I can’t write this post telling you what it’s like to live with sickle cell. I can, however, tell you what it’s like to watch your three-year-old son fight it, every single day.
For those of you who are new here, Joseph has sickle cell disease. (You can read more about what it is here.) Today is World Sickle Cell Awareness day, and it’s a good chance for me to help explain a little bit about this disease and how it affects my amazing, strong, energetic little guy.
Within this past year, Joseph was hospitalized four times, and one of those times included a scary ride in an ambulance. I’ve seen him need a morphine drip just to breathe, and his blood counts drop to very scary levels. We have strong, prescription pain killers ready here for when random, excruciating pain ravages his little body. Sometimes he wakes up in the middle of the night, crying and grunting in pain that he doesn’t understand and very often can’t put words to.
To see your child hurt and not be able to make it better? It’s kind of the worst thing, ever.
I struggle with worry. Every single day, in the most unexpected places, my mind will take me scary places no mother wants to go. I plead with God a lot. That he would protect Joseph. That he would let us have him here in our lives for a very, very long time. I don’t read a lot of articles because it takes me down a path that I don’t want to go.
I have anxiety about public places — about kids with runny noses, about coughs at Target, about bacteria in pools, about extreme temps. What’s little for most kids can be very severe — life-threatening, even — for Joseph. Any fever over 101 means a trip to the E.R., where he’s pricked and prodded and sometimes admitted. And the random pain he feels in his bones, that sometimes lasts days or even longer? No child should have to feel that, ever. Having a child who has a chronic illness with no current cure is hard, but it’s nothing compared to what our kiddos face.
With every trip we plan, I worry that something will happen. With every plane ride we’ve taken, I worry if he’ll have enough oxygen. With every park trip we take, I worry if he’s hydrated enough, if he’s getting too hot.
I know I’ve painted a tough picture, but it is honest, and it is real.
But while that is the reality we wade in every single day, I’m here to tell you that we are okay. That Joseph is okay. That he is strong and that he is a miracle. It is nothing short of a miracle that he is with us today. That he survived the first year of his life with little to no medical care? A miracle. That he was eventually placed in a safe and loving orphanage? A miracle. That he is in our family? A miracle.
Joseph looks super healthy — and thankfully, most of the time he is. He is athletic with bounds of energy. He is one of the happiest dudes I’ve ever met — and one of the sweetest. It breaks my heart that sickle cell is something that he has to fight. That being involved in most sports isn’t a reality for him.
I’m so thankful for the friends and family who have understood what it means when we say we can not be around you or your children, even if it’s just a cold. I’m thankful for the friends and family who have done their own Google searches and educated themselves on sickle cell. I’m thankful for the friends and family who have stood by us when Joseph has stayed in the hospital, who have made trips and who have stood in the gap when energy and hope has left our own hearts.
I’m thankful for the online communities I’m connected in, where I’ve learned so many things that can help Joseph. I’m thankful for my group of adoptive mamas of kids with sickle cell, who have loved us well when I’ve felt very confused and alone. I got to meet two of these sweet mamas at the Created for Care conference (look for a post on that soon), and it was seriously a gift to hug these ladies and hear them speak truth into my heart.
Courtney, Emmy’s mama, is the most educated sickle cell advocate ever. Her precious Emmy, who is four, has been hospitalized too many times to count, and they almost lost her last year. Courtney loves fiercely and is a source of information and encouragement, and I’m so thankful for her. One of the other mamas, Shannan, has an elementary-school aged son with sickle cell. She is strong and brave and reminded me that Joseph is okay. He is strong. He is healthy. And that anxiety and worry and fear are just distractions from the amazing blessing we have in Joseph. That I can rest in the fact that God knows Joseph — and God loves Joseph, even more than I do. (And, I love that kid a whole awful lot.)
If you don’t have a child with a chronic illness, I know it is hard to understand what it’s like, and that’s okay. You don’t have to understand. I don’t want you to have to understand. So, please, don’t pretend that because once your kid had the flu or because your kid had a weird rash, you understand. Because you don’t. Parents of chronically ill kids just want your hand on their shoulders and an ear to listen.
Some people with sickle cell have been cured, thanks to bone marrow or stem cell transplants. Right now, Joseph would have a hard time getting that, since he has no biological family. We’re praying that more strides will be made in research — new studies and findings are coming out every day, and that makes us hopeful. Since February, Joseph hasn’t had a hospital admission, and has avoided the flu even when Asher was sick. We’ve kept pain at bay at home thanks to modern medicine. He loves playing outside in sandbox, riding his bike, and playing in the sprinkler. Asher has a pretty rad big bro to look up to.
So yeah, sickle cell is scary. Some people ask me if we knew Joseph had sickle cell before we adopted him, almost alluding that we wouldn’t have adopted him if we would have known, or somehow suggesting that we lost out. That couldn’t be further from the truth. I always reply that we didn’t know, but we knew we were adopting Joseph, and knew we would parent him and love him with full hearts, no matter what. When you have a baby, there’s no way of knowing everything, and it’s the same with adoption. We didn’t adopt to find a “perfect” baby to fill missing void. We adopted because God led us to grow our family in a beautiful way, and I’m beyond thankful and beyond blessed to get to be Joseph’s mom. I’m so thankful that I get to be the one to hold my boy when he’s hurting, I’m the one who gets to apply the heat pack and administer medicine. It is a blessing to get to take care of him. I’m just so thankful to be his mama.
I wish I had a magic wand that could take away his hurts, but until that happens, we’ll be holding hands, facing it together.
(We have sweet friends here locally who have a little girl who was adopted and has sickle cell. We were going to have a play date with her today, but she spiked a fever and is currently getting admitted. Can you please include this little one and her family in her prayers?)