February 11, 2014

My Words Will Be Your Light - To Carry You To Me

Dear Carter,

It's been a LONG time since I wrote you a letter. Since July I see.  Probably too long, but I have a feeling that you hear me talking to you ALL.THE.TIME, so I won't feel too guilty about it.  It just seems like I'm not sure where this blog quite fits anymore.  I'm no longer a part of the special needs community, and although I do fit into the grieving parents community.... I don't like being there (who does?).  I get so caught up in all of the good stuff we try to do for you, that it seems like something has to give....and the blog has been the thing to give.  I can promise to try harder to update, but just can't be sure if I can keep it, so I'll just say that I'm going to just keep on keepin' on and know that you understand.

For some reason, this last week has been a hard one for me.  I "think" that it might have something to do with the Winter Olympics, but I really can't be sure. It could also be that I haven't been quite as busy this week as I am used to.  I am constantly trying to do something to keep busy.  It's my coping mechanism, and this week has just been a little less busy.  Instead of trying to relax, I tend to tense up even more because my mind is allowed to wander to missing you. It's kind of funny how this one all started.  Last week, I woke up one morning and realized that I had had "that dream" again.  It's the one that haunts me about three times a year.  It's the one where you are still here with us, but we are racing against time to find the right doctor who can help you stay with us. Usually it's something silly that is standing in our way. In the end, I always wake up right before we run out of time. 

I tend to think that it is a blessing that I know to wake up at that moment.

It seems like I just wake up and that weight of missing you is so heavy on my shoulders, and it's something that takes awhile to get used to again. 

But I always get used to it again.

And I am getting used to it again.  So no worried phone calls please, I am totally OK. I actually have a purpose with this post.

Last night we were watching the Olympics, and watching the Men's Mogul skiers.  I had totally forgotten about my favorite skier.


How could I forget about Alex Bilodeau?!  I need to have his jersey or something (do they make skier jerseys?  haha!).

Anyway, as he won a Gold medal AGAIN, I was reminded of one of my most favorite blog posts from almost exactly 4 years ago.  Here it is:

"Sometimes I wonder how having a sibling like Carter will affect Mikey and Jovie.  I think that it's a worry that most special needs parents have.

At first, I was very concerned about how much they would miss out on with having a brother with limitations.  In the VERY beginning, I started thinking that there would be no way that we could go on a family vacation, or that we would miss out on fun things because of Carter. I know that these things are unrealistic, but I have to admit that it was something I would think about. How would Carter affect them?

I sat down with a friend who assured me that those things would still happen, and that my kids were definitely going to be better people for it (thank you Gretchen for that conversation). She even told me that she was thankful that her kids would be able to grow up knowing Carter.

It's true that we haven't done too many things this Winter while we're trying to keep Carter healthy, but we've still had a lot of family fun. I now know that having a child with disabilities is a new kind of normal and we're still going to be able to do all of those things that a "normal" family does. I honestly don't worry about it any more, although there may come a time when I do again.

These thoughts came into my mind again this week while we were watching the Olympics. Of course, I'm talking about Alex Bilodeau.  Who is Alex Bilodeau?  If you don't know, I'll happily fill you in.

Alex Bilodeau is a Men's Moguls skier who recently won the first gold medal for Canada on home soil.  The reason why I'm drawn to his story is that he has an older brother who has Cerebral Palsy.  There are so many interviews, and so many quotes about how having an older brother with a disability affected his life so it was hard to choose just one:

"I'm pretty sure I wouldn't have the same perseverance if I didn't grow up with him," said the 22-year-old from Montreal. "I'm someone who never quits, even in training. I'm going to fight until the last moment, until I crash really bad."

"In training, it's just like competition and I'm fighting until I can't go any more and until I'm on one ski or something. Even then, I try to pull it back. I grew up with the mentality, `If my brother would have that chance, would he take it? Would he try more?' I always – I always – come to that same answer and it's, `Yes, he would try more.' That's why I can do it."

"He wakes up in the morning and he's got that big smile; he goes to bed and he's got that big smile," Alex said. "And you look at him, and he's got all the right to complain. How many times do we complain in a day? I don't even think I can count mine. That's when you put everything in perspective and you say I should just shut up and swallow and go train."

"My brother is my inspiration," Alex said that night on TV, tears welling. "He taught me so many things in my life."


I can only hope that Carter can give the same inspiration to Mikey and Jovie.

But you know what?

I don't need to hope, because I know that it's already there.  I can see it when they look at him.  I can see their compassion growing. All I can do is thank God for giving us this wonderful gift. "

When I read that, I felt a smile on my face.  For them the circumstances have obviously changed, but one thing is still for sure.  Carter has impacted their lives for the better.  In ways that we probably haven't even realized yet.  Jovie was quite young when we lost Carter, so sometimes I think that her memories are built on the memories we tell her about, but he has still impacted her life.  She holds different priorities than most kids her age.  Mikey still remembers little C very clearly, and he has more compassion than I would have believed him to have otherwise. He is very serious about helping with the Operation Smile 5K, and wants to do his best at the Festival of Trees to raise money  for the hospital.

Somehow, knowing that Mikey and Jovie, and even I, and Michael, and our family, and friends, and everyone else who has been changed by Carter has been changed for the better in one way or another makes losing him not worth it, but somehow OK. 

It will never be worth it, but I am OK with it being just OK.

Here is a song for my little guy, I love you Bubba Jay!:


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