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.

TOTALLY FORGOTTEN ABOUT HIM!

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."

Wow.

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!:
 

What's Been Goin' On?!

Well, obviously I've neglected your blog ONCE AGAIN.  I'm not even going to make any promises to keep up on it because I'm just so dang busy that I KNOW I won't be able to keep it.  The truth is I've been updating on Facebook a lot more these days which has just caused the blog to take a backseat.  I have been working very hard on something FOR you, so I'm not really feeling badly about this.  It's just that sometimes, something has to give.  I have realized that there are some people who check this blog who would love to hear this exciting news though, so here it goes.

Here is an article I recently wrote for your Daddy's newsletter:

"Having a newborn in the NICU and with complex medical issues was much different than what we had been used to with Carter’s healthy brother and sister.  It wasn’t very often that we would hear somebody say something positive about our little guy.  There was a lot of negative…a lot of focus on the things that he couldn’t do…on the things he wouldn’t do.  Of course, we always ALWAYS fought for Carter, and fought to stay on the positive side of things.  We loved HIM for being HIM.

Surgeries for cleft lips and palates aren’t always for cosmetic reasons.  Some of these babies have a hard time creating suction to eat, and Carter was one of those babies.  He had to have a G-Tube placed to give us a way to feed his tiny body.

One day we had to go to a class to learn about how to take care of the G-Tube.  The class was full of several couples, most of whom had premature babies who were having  trouble with feeding.  During that class, one of the moms asked us if our son was a preemie too.  My husband answered no, and told her that our baby had a cleft lip and palate which made it hard for him to eat.  It was at this point that the nurse teaching the class (whom we had never met before) spoke up and said “and he is the CA-UTEST baby EVER!”  We were surprised because it seemed as though this nurse had visited a lot of babies, but Carter had made an impression on her.  She proceeded to tell us that her daughter was also born with a cleft lip, and she had just completed a mission for a charity named Operation Smile.  This was the first time that somebody had given Carter a compliment without really knowing him.  This was the first time that we began to see that we weren’t alone in this part of our journey.  This was the first time that we realized the cleft really wasn’t all that scary, or different.  This was the first time that we realized that while we had the option to repair his cleft. There are many people in the world without the option. This was the beginning of our love for the charity Operation Smile. 

About a week before Carter’s birthday, we found out about a 5K/One Mile Walk that supported Operation Smile.  When we saw that it actually fell on his birthday, we knew that we had to participate.  A bunch of people from Team Carter met up at Timpanogos Park, and ran or walked to show our support.  Even Carter was there being pushed in his stroller and showing off his new smile.

 

 Two months after that perfect day, he passed away and our lives have never been the same.

When the time came for the next 5K/Walk, we knew that we had to keep on keepin’ on in his memory and we participated for the next two years. 

 

 This year it is going to be a little different.  This year, Team Carter has been put in charge of the race and we’ve decided that since this charity helps kids, we should offer a race for kids.  We are proud to announce that the 6^th Annual Operation Smile 5K/One Mile Walk & Kids’ K Run will be held on August 10^th at Jensen Park in Syracuse. We hope that Carter will be proud, and that we can give kids a new smile with every mile.

If you are interested in participating, or even just making donation, you can find out more information at A Smile For Every Mile

 

Your Fourth Birthday

Dear Carter,

It was brought to my attention recently that I haven't blogged in a long time.  As in a REALLY long time.  Once again, I've gotten all caught up in the day to day life, and the blog has slipped through the cracks.  Normally, I would have felt guilty about that, but I've decided that sometimes I just have to let a few things go for a bit.  It's not that I haven't been working on projects FOR you, or FORGOTTEN about you.....it's just that it doesn't seem quite as important anymore to write on here about it.  Things are starting to slow down a bit, so maybe I can get rolling on this again, but I'm not making any promises.

Let's see......so much to catch you up on.  Well, we surprised your brother and sister with a trip to Disneyland in February.  It was so fun to keep such a big secret, and we all had a blast!  As always, we spent some time on the beach and felt you with us.  We even saw Dolphins from the pier!!

 

I think that our favorite part was probably the new Cars Land.  We are Cars fans though!

 

Jovie's Birthday was a few days after we got back, and on that very day we found a perfect match for our family.  Introducing Pugsley!!

 

 

Then, not long after that, your Grandma Sherie finally retired from her job!!  It's so exciting to know that she doesn't have to worry about working anymore.

 

So that's what our family has been up to....along with planning a very special event coming up in August.  More on that later ;)

 

Yesterday was your fourth birthday.  We decided that the best way to celebrate your sweet life was to light off sky lanterns at your gravesite. We were shocked by how many people showed up, and we are so thankful to our friends and family for making this such a beautiful way to remember you.  I'll let the pictures speak for themselves.

 

On our way home, Jovie asked what happened to the lantern once we couldn't see them anymore.  Mikey's reply "Carter collected all of them and hung them in his Heaven house.".  And now I'm crying all over again.

 

Happy Birthday my sweet little one.  It's one more birthday that makes me closer to seeing you again. We love you and miss you with all of our hearts, and I hope that we are making you proud with the work we are doing for you.



End Up Here?

Dear Carter,

When I was a kid, I used to play in this Watermelon field that was right down the street from my house.  We used to have all kinds of fun in that field. We would pretend that we were on a Safari in the jungle, or hunting wild animals (snipe hunt anyone?). That field was the home of many adventures, and oddly enough, that field is where I am sitting right now.  In your room.

Who knew that I would end up here?  Wouldn't it be interesting to go back in time and tell myself, "hey, your house is going to be right there when you grow up".  It kind of already baffles my mind, and I'm the one who has followed the steps to get here.  There are so many other instances in my life when I have these kinds of thoughts.

Your brother and sister's school?  Well, that is actually where I went to school.  Right now I teach technology there with a couple of people who worked at that school when I was a student.  What do you think it would be like if I could go back in time and tell myself, "those people right over there will be your co-workers someday".  It's kind of a crazy idea to think about isn't it?

What about a couple of years before your Daddy and I started dating.  We both worked at McDonald's together, and were at complete opposite ends of the social spectrum.  Your Daddy was more of the "Prep", and I was more of the "Bad Girl Rocker Chick".  If you would have told me that I was going to one day marry Mike, I would have told you that you were crazy (and I'm sure he probably would have thought the same thing).

Now, if you would have told me five years ago that I was going to be given the hardest job in the entire world, I would have wondered what you are talking about.  Yet, here I am being the parent to a child in Heaven. Truth is, it definitely is the hardest job in the world, but I wouldn't change anything because in order to have this job, I had to be your Mommy.  Now that's something to be proud of.

I wonder what I'll want to tell myself five years from now.

Let It Snow

Dear Carter,

It snowed here like crazy last week. So much so that school got cancelled. I must admit that I was secretly crossing my fingers and hoping they would cancel school because there is not much that I like more than hanging out with our family in a warm house especially when we have no where to go. It was a nice change of pace, although it has been exceptionally cold and I am starting to crave that spring like weather.

Not much else is happening here. Just trying to stay warm and getting ready to gear up for your Operation Smile 5k this Summer.