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28 Things Parents of Medically Complex Kids Want You to Know

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Parenting kids with complex medical needs means that, for some of our kids, being “poked” with needles is part of life.

Sometimes it means our kids miss several days of school due to illness or medical complications.

For some of our kids, it means daily medication or medical equipment to help them breathe or stay alive.

Sometimes it means our kids have spent so much time in hospitals we become professionals — professionals who still find every single hospital stay stressful, exhausting and heart-wrenching. Yet we’ve had to do this time and time again.

For many of our kids, it means a different childhood — one in which their medical needs are in the forefront consistently.

And for us as parents, it means we have to be strong for our kids, even if we feel like falling apart.

We reached out to our Mighty parents and asked them what they wish people understood about raising a child who is medically complex.

These were their responses:

1. “I wish more people would talk to/interact with my son, rather than talk about him. He understands much more than people think, and because he doesn’t respond ‘appropriately,’ he is ignored most of the time. He loves being around people, especially new people, and I don’t think they realize what they are missing out on by not talking to him.” — Lauren W.

2. “Just because you think she looks fine doesn’t mean she’s fine. Your worst day is a typical day for her. She has learned to just deal with her pain.” — Jennifer T.

3. “I wish people knew how much I worry and how that worry affects my whole life. My health has declined, my stress is sky high. And my son ‘looks fine’ right now… but he has major challenges ahead that I can’t help worry about every single day.” — Ann W.

4. “People look at my son and say, ‘aw, poor baby.’ Yes, he’s on oxygen. Yes, he can’t sit up or play on his own right now, but, he’s the happiest little person ever! We do things everyone else would do — we just have to be creative and find different ways to do them so he can be involved, too. There is no ‘poor baby’ here.” — Aundreea E.

5. “Our lives can change in the blink of an eye. There is always a bag packed by the door just in case there is a trip to the emergency room. We cannot plan in advance. Our lives are moment to moment. I wish people could be more understanding of that rather than trying to make us feel guilty for missing events.” — Ally W.

6. “You can’t just leave the house and go do things. It takes a lot of work and preparation just to get out of the door and not all public places are the best situation for the child. Especially crowded places.” — Jenna M.

7. Our lives are really joyful. We sing together, travel together, shop together, swim together. Our version of normal just happens to include a whole interdisciplinary team of specialists. But that can’t stop us from having a whole lot of fun.” — Meggie K.

8. “My son is a person who exists outside his medical complexities. He has his own personality and is not defined by his physical limitations. It’s not OK to feel sorry for him because my son is awesome and he kicks serious butt!” — Carie A.

9. “My child has a set of goals quite different than the majority. School staff spends a lot of focus and energy, commending academic and athletic excellence. We really need a broader picture of success so that children with complex health issues can feel like they are (and live up to) being included as a valued member of the larger social picture.” — Brigitte FB

10. “I’m tired all the time. I’m in a constant state of heightened anxiety, and it’s exhausting. Yes, you may see me interacting on social media, but that’s because I can do it on my own terms and within my own time frame. I’m not the same laid-back person that I used to be, and if you can’t respect the changes I’ve undergone, there’s the door.” — Holly M.

11. “Invisible diseases are not fake diseases. When my child is out there, playing hard and having a blast with the rest of the kids, it is taking far more out of him. His smile and his laughter hide so much. I know it is difficult to understand, but yes he can walk, run and jump, and still need a wheelchair. His joints can only do so much before needing to rest. When he is excited, he will push himself harder and do more, but without that wheelchair available we wouldn’t be able to do any of it at all. Please try to hold your judgment. We hear you (he hears you) whispering, or worse, intentionally saying loudly enough for all to hear, ‘That kid doesn’t need a wheelchair, he was just jumping off of those steps and ran right past us!’ This child needs it because he just jumped off those steps and ran right past you. He needs it because when he does simple little things like most children his age, it takes a toll on his joints, bones, and muscles. It sends his autoinflammatory system into a hyperactive state. It causes him extreme pain. He smiles through it because he is soaking up the time he is out and about. What you didn’t notice as he ran past you were his glassy red eyes, a small but sure visible sign of his internal inflammation. What you don’t see, what you won’t see, and what you aren’t factoring into your judgment, are the tears he will cry tonight, wincing in pain as he lays on the couch or his bed because of his day of fun as his temperature soars, where he will remain for three, four, maybe five days without being able to stand, let alone walk, run or jump. Days during which he is unable to eat, has difficulty sleeping, blankly waiting for the pain to end. You don’t see his regular, scheduled, necessary injections that help control his genetic disease, the oral medications to help him through his flares that still hit in spite of his injections. When you see my son or another child like him, share in his joy realizing that a child who needs a wheelchair was able to run and jump for a moment before seeking the comfort and necessary rest of his wheelchair. When he smiles, smile with him. Hold your judgment. Remember that there is so much more than meets the eye.” — Sharon S.

12. “It can affect every aspect of your life: your emotions, your finances, their schooling, your transportation, and your housing. It’s more than just a lot of doctor appointments and/or medications.” — Julia R.

13. “Just because a person may have a rare disease themselves doesn’t mean they know everything about living with one. Everyone’s journey is unique. While two people with similar experiences may indeed be able to relate, there is a limit and ultimately everyone walks their own path.” — Angel P.

14. “My child doesn’t need or want your sympathy or prayers when we’re out in public. Well wishes are always welcome, but asking a stranger if you can pray for their child, in public, really oversteps the boundaries. Especially if you have no idea what belief system they may have, if any. Also, if you see a child in a stroller or wheelchair, and they appear to be ‘too old’ (in your personal opinion) to be in one, assume there’s a reason, and shut your mouth. There is absolutely no need for you to shame the child or parent with your unwanted and unnecessary comments about it. This goes for toys, bottles, pacifiers, diapers, and any other thing that you see and just don’t like. Keep it to yourself! If you don’t have anything nice to say, don’t say anything at all.” — Sabrina K.

15. “As a mother of a child with a rare disease, it’s not the disease that scares me it’s the symptoms. It’s the realization that I need our daughter to learn her own limits and letting her do so [yet] stopping her before it becomes dangerous to her! I would like people to understand medically complex is simply that, it’s complex!” — Stephanie M.

16. “It’s hard as a parent when all you want to do is comfort your child and relieve their pain but there’s nothing you can do but hold them and tell them you love them. It’s also difficult when you have seen numerous specialists yet don’t have a clear diagnosis or effective treatments. Trying to convince your child to see one more specialist because they might have the answer gets to be a tug of war when your kiddo has been made to feel that ‘it’s all in their head’ and that the doctors really don’t care or worse — that they don’t know what they’re doing.” — Jill L.

17. “Unless you have MD/DO etc. after your name, telling me, ‘That just doesn’t make sense. Why would you give your child that medicine?’ helps me in no way whatsoever. The last thing I need is to be judged by friends and family.” — Alison W.

18. “Our life is different and has to be. We often need to take two cars to function, we often cannot make long-term commitments, we don’t know if tomorrow will be a good day. Don’t shun us, but embrace us.” — Deb J.

19. “People don’t have to be afraid to stop over and see my son. He’d probably like a few more visitors. As long as you don’t have the sniffles, please come see my child (and the family), we’re lonely over here! Being sick is a lonely business.” — Shayla FW

20. “Life is unpredictable, and canceling at the last-minute sometimes happens because of it, it’s not being rude. It’s having to prioritize my child’s health before anything else. Missing out on things because of this is tough and finding friends who get it and understand and support is so important.” — Sherry J.

21. “I’m not just being overprotective; I do what I have to do to keep my kids safe and healthy. My kids may not like it, their teachers may not like it, their friends may not like it, but every decision I make is made with their well-being in mind.” — Amanda W.

22. “Our children lose so much due to their illnesses: sports they used to play, activities they can no longer do. That plus the inevitable battle with anxiety, PTSD and/or depression that comes with multiple conditions. Loneliness and lack of social contacts is a huge problem, especially with rare conditions where people don’t understand and there aren’t supports groups around for them. And most of us have had doctors misdiagnose and dismiss our children (multiple times!) so this is why we research until we know more than many of the doctors.” — Jane S.

23. “The feeling of helplessness is overpowering. There is nothing worse than seeing your child in pain no matter how old they are and knowing there is nothing you can do to help other than be there for them.” — Lorraine H.

24. “We are not superhuman. We are caring for our child to the best of our ability — as I would hope that anyone would do as well. I wish people would understand that they too could do this if they were given the situation. We do not need or want pity. My son is thriving and so are we… it’s not always glamorous, but there sure is a lot of love involved.” — Naomi G.

25. “Stop saying, ‘She looks fine to me,’ or ‘Stop worrying she’ll grow out of it,’ or ‘You’re ruining her childhood, she doesn’t need all of these therapies and services.’ Had a family member tell me it’s all in my head just this past week. If only they lived a week in our shoes. I wish they understood the fight I’ve had to fight to get her to where she is today. I wish they saw her on her worst days so they’d never act like ‘it’s no big deal’ ever again.” — Allison A.

26. “It’s normal to be excited, sad, scared and overjoyed about the very same single event. It’s because I really didn’t know if that event might actually occur. Life is potentially short.” — Kerri F.

27. “There are so many things to research, read, do, remember, worry about, explain, drive to, and buy. It’s never-ending, and I couldn’t possibly explain it all to you, so just because I haven’t mentioned anything recently doesn’t mean nothing is going on. I’m just not talking about it! Yes, she looks perfectly healthy, but she isn’t.” — Jessica M.

28. ” [Our kids] have the right to privacy and not be talked about in front of them as if they don’t exist. It’s not all doom and gloom, just hard 24/7 to be a carer — don’t need sympathy .” — Karen P.

Getty images by monkeybusinessimages

Originally published: August 22, 2018
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