We’re still here, soaking up the heat and praying for cooler weather. We had an amazing summer with all of the kids, and we somehow made it through the July anniversary I had been dreading for most of the year. Thank God for my two amazing little (not-so-little) girls, and our near-perfect 8 month old baby. My three precious blessings can sure make me smile, even when I‘m feeling less than happy.
It’s amazing how different things are now, raising Carter. We haven’t seen a doctor in two months, and that alone is surreal after our experience with Holden. I could have told you how much Holden weighed- down to the ounce- on any given day. I could have told you all of his numbers- weight, BUN, lipase, lytes… With Carter, we just assume all is well, and it’s a wonderful feeling.
I always thought Kaitlyn was an easy, happy baby, but Carter‘s shown us what easygoing really looks like. He’s an incredibly happy baby, and he’s always smiling. I can probably count on my fingers how many times he’s actually cried. He’s a ray of sunshine, for sure.
We can instantly reverse any bad mood by singing, and almost any song will do. He’s starting to become a little more mobile, but he’s not crawling yet. I think his sweet disposition has a lot to do with him not moving around- he’s pretty much content wherever he is, even when he’s stationary.
I’m not sure if poor Carter is ever going to have enough hair to cut. By the time Holden was this age, he had already had his first haircut. For now, Carter has a Mohawk thing going on, and it’s pretty much adorable.
He babbles, claps his hands, gives sugars (kisses), runs around in his entertainment center, and eats Cheerios like it’s his job. Aside from the Blue Bell ice cream his Daddy shares daily, they’re probably his favorite food. He still loves to nurse, but sleeping has become an unwelcome chore for him. (I guess if that’s my biggest complaint, we’re pretty lucky.)
He has the most precious laugh- more of a chuckle, really. It melts my heart every time. We have been enormously blessed with this sweet little boy, and I thank God for him and his sisters each and every day.
I had never heard of a “rainbow baby“ until I was pregnant with Carter. The rainbow after the storm. A baby sent to help ease the hurt of a lost child. Carter is the first brick in the rebuilding of a family that has suffered a tremendous, unexplainable loss. He is not a replacement. The hole left by a missing sibling can't be filled, but these rainbow babies are a solid first step in a never-ending healing process.
It's easy to be joyful when the sun is shining on my perfectly healthy, happy, smiling baby boy. But sometimes it’s a conscious choice to be joyful- to choose joy- when the darkness threatens to take over.
"In Christ there are no goodbyes. In Christ there is no end." These words run through my mind quite frequently. I’ve lived by them for more than a year, and I’m clinging to them now. I silently mumble them to myself when one of those days comes along and my heart is exceptionally sensitive to grief.
Grief is a crazy thing. Just when I think I've got it all figured out, I realize that I‘ll never have it all figured out. The tears don’t spill over every day now. Sometimes I can go days without a single tear. It doesn't mean that I don't miss Holden. It doesn't mean that I don't hurt. It doesn't mean anything other than that I'm slowly learning how to function in a world that will never be right again.
Then there are the other days- days when everything catches up with me.
Days when I don't want to be strong. When I just feel defeated. When all I want is for the world to swallow me up and let me cry.
Cry because I miss my little boy. Cry because it hurts like hell. Cry because every song on the radio reminds me of him. Cry because his favorite movie (Finding Nemo) is coming out in 3D, and I think of how much he would have loved the experience. Cry because of the reality that our family will never be whole, at least not in this life. Cry because I have a million pictures of Kaitlyn and Rylie together, and I'll never have one of my boys smiling side by side. Cry because the details of that horrible day creep into my mind hundreds of times each day. Then cry some more because those details make me physically ill.
Fourteen months ago, life as we knew it came to a screeching halt. The world around us kept spinning, but we stood motionless, gasping for air and praying that we would wake up from the horrendous nightmare. I remember it all. Every detail. I can hardly remember what I wore yesterday, yet every single detail of that day in July is crystal clear. I remember the clothes we were wearing. The smells. The sounds. The fear that took over my body. The faces of everyone in the room, trying to save our little man's life. Making decisions that I never imagined myself having to make. Begging God to take anything else, to take me instead. I remember it all. I've been fighting those memories for more than a year. They sneak in and threaten to consume me when I let my guard down. They make my stomach churn, my heart ache and my whole body feel like its revolting against me. I have so many beautiful memories that I carry in my heart, but I can’t seem to shake these.
In the span of a year and a half, we went from being the parents of a heart warrior, to being the shocked, grieving parents of a heart angel, struggling to mend our own broken hearts.
The challenges we’ve been faced with in life make absolutely no sense to me. None. Why would a God who loves unconditionally bless us with a child, make us watch him fight for his life, and then take him away? I don’t understand it, but at the same time I trust. I trust God’s plan for my life, even when it breaks my heart.
Our hearts may be broken- Holden’s heart was broken, to be sure. But the hope that sustained it wasn’t lost. His hope, his heart, will never be lost. He had a rough and exhausting journey, but he sure was happy. When it comes down to it, isn’t that what matters most?
I pray that I am reminded every day of what matters most. I hope I remember to hug my babies a little tighter. To give thanks for my blessings. To take a step back and truly appreciate the gifts I’ve been given, even when life feels chaotic or overwhelming.
Each and every day is progress, even if that progress is slow. I'm still raw, and will probably always feel the same. I wake up every morning to a world that isn't right- a world where I can almost physically feel the hole in my heart. Even the happiest of days are colored black around the edges, because nothing will ever heal this particular hurt.
Being the mother of a heart angel puts me in a very confusing position. I am a heart mom without my heart child. I no longer live with the day to day stresses that once ruled my life. I don't plan my days around upcoming appointments or surgeries or therapies. I don't give medications every hour or obsessively stare at the blinking numbers on a monitor. These responsibilities were taken away from me with no warning when God decided that our little man had fulfilled his purpose here on Earth.
My heart journey changed the day that Holden earned his wings. We shifted from focusing wholly on Holden’s heart, to focusing on the impact he had on our own hearts. I am a different person. I am a better person. I am stronger. I love others more completely. I live for every moment of every day. I am a better wife to his Daddy, and a better Mama to his big sisters and his new (heart-healthy) baby brother. Holden opened my eyes to a world that I never knew existed, and he brought incredible people- doctors, nurses, other heart families- into my life. Pretty impressive accomplishments for a little boy who only lived 17 short months.
So, here I am. A heart mom who doesn't live like a traditional heart mom. I hold my new healthy baby in my arms and probably appear to be mostly happy. But appearances can be deceiving. Nobody can see the heaviness in my heart. I will always be a little broken. I will always miss my baby, and I’d do anything to have him in my arms again.
The question is, what do I do now? I can't stay in my bed and pout. I can't pretend like having Carter makes everything better. I can't forget about the heart community just because I feel like I'm somewhat of an outsider. A scary outsider, no less, to the heart families whose biggest fear is having to walk in my shoes. I remember it well, that fear. That irrational fantasy world where nothing bad would happen as long as I didn‘t acknowledge the outcomes that were less than perfect. My heart broke for those families, even as I tried to distance myself as much as possible from them- like it could be contagious. Now, we‘re those people. “There but for the grace of God go I.”
It's been 14 months since Holden earned his wings. An entire year of “firsts” without Holden. Sometimes it feels like just yesterday, and other times I feel like life is standing still. I find comfort knowing that God trusted us, and only us, to take care of him during his short stay, and I am overwhelmingly thankful for that time with him.
I'm doing my best to keep his memory strong and his story alive in people's hearts. I still believe that one day, his legacy will change the world for the better. His heart- his hope- still has a story, and it is very much alive in my heart.