(A Shared Post) – What Parents of Special Needs Kids Want the World to Know

Nearly 5 months after completion of a TPO resection,  Savanna is doing well.

She is taking steps, she is engaging in the world around her.  She is having periods of self-regulated behavior.  It is wonderful, pure and simple.  Here is a video of just how pure and simply wonderful it is at times.

Now I think to myself,  “Wow! Maybe she could actually be well enough to ride the little bus (dare I say the big bus)!”  There was a time, when that did not seem like a real possibility.

It is not all roses with Savanna though, as is true in most households with small children.  She still struggles to regulate herself at times.   I struggle to effectively help her.  When this problem unexpectedly goes on for hours, it is overwhelming and exhausting.  There are no pictures or video of these times.

It takes all the patience you can muster sometimes.  Just when you think she deliberately picked up the widget and put it in a container, you realize…well, hmmm, we need to keep working on that.

And then there is Austin, our control sample.  I stop and take a moment away from Savanna.  And, I find Austin carefully populating the divided sections of his hi-chair tray with cereal – sorted by type and color – after I hastily dumped a few handfuls of several types of cereal in a pile, in the middle of the tray.  He does this without any initiation from me or unwitting leadership from his brothers.  He just does it naturally.

The healthy, natural, normal brain is a wonderful thing to see.

I work daily at carefully choosing the best steps to take down an unlit path with Savanna.  I feel most days I make good choices, and others, well, let’s just say I step in ‘it’.

2013 August-7256

Sometimes I sit down try to write about what I would like to tell others about being a parent to a special needs child.  But the words get tangled and the thoughts misconstrued.  Here is a link to a post written about this subject by a mom in our church.  Savanna is still quite young and her ultimate outcome is still largely unknown as are the challenges she may face in the near future.  I relate to her post, on many levels.  Perhaps Savanna’s young age coupled with the aggressive resection have altered her life dramatically.  And, maybe I won’t have to experience some of the feelings she describes.

As a final thought… God allowed us to choose Houston as our new home.  He did this knowing we would receive the right care for Savanna.  And we have realized such care.  He did this knowing we would meet wonderful neighbors.  And we have met such neighbors.  He allowed this knowing we would be surrounded by people who care and want to help.  We feel blessed.

I encourage you all to read her post.

What Parents of Special Needs Kids Want the World to Know.

-ken