July 1, 2011

What It's Really Like

Have you ever tried to imagine what it's like to lose a child? I can't even count how many times people have told me "I can't even imagine". Of course you can't....why would you want to?

I'll admit it and say that I tried to imagine it A LOT after Carter was born. When you have a medically fragile child, you have to go there. You know that someday it probably will happen and you feel absolutely terrible thinking about it, but you feel like you have to prepare yourself. The ugly truth is that it is NOTHING like what you would imagine.

It's a lot worse.

After Carter was born, Michael's aunt sent us an essay by Emily Perl Kingsley titled "Welcome To Holland". If you aren't familiar with this essay, then you probably don't have a special needs child. You can take a peek at it here: Welcome To Holland.

Basically she talks about how becoming a special needs parent is a lot like planning a trip to beautiful Italy, but when you step off of the plane you realize that you've somehow landed in Holland. At first you're disappointed and uncomfortable in Holland, but as time goes on you learn to love it. These words are so true! Oh how I loved Holland, and I wish to go back there right now!

At the point when my sweet baby Carter took his last breath, I feel like we boarded a plane out of Holland and landed in an unknown area. It's not even fair to give this land a country's name because for the most part it is just plain ugly. The problem with this land is that once you are here, you can never EVER leave. Your passport has been revoked, and you just have to try your best to make a new life in this barren country. A country that NOBODY wants to live in. There is no way that I will ever learn to love it like I did in Holland, but I am sure trying my best to make it a little more beautiful in as many ways as I can.

Child loss is something that just isn't talked about much, and you can't even realize that there is this whole HUGE world of people living here until you're right here with them. It's true that this life after losing a child is different for everyone, but I've felt compelled to share with you what it's really like to live in my world. I'm not doing this to gain any pity, or to make people feel sad when they read it. I'm doing this so that people might have a clearer idea of what it's like to go through something like this...to maybe have a better understanding of how to help a friend who is just starting this journey...or to better prepare a parent who knows that one day they will have to live here too. I have been blessed that almost all of our family and friends have been absolutely wonderful and supportive through our journey so far. We are eternally grateful to them.

First, let me tell you about the ugly parts (there are beautiful parts, and I'll get to those). This is the world where every single moment of every single day I feel as though I literally have a piece of myself missing. It's still amazing to me how missing my baby brings so much pain. It's not just emotional as you would expect, but physical pain as well. I'll go about enjoying my day, and for a few moments I'll forget that I actually live here. That this is my new life.

Then suddenly BAM!

It feels as though somebody has just kicked me in the stomach. I feel the wind leave my lungs, and it literally hurts to even take the next breath because it is another breath I take without my sweet baby in my arms. As bad as these moments sound, I need them. As much as I dread them, I know that the pain is only there because I love him so much. Once they are over, I feel like I can go back to living again. Almost like the breakdowns are a cleansing of sorts.

I always ALWAYS feel as though I am on one giant roller coaster. There are days when I feel like Carter is really close to me. Like things are going to be OK. Like I can actually learn to at least like this land I live in. I always know that the next descent is coming up. I am expecting the deep dark cloud of grief to catch up with me at any moment, and it always does at moments that I don't expect.

I treasure each and every moment that I have with my living family. Mikey and Jovie take away some of the hurt, so when they are at school I feel the empty hole even more strongly. Each reunion with them feels like a great joyous occasion. I appreciate the little things, and I feel sad that it took losing my son to be able to do that. I get annoyed when people complain to me about how their baby kept them up all night, or how their baby never wants to be put down because I long for those moments with Carter.

Everybody who lives here has a different trigger. For most it is babies who resemble their own lost ones. I no longer feel any type of jealousy toward people who have these babies. I feel a tinge of sadness when I am around one, but I can not bring myself to hold or take care of a baby who resembles Carter. I don't think I ever will. So a word of advice to all of you out there who have friends who may be living in this land...It is OK for a baby loss parent to hold your baby if they ask to. Don't ever ask if they will...ask them if they want to. Give them the option to say no. For some of us it feels like cheating, and it's way too hard to be put on the spot like that.

I want people to mention Carter. Not so much his death, but I definitely want to talk about his life. People often think that if they mention him, it will only make us sad. I want to talk about him. He was my son. I am proud of him. I want him to be remembered. I need to remember that he lived. I feel ecstatic when people leave something on his grave, or when they do something in memory of him. This way I know that he has not been forgotten, and that he really did impact this world.

As time goes on, I begin to panic when the memories of him start to fade. I try so SO hard to remember every single tiny insignificant detail about him, and when I start to forget I find myself in a panic. When I can't recall exactly what his skin felt like, or what he smelled like. I had a moment the other day when I realized that I have a patch of his hair packed away among his things and was thrilled that I got to touch it again. Mostly I miss the way his skin felt, or the way his breath smelled.

There are certain days when this land feels simply unbearable. Mostly on dates like his birthday, or the day he went to Heaven. On these days I feel as though nobody should expect much from me...these are the days when I need to feel the reality. I need to push through it to get to the other side. I don't want people calling me and asking me for favors on this day, these are days that are sacred to our family.

Even amongst all of these bad things, there are a lot of things that really are beautiful about living here.

Of course the most beautiful thing is that I now know without a doubt that my baby is completely healed and will never feel pain again. I mean, how can you top anything like that? He is surrounded by many people who love him, and I know that he can still feel the love that we have for him down here.

Carter's death has also given me a much stronger relationship with God. I have a deeper understanding that this life is only a very small part of the big picture. I take so much comfort in knowing that I will be with Carter for much MUCH longer than I will be without him.

I now feel completely different than I did before about many things. I no longer fear death. Of course I don't want to be reckless, but when people mention that they are scared of flying because they might crash, I no longer comprehend that kind of fear. I treasure each and every day of this life because it is a gift of God, but I no longer fear the moment that He decides to take me from this Earth.

Carter's life and death also introduced me to many many wonderful people who I would have never met without him, and has strengthened the bonds between our friends and family. Without them, I don't know if I could live in this world. Seeing how Carter can still make a strong impact on their lives is one of the best things about living here.

It makes it OK.
Most of the time.


Colleen said...

Oh my goodness, tears flowing. Such a beautiful and real description. I'm so glad to "know" you through Carters amazing life.

Michelle said...

speechless. (hugs) and prayers.

Shannon said...

Robbie's birthday is July 4th. He would be 11 this year. I still miss him every day and I'm glad that I still miss him. I never want to lose that or "get over it" as so many people think you should. It was very timely to read your story and one part in particular really resonated with me. The paragraph that started with "I want people to mention Carter." I have said those words almost verbatim.

I think that those of us who have watched our children die have a special blessing. We understand how fragile and precious life is and are able to take much more joy in little things. You also learn that things that used to be a big deal no longer are. Without the bitter, the sweet isn't as sweet.

Our Family said...

thank you. i have a close friend who lost her full term, healthy son at birth. i have learned a lot from her. she is probably one of the reasons why i love my rachel so much. i will never forget what she went through, and still goes through.

wendy said...

thank you for putting this into words. you are such a blessing to so many. including me. love you.

Chrissy said...

All I can say is....I cannot imagine...not having you in my life. God gave me a gift when he allowed me to meet you. I love you girl.

Kris said...

Oh, Heather... *hugs*

I still struggle with the fact that the only life my Luke had was inside of me, and so I am the only one who can remember it. But it was a life, and I got to hold him for every second of it. :)

Amy said...

Heather, thank you for so openly and honestly sharing as always. I had two sisters that died shortly after birth and while I've always felt a sibling loss, this really helped confirm what I've always suspected my mother felt. Lindsay would have been 26 this year and Catharin would have turned 30 this month. They are still ever present in my mind as Carter will be in your and your famiies'.

Holly said...

I know many of us can relate to what you have written.

Rebekah said...

This is beautiful. I found your site through the yahoo utah cleft group. My little guy also has a lot of medical challenges. His is main challenge is trisomy 18 and we were told before he was born that he was "incomaptible with life." So someday, I know I'll be where you are, and I know a lot of moms where you are. I'm linking to my T18 facebook because you put so beautifully what I know other angel moms are struggling with. Thank you so much for sharing.

Rachael said...

Heather I love you and you are truly amazing. Thank you for saying what so many of us feel but never know how to perfectly say it...you just did! I think about you and Carter all the time. My heart will always ache for you. Thank you again for being amazing. <3<3<3 you.

Heidi said...

Do you know the Mumford & Sons song "Timshel?" It made me think of you today and how, from your pain, you're choosing to shape the world for your two oldest in honor of your Carter. And how you're being a voice for others who have suffered a loss and don't have your skill with words to communicate their grief. And how you're choosing to find God in this blackness when it would be easy to just curse the dark.

You, my friend, are held in my heart and I thank you for your vision and courage.

Lacey said...

I'm one of those that says I cant even imagine. Because i cant, and it scares me when you say its a million times worse, because thats what i fear! Like you said, having a medically fragile child makes you think about death too much. And after almost losing Jax twice, it scares me so much to think about it. And if it makes sense, i actually feel like the longer i have him, the harder it will be to let him go. I love to just smell his skin, and his breath smells like heaven to me. Maybe its the not eating by mouth that makes the breath so sweet!
Thanks for being so honest and sharing your feelings.

Kimberly Krey said...

That was simply beautiful. Thank you for sharing with us. <3