Darren turned 11 and we had a small party with a couple of his friends. Nothing fancy. And of course if you know Darren, you would know that he didn’t expect much that year. I made him a simple cake and got him a simple gift. Then, two days later, Jarrod turned one and we hardly noticed. I’m kidding – really, but I still cringe when I think about what we did do. The poor kid didn’t have any hoopla at all! We cut out of corner of Darren’s stale cake, poked a candle in it and plopped it in front of him! Poor kid. It’s a good thing he doesn’t remember any of that or he might have an inferiority complex!
Well, we had a very happy Christmas!
As you can see in the photo below that Gerrit was kind’ of stiff. And you can see how the hair is shaved up in the back a little. He actually did pretty well on his own by now, but tired quickly.
We all enjoyed the holiday celebrations! On Christmas day, I recalled how much we had been through in just a little over a year’s time.
The death of my mother-in-law (who I adored),
The birth of my third son (who I also adored!),
A major move across the continent to a place where we knew no one,
New jobs for both my husband and myself,
and brain surgery for Gerrit.
(I look back now and see why I was a stress ball!)
But we were so grateful to have our little Gare-Bear still with us! Just look at that smile! How could you not want to eat him up?
He had less headaches than before, however, he still had them, and that was not good.
I felt like I had lied to him. It was hard to comfort him with anything encouraging about his head, because before the surgery I told him they would make it all better. They would fix the broken part so he wouldn’t have any more headaches! And he still did. I feared that he would doubt everything else his mama told him.
Well, I have to say that after a few months, his headaches got less severe. He was still very stiff and he smelled like a hospital/surgery type thing for months afterwards. Doesn’t sound like a big deal, but it was nauseating to me whenever I was rocking him or holding him in my arms. Poor little guy. I don’t know if it emitted through his mouth or skin or what. But it was yucky! (if anybody out there can explain this for me… I’d appreciate it!) But he was better, and we just tried to move on with life. Knowing that there were some things he would never be able to do – but who cares? He’s alive! I’m a big believer that there are still more things you can do alive than dead… so no worries!
Here is a photo of his neck. I only had a manual/film camera back then… and I frequently double exposed film. No, silly, not on purpose. I’m just “special” that way! I am so grateful for my digital camera now.
The doctor did a beautiful job of sewing him up, but not real sure how good he did on the inside.
(just so you know… I am not saying he did a bad job… we will never know that. And I have heard about other Chiari patients having to have a second surgery… But a few things just seemed to me a bit odd – oh, never mind – I am getting ahead of myself – and I will never know the truth – so why worry about it?)
Six months later, after a routine MRI, they called us and said that Gerrit was impacted again. He would need to have decompression surgery again soon. However, the hospital did not have a pediatric neurosurgeon available at the time. Our doctor up and left and didn’t even let us know. So they said they would find someone to take his case and get back in touch with us. “Oh…. and by the way,” she said, “he also has a cyst in his spinal column and it looks to be cancerous. But we’ll get back with you soon.” “clink”.
I thought I had cried out all the tears anybody could make in a lifetime before this call. How I had any left after that, I do not know. But I did.
Of course, my husband is on a trip. So I just walked around in a veil of greyness. I wonder now if my kids even got fed? Poor little dudes! Especially my oldest. He really got dealt a lot of “stuff” thrown on him WAY to early in life. I wish I could go back and fix all that. But… he’s in Gods hands! They are all in Gods hands! (I have to still remind myself of that!!)
Two little buddies!
I remember calling our families and friends to tell them the news. I remember wanting our family photos taken before… before he dies. I remember planning out his funeral. I remember laying by his crib while he slept, listening to him breath. I remember yelling, begging and trying to make deals with God.
But most of all, I remember feeling more helpless than ever before.
To be continued…