I'm feeling very sad today.
There is a blog on my blog roll called Our Sonny Life. I have been reading it since February. Their baby, Trek, died of Niemann Pick Type A yesterday. He was 14 months old. Neimann Pick is one of the metabolic diseases that Elliott was screened for when they did his metabolic panel back in February/March. It's actually how I found that blog, from doing research about NP-A. There is a little boy in Scottsdale with NP-A and he went to the same metabolic and genetic doctor that reviewed Elliott's bloodwork. That blog, Wylder James, led me to Trek's blog.
My heart just breaks for them.
I don't actually know this family in real life, but I feel like I have grown to know them by reading about them. And losing a baby or child is, I think, the biggest tragedy anybody could ever face in their lives.
I want to write about something cheery to lift my mood. Specifically I want to tell you two funny stories about my baby who, I thank God everyday, is no longer sick.
They probably won't be so funny in written form. It's one of those you kind of had to be here type things. But, I don't want to forget these funnies. So here goes.
I was making dinner on Monday night. Michael was too hungry to wait so he grabbed a banana to snack on. He was holding Elliott and he asked if I thought Elliott would mind if he ate in front of him. I said to just try. They sat down in the glider and Michael peeled the banana. Elliott FREAKED OUT. He started bouncing up and down and flapping his arms and screeching. Michael held the whole banana up to him, but Elliott couldn't figure out how to get it in his mouth. He just kept biting the air.
I guess he minded.
Side note:
Love this outfit with its little diaper cover.
And love this little body.
Story #2
Spencer didn't finish his milk at dinner. Michael, again holding Elliott, picked up Spencer's cup and drank it. We've been giving Elliott sips of water out of the same cups, so Elliott recognized it. Again, he FREAKED out. He actually burst out in tears. I quickly filled a cup with water. I was putting it to his lips when he grabbed the bottom, shoved it to his mouth and started gulping.
That's it. Both stories were really hilarious as they happened. I promise.
To finish: some pictures of the other subjects of this blog:
Eating marshmallow fluff on a graham cracker.
Playing with grape kool aid playdough
Reading his new Thomas book.
4 comments:
I hate to hear that little Trek lost his battle today. That's just so sad. I never understood that pain people talk about when your child is sick until I had Oliver. That just breaks my heart.
Ha ha, I'm glad you posted the happy stuff!!! I bet Elliott was hilarious since daddy was being so mean (just kidding!) by eating a banana in front of him. That's too cute.
Thanks for the funny's I personally find them very funny even in written form. It helps that I have seen Elliott's vigor towards eatting. What also adds to it is I can hear you telling the story and I can hear the exact point at which your voice breaks into your laugh/talking voice. I love that we have been friends for so long I know where your breaking point is in a story...And for the record Michael falling off the bed was the funniest story you ever told me you were laughing before you started!
I almost called you yesterday when I read the post about Trek passing (I started following their story shortly after you added them to your blog list when one of her post titles caught my eye). Anyway, I was *sobbing* reading the post and knew you were the only person that could understand why. I'm devastated for them, but at the same time they gave Trek such a beautiful life and treasured each day so fully, that you just can't help but be awed and inspired!
Your banana-starved, dehydrated baby is looking so very big and healthy, by the way.
Also, did the purple come off of the playdough at all and does it store well? I'm considering diving into the world of homemade craftiness.
i will have to go take a look at that blog :( sad. i am obsessed with sad blogs, creepy huh? my friend has an amazing blog about losing her son to SIDS. it's amazing and gut wrenching all in one.
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