It’s that time of year again. The leaves are trying to change (or rather fall off here in south Louisiana), pumpkin spice flavored everything is stocking the store shelves, moms everywhere are pulling out their kids’ winter clothes from last year (praying they fit for just a few more wears), and everyone around is sniffling, coughing and sneezing. Before I was inducted into the “special needs moms club” I LOVED this time of year. However, I now dread it. Okay, I don’t dread it, I HATE it.
You see, my kiddo is part of the approximate 20% of children in the USA who are considered to have complex medical needs. My Connor was born with multiple “specialties” that cause him to be extremely medically fragile. He is the reason I hate this beautiful weather and time of year. The cold and flu season is reported to be from October until the beginning of Spring each year, and you can bet that you’ll find my family at the doctor’s office at the end of September getting our vaccines to ward off any and all types of flu, viruses, colds, and epizoodies (our family word for any sickness). But we can’t live in a bubble, and we must go out into the world praying that these epizoodies stay far, far away from us, especially my medically fragile child.
What many people may not know is that these medically complex children, especially those with developmental delays, don’t get sick like our typical kids. They can’t just get a decongestant or antibiotic, get some rest, drink extra fluids, and bounce back within a few days. No, they absolutely cannot. These kids battle an illness. They go to war when an infection or virus takes over their body. They have to fight it off with every ounce of strength they can muster up. A simple cold, also commonly known as rhinovirus, can land our babies in the hospital, on oxygen, and receiving chest physical therapy (which is basically pounding their chest and back hoping the gunk doesn’t find a home in their lungs) every few hours. It’s a big deal. But wait, what happens when the gunk does make itself at home in their lungs? Well, that would lead to a nasty little condition called PNEUMONIA. It is life threatening for anyone, but when our medically complex children get the P word (by way of cold virus, flu, aspiration, etc) it could be detrimental and the “life threatening” phrase is never far from our minds as we hover over our children in the Pediatric Intensive Care Unit.
So I have a plea for all you parents out there. This is coming from my momma heart, deep down where I hold all of my hidden thoughts. The place where I keep the thoughts I have, but dare to never say because they might hurt someone’s feelings. So here goes….KEEP YOUR SICK KID AT HOME. PLEASE!!!! You may think, “Oh, he just has a cold and the sniffles. He can go to that birthday party.” Well, sure he can go, but can you just think for one second about the other kids that might be there? You can obviously tell my child is special and complex because of his big, black 70 pound wheelchair, but what about another medically complex child that has no outward sign? Like a child with an immunodeficiency disorder or epilepsy (illnesses cause an increase in seizures)? Or you may send your child to school despite her 100 degree fever or her vomiting before breakfast. Perhaps you haven’t thought about this aspect before, but you must know that your child’s sniffles are my child’s PICU stay.
I understand that parents out there have no intent to spread their child’s illness, and I know many parents work and have to take off when their child is sick. I totally understand. Ask me how many times I’ve taken off for my sick child since August or how many times I’ve had to take off to spend weeks in the hospital? Yep, I know; it’s hard taking off, but the fact is that our kids (typical or complex) need us there to help them recover when they are sick, and goodness knows we don’t want their illness to spread. This is also a great time to talk with our kids about tips on preventing the spread of viruses/illnesses:
- Avoid close contact with others, such as hugging, kissing, or shaking hands.
- Move away from people before coughing or sneezing.
- Cough and sneeze into a tissue then throw it away, or cough and sneeze into your upper shirt sleeve, completely covering your mouth and nose.
- Wash your hands after coughing, sneezing, or blowing your nose (and wash frequently).
So if you are reading this, please know that I’m being sincere in my request, but also brutally honest about a very serious topic that affects my son and the other 20% of children (adults too) out there with complex medical needs during the cold/flu season.
Now while our kids are healthy and gunk free, let’s get to some pumpkin patch picking and enjoy this beautiful weather!
What do you do to protect your family during cold and flu season?
This brought me to tears, thank you so much for putting into words what we all carry inside us bubbling underneath the surface. Our 8-year old daughter has a primary immune deficiency and there have been many times we’ve electively kept her out of school because other children in her class are still attending despite being ill. This on top of the weeks and months she misses due to being chronically ill herself. I think it’s truly impossible for anyone else to ‘get it’ unless they’ve walked a day in the life of a medically fragile child.
Same here, any simply cold can trigger a flare and that scares me to death… 🙁
Thank you so much for writing this. I’ve shared it on my Adventure’s of Henry Facebook page and my personal page. Henry is my oldest son, and he died five years ago this week of a common bacterial infection. He was three. See, Henry and his younger brother Jack both had an undiagnosed immune deficiency disorder. Sadly, no one discovered it until after it was already too late for Henry. Jack, now 6, continues to receive treatment every four weeks and will need them for the rest of his life. Like you, the smallest thing can land us in the ER. Jack shows no outward signs of his disease (x-linked agammaglobulenemia) though. We are at the mercy of the world around us and do our best to educate our community on the benefits of herd immunizations and proper procedures for illness. Thank you for helping. <3
I understand ur frustration but most people have a cold. And it isnt a illness for people who r normally healthy so y wud we keep children off school for a cold the children get into trouble for being off. A xold doesnt mean there sick im afraid. I have a disabled child but I wouldnt expect other people to change there life to suit mine.its just one of them hings. Sickness yesni totally agree but a cold thats normal at his time of yr x
Most people do not have an illness until someone else gives it to them. Keep your germs home and then they won’t spread. Practice sanitation, consideration, and common sense.
I lost my baby boy not quite 4 weeks ago to rhinovirus. He was 6 months old and medically complicated. He didn’t even have a symptom. He went into respiratory arrest and cardiac arrest simultaneously 3x in 24 hours. Then they put him on ecmo so he could rest and get better. Each day he got worse. Pneumonia is scary, but rhinovirus is very dangerous as well.
OH my heart. I’m so sorry to hear of the loss of your baby boy Alicia. Yes, any “simple” sickness can turn very ugly so fast with our complicated ones. Most people just don’t get it. Sending warm thoughts and prayers your way.
Omg! you did it! you described so well my anxiety and my fear of my girl getting sick, I hope more people read and be aware, medically fragile people does not simply get “flu” their life is in danger… Thank you for posting this 🙂
Thank you Irma, and you are so very welcome!!!! It is a very real concern for us all of the time. Had to get this thought out for the world to see!
Love this article. My 9 year old son has leukemia, and we have spent around 80 days inpatient, mostly due to fevers from rhinovirus etc… He is in treatment and will have chemo for 3.5 years. We are cautious but we can’t stay inside all winter! I shared this article and hope many will read!!!
“Medically challenged” Is what we call it in my house. I have a 10 year old asthmatic and a 3 year who is unable to digest most foods. We call it challenged because it’s a challenge to make she neither of my girls are lost to us. It’s been a battle since my first was born, but it’s not just winter, it’s spring, summer and fall it’s years of breathing treatments iv’s oxygen. A simple cold it deadly, a stomache flu can kill and there is nothing we can do. In 10 years I can’t remember a time I slept thru the night without a monitor going off. It’s hell!!! Thank you for posting this! It brings tears to my eyes to know i’m not alone.
I want to hug you!!! This made me tear up. Praying for your son.
And just so I don’t seem as crazy- my daughter has autoimmune neutropenia. So we spend the majority of our time in isolation.
hi there I found this article on facebook. A friend had posted it. My family does not get a flu shot at all!! They say the flu shot doesn’t even work with the strand of flu anyways! Instead I use doterra essential oils with my kids and very seldom do they even get sick. Just a thought. If you would like more info or samples of oils please let me know I would love to send you a package!!
I absolutely LOVE this article & can totally understand & appreciate with everything this amazing mumma has said! My lg Sophie has DS which leaves her with a lower immune system than ur average kids BUT she also has arthritis & recieves a Methotrexate injection every week which lowers her immune system even further than it already was. I also used to love this time of year & I not only now hate it but loathe it! Sophie has ended up in hospital 3 times over the last 3yrs over these ‘bad months’ as we call Sept-April she has had croup, bronchiolitis, infection of the trachy, parafluvirus & the dreaded 1 for us DS mums RSV virus! Luckily last year we managed to avoid hospital due to having inhalers which have really helped even tho she has been poorly since end of sept last year until now! Constant cold & snotty nose, UTI’s, chest infections, ear infections, throat infections etc etc BUT as I said we have managed to escape a hospital visit! The main reason I’ve commented though is not only should parents take note of how the ‘bad months’ affect our little ones but also teachers etc! I had to move my lg to a different nursery due to peer pressure from nursery staff etc that I MUST have Sophie at nursery! Her last keyworker words to me were ‘we have a lot of kids come to nursery with snotty noses & colds!’ My reply was ‘yes but those kids aren’t going to end up in hospital on oxygen!’ This is when I found out this keyworker DIDNT KNOW that kids with DS had a lower immune system than typical kids! That was enough for me n refused to take her back to that nursery! Even if my lg didn’t have DS or health issues I STILL wouldn’t take her to nursery if she was choked with cold, even if she felt ok n well enough to go, for the simple fact I wouldn’t want other kids to catch her virus germs! I was told she needs to build her immune system up n be at nursery around other kids to do this! Eh how can she do that if she’s on medication that lowers her already low immune system? Thankfully the new nursery she is at are very understanding & we have already had meetings with staff & nurse etc explaining Sophie MUST be kept at home if she is chesty or badly choked with cold etc & they are amazing. So please this article should reach not only parents but education members also ? xxxxx