf ourselves but it would be nice for him to no
longer need it. He could then go swimming.
So as we try to introduce foods he is frequently sick to his stomach or stuck on the commode.
Last weekend was the worse, today was a little better. Aaron too, is learning that if he has some candy like Skittles
he is asking for trouble so he is avoiding the candy now.
Aarons sight is now very close to being totally gone, it seems to come and go as his hearing did. He is now deaf. Rarely
can he hear anything. Our sign language came too late, we are now trying to use plastic letters to help communicate to him,
he can still talk to us.
I am really upset that my last entry is gone, I hope this one will appear. And I feel as though I am fighting to
write every word tonight so I am going to say go for now.
One last thing Aaron can't walk but he crawled from our livingroom to the kitchen being guided by Flo, Aaron was so proud
when he made it to my side. That was an accomplishment for him. Later I just cried.
Monday July 5, 2004
The Disney trip that I held out so much hope for turned into a real mess. We learned just how much
vision Aaron has lost over the last 6 weeks, but we learned that a little too late. Had we taken this trip just 4 weeks ago
the outcome may have been different.
The first day we went to Epcot because Aaron wanted to go on the new Mission Space ride. Everything went OK,
Aaron loved the ride. There is a video monitor about 2 feet from your face very easy for Aaron to see. We were then
forced back to our room by some real nasty thunder storms.
We thought we would try again on our second day. We had a full day planned at the Magic Kingdom. Our first ride was on
the Pirates of the Carribean. Aaron struggled so much in the darkness of the boarding area just trying to get in the seat
he was crying, very frustrated. Then as we went through the ride he continued to cry saying "Why is it so dark in here I cant
see anything where are we going and why are you doing this to me" We were all very shaken by the end of the ride. We had 6
more rides to go but all were in darkness, Peter Pan. Winnie the Pooh... All rides were canceled out Aaron didn't feel
like doing anything but to go back to our room at the resort. We were all very sad at this point.
The week did not improve, our trip to the Kennedy Space Center happened but Aaron could not see the big rockets he could
only see the engines and capsules they had close to the ground. After a bad experience with our "lunch with the astronaut"
we headed back to Disney. We did not see the launch of the Atlas II I spoke of earlier.
There was not even one night were Aaron could stay up for the light parade or the fireworks.
Now, understand we did have good times. We had 10 or so birds that would show up everytime we went out on
our patio hoping to get a few potato chips. One day we played with a latex glove that I blew up like a balloon, we had a riot
with that, for about an hour and a half. And the last full day we were there I took Aaron over to a zero depth pool and we
went into about 2 feet of water and just sat there, but to Aaron that was real fun. (I was careful not to get his Hickman
cathater wet) Aaron can not go deep because of his implant.
Our check out time was 11am friday our flight out was not until 8pm that night, again Aaron did not understand why we
were not going directly to the airport and getting on the plane home. Very upsetting day.
The Make a Wish foundation was outstanding for helping us make the trip happen.
We were happy to get home, and sadly know we can never do that again.
Thursday June 24, 2004
A great man named Scott Anderson works for a restaurant group called the Clean Plate Club, they own Pete
Millers Steak House, Merles Ribs and the Davis Street Fishmarket in Evanston. He had an idea to sponsor a fun raiser by selling
what he called "Aaron's Dessert", a dessert (vanilla ice cream with chocolate sauce) in Aaron's honor. The fundraiser raised
over $4,000. for the Aaron Hultman Fund. Wow! Florence and I are overwhelmed with their kindness and generosity.
Some of the money raised is going to help pay for a new wheelchair for Aaron. The chair we use today is one of those big clunky
ones they use at hospitals. Thank you Scott.
Well, this week we began to broaden our sign language. We had a teacher stop by to help us with the basics.
Aaron needs to learn sign language so he can understand us. He can speak to us. He will have to feel the signs
in our hands and face when he is blind. Aaron is losing his vision.
He was so excited when he found out that a limosine is coming to pick us up Saturday. We are almost all packed for our
trip. We have some really great friends who are going to take care of the house, and Corky of course.
We have had to deal with a great amount of sadness this week. Aaron wishes people could know just how much pain
this has caused him.
Aaron just does not understand why this has happened to him, he says, "It's not fair it's just not fair" no Aaron what
has happened to you is not fair ALD is taking your entire world away from you and will eventually take you away from us.
Saturday June 19, 2004
Yes the week was extremely busy again. One of the highlights of the week was a picnic Aarons class had in the front yard
of the school. We took Aaron over in a wagon. His classmates were happy to see Aaron again. They presented him
with a white baseball type cap that had AARON printed over the bill, and everyone in his class signed it.
This week while Aaron was at home playing with a friend Aaron was motivated to follow his friend Erin.
The only way he could do this, he discovered, was by crawling. Well, they both crawled, he crawled around the house a
few times and he was quite pleased that he was mobile under his own power, he had fun too! But the following day was
he ever sore.
He can not walk without serious support & guidence.
The Make a Wish foundation is sending us to Disney World next Saturday. Just like that, they are making all the arrangements,
taking care of all our medical concerns directly with Aaron's Doctors and us. We were told that next saturday a Limo will
pick us up from our home to take us to the airport. We can pray that Aaron has the best time of his life. Make a Wish is also
arranging to have us at the Kennedy Space center on July 1st. The same day an AtlasII rocket is scheduled for lift off. Wouldn't
that be great for Aaron to see. Plus were going to go to Mission space a new ride at Epcot. But there are many rides Aaron
will be restricted from. Any ride that whips his head around is out.
We are hoping that the event is a success. I am thankful we are going while he can still see, to a degree.
Saturday June 12, 2004
So another week has flown by and we are far from having any order to our daily routine. Every day we have
been meeting with doctors at Lutheran General Hospital or nurses or home health nurses or social workers, school prinicpals,
teachers, OT & PT. A case manager from a federal program to help access Aarons disability needs, they are the people
who are going to start training us in sign language, while Aaron can still see. We will also be teaching him to feel the signs
with his hands as well for when his vision deteriorates.
The worst part of the week was Tuesday morning when Aaron discovered he couldn't draw a picture, there was nothing we
could do but to hold him while he cried out "I used to be a good artist, and now I can't even draw the sun" he asked God why
was this happening to him. We had our 2nd episode with drawing again on Wednesday morning thankfully Aaron's social worker
could fly over to our house to help us deal with a very upset child. We are now offering to either draw the picture for him
or we are using other things for Aaron such as clay or a large stamp pad set for him to try to express his creativity.
Aarons teacher is now visiting him 3 days a week and she too is helping us find ways for Aaron to express his artistic
talent. She is wonderful and Aaron just loves her so. She spends one hour with him each day she is here.
I wish I could tell you what a day in our lives is like right now, but it would take me too long. We are trying to get
Aaron to eat food, at the same time we are battling with his stomach becoming upset every day food or no food. He is still
dependent on his IV for hydration and basic nutrition which he gets in the overnight hours. He can not walk so when he has
a need to go to the bathroom we have to be there for him, jug in hand. He can walk but we need to literally hold him
up. Its difficult for him to get to the car, he has the eight front stairs on our house he has to go down then a short walk
to the van, and then we use the wheelchair that we have for him at the hospital.
The highlight for him this week was I put him in a wagon yesterday (he didn't want to be seen in a wheelchair) and I
took him across the street where his school was having an out door party. Aaron was able to see his classmates, he said hello
to many other kids too (they all knew him through their fund raising efforts) and staff.
Florence has been having lupus produced headaches all week the worst type she can have. I hope this week is better for
Saturday June 5, 2004
We began our week at our little Norwood Park memorial day parade. It was sunny and nice out. Well, you guessed it,
it rained on our parade. A storm blew up so fast, I was trying to hang onto an umbrella that was over Aaron as I hurried him
(in his wheelchair) back to our house. I was soaked to the bone.
Aaron saw an Eye doctor this week and his eyes (like his hearing) are working fine, except for the ALD putting pressure
on the nerves somewhere causing Aaron to have allot of visual problems. He can not walk without our assistance because he
is so unsure of his footing. This morning he fell over as I did not have a very good hold of his forearm, luckly he didn't
We are struggling, trying to get this whole home health program in order, we are far from our goal. We experience caos
at least once a day and thats taking a terrible toll on Florence. So I tend to care for Aaron which is a full time hands on
position, while Florence is managing, meds, Drs., appointments, eob's, Aarons IV and so much more.
In the next few of weeks we should be caught up enough with all of the detail work so we have some kind of plan
& program in place.
We suffer each day with the burden we carry, today I had to empty my shed so I could get out some screens for our home.
Most of what came out of the shed were Aaron's summer toys. Toys he can't use.
Sunday May 30, 2004
We tried to go to church today, we made it but it had rained so hard on us (of course) we had to
leave early to get Aaron into dry clothes. Pushing the wheelchair in the driving rain was just wonderful.
We have had a steady stream of visitors to see Aaron but we schedule it so it's not too much on us. If Aaron gets tired
and takes a nap we all do.
I know Aaron is loosing his sight but I just hope that the disease gives us a chance to learn how to talk to him
first. (But that is probably asking too much.)
I saw further evidence today of just how hard it is getting for him to see. My gut tells me it's going quickly. Maybe
not seeing my tears will be a good thing.
Aaron was granted a wish, through the Make a Wish foundation.I hope he can enjoy seeing Disney World on the trip we hope
Thursday May 27, 2004
Flo's Mom, Dad, Aunt Pat & Uncle Bob sure did a great job cleaning & preparing the
house for our return last week, that was a big help! Flo's mom came over again today while we were at the hospital and sorted
through 7 shopping bags full of food, much of it unopened. She also brought us a new vacuum that she and dad got for us, one
that really works! I am throwing the old one out! What a great job she did cleaning the house we are so thankful for their
Also I found our good friend Audrey planting more flowers around our home today. That is something I am missing, working
in my gardens, I will find some time soon (I hope) to go out and weed.
My gardens and out butterfly raising will start again soon and help give us some time without pain.
Aaron is creating his jokes still, today he came up with about 5. My favorite is "Where do aliens put there food?
In Close end counters.
His jokes keep us smiling, his hugs and kisses keep us going.
We are certainly struggling to hold up with the new
settings and hospital procedures, unlike
Minnesota, Lutheran General does not have an infusion room so today for the first time Aaron received his platelettes in a
regular hospital room.
Also now I am researching (quickly) to see if the Chicago School system can arrange for us to
get a teacher to teach all of us whatever sign or hand language we will need to communicate with Aaron.
We went to the Audiologist yesterday, and what we were told was that Aarons ears are receiving
the sound and transferring the sound down to his brain stem but then the ALD is blocking the signals to let in the sound.
Aaron is 99% deaf. He is also already visually impaired, this will get worse and he will eventually
face total blindness so we are looking for ways to learn to communicate with him once he is blind and deaf.
Our pain is undiscribable. I am doing whatever I can to hold the 3 of us together firmly planted
We got home 1 week ago and it feels like 5 minutes ago.
Saturday May 22, 2004
Rain & Dark Clouds in our lives
Our trip back to Chicago was a long one. It started on Tuesday when Flo's brother & sister came up
from Chicago. Between Tuesday & Wednesday we packed Johns full size van, our mini van and our car all filled with stuff.
Much of it was the medical supplies and food we had. The caravan left Minneapolis at 10am with Flo's sister Betty driving
our car, we were in the mini-van with Aaron we arrived in Chicago 7 hours later. We couldn't believe Aaron didn't sleep a
wink on the trip home.
After arriving home thats when all of us began to have problems. So many things I can't mention them all. We are still
sorting out boxes, getting even more medical supplies from the Chicagoland company now working to provide home medical care
for Aaron. We met his nurse today. Aaron say's the most loving things like, "father your the greatest dad a boy could ever
have" or "Daddy when I grow up and have children I hope I am a father just like you" "Is it ok dad that when I grow up I marry
mommy, is that ok with you? God I don't know how we will make it through this. Please don't write
to me a bunch of God stuff, I don't feel like reading that right now. I am losing my angel and thats all I care about.
Wednesday May 12, 2004
Our darkest day
Aaron's ALD has won the battle. Aaron will not be getting a second transplant which would have saved
his life. After meeting with the entire team of doctor's today, the decision was no transplant. Aarons disease has progressed
at a fast rate. Today he only has 3/4 of his vision left and very little hearing capacity. We now prepare to bring him home
so he can see his friends, his dog and his home again. Our saddness is beyond words.
Wednesday May 6, 2004
Aaron is still doing very poorly, we can only imagine that the seizure Aaron suffered from has really taken
a toll on his brain, they tell us it could take up to a week to recover from this, (we hope so). His thinking is in very bad
shape, and is struggling to tell us things, he can't keep anything straight, I left today to go to the Ronald McDonald house
and was back in about 4 hours, he thought I went to Chicago and asked me how Corky was doing.
Yesterday I said they had Aaron's blood pressure was under control, well as of today they were struggling to get Aarons
pressure to safe levels. A Doppler scan of Aaron's kidneys show no damage there.
Computer now in the room so I should be updating more often.
Tuesday May 5, 2004
Perfect fun weekend ends in tragedy
The weekend was all planned I would bring Aaron's dog Corky for a family reunion. Florence and Aaron were
so happy to see him, the 4 of us were all together again, and Corky was so happy to see Aaron & Flo too.
Our visit was going well, Corky & I were scheduled to go back to Chicago on Sunday. Saturday afternoon we had
all taken a restful nap and were up at about 2pm.
Then the trouble began.
Aaron complained of having a bad headache, he had complained about one on Friday as well & we gave him tylenol, well
we gave him tylenol for this headache as well. Then Aaron became very sick to his stomach. Then we noticed him spacing out
and then he would be ok, then he spaced out, stopped talking and started starring right through us all he was only able to
give us one word answers if that.
He was rushed back into the hospital straight into the Childrens BMT center. His blood pressure was way outta control
around 170 over 110. After we got him in the hospital we began seeing the warning signs that Aaron was having Seizures again.
We had an cat scan by saturday night, an mri sunday morning showed an abnormality toward the back of Aaron's brain, caused
by accesive blood pressure and this was causing him to sieze. They followed the MRI with an eeg of Aarons brain which clearly
showed Aaron seizing constantly. So to tackle getting Aarons blood pressure down they would have to use a medicine that was
so strong its been known to cause the patient to stop breathing altogether, so Aaron was placed on a ventilator like machine
1 large tube down his throat to make sure Aaron continued to breathe and one small tube to remove stomach stuff because the
stomach wouldn't work at this time either.
I had to rush the dog home to Chicago and rush back to be at Flo's side with Aaron at this time. I left at 2pm Sunday
was in Chicago by 8:30PM back on the road to Minneapolis by 11:30pm Sunday night, I was back at the hospital at about 8:00am
Now they have Aarons blood pressure under control, he stopped seizing yesterday. But after 2 and a half days of seizing
and Dylantan, Aaron is not himself right now he can only form very short sentences, and is sleeping all the time. The doctors
are now searching for what is causing Aaron's blood pressure to go out of control. They are looking first at his kidneys,
so lets all pray that he is not having any kidney problems. We are far from being out of the woods with this episode.
I will try to post an update as soon as I can, it won't be a week again. There are computers at the Ronald McDonald house
that I am using right now. OK more soon.
Friday, April 23, 2004
Today we learned they have slashed Aarons medicine decrease plan by 3 weeks. They are almost working at emergency speed
to get Aarons transplant done. I will be joining Florence in Minneapolis for the in patient stay again she and I will begin
to work the shift like system we had before. I hope to have a computer in his room again that way I can leave daily updates
as I did before.
This will be a very dangerous time for Aaron, his immune system is not very strong right now and they are going to use
radiation this time as his chemo. Aaron will be watched very carefully for any infection that may pop up. They could be deadly.
Friday, April 16, 2004
Very bad news today.
Aaron's transplant did not take. Blood test results were in today and his old immune system with the ALD mistake has
overtakin the new immune cells. You may remember about 4 weeks ago we were given the news that Aaron's new immune system
had dropped from 80% down to 30%, well now the new immune system is gone.
The next question I have been getting is "What about the positive news about Aaron's MRI results" well all I can say
is that that test did indicate an improvement but todays news cancels that out for now.
Aaron will be taken down off the the medication he is on now and have to be off of them for about 4 weeks before they
proceed to start all over again in late May or early June, at which time we will begin the entire process over again. This
coming Wednesday we may get some more information as to what may have gone wrong and if new a new cell match has been
We are not taking the news very well. I have forced myself to make this entry through our deepest sadness to date. When
I arrived at the Ronald McDonald house today Aaron said "Dad im sorry the graft did not take" I had to tell him it wasn't
his fault. This is all I can write for now. Please keep praying for Aaron.
Saturday, April 10, 2004
Could this be the miracle we have been praying for? I am cautiously excited
about this news. Aaron had an MRI done on Monday the results of that MRI came back just this Thursday. The Neurologist reported
to my father and Florence that as soon as the doctors who were reviewing the results called the doctor as soon as possible
to let him now that the profile of Aaron's ALD in his brain had actually improved!!!
This treatment Aaron is receiving is not suppose to heal the ALD it just halts the progression. So the
doctors were all interested to see an ALD patient with an improving MRI scan. This is considered very rare.
I am also saddend because Aaron can not hear me when I talk to him on the phone. I said "I love you" he just says What?
I pray the visual and hearing problems get better soon too.
Aaron whent on an Easter Egg hunt at the Ronald McDonald house, but could not stand long enough so he sat on a couch
and his mother helped collect eggs for him. See new pictures
Tuesday, April 6, 2004
I had a wonderful visit with Aaron this past weekend. I arrived with some of his favorite candy, and a
trunk full of gifts. The art department sent me up with a lot of packages. So did our friend Audrey Murphy. So I arrive and
the only thing I was missing was a santa suit. Aaron LOVES surprises especially presents. He was all smiles.
I did learn more about his hearing and it is concerning. The Dr. told Florence last friday that Aaron was not losing
his hearing . How can I say this, Aaron brain is jumbling up the sounds he is hearing. So many things I said to him I would
have to try to say them very slowly and even this did not work on several occasions while I was there.
So they did another MRI on Aaron to see if the profile of the ALD has gotten worse.
There still is a chance that the medication Aaron is on is doing this to him, but we don't know for sure.
We are also waiting for the results of the test that show if Aarons new immune system is doing better or worse. So we
wait. New photo's should be here Friday night.
God, please help Aaron now before it's too late.
Thursday, April 1, 2004
Aaron has been losing his hearing over the last couple of weeks. We didn't notice right away, but now he
has trouble hearing me on the phone, I have to talk very loud in order for him to understand me. He saw a neurologist today
and the Dr. is not sure if this is caused by a medicine Aaron is on or the progression of ALD.
Aaron had an appointment with this doctor because Aarons vision is giving him trouble, he is favoring one
eye over the other.
Aaron will undergo another MRI this coming Monday to see if there is further damage by ALD.
I am very excited because I go up tomorrow for the weekend, I can't wait to see Aaron. I am bringing him a stock of his
favorite candy (lately) they are called nerds rope.
At work, the art department along with some sales reps from my office are sending me off with a bag full of presents
and cards, don't worry Audrey I have your gift as well. With all of the gifts & candy I think I should wear a Santa suit
there are so many packages.
Well I hope to update this on Tuesday with some news and photo's
Thursday, March 18, 2004
This will be a short entry. Aaron's cough has gone away with the medicine they used on him, Thank God. I am excited because
this will be my 1st weekend trip up to Minnesota. I leave Chicago after work tomorrow afternoon, I figure I should get there
about 2am Saturday. I will take a bunch of new pictures so early next week look for new photo's.
I have to get back to packing. Thank you for the prayers that helped Aaron get over his cough.
Monday, March 15, 2004
Aaron spent a good portion of the day at the BMT clinic. He has developed a strange cough. They did give him a chest
x-ray, and that was clear. The doctors belive it could be some type of broncial problem or a virus of some form. They took
cultures in the hopes of identifying a virus.
This is a scary situation, if the cough worsens Aaron will be re-admitted into the hospital and they will use intervienous
antibiotics rather than the oral ones he is taking already.
Aaron's blood counts were also down along with the family of elecrolytes so he also had to have another transfusion today.
In what should have been an hour visit, it took them 5 and a half hours. I am sure this has to add to Florence's over
taxed stress levels. Not only is she Aaron's Mom she is also his primary nurse taking care of all of his daily medical needs.
His IV, medications, catheter dressing, along with everything else. My father is doing his best to help out wherever he can,
but I know the brunt of this is falling on Flo's shoulders. I pray her lupus continues to allow her to function.
When I spoke with my father just a short time ago Flo was taking Aaron into the shower to breathe steam, this was helping
him temporarily. She is hoping the doctors will order a vaporizer they can use at the Ronald McDonald house the rooms are
I am praying that this cough clears up, soon. I wish there was more I could do.
Friday, March 12, 2004
Aaron was released from the hospital on Thursday!!! Florence was very busy last night working with a nurse
who was teaching her all about Aaron's IV requirements. Aaron can wear a little backpack that holds the fluids and contains
the pump. Aaron will continue to need the added protein, vitamins & fluids that the IV provides.
When I spoke with Florence tonight she had just come from the Pool room. It was nice to hear Aaron was
getting around the Ronald McDonald house again. He must wear a mask when he leaves the room. This is the time now we
have to be very careful with Aaron to protect him from germs that could cause him to get sick. He does not have enough of
an immune system yet to protect him. If he begins to run a fever, pow, back in the hospital he goes, and they would treat
it as an emergency.
Aaron continues to have some trouble with his bladder but it seems that gets a little better every day.
I will write soon when I have more news.
Wednesday, March 9, 2004
Aarons bladder pronlem continues to improve. Doctor's are saying maybe Thursday or Friday for release from the hospital.
Florence is already packing up Aarons room at the hospital in preparation of the move. Aaron is feeling great! And thats is
More news as soon as I get it.
Monday, March 8, 2004
We had a scare this weekend. Saturday during the overnight hours Aaron got out of bed to go to the
bathroom, lost his balance and fell to the floor bring the entire IV pole and machinery with him. Than later in the day he
did it again landing on the bottom of the IV pole, where the wheels are. Then it was discovered that Aaron's blood pressure
was too low. And they reduced his intake of blood pressure medication, now no more falling.
The other condition seems to be improving slowly. We are watching his bladder activity carefully.
Florence is now the changing Aarons "dressing" every three days where the cathader enters his chest. It's a somewhat
nerve wracking procedure.
Well this Daddy (Gary) is back in Chicago, I am preparing for my return to work this Wednesday, March 10th. It was very
nice to get back home and see our dog "Corky". But leaving Florence & Aaron was one of the hardest things I have ever
done. In my place is My Daddy "Roy Hultman" now is sharing with Aaron's care up in Minneapolis for the next 2 weeks.
Saturday, March 6, 2004
Aaron continues to fight, as we continue to pray. Thursday night, thank God he was able to get some
sleep. Last night the frequency of his urinating increased again to every 3-4 minutes for 2-hours. He is sleeping again
now, but has already woken up 2 times due to the bladder pressure.
I write this entry with a broken heart. Today is the day I have to say good-bye to Aaron as I prepare for my departure
for Chicago. For me to leave with Aaron still in the hospital is hurting me so. "All my bags are packed I'm ready to go
I'm standing here outside your door I hate to wake you up to say good-bye". I am crying and my heart is breaking so bad.
I had so hoped Aaron would be at the Ronald McDonald house before this day came, but it was not meant to be. I feel like
I am letting my little buddy down. He will be strong & fine, I am a wreck.
I must look forward to the weekend of March 20th, when I plan to return just for the weekend with our dog Corky. Pets
are allowed for short family visits at the Ronald McDonald House.
My father, Roy Hultman has arrived to take my place for the next two weeks than my inlaws Bob & Kathleen Greene will
join Flo to continue helping Aaron & Florence through this on a daily basis.
I will continue to update this journal from home in Chicago.
Thursday, March 4, 2004
Please help us pray for Aaron again for his comfort and the relief from the problem he is facing
now. This kept him up from 6am yesterday morning through this morning at 5am. His bladder now is a factor in his
release from the hospital. They won't release him as long as he is bleeding as much as he is. Flo & I are almost at the
end of our rope. We keep asking how much more does this child have to experience and how much more can we take. We were suppose
to be moving him back to the Ronald McDonald House. I had prayed Aaron would be out of the hospital before I would have to
leave for Chicago, but that is not going to happen.
Wednesday, March 3, 2004
Yesterday Aaron began having a "situation" it was quite frightening. Aaron's bladder began bleeding.
It got really bad overnight. The doc's told us to not be too alarmed that it is not uncommon that after all the chemo Aaron
has had that this could happen. It was still quite bad. In the last couple of hours it seems to be improving (I hope).
Aaron still needs all the prayers we can come up with, now to clear up this latest problem.
In other news Aarons white count has reached the point that they need him to be at to be released, now they just have
to stay up.
Also great news! Aaron received a package from NASA. A shuttle astronaut heard about Aaron & sent him a NASA hat
with photo's from their mission, take-off and a spacewalk the astronaut made in the shuttle bay, soo cool. Aaron also got
the mission patch along with mission stickers. Aaron was speachless when he was holding a package for himself from NASA and
he hadn't even opened it. I will upload a couple of photo's later this evening. What a wonderful inspiration that was
Friday, February 27. 2004
Today Aaron is feeling good. We shot 10 minutes of video featuring Aaron for the kids hospital channel. He should be
featured as kid of the day on one of next weeks programs. We will have a copy of the show on video I can take back to Chicago
& share with his classmates (I hope).
I was thinking this morning, this transplant and it's results are hard to comprehend, but imagine, the very marrow which
produces our blood, carries our genetic code gives us the endless production of blood cells we need to survive has been changed
completely in Aaron. His body is now starting from scratch to reproduce the donors red & white cells along with dozens
of other proteins and stuff.The science behind this, boggles the mind. We thank God for this miracle of modern medicine for
saving our son's life. We also understand we have many hurdles to overcome.
One Day Closer to Leaving the Hospital !!!
Thursday, February 26, 2004 Day+ 21
On wednesday Aaron's doctors indicated that they are beginning to plan his release from the hospital. They have solid
evidence that Aaron's red and white blood counts are going up. The transfusion the other day may have helped in some way.
We know they are preparing us for release because Flo & I have to go to training classes to learn how to take care of
his catheder, dressing & redressing. Also we have a class this weekend that will teach us how to connect Aaron to his
IV machine, incase he needs nutrition we will have to feed him with the IV 12 hours overnight.
So far Aaron is eating only Golden Delicious apples. Last night he had 2 for dinner!
We are so excited about the prospect of moving back to the Ronald McDonald house. Then we will bring Aaron each day to
This morning at 5:30 I sat at the Ronald McDonald house in our kitchen there, thinking of Flo having just spent the night
at the hospital and how tired I was of this routine the 32 hour shifts at the hospital, when I was packing my stuff to come
back over to the hospital. I thought about how hard this has been (Day in Day out) and I wonder how we did it??? I guess
our schedule is the only thing we could do to get through all of this.
I will be returning to Chicago to start work on March 10th. I look forward to getting back in the newspaper groove.
Aaron needs me I have to sign off.
Tuesday, February 24, 2004
Today was not the best day. First Aaron needed 2 blood transfusions this morning. At noon
time he became sick to his stomach and was running a low grade temperature and feeling pretty bad again. He took a good long
nap which I think he needed. After his nap he felt a little better, but you can just tell when he is not feeling good.
My brother-in-law John Greene was kind enough to send me photo's from the big Winter Carnival at our
church. The event was first organized to give the children of Norwood Park a winter party by the White Steeple preschool,
then in time it turned into a benefit event for Aaron as well. I am featuring a few of those photo's in the photo album area.
Sunday, February 22, 2004
Today was day +17. Aaron had another good day. He ate 1/2 of an apple tonight for dinner! Yea, at
least he ate something and thats a good start.
He is challenged now as they transfer his meds from IV to capsules & pills. Aaron only recently began taking pills
at the end of December, because he hated the liquid forms of these medicines. Tonight he looked at the 8 he had to take and
rolled his eyes, it took us 40 minutes to get them down. He has to take them about 5 minutes apart, so he can keep them down.
Many people have been asking about how Florence is doing. She has been outstanding considering
her lupus is constantly attacking her brain. She is using her pain medication and with that, nobody can even tell
she is sick. She is doing so much of Aaron's care as well. We each have things we do for Aaron and most of the time Florence
is working with Aaron on his homework. While I am the sole shower giver. Aaron needs to take a shower everyday. Florence
is fighting her lupus and at the same time being a perfect Mom for Aaron, she could not be doing any better than she is. The
nurses here have no idea how sick she is, that is how well she is working right through the pain.
Friday, February 19, 2004
At the end of the day today I feel grateful. Your prayers & thoughts and our prayers seem to
be heard by Almighty God. Prayers are being answered. Plus Aaron has been outstanding in his fight (more on this later).
Today Aaron's labs are looking good. So much so the Doctors are switching Aaron over to oral medication and removing
the same meds from his IV.
Dr. Orchard said today that if Aaron continues to do so well, he may let him leave the confines of this room we have
been inside of, for Aaron that will give him the freedom to at least walk through the halls. But it also is one step closer
to Aaron being able to leave the hospital. Then we can take him back to the Ronald McDonald House where Aaron would continue
to come to the clinic for labs everyday.
Now I will spend the rest of the night praying that I didn't speak to soon and jinxed Aaron's recovery. Aaron
& Dad spent this Friday night watching Indiana Jones & the Last Crusade. We have been watchin the Indiana Jones trilogy
of videos over and over. Aaron drew me three perfect drawings, one scene from each story, I love them.
One last thing. I have to give Aaron allot of credit for his rapid recovery, he has fought this illness with everything
he has, and it's obvious. Good job Aaron! Your right on target with your mission.
Thursday, February 19, 2004
These are the days when Aarons blood counts are fluctuating. We can get excitied about a increase in his white cell count
but we are told the next time we see labs don't be surprised if they are down. It's still a little early in the transplant
process for some of the more dangerous complications to show themselves so as I said before we approach each day causiosly.
We are going to be praying for a succesful change in anti-seizure mdicine that has to be made, so we pray Aaron doesn't have
any further seizure trouble in the process.
Tueday, February 17, 2004
Today we had a great visit with Dr. Orchard on of the renowned ALD, BMT doctors. And as we know this is a very dangerous
time, the Doctor said "Aaron is the healthiest child on the unit" his labs look good. He had to have another transfusion to
bump up his red cell count and more platelet's but these are routine steps used to keep his blood counts within certain levels.
What this means to Aaron is that he is in first place, his mission is going well today. He is giving this fight everything
Aaron was featured on the childrens television program that the hospital produces weekly for children. By invitation
he was asked to read the poem he wrote for his mother live on the air.(see Monday for poem) Then he had to throw
in a joke, this one Aaron came up with on his own. "How does a computer laugh?" give up? answer: giga gig giga gig.
And so we causiously move forward.
Monday, February 16, 2004
This past weekend Aaron wanted to write a poem for his mom for Valentines Day, a card wasn't enough.
So with a little work he had completed this poem:
Mommy, you are sweet I think thats's really neet.
You take good care of me when I'm off my feet.
You love me like a bear even though I have no hair.
Needless to say Florence loved it.
Monday was eventless Aaron, but very busy.
Sunday, February 15, 2004
We had a good day. We received a few packages yesterday and I brought them with me to the hospital this morning. He got
a great Inventions kit, which I am sure we will get into as soon as he is feeling better.
One of the packages came from his class and enclosed was a book called "We Miss You Aaron". Each page contained a message,
a drawing and a photo of that student. So each page was a wonderful new wish for Aaron and he could see each student
as he read through it and looked at their drawings. Aaron was so happy he cheered up so much when he saw what the book
was all about. He said several times isn't this just the best book? It really let him connect with his classmates, his assistant
teacher and most importantly his teacher Mrs. Stephan. I would like to say "thank you" for cheering Aaron up, that is
As I said our day was a good day no transfusions today! Aaron has not been able to eat yet, he wants to but every
time the food is in front of him he just looses interest in eating.
We have to do mouth care 4 times a day washing out his mouth with salt & baking soda water, this is done to help
prevent some nasty sores that can show up during this cell recovery time.
We now wait with caution and hope to see the cell counts begin to rise. We will wait as long as it takes.
Saturday, February 14, 2004
Today is Valentines Day. We spent the first hour of the morning opening a great big box of Valentines,
Treats & letters from Aaron's friends at school. (he didn't want me to take his picture) What a great time we had,
Aaron was so animated I could see him feel every good wish & Valentine from his heart, it was as if he was getting them
from each friend in person. He also received a big bouquet of cookies from Dori & Earl Dahl, friends of Flo's parents.
This gift is getting alot of attention around here, everyone who see's it fall's in love with the rockets & spaceman Aaron.
We receive so many wonderful things I wish I could list them all here.
Friday, February 13, 2004
Today was a good day, Aaron was smiling again feeling much better than he had over the last week.
The results of the second EEG (taken 2/12) came in today with no sign of seizure activity, so we hope that the new anti-seizure
medication is working.
Aaron was also able to do his physical therapy, he rode the stationary bike for 9 minutes! Speech therapy, and most
important he had his school class again today (look for new photos on this). Aaron is only still very upset when it
comes to his hair, he asked why they made medicine that does this to kids. He loved his flat-top so much. All other labs looked
ok today. We enjoyed the good day, but we also all threw salt over our left shoulder today for good luck!