It's been a couple weeks, since I've written - I've been meaning too, but I'm finding it harder and harder to put Kaleb down to do so. He's still holding steady, if that's what you want to call it. We recently met with the folks at Make A Wish and are hoping they will allow our entire family to be in on our wish. Our hope is to take a family vacation so that we will all have that memory of a beautiful, relaxing vacation with Kaleb.
Since diagnosis day, I've pretty much "celebrated" each holiday and birthday thinking it will be the last one he gets to share with us. I've often times found myself thinking that I wish I didn't know that Kaleb isn't going to be here for the years that we had hoped and then I think that if I didn't know, I wouldn't have the luxury, if you will, of treating each day like it's his last....let me explain...
A couple weeks ago a little boy was killed while waiting for his school bus to pick him up and I find myself thinking, what kind of morning did he have, were his mommy, daddy and siblings there, were they happy that morning, did they say good-bye with a hug and a kiss or was it a rushed morning and just a peck on the head - or God forbid did they have a bad morning, we all know that youngsters sometimes have a way of getting on your nerves every now and then. They had no way of knowing that when they sent him to the bus stop that morning, they'd never get to hug him again. So I guess in some sense, I am glad that I know - that way I can't take even a second for granted.
I am a fan of Garth Brooks and always thought I understood his song "The Dance" but I equated it to lost love more than anything else but, not anymore. I've often wondered what I would have done if I had known what was going to happen to Kaleb, and I guess I'll never really know the answer to that question, but I can't imagine, as hard as it is to watch him go - not having him to love at all - I don't think I would've missed this dance.
Last year, I spent most of my Mother's Day in tears, it was still only two months from diagnosis day and a month from the emotional NTSAD conference. During this time, little Elliot Schotz (who we met at the conference) - a 2 1/2 year old boy with Tay-Sachs had started to decline and earned his angel wings on Mother's Day, which just made it all seem too real. I spent my day thinking that this may be the last Mother's Day I have with Kaleb. Thankfully, it wasn't - and the only thing that could have made this Mother's Day better was if Christopher had been with me, but he did remember to call me.
We got to spend the weekend in a friends condo on the beach. I woke up Sunday morning listening to the waves crash against the shore, the sky was a beautiful shade of oranges and pinks as the sun slowly rose up over the ocean. Kaleb was laying next to me, looking in my direction with a smile on his face, a Mother's Day I will never forget. It was still in the back of my mind that, this Mother's Day will most likely be the last one I get to share with Kaleb - I tried not to let that thought consume me.
To all you Mom's out there, with healthy children, special children and the Mommy's of Angles, happy late Mother's Day!