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Brandon’s Story

Welcome to our CaringBridge site. It has been created to keep friends, family and anyone else who ever wonders about Brandon, updated

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook. There will be updates about Brandon as often as we can sit down and do it.

Brandon was diagnosed with Duchennes Muscular Dystrophy at the age of 6, August 2001-officially in September 2001. It has taken a beating on his body. He relies on a power chair for getting around. He has lost most movement to his arms and legs. He has a very hard time feeding himself, brushing his hair, and brushing his teeth. He relies on us to do almost everything due to his weak muscles. He is a fanatic over cooking. We tease him that he would make Chef Ramsey look like the Pillsbury doe boy! He would make the most amazing chef if only the disease would leave him alone. He still love to try and make stuff, although his arms just cant stir up the batter, cut things, or flip things anymore. He is a real good inspector though! He LOVES his video games, and has mastered going on line and playing games with others, some who share this disease.  Since his dad is in the army, Brandon has lived in many different places. Once we got to Texas, we decided that we loved it. Brandon was happy, and has access to sidewalks and streets that he can easily access with his chair. He loves his school, and the people here LOVE BRANDON! He is like a celebrity at school! We decided that we wanted to make Texas our home for good. We built a completely wheelchair accessible home for Brandon (and us). Although its horrible being away from his mom, we are able to work together to make it a great experience for both of his families.  Brandon  continues to deteriorate at such a rapid speed.  Just when we get used to one thing, something else happens.  DMD is a horrible and cruel disease, and I can only pray that some day we will have a cure for it so that no one else will have to go through what we and many other families have.

Latest Journal Update

1st Angel-versary...

Sorry..I tried to post this last night but couldn't do it.

So
last year on 3/20/12 we spent the day at home with Brandon at his
bedside.  His teacher had come as she normally did, and was a little
upset I turned her away.  His CNA had come to give him a bath.  Brandon
said "Please don't make me take a bath." and so we didn't, even though
he really needed it from all the sweating he had been doing.  He was
starting to have trouble swallowing, but was able to drink ice water
well.  He was having fever then chills.  He was beginning to decline to
the point of no return.  He just wanted to lay back and get comfortable,
which we helped him do.  As the day went on, he had some anxiety, then
confusion, and some hallucinations.  We medicated him with the meds
hospice had given us, and just stayed by his bedside to reassure him he
was not alone.  We held his hand, talked with him, and comforted the
best we could.  he developed restlessness, and begin wanting to change
positions every 5 to 10 minutes.  We adjusted him, and turned the lights
down in his room.  We were both exhausted from being up the night
before, but knew we could not leave him.  We knew he could go at any
time but still was praying for that moment when he would bounce back and
be ok again.  We agreed to take turns staying up with him until we had
other family members here to help us.  I decided to take the first
night.  I brought Chris to the room, and a recliner beside his bed. 
Brandon was still having some anxiety, and some mild hallucinations-one
about prepping a team for HALO, another was weird but flowed out of his
mouth so clear...  He got his next dose of medicine, some ice water.  At
some point, I grabbed his favorite childhood book (Monster at the End
of the Book) and a photo album/awards album.  I read the book to him,
and talked to him about all the pictures, all the adventures we went on,
all the awards he won and how so proud we were of him.  I held his
hand, and just sat there.  At some point, as i was hoovering over his
head and kissing his forehead  and telling him I loved him for the
millionth time, he told me he loved me.  I eventually laid Chris down
next to him and snapped a picture...the last one I wold ever take.  As
daylight came, I noticed that his hands were now turning blue at the
tips.  I cannot tell you how much seeing that ripped my heart apart. I
knew he wouldn't be with us much longer.  I began crying at his bedside
and praying that if God was going to take him, he would keep him in
peace till then.  Brandon had quit responding for the most part.  He
wasnt anxious, he was having no trouble breathing, he looked
comfortable.  I figured I would be exhausted, but for some reason, I was
ok.  I got everyone fed, grabbed some coffee, and then we sat and
talked with the hospice nurse who had come by to check on him.  They had
finally arranged respite care for us/Brandon, after almost 2 years of
service.  She left, and we just sat in Brandon's room.  He had been
sweating so bad over the past couple days we decided to give him a
mini-bath which he was comfortable.   I ran to Walgreens to get some
mouth moisturizer for him, then come home and washed his hair, and give
him a mini-VERY MINI- bath.  He didnt flinch.  I cleaned out his mouth
real good, cleaned his teeth the best I could with the little swabs, and
then noticed how horribly dry his eyes looked. ( His eyes had remained
slightly opened which was normal for him while he slept).  We decided to
put some drops in his eyes for comfort.  Bill went to get the drops, I
turned to pull the blanket from his hip up to his chest and then I saw
it.  In a split second, his color changed, his breathing went from deep
breath to a movement of the tongue only.  I screamed for Bill, who
hobbled back into the room.  We held to him, and it was over.    We
stayed in the room, crying, distraught for I dont know how long. 

That
was a year ago.  I cant tell you how heavy it has laid on our hearts. 
We are told often that Brandon lived more in his short time than many do
in a lifetime.  I hope we were able to do that for him.  Since he has
been gone, I am not myself.  I lost my "drive".  I used to be a fighter,
but no more.   He brought out the creativity and inspired me to do more
and push for more for him, and US.  I dont know if my strength/drive
for life will ever come back. 

They call the anniversary of one
passing an "angel-versary".  It was/is hell, not just on the day, but
EVERYDAY!  Everywhere we go, we see things that remind us of him.  We
hear songs, see games he would have loved.  We see people struggling
with battles similar to his.  We see things he would tell us about, eat
meals he would have loved and cook recipes by his favorite chefs.  We
watch new episodes of his favorite shows and think about how he would
have reacted to them.....all with a pain that overrides most of the
happiness.  We talk about the silly times, and happy times, and the
adventures we had with him, and the deep emptiness we feel now is still
present.  They say it gets easier, and we are still waiting for that to
happen. 
We continue to ask folks to do random acts of kindness in
his name.  If you have ever been the recipient of one, you will
understand why.  Brandon was the recipient of many,  and would get so
giddy when we would do one.  The first one I can remember was when Bill
had deployed.  We went to eat at a Japanese place, which he loved. 
Brandon laughed to whole time watching the chef acting silly as he
prepared the food.  After the meal, we waited for what seems like
forever for our check to pay.  After our "tablemates" had already gotten
theirs and paid and left, the waiter come to us and explained that one
of the "tablemates" was a veteran, and paid for our meal for us.  We
were all floored, but Brandon was blown away.  He wanted to do something
like that, and would do them on his own at times...  I was so proud of
him... 

Missing him and moving on has not gotten easier yet.  I
still cry when I speak of him.  I cry when I am reminded of something he
would have loved but will never see.  I cry when I see my "dmd sisters
and brothers" share our fate, or come close to sharing our fate.  I cry
when I see the shamrocks, the firefighters collecting change with their
boots, and the telethon every year.  Every time a family joins our
support group, I relive his passing over again. Every "Angel-versary" of
my DMD sisters and brothers, every newly diagnosed child, every time I
see a child/teen in a power chair, no matter what the reason, it brings
me to tears.   I try to keep myself so busy I dont have time to think. 
If I cannot think, I cannot cry.  Enough for now...