Four Blessings

Why am I drawn here on nights like tonight? Ugh. I feel like such a raw mess sometimes. This blog that I once so faithfully updated has lost its main character, and I still don't know what to do about that.

It’s been quite some time since my last post. Maybe that’s a good thing. Maybe it means that I’m coping a little better these days. Or maybe it just means that it’s hard to keep finding words to describe the insane highs and lows of our crazy life. This post will have to include the both the highs and the lows- it seems only fitting.

Oh, Carter. What can I say to even begin to describe our little ray of sunshine? He’s not quite as sunshine-y as he used to be, but he’s still the happiest baby on the planet. His Charlie Brown head is massive, and it stays decorated with bruises most days. (It must be hard to hold it up. :) ) He’s a butterball, but he’s gotten longer and leaner since he (FINALLY) started walking. He waited almost seventeen months to take the plunge, but he’s finally walking on his own. Nothing is safe in our house these days, and even with two boxes overflowing with toys, he manages to find entertainment elsewhere in the house. Things like shoes (a favorite), the dishwasher (that he prefers to use as a recliner) and paper (that he inexplicably loves to eat).

He LOVES Mickey Mouse Clubhouse with a passion that’s almost comical. He has a little Mickey chair that he got for Christmas, and he’ll hand us the remote and go sit in his chair when he decides it’s Mickey time.  He also loves the Nutri-System commercial with Terry Bradshaw. He’ll drop anything he’s doing to go grin at Terry when he’s on the TV, saying, “ba-ba” (Bradshaw?) the whole time. If he ever gets the chance to meet him in person, I think it would be the highlight of his life.

We still have some issues with his eating habits, since he’s super picky about everything. The foods he still loves are string cheese, oatmeal, macaroni and cheese, goldfish, spaghetti and pizza. The foods he still hates are… Well, pretty much everything else. We’re working on it, but it looks like he’s destined to be a picky eater like his Daddy. That’s hard for a Mama who loves to feed people.

One of his favorite activities is opening and closing doors. Cabinets, drawers, doors- he loves them all. And I really think he has bat ears. That kid can hear a door open across the house, and he’ll make a beeline for it, trying to get there before the door shuts.

He loves the animal sound song, still, and loves most animals. However, if Trent moos at him like a cow, he’ll pucker up and cry like somebody burned him. He has no issues with pictures of cows, or cows on his beloved Mickey cartoons, but don’t moo around him! The kid is definitely quirky, but he didn’t stand a chance, with parents like us.

Speaking of quirky, he can’t stand the feeling of grass in his toes. (I think he gets that special quirk from me.) Even crawling, he keeps his feet raised in the air behind him. It’s about the cutest thing ever. :)

The girls continue to grow like beautiful little weeds. Kaitlyn is as tall as me now, and Rylie is pretty close, too. Kaitlyn has the sweetest heart, and she constantly amazes me. She’s one of those kids who has it all- she excels at sports, she’s super smart, she loves to read, she is beautiful, and she is an amazing artist. Her dream is to become a pediatric cardiothoracic surgeon, so she can help other babies like Holden. She makes a Mama proud, proud, proud.

Rylie bug is stuck at that age where she’s not quite a teenager, but she’s not a little girl, either. She gets a new freckle every day, it seems, and even though she hates them, I love each and every one of those freckles. She is still smiley Rylie, even with the attitude that comes along with this age. She loves animals with all of her heart, and she’s going to be an amazing veterinarian someday. She looks so much like me, it’s scary, and she’s going to be a full-fledged teenager before I know it. It’s a terrifying thought, but I can’t wait to see what kind of woman she’s going to become.

I don’t know how we got so lucky, but we hit the jackpot with our kids. We have been blessed beyond belief with all of them.

Our other sweet blessing is the reason I’m up in the middle of the night, pouring out my rambling heart. I woke up in a cold sweat, with tears running down my face, after another one of those dreams. I pray every night for one of the good dreams. I would love the chance to relive the moments we spent here at home, rocking and snuggling, oblivious to what would soon break us in a million little pieces. Instead, I get the dreams of his last few days. The ones I would give anything to never relive again. I can’t even describe the horror of holding a child while he runs into our Father’s arms. I can’t even try. I so want to forget, but I have solid weeks where the dreams haunt me nightly.

Sometimes it feels like the hole in my heart will never grow smaller.

Sometimes it seems like any healing I’ve discovered in the last two years can disappear in a heartbeat.

I’m always on the edge of panic, thinking the worst. I just know that something horrible is going to happen- something else beyond my control. Again. A text message from the girls’ father? Something awful must have happened. Carter’s running a fever? I keep myself awake thinking about the many things that could be wrong with him. We need to run labs, check all of his numbers. We need to fix it before it’s too late. Of course, it’s usually teething or an ear infection. And my ex-husband is usually just asking a simple question. I know I’m being ridiculous. But I can’t stop the crazy sometimes.

It’s so hard to remember that all good things aren’t temporary.

Everything was always beyond our control. We were so helpless, even as we tried our best to help. Most of the time, we were running on faith alone. You have to have faith in something when everything else is gone. Along the way, you lose faith in everything else. In the medical system. In the doctors, who aren’t gods. Even in ourselves as parents.

I can hold Carter when he falls down and bumps his head, and I can tell him that everything’s going to be okay. I can promise that the pain will go away, and his happy little life will continue as always. I never had that chance with Holden.

“You are loved”. That was the only promise I was ever able to make to him. Not, “You are safe.” Not, “It will be okay.” Not, “Mommy will make it all better.”

“You are loved.”

It’s not a bad promise, really, but it’s a lonely one. I wish with all that I am that I was able to make and keep more promises to him.

I try to continue to give him purpose. To make things better for other kids like him, even though we can’t help our Holden anymore. I know that he’s alive in all that I do. That helps, a tiny bit, to keep him close to me, even when he’s so very far away.

July is almost here, and while I’ve always loved the time of barbeques, snow cones, fireworks and sunshine, those things are now shadowed by a brave little heart we lost too soon. While most people are looking forward to the 4^th of July holiday, I’m remembering the nightmare. July is anything but a happy month for us.

I lived close to the edge for so long, and almost two years ago, I fell over it. I lived to tell the tale, but just barely.

As Christians, we’re supposed to celebrate when one of our own makes it to heaven. I’m finding it really hard- impossible, really- to celebrate Holden’s Heaven Day each year. I don’t want to celebrate. As selfish as it may be, I want him here.

I’m dreading this coming month, and I’m praying for mercy. I’m praying for my sweet little man to stay close to my heart these next few weeks. July is brutal.

Many days around this time of the year, I wake up and forget to be thankful through the pain. For another day on the planet. For three remaining children who are happy, healthy and safe. For friends and family who have been with us in our darkest hours, and continue to walk beside us in this journey. For a husband who remembers that “Daddy” is his most important title in life. I can’t promise to be better today- it’s already a rough one, and I’m pretty busy feeling sorry for myself. But tomorrow, now that’s a new day. Tomorrow, I’ll wake up and remember to be thankful. For everything.

Until then, I would really appreciate your prayers.

Happy 3rd Birthday, Holden

Oh, my sweet Holden- Today is a hard one. I can't hold you. I can't see you. I can't kiss those sweet cheeks I loved so much. But I hope you can feel my love for you- today and every day.

I’ve been dreading this day for weeks, just like last year. I can make myself physically sick with dread and anxiety, and it never seems to get easier. February 2nd is one of the most joyful and heartbreaking days of the year. I don’t know how it can be both.

I never could have imagined what our future held when you were born three years ago. I didn’t know that your heart was so sick when I held you for the first time. All I knew was that you were perfect. When I held you for the last time, seventeen months later, I still thought you were perfect.

I can’t imagine my life without you in it- even if you exist only in my memories. I can't imagine my life now without those seventeen precious months.

It's such a horrible, sickening symmetry. You were mine for that long, and now it’s been almost the same amount of time since I’ve held you in my arms. Seventeen months since we returned you to our Father's arms.

Seventeen months without you, but seventeen months closer to you, too.

Thank God for the knowledge that I’ll share your birthday with you again. Someday. May the angels hold you close until you're back in my arms where you belong.

Thank you for the extraordinary pleasure of being your Mama. Thank you for being our miracle. Thank you for the legacy you left behind. Thank you for being mine.

Happy birthday, my sweet little man. You have always been loved beyond reason. Then, now and forever.

Carter

Holden's days were documented in such detail (a fact that I'm sure would have embarrassed him greatly had he made it into his teenage years), but Carter has never had the same honor. He may not face the same journey as his brother, but it's a journey all the same. I'd hate for him to think that we didn't record anything about his first year on the planet, so here's a post all about Carter. :)

We'll start with the vitals: He is a little over twenty pounds and almost thirty inches long. His head is HUGE- above the 95th percentile. (This has earned him the nickname of Charlie Brown. :)) He has eight teeth, all in the front, and his canines and molars are on their way.

Our sweet little boy has found his voice! After months of being the quietest, sweetest baby ever, he has recently developed a mind of his own. He's still pretty sweet, but he knows what he wants now, for sure. In fact, one of his favorite words is DAT! As in, "I want DAT! Dat! Dat!" All day long, every day, he wants DAT. It would be maddening if it weren't so stinking cute. His other words include mama, dada, hot, dog and bah (bye?).

Most moms are biased, but I really think my baby is a genius. :) He will point to just about anything you ask him. He knows where my nose, ears and mouth are located, and he has already figured out the "Work smart, not hard" philosophy. Of course, that intelligence makes him a little harder to parent, since he seems to be a step ahead of us most of the time, but I hope he keeps that curiosity and quest for knowledge throughout his life.

He's taken a few faltering steps on his own, but he's still mostly content to army crawl his way through the house. He pulls up on anything that stands still, but he's scared to let go to walk. In fact, the only way he'll walk is while holding on to two adult fingers. Not one, but two. He's quite adamant about needing them both, and will plop right down on his little butt if one finger is taken away. One of these days, maybe he'll realize that he doesn't need the safety net. :)

Of course, he may not see the need to walk just yet. His army crawl is quite efficient- and pretty darn cute, too. He is crazy fast, especially if he hears a door open. One of his favorite activities is opening and closing doors.

Crawling has also given him new opportunities to stuff his face with anything he can find on the floor. He's a little Hoover! He can spot the tiniest speck of something on the floor, and it's in his mouth before I know what's happening. I've lost count of the number of times I've said, "That had better be a puff!"

Another favorite thing to do is play with balls. Any shape, size and color- He loves them all! He already has quite the pitch, and I'm hoping he continues to develop that into a professional baseball career. Mama can dream, right??

He's obsessed with feet- his own and everyone else's, too. (God must really have a sense of humor, because I can't stand the nasty things!) We can't keep shoes or socks on him, even when it's freezing cold outside. Somebody should invent some kind of sock that can't be pulled off by a baby's determined little fingers- that person would make a fortune!

Carter is really into Mickey Mouse Clubhouse these days. He'll crawl across the house as fast as he can move those little arms when he hears the Hot Dog Dance start playing. His other favorites include anything musical and (inexplicably) the Empire commercial- apparently, that jingle is irresistible to babies. (You just sang it in your head, too, didn't you?)

Like most babies, he loves to empty things, but isn't so much interested in putting them back where they belong. It's not unusual to find a case of soft drinks rolling around on the floor, or to find an entire stack of paper plates strewn across the kitchen. I could probably avoid the messes, but I like to pick my battles. If it's not a danger to him, I usually let him explore.

Keeping him occupied while cooped up inside has proven to be a challenge. Thankfully, living in Texas means that we occasionally get a break from freezing temperatures in January, and we take full advantage of the perfect 72 degree days. He would still live outside, if we'd let him.

Mealtimes have also become more challenging. Carter would eat anything I spooned into his mouth for his entire first year. Some switch flipped on his first birthday, and now his palate is a bit more discriminating. He continues to love oatmeal, puffs, cheese and yogurt, while new foods are met with a closed mouth. He takes after his Mama in the texture area, and won't pick up anything that has a weird texture. (This aversion does not, however, apply to things found on the floor. I don't understand how that works.) That means most finger foods are out, but we're still working on it. I might still be feeding him when he's ten, but that's okay. He's worth it. :)

All in all, Carter's first year has passed by in a joyful blur. He's mellow, happy and full of personality. If all babies were as easygoing as him, I'd have a million of them. (Or not- they're expensive little creatures!)

I'm soaking in all of the slobbery sugars I can, because I know that these days will be nothing but a memory before I know it.

I am so thankful for that hard-earned knowledge- I know that none of these days are guaranteed. I know now to treasure each and every day while we're still living in it.

We are so thankful for our Carter. Our stinkbug. Our rainbow after the storm.

God is good, all the time. :)

Empty Stockings

Here I am, once again, ready to pour my heart out on the pages of a blog. I'm drawn here again tonight when my heart feels too fragile to do anything else. This blog is one of those tiny connections to my Holden that I can't seem to let go.

It's been a hard few weeks. Honestly, it's been a hard few years.

Some days, it's all I can do to keep the smile plastered on my face.

We bought Carter's first shoes this week, and I had no idea how much that would break my heart. It should be one of the happiest rites of passage in a child's first year, and I just want to cry because Holden never had a pair of shoes. He went into the hospital before he ever needed them, and we never thought to buy any. Just one of my many regrets, I suppose.

Holden celebrated his first birthday on the 8th floor of CMC- Carter will be celebrating his this weekend at home. Carter is already in size 4 diapers, and Holden never made it past size 3. Carter weighs more now than Holden ever did. The comparisons are endless and so unfair. These may all seem like such small, trivial things, but part of my heart is a little bit shattered knowing that Carter is already bigger than Holden ever had the chance to grow.

I'm so very thankful, yet still reeling at the unfairness of it all.

It seems harder to hold it together this time of year, because I'm constantly torn. Carter celebrated his first Christmas, and the girls were spoiled rotten by an enormous family who all love them dearly. I am overjoyed by how much love my children have surrounding them. We are all healthy and whole and loved, and I should be thankful for every one of those blessings- yet my heart aches for the blessing taken from us too soon.

This was the second Christmas celebrated without Holden. The second one was worse than the first, I think. The first was so painful, but still so new. I kept thinking I would be okay if I could just get through it all. This year has been so much harder, because it's sinking in that this is a yearly thing. This is forever.

I've been struggling this holiday season, even as my blessings seem to multiply each day. I'm crying more often. I'm not sleeping well. I'm having bad dreams- those dreams- almost nightly, and I wake up aching so much for a little boy who exists only in my dreams and memories now. I will always and forever want more.

Most of Holden's first and only Christmas keepsakes are packed away in his box, but I faithfully hang his stocking each year. Each year it remains empty. It's such a tangible reminder of the tremendous loss that we live with each and every day. His Christmas things should be in his stocking. Not in a box.

This isn't right. This isn't natural. This isn't the way things are supposed to be.

My heart goes out to every parent who has had to put their child's life in a box.

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.

Challenges

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.

Patience

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.