Sunday, January 26, 2014

Memory lane...

May 2004, Fluffy Ducky Max

January 2014, Fluffy Big Guy Max

The top photo made it's way out of archives this week to show Max's nurse.  Having only known him the past few months, she wanted to know what he looked like as a baby.  We went down memory lane with her, and showed all his baby photos, and videos, and told stories of his first year of life.  It gave a different perspective on the big guy she cares for each night.

In so many ways, he's such a different guy.  In the baby photo, fluffy ducky Max was so sick still.  He was rebounding from double brain surgery, and we were still dealing with daily residual seizures. Instead of 200 a day, we were down to about 10-20 a day, which I was treating with rescue medicine on a regular basis.  It was better, but with Steve living in California for work, and me taking Max down to Children's Hospital weekly for tests and follow-ups, it was still exhausting for us both.

There is so much unsaid in that photo.  Words that may not ever come out.  The time he and I shared together in those lonely, scary days.  The intense love I had for my boy who lived.  The wonder I had at his tenacity.  And the secret, quiet hope I had that maybe the doctors were wrong and he would grow up to walk, and talk, and be like all the others boys.

He is such a different guy from that first photo.  He's not sick. Yes he still has the same metabolic disease, but it's not as dire as we first worried it would be.  He still has a terrible form of epilepsy, but we've found a few medicines through the years that keep the seizure monster quiet.  He gets to play with his daddy every day, who has the blessing from his work to be at home with him every day.  We don't go weekly to Children's Hospital any more.  We have to take him every few months for follow-ups, but they are usually quite easy visits with smiles all around, because his doctors remember fluffy ducky Max too.

While it's always bittersweet to travel down memory lane, it's good to capture today too.  When I see picture 2, I see a strong boy.  A boy who has beat all the odds placed on the boy in picture 1.  He has ten or so scars now, battle wounds.  He's gone up against the disease and epilepsy that has tried to take him down time and again and comes out stronger each time.  He is bigger than I ever imagined he would be.  Stronger than I ever thought he could be.

I no longer have the secret, quiet hope that he will walk, or talk, or be like all the other boys.  He talks, we've just had to learn how to listen.  He loves to go on walks, we just are behind him giving him the push he needs to get there.  He is a lot like all the other boys, but I think even if he were "typical", he would have been his own person.

We got word this week that the emergency surgery Max had in October to repair a testicular torsion, did not work.  This means soon we will be on a new journey of treatment with hormone replacement therapy...or not.  We don't know yet what all it involves.  Some day, we will look back at picture 2 and remember the worry, and wonder, and questions we have about the future.  I imagine when we get there, we will be proud of how far he's come, and the incredible guy he will have turned into.


Elizabeth said...

How precious he was and still is -- and I know and understand exactly what you've written. How I understand it in my own life is when I think back on those early years with Sophie, if someone had told me where I'd be in nineteen more, I wouldn't have been able to handle it. But here we are, nineteen years later and handling it quite well. I think, then, that in another nineteen we'll be just fine.

Deana said...

Yes, and it all happens in a blink!