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.

The Little Things

Sometimes it's the little things that can just tear my heart out.

Jovie brought home a paper from school today that asked if there were any siblings who needed to sign up for Kindergarten. The school sends it out every year as a way to round them up. I have to admit that although you wouldn't have been in Kindergarten, it stung to see that. I will never be able to fill out that paper with your name and something as simple as that just breaks my heart.

On the other hand, sometimes it's the little things that can just make my day. Like, when someone mentions you, or someone asks a question about you.

Who knew that little things would seem so big.

Hard Goodbyes

Dear Carter,

Today brought one of those tough goodbyes that we knew would be coming... I just didn't think it would be today.

We said goodbye to our sweet little Dachsund, Bud, today. He really was a good boy, and has been with your Daddy and I since we started dating. It's weird to think that he's not here anymore. Jovie is the one who is taking it the hardest by far, but I think that she will be ok. She always considered that little dog as hers. I don't think that she will be without a puppy for long.

So, I believe that all dogs go to Heaven too which makes me think that you are playing with a new puppy tonight. Give him a kiss from all of us.

We love you both.

Seven, really??

Dear Carter,

I can't believe we are a week into January already. I've been keeping with all of my little projects, and it's been good for me. I really feel like I am on top of things for the time being..... Now let's see if I can keep it up.

Today, I worked on planning Jovie's birthday party. I simply can NOT believe that she is almost seven. Her birthday isn't until the middle of February, but we are going to be very busy for those first few weeks, so I thought I'd better get a jump on it now.

She's so dang cute, and was all about making lists of the guests she would like to have, the food, the activities.... Maybe I just need to put her in charge of Mikey's party this year! This is her first "friend" party, so I think she's a bit extra excited.

If only she knew what we have planned for her the week before (I can't wait to spill the beans!!)

I love you my sweetheart. My next project is something very cool for your birthday.

A World Of Barbie

Dear Carter,

Today was another freezing cold day which made it the perfect opportunity to snuggle up with your big sis and watch a Barbie movie.

The thing about Barbie movies is that they are soooooo magical. Usually the lead character (who isn't usually named Barbie) has some sort of magical power. In this particular movie, she had a hairbrush that could change her entire hairstyle with a swipe over her head. This is the kind of world that Jovie lives in. Where movies like this could really "maybe" happen in real life. Although lately I've noticed that she's trying hard to decipher what is real or fake.

As cheesy as it sounds, it's kind of nice to cuddle up to her and live in her world for a little while. I loathe the day when she grows too old for these types of movies. Why does she have to grow up so fast? I really need to be BETTER at slowing down with her and seeing the world through her eyes because it won't be long before her world won't be so innocent anymore.

I knew that there would come a day when I would lose you.... I just thought that I had more time. Don't we always?? I remember rocking you and smelling you and listening to you and kissing on you and cuddling with you and thinking to myself that I needed to imprint every single second with you in my mind. And you know what?? I kind of did although there are certain things that seem a little fuzzy now. It only takes a small trigger to bring it all back to life. I feel like from now on I need to do the same with Daddy, Mikey, Jovie, and all of my family and friends. I need to make every single second count because life flies by so dang fast. Of course this is easy to say., and a little harder to do because sometimes day to day life gets in the way, but I am telling you that I am going to try.

I'm going to keep trying to be better.

Techno Freaks!

Dear Carter Jay,

I'm cracking up over this picture I took at dinner time today.  Do you think our family likes technology a bit much??  Trust me when I say that this is not allowed at every dinner, but sometimes we all just need a break from each other so we can eat in peace.  Could those two be any more alike?!

I often wonder what kind of milestones you would have reached if you were still here with us.  Would you benefit from the use of an iPad?  While you were here, they were just barely becoming accessible and now it seems that most everyone has one.  What about later in life?  Will they develop a new way to fix a damaged trachea?  What kind of life would you have lived had you been born in a different time?  You certainly wouldn't have been with us as long as you were if you were born a century ago.

These are the kinds of questions that go through a grieving mommy's brain.  All of the "what ifs" and "how comes". I let myself go there sometimes because it gives me the opportunity to make up a better outcome for you (not better for you because I know that you are completely healed now, but maybe a better outcome for us?).  Sometimes it hurts a little too much to think of all of the "what ifs" and I have to distract myself with something else, but they are always ALWAYS there. If even just a whisper.

My Orchid

Dear Carter,

I have this thing where I really like to buy plants at the end of the season when they are 80% off, and they look so sickly that you just aren't sure if they are going to make it. Some of them do, and some of them don't, but there is something in the thrill of the chance. Can I really bring a plant back to health? Back to the way it was before??

I bought this orchid at the end of the season last year, and it's doing well. I'm anxious to see if it will bloom. I give it all of the proper attention, and will continue to, but sometimes it's just up to the plant if its going to bloom or not. There's nothing more I can do.

Today while looking at my beautiful Orchid, I started to wonder if this is how God thinks of me. I think that he surely gives me all of the proper attention, but now it's just up to me to bloom. He knows that there have been several points in my life when I have been on the 80% off rack just hoping that He would take a chance on me.

And I have no doubts that He always does.

And He has a way of making me whole again. I just have to put forth the effort to hold up my end of the deal and bloom.

I'm working on it.

And I hope the little Orchid is too.

My Fortune

Dear Carter,

The new year is under way now, and I can't help but think that the fortune I got in my cookie yesterday was no accident.

It's true that life has a lot of fine things that I used to overlook, and of course maybe there have been times when I have taken my friends for granted. I'd like to think that you changed that for me though.

Through your life, and especially through your death, I have really learned to appreciate the small gifts that God has blessed me with. I have also learned who my true friends are, and it's sad to me that it took losing you to really learn those lessons. Almost everything I do any more is about "making memories". After all, when this is all over, that's all I will have left. Of course I still get tied up in the trivial things, but I am certainly trying to do better with always concentrating on what's really important.

Like I said before, it's all about being better.

Goodbye 2012

Dear Carter Jay,

This year treated our family pretty good.  The only thing that would have made it better is if you could have been here with us, but since that can't happen....it was as close to great as we can get. As the year comes to a close, I wanted to share a few of my favorite highlights. we have so much to be thankful for.

There were a lot of exciting changes. A lot of exciting accomplishments that your brother and sister made. Your Daddy continued to find his footing in his management job too, and even won an award for "Most Improved Territory".  He's very humble, and won't take credit for the award, but we know better.  He totally deserves it!

I started out the year working at your brother and sister's school as a tutor.  Unfortunately my funding got cut this fall, and I went back to being a stay at home mom for a little while.  I'm excited to say that I'm working at the school again as a Computer Lab Manager.  While I still miss my old job, this one is pretty dang good too, and the best part is that I get to be near your brother and sister all day long.

At the beginning of the year, we took a family trip to San Diego. I LOVE going to the beach because I always picture you up in Heaven as my little surfer boy.  This trip brought some much needed relaxation, and their were several moments where we felt closer to you. There were so many memories that will always be held close to our hearts.

On your birthday, we sent you several balloons with little messages on them for you.  I hope that you liked them. 

Not too long after that we entered into the world of camping. We spent several weekends over the summer in our little tent trailer. It was so much fun!

Jovie joined a competition dance team, and although she hasn't competed yet, she loves it!

Your Grandpa retired, and we threw him a party.  Way to go Grandpa!!

Mikey finally found his niche and joined a swim team.  We are so excited to see where this path will lead him.

I had the opportunity to visit my Grandparents, Aunt, Uncles, and Cousin back in Michigan. I hadn't been back there in over ten years.  It was a huge blessing to reconnect with family, and I hope I can do it again soon.

I left Michigan to meet Daddy in Chicago.  He was there for a work convention, but we still had a little bit of time to play. I LOVED Chicago, and would go back any time!

We all packed up and took a trip to Montana to see Grandma Mary. It was a quick and relaxing trip.

Then of course we ran in the Operation Smile 5k in memory of you. The most exciting part is that in 2013 we will be taking over the race.  I hope we can continue to make you proud baby boy!

 

Finally, we had seven items donated to the Festival Of Trees in your memory, and they raised over $5000.  It was our biggest donation yet!

Most of all, we missed you like crazy.  You can see it in your brother and sister's faces when they got their first "Carter" sweatshirts.  We pray that next year will be another good one for our family, and we will continue to find ways to include you in everything we do.  We love you. 

Resolutions

Dear Carter,

Well, it's that time again.

The time to start another year learning how to be a mommy to a baby up in Heaven.  I feel as though I've made a LOT of progress, but there is still so much I need to learn and work on. 

Every year it seems that I make resolutions, and this year will be no different.  I'm making only one resolution.

I want to be better.

I will be better.

Better at what you ask?  Better at everything.  Even if it's the slightest improvement.... I just want to be better. 

So there you have it baby boy, my New Year's Resolution.  Here's to 2013, and praying that it's a good year for our family. Nothing will ever top our 2009 when you were born, and we got to spend the majority of our year with you.

But maybe, this year will be a little better than last?

Only time will tell.

Happy New Year Sweet Pea!

The Festival Of Trees - The True Spirit Of Christmas

Dear Carter,

Have I mentioned to you how much I LOVE the Festival Of Trees?!? 

I feel as though it happened so, SO long ago, yet it's been less than a month.  This year we decided to go ahead and try our hand at the large trees.  I think that we did a pretty darn good job for our first year! You were actually represented by seven, YES SEVEN! items that were decorated and donated in your memory.  Each year it just keeps getting bigger and better!

When we got there, Daddy got to work putting the lights on your tree.  We had a lot of them!

We were sure to add a LOT of personal "Carter" touches to this tree.  Remember when Under Armour donated a whole bunch of stuff for your display??  This hat was in there, and you could personalize it with any number you would like.  We chose to use "CJ" for Carter Jay instead.  I loved how the elf is wearing a hat!

Then we had some fun with the blocks under the tree!

 All of the elves either had a headband, hat, or backpack to sport your Under Armour stuff.

 

Just like you always used to sport!

 We are so blessed by the best friends who continue to help us with this each and every year.

 

We love you and miss you so much Baby Boy!

 Grandma Geri donated a small tree, a centerpiece, and helped her cousin with another five foot tree.  She sure does love you!

 

 Cousin Monica, Uncle Marty, Aunt Nelva, and Cousin Erika worked on a tree for you.  It turned out adorable!

 Aunt Stacy and Cousin Samantha decorated a beautiful 12 Days Of Christmas tree. So cute!

 Aunt Nancy made a pinecone wreath that got a LOT of attention by a bunch people.  It's spectacular!

 And of course your brother and sister with their little trees.

 

Your Daddy and I went back on Opening Night, and I am thrilled to tell you that ALL of your items sold.  We even got to meet the people who purchased your Large tree for a whopping $4080!  When everything was said and done, Team Carter managed to raise well over $5000 in your memory.  We are so proud to do this for you every year, and already have plans for next year. 

 

Thank you so much for showing us the true meaning of Christmas, and even though this time of year is much tougher for us with the missing you, doing things like this makes it so much better.

 

I miss you my sweet little darling.  I hope that  you have the perfect Christmas celebration, and even if I don't get the chance to tell you so on this blog, know that I am constantly thinking of you and missing you with all of my heart.

 

Love,

Momma