I joined a club.
Not voluntarily, no. There was a kicking and screaming. I remember some wailing and some sobbing. Some punching and gritted teeth.
It's an exclusive club, though not as exclusive as some would like to believe.
It's a club of women. Beautiful, faithful, selfless, and strong women. Women for whom getting out of bed some days is a testimony to their faith and strength. They are truly the most shining souls I've ever met, but they're so humble they don't even know it. I'd go so far as to say they mostly match the mold Proverbs 31 carves out. I am both honored and blessed to be considered their friend, though truthfully the reason I met some of them is far from a blessing. I'd rather have never had a reason to know them.
You see, this club is one no one in their right mind actually wants to join. The members don't want anyone else to join either, we pray and work passionately so that no one will ever have to again. Nevertheless, we are quick to offer a warm hug, a simple text, or box of resources when someone does find themselves in our heavy shoes.
There isn't a word for what we are, and that fact tells a story about the real tragedy that we live every day. We are mothers living after the death of our child. Living isn't really the right word though. Our lives have been shattered by an unnatural ordering of death, and we're continually putting pieces together again.
Some of us cry daily because there's no way to keep it from coming. Some of us don't cry at all because we're terrified we'll never be put together again if we allow ourselves to break.
Some of us shy from the inevitably difficult questions about children and and ages and such. No need to show a complete stranger even a tiny fraction of the pain we live with every day, ya know. Some of us bare our souls each time we're asked about our kids; it's a wonderful way to share the Gospel...but truth be told, I would give my last breath to never have had a reason to answer those difficult questions.
Some of us are doers and planners and fundraisers for the causes that are now branded on our hearts. Some of us do our best just to do and plan and care for ourselves on a daily basis.
Bereavement looks different on each mother it touches, but we also have similarities. We are all living for something this world can no longer give us. Our eyes have been opened to what a truly broken, hateful world we live in, and we are haunted by it. We want Jesus to come fix it in a way that couldn't have been fathomed before our deepest pain snatched our babies away. Homesickness for Heaven has hijacked our thoughts. Our own deaths no longer scare us, but the thought of Death coming for of any more of our children brings crippling anxiety.
When I look at pictures of Luke, I have an indescribable urge to reach into the picture and hold him. There are no words to describe how bad I want to put my hands on him and pick him up, I've tried. To feel that soft, strawberry fuzz on his head. To smell that sweet baby smell that I'm so terrified that I'll forget. I read another mother write about the pain of knowing her baby was just a few feet below her in a grave, and all she could think about was how much she wanted to reach out and touch her fingers.
I don't know why I'm writing this really. I just felt like you should know the beauty that lies in all of the women I have come to love in the past seven months. And as fervently as we pray for them to be spared that pain, more mothers are added to this "club" every. single. day.
When Luke went to heaven, grieving mothers of all kinds reached out to me. They jumped through hoops to get my number just so they could send a text to let me know they're there. They took a break from their grief to help me carry some of mine. They traveled miles upon miles to sit with me, fully aware that I may not even speak during the visit. They showed up because they knew that that's what is needed most.
Anyway, I just thought you ought to know about them. About us. About this club.
They don't seem like much, but those two little words hold a whole lot of weight for me.
I know you don't mean it when you say it, but all I can think about is that little blue casket that will hold my baby's earthly form...little forever.
"Can't I keep you little?"
"Oh, how I wish I could stop time."
The list goes on. And on. And. On.
I, too, have noticed how quickly time passes when you watch your child grow, but I wouldn't stop it. Not for a moment. Not for all the gold in Heaven's streets.
I've watched time stand still. It's nothing anyone wants to witness. Ever. For us, the world kept going around us but we just stood there. There was CPR, his tiny feet bouncing under the weight of chest compressions, nurses running, doctors calling orders. It seemed like it took an eternity waiting for the telltale beep of the heart monitor, but we got nothing.
No more Luke. For him...for us, time did stop. Trust me, you have no idea what you're asking for.
Next time you're overwhelmed with how fast your baby is growing, do me a favor.
Hit your knees and praise God for allowing you to witness it for another day.
Take that baby who is growing like a weed outside, so he can pick you a chubby fist full of weeds. Put those "flowers" in a vase and declare how you have never seen a more beautiful arrangement. Watch it make him smile all over.
Give him a slice of pound cake at Mimi's house and take the time to notice how he'll now only eat the crusty top, just like his picky daddy. When you get home, write it in your journal of things you're scared you'll forget.
Marvel at that baby's need to watch the movie for the twelve thousandth time only to beg you to turn it off right before the bad part. Smile because you know he got that from you; heaven knows you've watched Steel Magnolias at least a thousand times, but you've only seen the part where Shelby collapses a grand total of three times.
Savor the giggles and notice how his grin wrinkles up his cute little nose. Smile at the way his eyes close to slits every time because he smiles with his entire face. Take a picture of it, but just for yourself...don't share it all on social media.
Smell his little head just one more time, and notice how his baby scent is slowly fading into the scent of dirt and sweat. Treasure it in your heart.
When you drop him off at kindergarten, sit in your car and cry because your baby is sitting in a classroom then thank God for allowing you to experience it. When he brings a bad note home for pushing his teacher to see exactly what his limits are with her, discipline him to the fullest extent but then laugh with his daddy about his spunk when he's not looking.
Cheer for that first hit he gets without the tee. Treasure the sweaty, dirty, and oh-so-happy red faced grin he gives you when he sees how proud you are of him. Don't miss it because you're looking at someone else's life on social media.
These moments are beautiful, precious gifts. Gifts we don't all get with all of our children. Gifts that some of us were anticipating with joyful hearts, but then we had them snatched away. Enjoy them. Every milestone your child reaches should be met with bittersweet celebration, but don't dread it. Mourn the end of every day because your baby will be a bit older tomorrow, but then pour your thankful heart out to God asking him to give you so much more to experience with those babies.
And do not ever wish for it to stop.
You have no idea what you're asking for.
But why the care packages? Why not raise money for research?
That's the well intended question that was asked of me in a Facebook group last week. Her child had also died of a Urea Cycle Disorder, and her passion is raising funds for UCD research.
I get that. I understand completely, but she's missing something.
What do we do while we wait in all of this reasearch to come to fruition with a new medication or a cure? What do we do in the meantime when there are real families who are on their knees on the cold tile floor of a hospital while their 1/70,000 ASL baby fights for its life? What do we do when the 36 weeks pregnant mama travels 6 hours away to a better prepared hospital to give her 1/2500 CDH baby a fighting chance when he's born. How about when a family is getting ready to watch a soccer game but instead makes an emergency trip to a hospital only to find out hours later that their three month old has the monster that is cancer growing in her brain?
I'm so thankful for all the people who have picked up a cause and lifted it up high for all to see. It's amazing to watch a family choose to take their hurt and use it to help others. I'm especially thankful for the fundraisers for UCD research, since my own sweet baby was affected by that mostly unknown disorder.
But it's not just UCDs. It's not just cancer. It's not just CDH. It's not just prematurity. It's not just birth defects.
It's real people. It's real families. It's because my heart is not the only heart that is hurting in this world. It's for as many of the hearts in the midst of the unknown as Luke's Legacy can reach.
And, most of all, it's Jesus. I just want to make sure that, even if the unimaginable happens, these families know that Jesus can carry them as they dance that sacred dance.
So, it may not make much sense to some, but we have our reasons.
We care for the hearts that are in the midst of pain, and we want them to know that Jesus cares, too.
the day your heart stopped and mine kept beating
You were born on a Tuesday.
I'd had 39 weeks and 2 days to hold you safe, perfect, and protected in my womb. You'd been all mine, but I couldn't wait to share the sweet soul that I already knew you had with your daddy and brother.
Your birth was as perfect as any mother could ask for, and you came out as healthy as any doctor could have guessed. I'd prayed for your safe delivery, knowing too many mothers who had seen their baby die long before what we'd believed was their time. And my prayers were graciously answered. I held you, you knew me, and I rejoiced in God's perfect grace. I could see every ounce of His grace and love in your tiny little face. I had no idea at the time but I was catching a glimpse of heaven itself.
We'd had three days filled with your perfect love, snuggles, and sweet angel kisses. Your brother surprised us with how naturally he slipped into his new role as your big brother. He quietly crawled in daddy's lap at night because he knew you needed me more. Maybe he already knew your time was short, and that maybe I needed those snuggles with you while I could get them.
I knew you were sick on that fourth day that you were with us.
The day you died.
You were just four days old.
I had no idea how sick, but I knew you were sick. Everything happened so fast. Everyone in our path that day was placed there by God, I know it now. The second doctor's son shares your name. And when I found that out I saw God wink at me. He worked on you like you were his own baby, and I will forever be grateful for the care he showed us and you. He cried for us, for you, and in hindsight I know that he knew you were much sicker than we understood. Then the flight crew came. They let me love on you as much as I possibly could, but eventually had to take you away. You flew in a helicopter to better doctors, doctors that I just knew could heal you. I prayed for your safe arrival nearly every minute of the four hour drive to the bigger, better hospital.
God graciously answered those prayers as well. We were still one and half hours away when you arrived at the hospital, but the doctors kept us constantly informed. When we built our house, I wrote bible verses on every header. I didn't know yet what child would live in your bedroom, and I remember having a difficult time choosing the verses for that room. I distinctly remember choosing Psalm 91:4 because its beautiful words had always brought me peace. So I prayed over that verse. No matter what would happen, I knew God would cover us with his feathers. I still know that.
When we arrived, you were alive and I had yet another answered prayer. We prayed silent prayers for your healing constantly over the next three hours, and the doctors worked tirelessly to save you. They never tried to give us false hope. They told us it was critical. They told us you were a very, very sick baby. They told us we couldn't yet talk about long term care for you until we made through the next few hours. They told us the truth.
But we knew God could heal you, and we kept our faith.
And God did heal you. Just not in the way our mortal hearts had hoped.
The doctors tried so hard to save you, but your little heart stopped beating.
I'll never forget the moment they stopped working on you. We had been standing in the room watching every doctor, nurse, and support personnel in the PICU work to keep you alive. In the moments leading up to your death, we were in full panic mode. But the moment they gave up I was at peace. Now I can't help but think of my favorite movie. In Steel Magnolias, M'Lynn says "I just sat there. I just held Shelby's hand. There was no noise, no tremble, just peace. Oh God. I realize as a woman how lucky I am. I was there when that wonderful creature drifted into my life and I was there when she drifted out. It was the most precious moment of my life." Before this all happened my naive mind had always wondered how a moment like that could be deemed as "precious," I always thought it would be better described as "heart-wrenching" or something more painful. I remember when a distant cousin of mine lost her little girl to cancer, she mentioned this quote from Steel Magnolias. I remember it because it was so hard to wrap my mind around at the time. But now I understand because it was so very precious. I didn't cry. I didn't scream. I was acutely aware of my own heart beating, and when your daddy held me to his chest I heard his heart beat louder than any sound in the room. Maybe because I knew I'd never hear the sound of your little heart beating again.
I longed to hold your little body in my arms one more time. I knew you weren't really there, but I needed to hold the shell of the sweet soul that God had blessed us with for four short days. And the doctors gave me all the time I needed. I held your tiny body for over an hour in the PICU, and I was able hold you all the way back to the funeral home in our hometown. I kissed your little head, even though I knew you weren't really there. I held your little hand, even though I knew you were in the loving arms of Jesus. I stroked your little feet, even though I knew you were walking the streets of gold.
We arrived at the funeral home very early Christmas morning. A man named Donny lovingly took you from my arms with tears in his eyes. He was placed there by God just for us. He promised to take very good care of your sweet body, and I knew he meant every word he spoke.
The next two days were unbearable as my body reminded me constantly that I'd birthed a baby while my empty arms reminded me that you'd left us too soon for our earthly hearts to understand. We made the arrangements. We received family, friends, and food. I cried in our bed. I smelled the clothes you had worn. I looked at picture after picture of your sweet face. And I questioned God, not in anger or in fear, just because I needed answers for what good would come from such pain. I needed to feel God's presence because I had never in my life felt so separated from Him.
And then you were buried on a Tuesday.
Your uncle officiated the service. The same man who married your daddy and I, baptized me, and helped us dedicate your sweet big brother to the Lord. It made perfect sense. It was evident that you'd touched a lot of hearts in the four short days you lived on earth, you could see it clearly by the number of people who helped us lay you to rest.
As we received family and friends after your service, a sweet student and her mother came by to show their love and give me a gift. She'd bought it a couple of weeks before in anticipation of your birth, even though she knew it wasn't really a baby gift. It was a simple gold bar necklace with a single feather and the packaging had the verse Psalm 91:4 on it. The very same verse I'd prayed over when you were so very sick. And God winked at me again. The tears stopped for a moment because I felt the Holy Spirit as evident and as real as the breath in my lungs or the sun in the sky. God put that sweet student in my life four years ago in preparation for that one moment in the cemetery. He spoke through her, and I will be forever grateful for her obedience to Him the day she bought that necklace. He used her to remind me that we are covered with his feathers, and that no matter how difficult this part of our story may be that He is forever faithful.
When we came home, your daddy and I sat together on the front porch swing and watched the sunset. I told him that I wanted to plant a magnolia tree in your memory. I knew it didn't make much sense to plant a magnolia since they flower in the summer but you were born and died in December. Magnolias have just always made me happy, as you did. When I was pregnant with you and waiting to know your gender, I even toyed with the idea of naming you Magnolia had you been a girl. Magnolias are evergreen with very long lifespans, and I felt like that was an appropriate nod to the everlasting life that I know you slipped into so peacefully.
Three days later we came home to a magnolia tree on our porch, mailed four days earlier, ready to be planted in your memory. Your third cousin, a mommy to her very own angel baby whom I'm sure you've already met in heaven, had sent it to me knowing the pain of losing a child. She had no idea what I'd wanted to do for you, and somehow she'd chosen a Magnolia tree to send to me. And God winked at me again. It took my breath away to feel His presence so sharply. Tears came, but these tears weren't of sadness. I cried in amazement of His Grace and Faithfulness.
Four days is all we had with you in our arms, but you will forever be in our hearts. We learned so much about ourselves, our faith, and your big brother through those four short days. I saw prayer after prayer answered. And maybe the most precious answered prayer is that your daddy asked Jesus into his heart and now wants to be baptized. You had a purpose, sweet Luke, you just fulfilled it so quickly. Your physical presence brushed our life as delicately as a feather, but you made an impression on us that will last for the rest of our lives.
I'm so grateful that God trusted me to be your mommy on this earth.
And that in itself brings me peace.
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.