We’re All in this Together: Blending in Special Medical Needs

When one person in the family has an illness, it can sometimes be difficult not to single that person out. We say all the time that we don’t define our son by his disease, but at the same time, there are certain precautions that we do need to take in order to give him the healthy life that he deserves. But how do you do this without singling out the person with the illness? Here are some tips that work for our family, and although our needs are catered to our little guy’s cystic fibrosis, many of these ideas can be helpful for other families who have a loved one with special medical needs.

  • We try to be as matter-of-fact about any changes or special needs as possible. We do our best not to place emotions with our son’s needs in order to prevent him from getting unnecessary sympathy, sadness, or fear. Instead of asking our older son to wash his hands when he comes home from school, because we’re afraid that the germs might our little guy sick, we ask him to wash his hands, so that the germs from school stay at school.
  • Whenever possible, we make the changes for the benefit of all of us. It is certainly much better for our little guy if everyone washes their hands more often, and we avoid going to places that allow smoking. But it’s healthier for all of us too. There’s no need to say, “We shouldn’t eat there, because our baby can’t be around smoke.” It’s just better for our family if we choose a smoke-free restaurant. When our little guy needs to get exercise, we can go for a walk or play soccer in the backyard as a family, because exercise is healthy and important for everyone. Never mind the fact that it helps to keep our little guy’s lungs clear.
  • If there is a special need that does not apply for the rest of the family, we do our best to let it blend in to the rest of the family’s routine. Our little guy is going to have a specific diet with higher amounts of calories, fat, protein, and salt. We have already mentioned this to our older son when we first explained cystic fibrosis to him, and his reaction was, “Aw, man! But I like salt! I want extra salt too!” That’s an understandable reaction from a child. But how do we try to keep our meals from being focused on the differences in what we are eating? This is where some creativity is involved. We can find ways to cook one meal, but add extra calories like butter or oil and extra salt to our little guy’s portion before serving the meal. That way, each boy could add a little salt to their food at the table, but neither of them would realize they were eating anything different.
  • We can embrace the differences as a family. During treatment times, hospital stays, or long doctors visits, we can find ways to make those bonding times as well. On Monday after our little guy’s two-hour clinic appointment, we spent the afternoon at the zoo. During hospital stays (which we have not had yet, praise Jesus!), we could bring lots of games to play, books to read, and movies to watch together. During breathing treatment times, we watch a favorite TV show. When it’s more about family bonding time than the medical need itself, those important needs are being met, but they sort of fade into the background.
  • We all get involved. I do most of the care-taking for our little guy’s needs during the day when my husband is working and my older son is at school, but in the evenings, my husband helps with treatments and medications. We also let our older son help with treatments–turning on the breathing machine, keeping track of the time with the stopwatch during PT, etc–so that he feels involved too.

Today at my older son’s school, the health department was providing a free flu vaccine for each student. Most of the students were able to get the vaccine in the form of a nasal mist. However, it is not recommended for those who will be around someone with a weaker immune system. Therefore, my son needed to receive the injection, but our little guy’s CF doctor suggested that we didn’t tell him, “You have to get a shot because of your brother.” So I thought all day about how to tell him he needed to get the shot, when he knew that the rest of the kids were going to get the mist, without putting the blame on our little guy. I ended up telling him that we thought it was best for everyone if he got the shot instead of the mist, because sometimes the mist can make people sick. Then, I pointed out that his dad and I were both getting the shot on Thursday, and his little brother would get the shot as soon as he turns six months old in November. He was a little bummed at the thought of a shot, but he understood and had no hard feelings towards any of us for it. (Oh, and he said it didn’t hurt, that he didn’t cry, and that he was glad they didn’t do it in his “throwing arm.” We also have a wonderful school nurse who had a couple of the older kids that also needed the shot get it at the same time as my son. They went first and then made funny faces at my son to distract him when it was his turn. She is so good!)

With any sort of special need, it’s always healthier for the family to have a “we’re all in this together” attitude. It creates unity, whereas focusing on the needs themselves creates distance. I’m sure there will be times where our little guy will still feel singled out, despite our best efforts, but the fewer times that happens, the better it will be for his mentality.

If you have a special medical need in your family, how do you create a sense of unity where there are obvious differences? I’d love to hear some other ideas, since we are still very new to this. 🙂

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3 Comments on “We’re All in this Together: Blending in Special Medical Needs”

  1. bellab85 says:

    This is a fantastic post. I would love to share it with my own readers. Would you mind if I repost it on my own blog???
    I am a mum of 4…three of whom have special needs. My eldest son and daughter have significant development delay and my youngest son has cystic fibrosis. All this tips you mentioned about not wanting to point out the CF are exactly what we do. It dies get hard at times, because I feel a certain obligation to raise awareness of CF, but I want son defined by who he is, not what he has.

    With my older children, little tips I have picked up in various therapies over the years have become day-to-day life. For speech development, I have commentary (eg”I put the dishes IN the sink, I scrub the dishes, I put the dishes ON the rack” )
    We have pictures as a daily planner so they know what to expect for the day ahead.
    Strict timetable of bedtime, timers for video games, my kids have even colour-coded themselves (one is blue, one is green, one is yellow and my daughter is of course pink) that way there is no fighting over whose cup it is, whose dinner plate it is, whose balloon they are playing with…etc

    Keep up the good work!

    • Laura says:

      Wow, your plate is full, sister! Those are some great tips, not only for developmental delays, but for anyone with young children who are learning the ways of the world. 🙂 My best friend has a little boy with down syndrome, and using sign language has helped him come a long way with his speech! There are so many great tips and advice out there, and I am so happy that you found usefulness in mine. 🙂 Feel free to use it! Yes! Spread the awareness is one of my goals too, but I try to keep it in check with the idea that my son is not “disabled” by this. He is every bit a normal baby as the next. Thank you!! God bless you and your children.

  2. bellab85 says:

    Reblogged this on Bella's Blog and commented:
    I found this blog post by “Close Families”.
    I think it deserves a read!
    Bella 🙂


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