Saturday, February 2, 2013

Overwhelming Peace

We stood in the cul-de-sac several feet from one another as we took turns helping start and balance the new spiderman bike. "Pedal, pedal, pedal!! Keep your eyes straight ahead!! Keep pedaling!!" were the repetitive pleas being shouted through the crisp air of the winter morning.
My thoughts were almost instantly transported to the days when we would sit in the livingroom floor with just a few short feet in between us. With our arms stretched out in anticipation and with gentle encouragements of "Come on. You can do it. Walk to Daddy.", we would cheer on with pure excitement at the unsteady and drunken-like gait of the little guy. It seems that when you are presented with reason to question your child's limitations in life when they are just a few weeks old, the elation you experience while witnessing these monumental milestones is much more intense than usual.

It wasn't until a little over 6 months ago that Nate was finally able to ride his tricycle. Having enough strength, stamina, and coordination to master that task just took a bit longer for him. Once he received a "big boy bike" for Christmas, he instantly wanted to try to learn to ride it without training wheels and has been hounding us to teach him ever since. Standing in that cul-de-sac with him this morning as he tried so bravely to learn this new skill was a little surreal. He still has a long road of practice before learning balance and his little legs wore out very quickly, but the skill is there. I have no doubt he will be able to ride just like his sisters someday soon. I never imagined he would be where he is now.
We sat in a room with a long conference table the other day, across from educators and a nurse, and discussed what will be needed to make Nathan's introduction to public school and kindergarten possible in just a few short months. I explained that yes, we did realize there was significant risk involved in this move. But at this time when he is more prepared for success and healthier than he has ever been, it is a risk we are willing to take. My baby school. I never imagined he would be where he is now.

I sat with his physical therapist yesterday as she conducted routine strength and agility tests on the little man. We have been marveling at the incredible surge of strength and energy he has had over the past year, but it was even more amazing to see it in black and white from the test's interpretations. Nate has been receiving physical therapy about once a week since he was 6 weeks old. Yesterday was the very first time we have been able to say that he is finally "age-appropriate" and caught up on his gross motor skills. I never imagined he would be where he is now.
This past year has been simply incredible. I believe that the combination of his gastric stimulator and adequate nutrition, the starting of a medication to help control his symptoms of dysautonomia, and the introduction of subcutaneous immunoglobulin therapy have all been extremely instrumental in the amazing changes we have seen in Nathan. Sure, there are still little tweaks needed here and there, troubling symptoms popping up periodically, and days where his body struggles greatly. But those times have been significantly less over the past year than in previous years, and these longer periods of respite have given way to so much positive growth in every aspect.

Raising a child with this disease is exceedingly difficult at times. The unknown aspects of the future often weigh quite heavily on our minds, and we constantly struggle with the knowledge that things can take a dramatic turn for the worse at any time. This often causes any periods of growth or even a good plateau to be secretly overshadowed with the "waiting for the other shoe to drop" feeling.

But sometimes...just sometimes...the positive feelings push aside most all of the worry you have lived with through the entirety of their life. And all you can do is rejoice in these days of overwhelming peace.

I never imagined he would be where he is now.


Amanda Sacco on February 2, 2013 at 3:22 PM said...

His amazing Mama who's willing to go any distance to see that he gets the best is a HUGE piece as well! So happy to see how well hes doing!! Miss you!

PENNY REGISTER on February 2, 2013 at 4:18 PM said...

Amazing Grace is shown in the face of this young man and his family's faith is shown in there ability to carry on with thanksgiving. Thank you Amber for giving us a glimpse of the joy you experience with your precious family.

Anonymous said...

Thank you for sharing this moment. So precious I know being the momma to two mito warrior boys.
Anne Washington

Kyla on February 2, 2013 at 5:16 PM said...

I'm so glad he is in such a good place and I hope he has a wonderful experience at school. We have been so blessed by K's school experience!

Dani on February 2, 2013 at 5:20 PM said...

He is definitely a super hero. (LOVE, LOVE that last picture.) He's an amazing little fella and ya'll are some amazing parents. So excited about the progress he's made, and the challenges that he's overcome so far.

Milly on February 2, 2013 at 10:04 PM said...

He's amazing! I'm so happy for you all!

(friends of the Dickens)

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