Thursday, November 1, 2012

Unfortunate Anniversaries

I always second guess myself when I open up this blog to write. I seem to only feel called to write when I’m having one of those days, when my heart feels pulled to my little heart angel in Heaven. I feel guilty for not writing about the good days, about the girls or Carter. But on days like today, the need to share my grief is so strong.

Halloween and the day that follows will always be bittersweet days for our family. October 31st was the last “normal” night for our Holden. The last night his little body looked perfect from the outside. The last night his bedtime routine included a bath and snuggles instead of multiple meds and monitors. The last night he nursed to sleep instead of being hooked up to a feeding pump. I didn’t even dress him in a costume, naively believing that he would have many more years to dress up. He never saw his second Halloween.

Two years ago today, we took our brave boy in for the surgery that would alter our lives forever. I didn’t know that Halloween night would be the last of so many things, but I don’t know that we would have done anything differently. He was so loved, and I think he knew it. I so hope he knew.

I hate these morbid anniversaries that I can’t seem to forget. I hate measuring my months and years by the days they contain that break my heart. I miss him every single day- that never changes. Some days, like today, are harder than others. I can’t always predict them. Sometimes, the pain surprises me and leaves me breathless. My eyes fill constantly with tears, even as I try to keep smiling through them for the sake of everyone else. I sit and stare at his pictures, trying to imagine what our lives would be like if he were still a part of them. I stare, fixated, remembering how soft his skin was. How shiny and beautiful every scar on his body looked. How he could scrunch his little face up into the "bull face", and wrap everyone he met around his little finger. How his eyes seemed much older than his seventeen months, as if he knew so much more than we ever would. How he greeted each day with a smile, even the days he knew would bring nothing but pain.

I wanted nothing more than for God to make that pain go away- to make him all better. To heal his sick little heart. I couldn’t know, then, that healing Holden’s heart would mean breaking ours.

I miss you, little man. Beyond words. Beyond explanation. Beyond measure.

Friday, September 7, 2012


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.

Thursday, May 24, 2012


Last May, we were right in the middle of our stolen months with Holden at home, in an unseasonably cool month that allowed our nature-loving boy to spend every waking hour in his stroller. This May, I’m still spending a lot of my time outdoors, but it’s a different baby in the stroller. It's a surreal life at times.

I keep waiting to wake up and return to normal, but normal is gone.

That sweet new baby in the stroller has done more for my spirit this year than I ever thought possible. I think the main thing I’m going to remember about Carter’s first few months is joy. He radiates joy. He brings so much happiness to hearts that have been filled with bitterness and regret. I call him my Stinkbug, but he has also been my saving grace. He’s healed our hearts in so many ways.

He is the happiest baby I have ever known. He is constantly smiling. When he sees my face in the morning, through diaper changes, at family, at strangers- he even smiles when we give him medicine. He smiles throughout the day, so much that it’s hard to be anything but joyful when I look at his face.

And it’s a fat, handsome little face. He joined the world as a big baby, and his growth hasn’t slowed down at all. He is over seventeen pounds, probably eighteen by now! He's wearing 9-12 month clothes already, and his head is so big that I can’t fit it through shirts that don’t include buttons. He is a monster baby, for sure, but that’s one of our blessings. As his godmother says: We prayed for healthy and strong, and God delivered!

Carter’s little body is healthy and perfect, and I thank God for that every day. Every single day.

He is already spoiled rotten, and I don’t know if I could stop myself if I tried. I don't even try. I just want to enjoy his babyhood as long as I can! I find myself wanting to memorize every little thing. The sweet smell of his baby scent and little boy sweat. The feel of his peach fuzz head on my cheek. His smile as he’s nursing and feeling playful. The way he snuggles up to his burp cloth and sings himself to sleep. I stare at him as he sleeps, letting him linger a little longer than necessary, snuggled into my body. I know that those memories will be forever etched in my mind, no matter what happens tomorrow.

He doesn’t know yet that the world can be a cruel and ugly place, and I pray he doesn’t find that truth for a very long time.

Seeing Holden's life cut so short has made me immeasurably grateful for the little moments, which I now know I am never guaranteed. But at the same time, I’m also incredibly wary. When you live every second with the knowledge that there’s no guarantee, it’s so hard to ever be truly happy in the moment. I’m trying to learn how to enjoy each moment in the moment, because there may not be another, but it's difficult.

Many people have asked about my virtual silence, and I’ve told them all the same thing: sometimes, it’s just too much. I don’t even know whose story I’m telling anymore. Is it Holden’s, or my own? It’s hard to write, it’s hard to find the words to adequately describe what I’m feeling, and it’s a struggle to describe our lives without sounding like I’m whining.

We have much to be thankful for, but I struggle daily. I struggle to be thankful, when I feel like so much has been stolen from us. I struggle to be faithful to a God who is always good when I am not. I struggle with acknowledging the little blessings that are made our own each day, while trying not to dwell on how much I don't have. I struggle with being happy in the moment. Some days, I just don’t feel like being happy.

I’ve been attempting to rejoin the world of the living, after spending much of the past year in a fog of depression. I’m trying to find my way out of that fog, but it’s sneaky. It comes back for me every time.

I’ve also been looking for a job for a while now, as part of my efforts to rejoin the world. Jobs are hard to come by in the best of circumstances, and I don’t think mine have been the best. It only adds to the fog to get turned down so many times. But I’ve been out of that world for almost three years now. I know potential employers look at my resume and wonder what I've been doing for the past three years. How do I even begin to describe what my job has been for so long? I'm sure I'm not alone in the depressing task of job searching, especially not in this job market. It’s just one more bump in the road, but I hope that it will be a small bump in the long run.

Our road is full of those small bumps. I think so much of what has gotten me through each day was simply survival- the need to get up each morning, because I didn’t have a choice. I’ve lived with daily, constant visions of what could have been- what should have been. I second guess every decision we made, and I think of everything I would have done differently had I known what the outcome would be.

We handed our brave little man over to others who were better equipped to take care of him, time after time. Surgeons, doctors, nurses. Ultimately, God. It’s funny that the safest arms for him have been the hardest for me to accept.

There’s a Holden shaped hole in our house, and I’m exhausted with trying to remember how this place felt when he was here with us. Did I appreciate each breath he took? Did I notice each time he laughed- truly notice? Did I remember to recognize each second with him as a miracle? Did I thank God enough for those seconds? I don’t know if I did any of those things, not enough. But I do them now.

Plastic containers below our bed sort clothes he’ll never wear again. The puppy sleeper he was wearing the night before his surgery. The button-up shirt that made him look like such a big boy for his one year pictures. The soft little jacket that covered him when he came home from the hospital last spring. The camo fleece outfit he wore on Christmas day. I can’t put Carter in them, but I can’t bear to get rid of them, either.

His big memory box sits in our closet, and I can only handle opening it occasionally. I read through the hundreds of cards, letters and notes from people who were touched by Holden’s journey. I’m amazed that a child who had no words spoke to the hearts of so many.

More than anything, that’s what I need to remember. He mattered.

I need his life validated. I need to know that his life and death made a difference. That he’s not forgotten. That his hope is not lost. That his legacy didn’t go unnoticed.

This part of the journey is the hardest of all. It’s challenging, and lonely at times. I’ve depended on many people to help lighten the load, and it's been really hard to be that person who needs so much. So many of you have ministered to me in the most amazing ways, and God seems to use you exactly when I need you most.

You all remind me often that nothing about Holden has been lost. I am humbled. I am grateful. And I am certain your prayers have brought untold blessings to our lives.

I try each day to grow closer to God, so I know who my baby is living with now. That has also been a struggle. It takes a mighty effort to get past the mad so that I can even try.

They say God's grace should be sufficient in seeing me through the darkest days, but honestly? Sometimes it isn’t. It’s hard to admit, but it’s the truth. Sometimes I hurt so much that nothing is sufficient. Of course, I’m mourning for my own loss, not Holden’s. I know where he is, and I do take some comfort out of that. But it doesn’t change the emptiness I feel.

My view of the world is bitter at times, even with the sweet in my life. But I hope that someday, next week or next year, my view will be a little bit different.

God’s grace is more than I deserve, and He gives it to me anyway. So today, I’m not asking Him to take the pain away. I’m just asking for His mercy. Praise God for His patience in moving my feet to a better view.

Thursday, February 2, 2012

Happy birthday, Holden

Happy birthday, my little Braveheart. You would have been two years old today. I've been half dreading this day for some time now, while praying that God would give me the grace to celebrate your day with joy. And I'm trying- I really am. I'm struggling today, as I struggle every day, with the realization that my arms will never hold you again in this life.

It's still hard to accept that you're not coming home- That I am not your home anymore.

Are you having a good birthday? Do you even know what a special day it is? I try so hard to imagine what you're experiencing right now, but I just can't. My mind wasn't meant to comprehend something so perfectly complete.

I'm making the effort today- and it is a mighty effort- to be joyful and thankful for the time we were given, and not dwell on what we no longer have. It's harder than it sounds, to feel but not dwell.

But I am thankful, so very thankful, for the gift of you. Because of you, I have learned to believe in hope. I've learned that prayers are answered. I've learned to praise God for every day that brings me one day closer to you, while celebrating every little blessing along the way. As parents, we're supposed to teach our children, but all along you were the teacher. Thank you for teaching me what grace truly means.

You were always meant for bigger things than this ugly world, and I am eternally grateful for the short time you spent with us here. I thank God every day for loving me enough to let me be your Mommy.

I used to tell you all the time that I was proud of you. I am still so proud of you, my little man, and I always will be.

Before you, I believed in the possibility of miracles. Because of you, I know they're real.

Happy birthday, my sweet boy. You are so loved.

Tuesday, January 24, 2012


We have a new baby. I'm still recovering from the surgery and sick from some kind of infection. I have a chubby little boy attached to me 97% of the time. I haven't blogged in months... Yet somehow I felt drawn here today. I don't know why, but maybe it will happen more often. I don't have any good excuses for not updating the blog since November- I really have nothing. All I can say is it's hard to put myself here sometimes. I can't help but think of this as "Holden's blog", even now. I feel somehow wrong posting about our lives continuing here, when it seems as though time should have stopped on July 7th.

Time doesn't stop. The world doesn't stop spinning, even when it feels like the universe is upside down. God continues to bless our lives in unimaginable ways, every single day. Life is still bittersweet in so many ways, and it may be like this for the rest of my life. That makes sense in a way, since a piece of me will always be missing.

Despite the gaping hole in our hearts, we have so many reasons to be happy right now. We had a great Christmas with the girls here, and we had multiple Christmas celebrations with different groups of family. I spent most of those celebrations breathing through and timing contractions, but even that didn't take away from the joy of the season. I think we all had a rough spot Christmas morning, grieving the loss of our little man, but we had so many blessings to be thankful for that it tempered the grief a bit. Those sweet girls I am lucky enough to call my daughters are growing up so quickly. They are such incredible young ladies now, and I am so proud of them. I am reminded daily of my blessings... All four of them.

After keeping us all on our toes since the preterm labor scare and hospital stay in November, Carter decided he was quite comfortable staying put for a little while. I had constant contractions for weeks after going off all of the medications, but things would eventually slow down and stall out. I think I had the longest labor ever, but it was all worth it in the end.

We welcomed Carter William to the world on January 6th via c-section. We had some issues with the cord wrapping towards the end of my labor, and we all agreed it was necessary to get him out as quickly as possible. The surgery may have been a blessing after all, as he ended up weighing 8 lbs. 10 oz. at birth. He was a big boy, and he somehow manages to keep getting bigger every day. He's such an easygoing and happy baby! As long as he's fed, he's happy. And he manages to always be fed. :)

The hardest part, maybe for all of us, has been the inevitable comparisons to Holden. I love remembering Holden in all things, because one of my biggest fears is that he'll be forgotten. But I also need to remember that Carter is his own person. I need to remember to be thankful for that, for the gift of each of my children. Despite everything we've lost, we are still blessed beyond belief. God is good, all the time!

As proof of that, this is Carter. He joins big sisters Kaitlyn and Rylie, and big brother Holden. We are in love.

(The picture is courtesy of our amazingly talented friend, Ren Morrison. More to come soon. :)