The life of George…an update

It’s been awhile since I’ve updated on George’s story. And for those that have been following along, you’ll be happy to know that kindergarten has been going great! We’ve only missed 9 days so far, which in George’s world is pretty remarkable. And only once was it a pretty serious illness…but no hospital stays.

We had a check up at Mayo in October. The pediatric neurologist is amazed with our progress. She cannot believe how far he has come. We had a repeat MRI and the gaps in his brain that they have been concerned about have not grown any. Some serious miracles here, folks. Science and God…together.

Every day at Mayo, George would stop and say the Pledge of Allegiance to this flag. He's one amazing little kid.

Every day at Mayo, George would stop and say the Pledge of Allegiance to this flag. He’s one amazing little kid.

The last two weeks have been a bit more difficult. George has had some tummy issues that we can’t quite figure out. We’ve had an ER trip, a few docs visits…and it seems to be getting worse, not better. But we were able to get in to see a doctor this afternoon and we have a plan – and for some reason I always feel a little better when we have a plan. And if things aren’t looking better by Friday, well, then we are looking at another plan.

On day 2 at Mayo, George wore his Ninja Turtle sweatshirt. One doctor came up to him and shook his hand, and told him it was a pleasure to meet a real super hero. George is definitely MY super hero!

On day 2 at Mayo, George wore his Ninja Turtle sweatshirt. One doctor came up to him and shook his hand, and told him it was a pleasure to meet a real super hero. George is definitely MY super hero!

But with everything that has been going on, I’ve become a bit difficult. A little sensitive. Sleeping less. Needing more. Just not myself. I’ve lost a bit of my focus.

And then tonight, it all came sharply back into focus.

George was sitting behind me in the suburban on the way home. Today I had woke up late, managed to get the kids ready, worked, had rearranged schedules so I could squeeze in a doctor’s appointment for George, drove 45 minutes to the appointment, then back for two parent-teacher’s conferences, listen to my 10-year-old explain how a schoolmate had told him that he’s growing too fast that he’s going to die, talk to him about bullying and coping techniques, went to a book fair, gave my son some meds…and we were finally on the way home.

In the two minutes of silence that we were blessed with, George asked, “Is heaven fun?”

I didn’t know how…or if…I should respond. Why was he asking? Was he having dreams? Had he been hearing me talking to his doctors at Mayo? Had someone else been talking near him?

So I carefully said, “Yes, I am sure it is. But why do you ask?”

He said, “I just want to be sure I can play there when I die.”

Silence.

I couldn’t say a word.

My 5-year-old made me speechless.

I sometimes get so wrapped up in the minutia of life…and I forget the big picture. And then George will say something and it will be like God tapping me on the shoulder, reminding me that in the grand scheme of things, the destination is much more important than the scenery along the way.

I do not know how many more tomorrows George has ahead of him…nobody knows how many tomorrows they may have. Yet I know that George faces a few more obstacles than the average person. But he faces those obstacles with more bravery and courage than I could ever muster.

 

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5 thoughts on “The life of George…an update

  1. If you don’t mind me asking – what does George have? I have a 4-year old son with a progressive neurological disease and can relate to everything you write. Your updates really hit home. It is nice to know there is someone out there that knows exactly how I feel.

    • George has been diagnosed with ornithine transcarbamylase deficiency…or OTC. It’s a metabolic disorder. But all of us special needs mommy’s are the same, we know what it takes to raise an angel. Prayers to you, and your loved ones, too!

  2. Thank you for sharing your story Val. It takes strength and courage, but people can connect because you take the time to share. Prayers are with you, and as the mother of a preemie who is now 6’4″, I can tell you, you never know what the future brings but the journey is always day to day.

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