Battles against terminal illness, anxiety, and life!

Steps

Our life is such an amazing surprise.  Every day we have no clue what we will wake up to.  Some days feel as if the day is destined to last forever, while others sneak by without us realizing a minute has even passed.  Each day is unique, and very often dependent upon the children.  They are amazing little people who would rather be out enjoying the sounds, smells, and people in this big world around them.  They are not ones to sit home and enjoy the comfort of the familiar.  Today we did just that though.

Today we had the county special education department come by to evaluate Braden for services.  Even we were surprised to see how high he scored cognitively.  He’s smart and quite a witty little man.  We didn’t complete his testing, because he just got too exhausted.  Shortly after they left, he crashed and napped.  They will finish up the evaluation next week.

Today has been a tough day for Braden.  His legs are weak, they have given out about ten or so times already.  The day has been spent helping him overcome his obstacles and sharing the love with his baby sister.  The day slipped through our fingers.  On days like today I’m almost thankful that I haven’t had time to stop moving.  In the still, in the quiet, that’s when one has time to think, to reflect.  On the bad days like today, I can only hope I don’t have time to sit and worry.  Although I know that worrying will only rob me of my sanity and strength.  I have no control over where A-T is going to take us, but my gut is telling me that things are going to happen all too soon.

It’s not just his unsteadiness and falling that have plagued him today.  He has been choking and gagging.  His own saliva have caused him to choke.  His energy is in short supply.  He becomes short of breath easily on an average day, but today his breathing seems even more labored.  He has complained telling us that his “belly hurts” for the past week. We have a doctor’s appointment next Friday with a pediatric GI, and that’s been planned for well over a year.  I guess the timing is impeccable.  Days like today make me want to close my eyes and imagine my world as I wish it were, not the reality of what it is.  A world without A-T and suffering children is what I long for.  Please let my dream become a reality sooner rather than later.  I love my son, and it makes my heart ache for what he is going through.  It doesn’t help that the A-T community has lost such special and young children in the past month, little ones who never made it to their tenth birthdays.

Please help us help our son, help us find a cure.  See the tabs at the top of this page for more details.  Please.

Advertisements

Comments on: "Steps" (2)

  1. I’m sorry he had such a rough day.

    Something you might want to look up before your GI appointment is a procedure called a Nissan Fundoplication. Basically it prevents stomach contents from refluxing, so they can’t be aspirated. It may or may not be brought up to you by GI, but I always vote to be prepared so you can make the most of each appointment.

    I hope the doctors can start working towards making the path as smooth and as long as possible.

  2. Thanks Cathy, was trying to remember what that was called.

    hang in there. I know it’s tough to watch our children go through all of this.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: