Inspired in part by this post from one of my CDH mama buddies, and in part because my worry about Clara has temporarily shifted from her eating and weight gain to protecting her from sickness through the winter, I just want to say: It’s not you, it’s me.
It’s not you who are responsible for protecting Clara from catching a respiratory virus, it’s me. It’s not you who should stay away from church or holiday parties or social gatherings, it’s me. It’s not you who will be carrying the burden of guilt if Clara does get sick this winter, it’s me.
It’s not you who are responsible for protecting Clara from catching a respiratory virus, it’s me. It’s not you who should stay away from church or holiday parties or social gatherings, it’s me. It’s not you who will be carrying the burden of guilt if Clara does get sick this winter, it’s me.
It is perfectly reasonable for someone with a common cold in November or December to continue on with their lives, to go to the grocery store, to begin their Christmas shopping and to go out to eat. You don’t need to coat yourself in hand sanitizer or wipe down every surface that you touch with Clorox Wipes and Wet Ones. But I do. And this is why.
Clara is thriving. She’s happy, she’s healthy and she’s gaining weight (12.5 ounces in the past two weeks, to be exact. Bringing her to 16 pounds, 12.5 ounces. I’m delighted.) She’s got the brightest blue eyes, the biggest gummy grin and the cutest little rolls on her legs. On the outside, she is absolutely perfect. But the truth of the matter is, she still has a small lung on her left side and she still works hard to breathe every day. A respiratory infection that you or I could fight off with some Mucinex and Nyquil could be devastating for Clara. Like, back-in-the-hospital-on-a-ventilator devastating. I know some CDH families whose little ones have caught RSV or another respiratory infection and ended up with trachs. And yes, it could even be life threatening for Clara. We have worked so hard and come so far to get her to where we are right now. And yes, it’s a big big bummer to have to hurt feelings, to stay home, to miss out on special events and time with friends and family. But it’s simply not worth the risk. As a parent now, it’s my job to advocate for Clara and to make decisions that are in her best interest. As much as I love being around people (let’s be honest, it’s a lot), that is not in Clara’s best medical interest right now. Even though I want desperately to show her off and to pass her around and to share her with all the people who love her and have prayed for her, the chances of her catching something if I do that are just too good. It’s only for a season. Spring will come and we will delight in the company of others again. But right now, I have to be the bad guy. It would be selfish of me to do otherwise.
It’s kind of a tough pill to swallow. But being confined to this house is a whole lot better than being confined to Brenner Children’s Hospital. And I don’t want for that to happen again. Clara has had two rounds of the flu shot and this morning got her first of five synagis vaccines to (hopefully) help protect her from contracting RSV. When Robert or I go out into the world we come home, change clothes and scrub down before we touch our girl. Our family has all gotten flu shots and we’re doing all we can to reduce any contamination. I am still breastfeeding and praying that these teacher antibodies will protect her from all the crud that’s out there. We will escape to the mountains some the next few months for a change of scenery and we are tentatively planning on some holiday travels, but we’re reserving the right to cancel any of that if we think the exposure risk is too much for Clara. You’re not the one who needs to stay away, we are. So, I thank you for your understanding when we continually decline invitations for things. We’re not being antisocial. Trust me, I’d rather come. But even if I don’t bring Clara with me, I need to stay healthy this winter too, so we’re hibernating together. I thank you for your patience when I offer you hand sanitizer over and over again. I appreciate you not being offended if I wipe off surfaces after you touch them or if I don’t want to pass off my baby. I thank you for your willingness to do whatever you can to help us protect our baby this winter. Right now, that’s recognizing that at the end of the day, it’s not you, it’s me. You don’t need to change your lives or your habits or your routines. Just recognize that we are.
Clara is thriving. She’s happy, she’s healthy and she’s gaining weight (12.5 ounces in the past two weeks, to be exact. Bringing her to 16 pounds, 12.5 ounces. I’m delighted.) She’s got the brightest blue eyes, the biggest gummy grin and the cutest little rolls on her legs. On the outside, she is absolutely perfect. But the truth of the matter is, she still has a small lung on her left side and she still works hard to breathe every day. A respiratory infection that you or I could fight off with some Mucinex and Nyquil could be devastating for Clara. Like, back-in-the-hospital-on-a-ventilator devastating. I know some CDH families whose little ones have caught RSV or another respiratory infection and ended up with trachs. And yes, it could even be life threatening for Clara. We have worked so hard and come so far to get her to where we are right now. And yes, it’s a big big bummer to have to hurt feelings, to stay home, to miss out on special events and time with friends and family. But it’s simply not worth the risk. As a parent now, it’s my job to advocate for Clara and to make decisions that are in her best interest. As much as I love being around people (let’s be honest, it’s a lot), that is not in Clara’s best medical interest right now. Even though I want desperately to show her off and to pass her around and to share her with all the people who love her and have prayed for her, the chances of her catching something if I do that are just too good. It’s only for a season. Spring will come and we will delight in the company of others again. But right now, I have to be the bad guy. It would be selfish of me to do otherwise.
It’s kind of a tough pill to swallow. But being confined to this house is a whole lot better than being confined to Brenner Children’s Hospital. And I don’t want for that to happen again. Clara has had two rounds of the flu shot and this morning got her first of five synagis vaccines to (hopefully) help protect her from contracting RSV. When Robert or I go out into the world we come home, change clothes and scrub down before we touch our girl. Our family has all gotten flu shots and we’re doing all we can to reduce any contamination. I am still breastfeeding and praying that these teacher antibodies will protect her from all the crud that’s out there. We will escape to the mountains some the next few months for a change of scenery and we are tentatively planning on some holiday travels, but we’re reserving the right to cancel any of that if we think the exposure risk is too much for Clara. You’re not the one who needs to stay away, we are. So, I thank you for your understanding when we continually decline invitations for things. We’re not being antisocial. Trust me, I’d rather come. But even if I don’t bring Clara with me, I need to stay healthy this winter too, so we’re hibernating together. I thank you for your patience when I offer you hand sanitizer over and over again. I appreciate you not being offended if I wipe off surfaces after you touch them or if I don’t want to pass off my baby. I thank you for your willingness to do whatever you can to help us protect our baby this winter. Right now, that’s recognizing that at the end of the day, it’s not you, it’s me. You don’t need to change your lives or your habits or your routines. Just recognize that we are.
Wishing Clara the most germ free winter ever!! I will be looking forward to the pictures!
ReplyDeleteWe are 100% behind you.
ReplyDeleteI will continue to pray for Clara...and for you too because I can imagine it will be hard to stay home after a while. But you are making the right decision for your baby girl!
ReplyDeleteHere's to a well-well winter!
As we approach the Thanksgiving season, let's bow our heads and thank GOD for this healthy little girl. Parties, social times and escaping the confines of the house WILL return .... but for now, YOU are doing just what you SHOULD do and that is to love and protect the one you brought into this world. God will give you the strength ... just look at what he has helped you endure already. Think SPRING and a strong, healthy daughter to share it with!
ReplyDeleteHello! I somehow started follwing Sweet Clara Mae's story from someone posting this link on facebook. I have been keeping up with her and am so excited about her progress. She is just a sweet angel. My son has a congential heart defect, hypoplastic left heart syndrome, which means he only has the right side of his heart. He has undergone 2 open heart surgeries. He was born in February...so these 2 are very close in age. In saying all of this...I love this post and would like to share it on his website. You said it perfectly. His website is www.heartofteammurphy.com I hope you do not mind sharing this great post with a fellow mother.
ReplyDeleteCasey Clark
I completely understand and agree. You have to do what you can to protect her. I would expect no less. When I pray for her now,( I do everyday ) I always pray for a good winter with no colds or flu. May the LORD bless you and keep you during this winter and may you all be germ free !
ReplyDelete