Hi there! Happy Wednesday,
Hi! Thank you, as always, for taking time out of your crazy life to read! It means a lot to me : ) If you haven’t yet, please subscribe so that you will be notified via email when I post. Whenever I talk to people about this blog, one of the things I mention is that it is something that is mine. I am a mother of three, I am a wife, and I am BUSY!! So, this blog allows me a space where I don’t have to be only all about my family, but can talk about my beauty and lifestyle passions as well. Since starting this blog just over two years ago, I have also started a LeahTackles YouTube Channel where I share beauty hauls, makeup tutorials, and all sorts of other fun stuff similar to the content you read here. Last summer we took it a step further and decided as a family to document our lives on Our Daily Vlog Channel KwapisFamilyTackles. I talk about the kids from time to time on here and on my YouTube channel, but not I don’t share too much personal detail, but because we share our lives every day you would think I would be comfortable going into a lot of detail about our middle son, Connor, and his medical issues but it is so hard! I share bits and pieces, and appreciate all of the love! Who knows, as the journey continues we may as a family decide to share more : ) But, let’s get to my guest post! A friend from high school, who I sadly don’t get to see (girl, we need to make that happen!) but chat with pretty regularly on Facebook and who has been a champion of mine by rallying around me during trying seasons with Connor, reached out to me to see if I could help her share her story.
*Note: This story was not written or edited by me! And while I can relate to a TON of which she has to say, I would like to say that all statements and opinions are hers and may not be the same as mine. This is an amazing mom, wife, nurse, and all around fantastic human being. I am thrilled to help out by giving her a place to share her beautifully and honestly written story. Please share this post so that your friends and family can see it too!
DEAR MOM of the HEALTHY CHILD
by Jennifer Barrantes
Dear Mom of the healthy child,
I love you. I love your spontaneity. I love your energy and your optimism and your routines. I am not jealous of your life, but I long for your regular-ness. I long for the usual and I long for the reliable. You see my son is sick. He looks fine. He isn’t dying. He isn’t fighting cancer. We are very fortunate and blessed. He has asthma. Not the “oh I used to have an inhaler for gym class when I was little,” type of asthma. It’s more like the cough until he throws up and can’t breathe, type of asthma. The, “I’ll start the treatment while you call 911” type of asthma.
He has spent many days of his young, nearly three year life in the hospital, doctor’s offices and emergency rooms. Hooked up to IV’s, heart monitors and oxygen tubing. He’s received endless steroids, breathing treatments, blood draws, antibiotics, antivirals and x-rays. I wouldn’t trade him for anything. He is tough as nails. He is my superman. Some of the best times him and I have had are around midnight, in the middle of the week, his laughter echoing through the hospital corridors, as we sit and watch an infinite line up of Disney movies. After the movies go out, we lay in the darkness of our hospital room. Our night light is his heart monitor and our entertainment is the pediatric unit’s fish tank. We nap all day with the quiet beeping of his monitor in the background as doctors, case workers and nutritionists file in and out. For as much fun as we have being out of our routine, out of our routine is exhausting.
You see, the treatment for restricted airways is albuterol. Albuterol is like a shot of caffeine… straight, inhaled. Talk about toddler to the max. I’d say, “Toddler on steroids…” but you see he’s on those too. So, caffeinated toddler on steroids. That’s not even fair. “Mom of the healthy kid” uses caffeine to REACH the energy level of her children. Once my son gets albuterol, all the coffee in the world couldn’t get me up on his level! He’s unreachable! Upon hospitalization he gets the treatments every two to three hours! If we are lucky enough to survive an asthma exacerbation at home, he gets the treatments every four hours. Moms, just know that albuterol always trumps caffeine.
Asthma isn’t the type of diagnosis that uproots you. Your jaw doesn’t drop and you don’t go into crisis mode instantaneously. We don’t have scheduled chemo or heart surgeries or physical therapy appointments. We are lucky for that. You see, asthma is a chronic illness. Asthma cannot be cured. It doesn’t end. It slowly wears you down. Our family has survived multiple ER visits and hospitalizations. It can get better and then worse again. We never know when it’s going to strike. It could be first thing in the morning or in the middle of the night. Its holidays, weekends and vacations. We don’t travel unless I know we are within minutes of a reputable hospital. You see his airways are so small right now that it could be anything at any time.
When your child doesn’t feel well, you want to give them whatever they want. This way they may feel better, if only for a moment. After all, it’s only temporary. For us, you could point to any random date on the calendar and chances are pretty good that would have been a “not so good” kind of day. Especially in the fall and winter months. Today …. I realized this. And I grieved. As I sit here in bed typing, his little body sleeps next to me. I can hear the lite whistle of his wheezes and the crackles of his chest. His lungs sound like crap. He stirs frequently and his coughs are in abundance. Today I didn’t grieve the loss of my child, I am blessed. I grieve the loss of an idea. The idea that this asthma crap was a temporary state.
Instead of going to yoga class, wine dates, girl’s night and the gym… I will be here. I will be where I am needed and we will struggle. I will have to move mountains to catch him up on his development. He will have to learn to use the potty, to read, to multiple and maybe even to drive a car…. While feeling unwell. Who knows how long it will last. I grieve the loss of my independence, I grieve the loss of my hobbies, I grieve the loss of my friends, but mostly I grieve the loss of an idea that I will not have a perfectly healthy child.
I’ve always thought, “I’ll wean his bottle when his asthma lets up. I’ll teach him to use the potty when his asthma lets up. I’ll teach him to share, to pray, to look both ways before crossing the street, to say please and thank you when his asthma lets up.” He is pushing 3 and his asthma hasn’t let up. I don’t want our life to center around him. I don’t want his sibling’s lives to revolve around him. I don’t want to put off teaching him how to share any longer. When he isn’t feeling well and I have to teach him to share, he’ll cry so hard he may have a hard time breathing. So I grieve. Am I making the right choices? How much damage am I causing now versus how much harder will it be to correct later? So many choices.
Did you know, that while pregnant the baby leaves fetal cells behind? In. Your. Brain! Imagine that…. No wonder people have developed the phrase, “moms have eyes in that back of their heads,” or “a mother’s intuition.” I have developed this uncanny anxiety which is closely related to the breathing of my child. As he is less able to breath, my anxiety gets to a breaking point where I grab my “go bag,” which is always at the ready. We race to the ER, they strap him up to an oxygen mask, filling it with breathing treatments and starting an IV. And he stares into my eyes the whole time. We just stare. I love him so. I love him so much my heart slows with his and my breathing slows with his. We made it. One more time. We are here in this place we love and hate so much. But we are here. We are safe. We are together.
We have good days too. SO many steroid free, albuterol free, sun shining, birds singing, finger painting on the back porch, kind of days. You can sure bet that we make the best out of those. We don’t waste time on the laundry. We swim, we sing, we learn the alphabet and we eat popsicles. Its summer now and he’s been steroid free for three months. Guess what? He is finally growing!
I’m not looking for sympathy. The other day I heard the best analogy for sympathy vs empathy.
So pretend I fell in a hole. Sympathy is standing at the top and yelling down, “hey do you need a flashlight and a sandwich? It’s looking pretty terrible down there.” Empathy is stopping what you’re doing, grabbing your ladder, climbing down into the dark hole with me and experiencing the fear together. The reason people cannot empathize is because they are afraid to feel that.
Mom of the healthy children, you’re probably thinking, “what do you want me to do? I don’t have time to find my ladder. I haven’t seen it since we bought our house. It’s probably buried under the dusty stroller and the bouncer chair now filled with cobwebs.” That’s okay. It’s not about the ladder anyway. When you’re tucking your healthy kids into their own beds at night just stop, look, listen and adore. For you are blessed. They are healthy. Don’t have sympathy for me, my child has not died. Just breathe the stress of the day off your shoulders and stare at those healthy, sleeping, angel faces and say a prayer. Thank God for your children and then say a prayer for mine. His breaths don’t come as easy and his dreams don’t flow as sweet. Dare to feel that anxiety with me, if only for a moment.
Did you stop and think about it? Think about your child struggling to breathe? Thank you. For now I am not alone.
The reason I write to you is this. I grieved today. It’s the two year mark of my son’s diagnosis. We have nearly lost him three times. I grieved NOT for the loss of my child. I am blessed. I grieved the loss of many things my child will never do. I grieved the loss of the idea that I too had a perfectly healthy child. It sounds so lame on paper. It sounds so lame out loud when you may not understand.
Mom of the healthy children, I am not jealous. I am not bitter. My life is so sweet and so beautiful and so spunky. I may turn down your jungle java dates and we may avoid birthday parties like the plague. If you took a moment above to empathize with my pain, now you understand. I love your schedules and your energy, your routines and your optimism. I love your grocery day and your play dates. I don’t have those. We tend to “fly by the seat of our pants” over here. So when our paths cross, give me a big hug and ask me how I am doing. Ask me about my sweet boy. Pull up two chairs, pour me some coffee and lend me your ear. I may need to vent, I may just need adult conversation and I will definitely need some encouragement. You see, in my eyes, my boy is perfect. In my eyes, our life is perfect. In my eyes, I am blessed to have been given this super hero who’s lungs can’t always keep up… and I will do anything to keep him here with us for as long as God will’s it.
Thank you for reading! Please leave your comments for Jennifer or myself! And leave a comment to support her for having the courage to share her story and positive message! Have a wonderful weekend : )