“See this sweet warrior in the photo? As with so many innocent children, he has been to hell and back. This photo is from 17 months ago and he is alive and well now, with a strong, beating heart. He does not look anything like he does in this photo, thank God. He is so adorable. He is meeting milestones and growing so strong. But over and over, I have watched my son suffer through surgeries, tests and procedures and have felt helpless as he fought through the pain and my heart shattered. He’s been through more in his short life than any living thing should ever have to endure. And because of this, as his mother, I want to show him the world. He’s fought to be alive and I want him to LIVE. Not just within the confines of our home (although I’ve tried to make our house as exciting and stimulating as possible) but I want him to get out and feel normal from time to time. With a medically complex child, it is a fine balance between trying to help them live as normally as possible while also trying to protect them and in reality, also trying to keep them alive.
Jude does not have a properly functioning immune system. On top of that, he does not have a normal heart. We do all we can to build his immunity up. Antibody shots, isolation during cold and flu season, masks when the rest of the house is sick, no shoes in the house, nonstop hand washing and clothes changing, essential oils, vitamins, and a million sanitizing wipes a week. We do our best to protect him; it is not anyone else’s job but our own (although we are so appreciative of how considerate our family and friends are). That being said, we are in the middle of an absolutely brutal cold at the moment. We had one cold and were better for a few days and then another one hit us; this one has been relentless. And I blame myself.
You see, before the cold and flu season really kicks up, I wanted to get Jude out of the house and socialize him, as I believe that is almost as important as keeping him free of illness. After all, he is alive and has a life to live, and I want it to be as rich as I can make it. We thought taking him to the children’s museum would be so fun for him. He could explore, be around other children, expand his mind, laugh, play, grow. We were those crazy parents washing his hands every 5 minutes, wiping down everything he touched, not letting him get too close to other children. That’s when she walked up. A darling little girl who wanted to play with Jude. My heart melted as he looked up and smiled at her. In that moment, she let out the wettest, most mucous-y sounding cough right in his face. I was horrified. Josh and I made eye contact and tried to discreetly pick him up and remove him from this sick child’s presence without offending the parents. Two days later, he woke up with that same horrible cough.
Sure, is it likely he did not catch it from this child? Yes; in fact, the chances are he touched some surface that had germs on it or something. But for the past 7 nights, I’ve been holding my baby as he screams, chokes, coughs and vomits up mucous all night long, and all I can think about is that girl and wonder why her parents chose to take her out when she was clearly ill. I regret sacrificing Jude’s health for a few hours of fun, but doesn’t he deserve fun? Doesn’t every child deserve fun?
In my mind, because they made that choice to take her and not sit and wait it out a few more days, my son is suffering more than he should. As many of you know, we have fought like hell to have him get a healthy relationship with eating. He has not eaten a proper meal or drank a full bottle in over a week because he is miserable. He is losing the weight we fought so hard to put on him. What he does eat ends up all over us as we hold him up after a coughing fit; it causes him to vomit so hard that for the next hour, bile comes up as he screams through the burning.
We advocate and fight for him every single day and have seen huge leaps in his development. We had him in speech to help his speech delays and he had really started to blossom. I was SO excited. Because of this damn cold, he’s missed the past 3 weeks. His therapy center was surprised and grateful when we cancelled; they said that most people just bring their children sick and expose the office. What???! Why do parents make these choices??? Of course, I thought about taking him as I don’t want him to fall behind, but I knew it was not considerate of all the other children.
He needed his hearing re-checked and we had to cancel that. He was supposed to be in a photoshoot for a calendar of heart babies and we couldn’t go, as we couldn’t risk exposing the other children. My heart broke when I cancelled that; I was so excited to see him in the calendar along with all his buddies.
We are supposed to start a mommy and baby dance class tomorrow that I’ve been excited about for months; I am going to lose out on my money and we are going to miss out because he still isn’t well. In caring for him, I also caught the cold. Let me tell you, being 20 weeks pregnant and having the cold from hell is pure torture. When I finally get Jude comfortable and sleeping, I am wide awake with the intense sinus headache, the cough, the nonstop sneezing. I had finally started to feel energy in this pregnancy and was doing some self-care by swimming; I have been sidelined and set back again. We haven’t slept in weeks. Jude will only rest on my chest and we are like two barking seals every night, keeping each other awake. I can’t tell you how many 3 am steamy showers we have taken to relax our lungs. I have essential oils on us, humidifiers blasting, salt sprays up the nostrils, nose fridas sucking out the mucous, sleeping at angles, homeopathic cough medicine…you name it…if it’s safe for a heart baby, we have tried it. Nevertheless, this cold is relentless. And I just keep thinking how a choice to take him out and a choice to bring a sick child out have caused all of this.
I get that you can’t stay inside forever with a sick child. Believe me, after keeping my child isolated through the winter, I understand cabin fever better than most and sometimes, you just need to break free. And man have I been tempted just to take Jude out even though he isn’t well because this cold is never-ending; however, I feel that would be a very selfish decision. Yes, some circumstances are unavoidable. Working parents may have to still take their child to daycare, grocery shopping must be done, doctor appointments must be attended. But the optional activities? The ones that CAN be avoided? The pool, the museum, the park, the therapies, the aquarium, the restaurant…I do feel those can be sacrificed for a few more days. It’s not like you will never be able to go again. Just wait a few more days and enjoy these things with a healthy child. Germs are unavoidable, and kids get sick. Sicknesses are normal; I realize that. And usually, colds are no big deal. But no cold is “just a cold” for a medical complex child. It stresses their heart, their respiratory system…we are always just one bad moment away from a long hospitalization. Jude will get sick again…that’s reality. This isn’t our first cold and this isn’t our last. Germs are in the air… on the surfaces of everything. They are on people who don’t know they are sick or think they are well. But just maybe, if you wait it out and let your child recover before taking them out, maybe you will protect a medically complex child that has been through hell and back and just wants to see the world. Just wait…wait until the cold is over. I beg of you. I never would have known this had I not been in my position. I am not blaming anyone (unless it’s 3 AM), but I’m trying to spread awareness for my son and all of my son’s dear friends who are fighting to live just as hard as he is. Wait a few more days. The museum isn’t going anywhere. I promise you, all of us with special fighters will be on our hands and knees thanking you for being so considerate. There is no way we can protect our children from everything, but the littlest decisions can make all the difference in the world. It truly could save a life.”
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