It is still surreal on every level that I just typed that out. That having open heart surgery (OHS) is part of our story. And really since the beginning of our road with our Little Peanut, her heart has probably been the biggest thing I have prayed about, and the deciding factor in so many conversations.
Way back at 12 weeks pregnant (nearly 11 months ago now), one of the reasons her doc thought she would not be viable was because of the condition of her heart. In utero. That blows my mind still to this day, thinking of how small it must have been back then. And all throughout pregnancy, we were always watching her heart, monitoring it, praying it would be able to keep up with all the changes her body was doing as it was growing until birth, praying we would get to a place where we could repair her heart and do the open heart surgery. (photo credit: Blush Little Baby)
Then our sweet Leah arrived and her heart once again was the dominating topic. It hindered her ability to put on weight, to stay awake, to grow, to breathe well, to be able to eat. Is that not amazing how much impact this organ has on all these things we just take for granted?!
These past 5 months. I thought I knew what it was like to parent a baby….to worry….to feed a child every few hours. To get little sleep. Oh. My. Stars. I had no idea. It was almost as if God said I know you think you got this parenting gig down, seeing as how she is number 4 in six years, but oh my sweet child, I want to show you how little you know, and how much you still need Me. Every single thing. Every.single.thing. has been reframed and turned upside-down with Leah. That middle of the night feeding that I thought was hard with my big three. And I couldn’t have imagined it being harder. Oh God. How you must laugh sometimes at my naivete and inability to remember to take nothing for granted. Advocating and coming home from the NICU with a NG-tube might be the hardest I have ever had to fight for anything for a kid. And then we won. But oh the reality. You think it would be easy to put food in a bag and connect a tube. I mean it even sounds easy. But the reality. Is stressful. Anxiety-ridden. Hard on my mama heart. And has taught me so much about empathy, about how incredible it is that our body parts work right even sometimes, and has opened the door for so many cool conversations with my kiddos (who love to serve by helping fill her tube) about the way God made each and every person with special things about them.
A squirrel. But yet it still does have to do with her heart. It is all part of this game. Pushing on. Of Just waiting. Promises. Hopeful expectations. The food is a part of that. The whisper that possibly after surgery she would have energy to eat orally. That after open heart surgery she won’t fall asleep mid-meal. That after her heart is repaired we won’t have to count every calorie. Monitor every feed. Weigh every ounce. It’s such a picture to me of what these last 5 months have been of just waiting. The push and pull of despair and hope. Of one step forward, two steps back.
And then today. A cough. A simple cough. But one that could kill her. Because everything with her is a bigger thing. So into the doctor we go, who confirms she hears something and sends us out for chest x-rays. Just one more thing in the game with this sweet girl where I have to lay down my wants and needs. I want to not have to have her exposed to radiation on top of everything else. Her low muscle tone makes it impossible for her to take a great picture, so it requires two adults to hold her down to even attempt it. 6 tries for 2 pictures. And my mama heart. Watching her be held down, watching her being zapped by radiation. And we wait some more. Because this might alter all our plans for surgery. Who knows. That decision is still to come. So one more sleepless night while I wait on the decision how and/or if it will impact her open heart surgery come Friday. That is how today went. Which is what is prompting this ramblethon right now. 🙂
Where am I? How am I doing? I am holding on. I have my ok days, my good days, and my bad days just like everyone else. Everyone has their hard. I have learned a few reminders that I thought I knew, but I didn’t really learn them authentically until Leah. In no official order.
1. It is okay to cry. For some reason people keep reminding me this. But it’s a great reminder. Holding it in makes me miserable. But it’s as if people want to see you happy. I mean you have a baby, you should be happy, right? What is missed is the fear. The worry. The waiting. The decisions. The doctor appointments. It all takes a toll. Crying is a sweet release and really does help. I wish more people felt comfortable to enter into a space when another person is in pain, so please know if you see me losing it somewhere you are welcome to come and sit and just be with me. You don’t have to say anything. Just your presence is helpful.
2. The loss is so real. I know, I know. I have a baby. But what you don’t see is all the things I still have to work through. Those first moments not holding my baby. A pregnancy that was wrecked with despair and darkness. Weeks spent in the NICU, juggling kids in two different places. The inability to feed my child the way I had imagined. Moving from doctor appointment to doctor appointment, and the toll that takes on typical kiddos who were not accustomed to that. Having to say no to play dates, outings, simple things that could mean a space where my kiddo gets sick and instead having to stay at home is a loss for both me and my kiddos. Seeing friends’ babies, whether on social media or in real life, who are the same age as your kiddo, and all the proud parenting moments about what their kiddo can do already. The big trigger for me still is, She is having a healthy baby. Someday I will pursue counseling, but just know the loss is real and sometimes just being able to say that out loud and have it validated is huge.
3. Waiting is agony. Oh waiting. I thought I knew you well, too. I remember waiting when I first moved back to Memphis and was being placed in Young Life. Would a position and salary exist for me? Which high school was going to be mine, if any? Would the sweet Brad Baker hear my heart to stay on in Urban ministry? (spoiler alert: he did, of course). What a long summer that felt like back then. And yet, in hindsight, I really moved carefree that summer. Even as summer became fall and no decision was reached the waiting was exciting. I walked with a lilt in my steps watching things come together, watching doors open, meeting donors, meeting team members and volunteers, mingling with staff. I thought that was what waiting looked like. And then sweet Leah. NINE MONTHS feels forever when you add in hormones, doctor appointments, a death sentence, the uncomfortableness of pregnancy and an unstable heart and then told I just have to wait and pray that she makes it earthside. The sweet relief on my face that Blush Little Baby captured in the picture above where I am holding her finally still says it all. But that just meant we moved from one phase of waiting to the next. Now to keep her alive and maintain until she could get big enough to do open heart surgery. There is no way to prep the mama heart for that. It is a waiting and a burden unlike anything.
4. The cold hard truth of OHS. Oh our kids are warriors. There is no doubt in my mind. I cannot believe her heart can even beat in this condition, much less that she is full of color and personality and fun. But the statistics that are out there with the what ifs. Man they are enough to drive me literally insane. I teeter just on the brink of it most days. I cannot wait to be on the other side of this surgery because the nightmares of all the ways this can go wrong have nearly swallowed me whole. I’m thankful to know so many mamas on the other side of this surgery with their amazing stories, but over here until then it is scary. Fear that is incomparable to something else. It is gripping and all consuming. The fact that I get out of bed and maintain somewhat of a normal life AT ALL has been a God thing. There is literally nothing within myself that has allowed me to continue to walk it out.
5. Every milestone is such a big deal. So much I took for granted with my first three that I don’t now. The ability to roll over…..BIG. She can hold her head up….HUGE. Seeing her very first smile….PRICELESS. In a way that cannot even be explained. Every milestone feels like such a celebration and testimony of who she is and just how far she has already come.
6. Our kids are warriors. The heart warrior phrase really is so true. I want to burst with pride and excitement just watching how hard she has worked and how much she has already overcome. I look around at other mamas and their kiddos waiting for open heart surgery, and I am blown away. What our kids can do and have accomplished in their short lives is nothing short of miraculous.
7. The sovereignty of God. I thought I understood this. I’m sure for the rest of my life I will be trying to wrap my brain around it. But it is incredible to see this big theological word lived out. I know it means that God is in control. It means waiting has a purpose. I know it means because of suffering I can see Christ so much bigger. I know that it means He works all things together for good. But I didn’t really know that. I had lots of valleys in my life, and I have overcome some incredible baggage that should have it’s own book some day. But I didn’t really know what the sovereignty of God meant. I feel like because of Leah, and because of the waiting, and the stress, there is something a little bit sweeter about His goodness, His timing, His promises, His peace, His grace that was not really as real as it today. I’m very thankful for that.
If you are wanting to explore the top of the sovereignty of God, I highly recommend John Piper’s book: Suffering and the Sovereignty of God.
8. It takes a village. You know if you read all this, I want you to walk away with knowing that despite this road that we are both on, I would not change anything. I know for sure I would not have appreciated the gift. THE GIFT. that Leah is to me and to so many. The sheer ease some days it is to take care of her. Her down syndrome allows for her to seldom cry, seldom fuss, and to almost always be perfectly content. That is amazing. Her heart defect? It makes her want to snuggle and sleep 20 hours a day. There is nothing sweeter than snuggling this baby all.the.time. I swear kids like mine invented the phrase sleep like a baby. And the village. Oh my sweet friends. Friends who have walked this journey with me from day one. Who cried with me when the news was catastrophic and dark. Who prayed for me and Leah for months and months. For sweet friends who shared our gender reveal in the most comical way. Incredible friends who came to hard pregnancy appointments. Our homeschool community who threw me the most precious baby shower ever and prayed for us and provided meals for us and have been the literal hands and feet of Jesus. My sweet mama tribe foursome who have been the source of late night giggles when I needed it the most. The village that is moms with kids who have Down Syndrome. Oh my DSDN groups. I could not have imagined a better community, more intimacy, more connections if I had tried. They are the rock, glue, and everything else I didn’t even know I was going to need. And the strangers who have become friends and confidants. This journey has been worth it for sure. To everyone who has prayed for us and standed in the gap….I adore you and my thank yous are unending.
That is sort of all over the place.
But it is from my heart. To you who have wondered what it is like to have a kid waiting on open heart surgery. Hopefully this was a little glimpse. <3
This Post Has 3 Comments
My beautiful friend, I know how real the loss is. I also know the pure joy. Avery is almost 25 and didn’t have a heart condition at birth, that we knew about. The issues with his heart still take me to the deepest parts of despair instantly. I love that boy more than works can describe. I’m paying for her and you and your whole family. When her heart is repaired she will grow and thrive. She is beautiful. Hugs
The picture of Leah with her head up and her ng tube out and her fiery hair and angelic face have to be your touchstone. The rest will fall away and you will have this special, remarkable little angel. I think I told you about my nephew Evan Nodvin ( you can google him, he has a lot of press clips) who has downs and, at close to 40, leads a full and successful life with a job, a roommate, a girlfriend, special olympics, and a place on the governor’s panel for disability rights. There are great things out there for little Leah,just hold on.
This is so sweet and poignant. I love you and pray for you, Leah, and your family daily. I pray everything will come together as well as it possibly can. Hugs Sweet Friend.