I know I’m not strong enough to be Everything that I’m supposed to be

Well I guess it is some time for reflection.  I am not sure what this blog will become.  I cam tell that I am not updating as regular as I had in the past.  Hope I am not disappointing anyone.  But this blog is really for me and at some point Tessa.

So what is new?  I went to Lunch the other day with a friend that has a child with special needs too.  He made a statement “want to know the best feeling in the world? Knowing you’re not alone.”  I really think this is very true.  At times we all think that we are alone pushing this rock up a hill.  So back to the request lines, to date, this blog has had one song lyric listed in it.

Music is very important to me.  Music puts food on my table and pays the bills.  I know what you all are thinking…no I am not on tour J and I doubt that I ever will be on tour.  But, I always tell people that I make rock n roll happen at the Arena.  So yes music is a strong point in my life.  The following song lyrics echo the thoughts above of “knowing that we are not alone”, but also that we are not strong enough to do things alone:

You must, You must think I’m strong
To give me what I’m going through
Well forgive me, forgive me if I’m wrong
But this looks like more than I can do
On my own

I know I’m not strong enough to be
Everything that I’m supposed to be
I give up, I’m not strong enough
Hands of mercy won’t You cover me?
Lord, right now I’m asking You to be
Strong enough, strong enough
For the both of us

Well maybe, maybe that’s the point
To reach the point of giving up
‘Cause when I’m finally, finally at rock bottom
Well that’s when I start looking up
And reaching out

I know I’m not strong enough to be
Everything that I’m supposed to be
I give up, I’m not strong enough
Hands of mercy won’t You cover me?
Lord, right now I’m asking You to be
Strong enough, strong enough
For the both of us

‘Cause I’m broken
Down to nothing
But I’m still holding on to the one thing
You are God
And You are strong when I am weak
I can do all things through Christ who gives me strength
And I don’t have to be strong enough
I can do all things through Christ who gives me strength
And I don’t have to be
Strong enough, strong enough
Oh yeah

I know I’m not strong enough to be
Everything that I’m supposed to be
I give up, I’m not strong enough
Hands of mercy won’t You cover me?
Lord, right now I’m asking You to be
Strong enough, strong enough
For the both of us

 I do not know if I will every entirely know how difficult this season on life was.  I am amazed at where my family is at, and of how strong my relationship has become with my wife.  I still get very sad when I think of my Tessa.  I have the Hope that she will grow strong and bright and find success.  I get sad when I hold her or rub her small head and feel the tube that runs down to her belly, or feel the bump on her head where her shunt is.  We have been so lucky that Tessa has done so well.  At times you start to believe that she is “normal” (whatever that means now) but it is hard to have the physical reminders that she does have special needs.

I get very scared at times.  I am so terrified for the day when her shunt breaks.  I am nervous to tell THO what she has when she is able to understand.  The other day my wife brought home a book: http://tinyurl.com/3czrtmu. The book is called “All About Me: And My Shunt” we have started to read the book to Sadey so that she will understand why THO goes to the Dr so much, or why special people come over to work on Tessa weekly.  Well I guess the point of all of this is the best feeling in the world is, knowing you’re not alone and that I know I’m not strong enough to be everything that I’m supposed to be…

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THO’s MRI report

Tessa had a quick shot MRI done on Friday, June 3.  We saw her neurosurgeon immediately afterwards who discussed her scan with us.  It was awesome that we were able to see the results so fast.  We literally had the MRI, walked across the street to his office, and he had them on a laptop for us to look at.  It was maybe 30 minutes from the time she was scanned to the time we saw the pictures.  Pretty cool!

Dr. C, her neurosurgeon, said her scans looked great.  He said one of the big things they look for is brain regrowth, and she has had a lot of that.  Her ventricles have decompressed and the brain has filled in and expanded where the water was.  She does have one pocket of fluid but the doctor said it is to be expected that some fluid would still remain given the severity of her hydrocephalus before she had her shunt placed.  They also think she is missing about a third of her corpus callosum, but Dr. C said she may compensate for what she’s missing and just use the tracks she has.  He said there are some people missing the whole thing that appear to be fine outwardly. Obviously, the excess fluid she had probably prevented it from fully developing before she was born, plus the brain didn’t have time to develop to full term anyway since she required an early delivery (8 weeks).  The doctor said she is developing beautifully, too.  We couldn’t really expect her to be doing much better than she is.  She is pretty much a normal 1 year old who just so happens to have a shunt.

Developmentally, she’s trucking right along!  She is crawling and just in the last couple of weeks is starting to do it more and more, and faster (she’s been quite proficient at the GI/belly crawl for awhile).  She’s got some strong little legs, too.  She is pulling herself to a standing position and starting to cruise a little bit as well.  I call her my little daredevil—nothing seems to scare her and she’ll try crawling or climbing up on to anything.  She is getting very interested in books and loves to play with the kids at her daycare.  She is really social, has started to wave and give kisses, and is starting to say some words, mostly “Dusty” (our dog’s name, who she absolutely adores).

Also, her occupational and physical therapists say she is doing great.  In fact, the OT said a couple of weeks ago that pretty soon she won’t be able to come anymore because Tessa is just doing everything so well.  Even though we love our OT, I said, “Well, that’s ultimately what we want, isn’t it?”

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