What Should Chronically Ill Kids Expect From Their Parents?

Two stories from the past couple of weeks over the Christmas break illustrate a few of the things our kids need as they wander through life.  Kids need us to teach them what is expected of them, and they need us to give them a comfortable context to place their experiences.  They need us to build them up and give them the strength needed to deal when the world is not as we would wish.  At some point they need the strength to make and shape the world as they and we would wish.

The first story begins with my son O feeling very upset because he felt like his cousins never let him decide how they were going to play.  To their credit, the little kids recognized this and had a very mature response telling him after lunch he was to be “king, deciding what they were to play and how.”  At lunch, he came over to me very excited, almost beaming, to tell me how upset he had been and what his cousins had decided.  I reminded him being “king” has some big responsibilities to which he responded with an air of surprise, “like what?”

“If a leader tells all who follow him to go jump off a cliff, how many does he lead?  Either they decide not to follow his orders or they jump off the cliff. Either way he is left with no one to lead.  If a leader tells everyone to do what they must even if it’s not the most fun, he can continue in his role.  If a leader tells people to go do work, feeding the animals and cleaning the table, then at the end of the day everyone sits down at the table happy to eat…So make sure everyone has reason to be happy while you are ‘king,’  and maybe they will continue to listen to what you want to do.  Even as king, it needs to be about more than just your wants.”

He responded being king seems like a lot of work, and he wished he was god.  Hmmm, this seems to be a trend in conversations with my kids of late.




(Continue for the second story)

The second story involved my daughter who has some serious coordination issues.  I’ve always thought they stemmed from her stroke, but I have no proof.  For a long time, her legs were different widths, and we worked for a long time at the playground to work on the strength of both legs with a favorite being the “giant’s stairs”  where the kids have to take big steps up to a slide.  Even with the legs being more symmetrical, she still runs with an arm tucked and her bike still needs a training wheel.  Yes, I meant training wheel not training wheels as only one is ever used.  The other still looks like it did coming out of the box as it has so rarely touched the ground.

In any event, the story in question came as the aunts and uncles planned a day for the 8 cousins in town.  It was decided all the kids should go ice skating.  When we point out our daughter who worships her cousins wouldn’t be able to ice skate, we were told, “She’s different from the other kids.  She’s going to have to learn to accept it.”  From a kid’s perspective, a large part of why the cousins were here was to see and play with them.  To have them all go without her and do a fun activity she would love was crushing.  While some of the extended family may have been right to say it was only a couple of hours, it was a couple in the middle of  the day, and she never did get to hook back up with the majority of the kids that day as the family split up doing separate activities after ice skating.  The tears were only staunched when mom told her we could go roller skating next weekend where she will have additional supports, and mom can take her around the rink.  Mom is a good skater, but can’t wear ice skates.  Heck, during our first few outings prior to dating she spent time picking me up and picking out splinters after I frequently fell trying to roller blade with her (trying to spend time with the beautiful woman but feeling like a klutz).

The last story is really about the parent’s role shaping the situations encountered from what is currently undoable back to “What we can do.”   It seems our role to help them define their possible, but to the extent possible to give them a push back against all who would pigeon hole them as handicapped who will always be different unable to participate in everything. 

Even if it’s true, a kid shouldn’t have to learn it at 7.  I love my wife’s answer to define the moment in terms of the fun we can still have and the things we can yet learn to do.

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4 thoughts on “What Should Chronically Ill Kids Expect From Their Parents?”

  1. Maybe 7 isn’t too young to learn they are different. Still, the way presented seems crucial. For a 7 year old, all she recognized was being excluded from a family event. This was crushing for a young lady whose happiest moment of the summer was probably rushing into a house at a family reunion shouting “Cousins! Cousins! Where are you?”

    It’s hard for a 7 year old to have the perspective to realize she is a multi million dollar lucky as all get out girl. How can she put the odds she has already beaten in her life into perspective. She was born addicted and has had 4 heart surgeries, a stroke, and a few nasty viruses when her body was ill equipped to deal with them, and all of that is simply the luck while in the hospital which is in and of itself a miracle. When she came home, we didn’t know if she could be much more than a happy go lucky blob on the floor. Now she reads, runs, swims and loves amongst so much else. She is a miracle…but she’s also 7 dealing with all of the identity issues common to adoption. She sees different all around her, but her family’s acceptance should be something she can take for granted. While completely unintended, the “snub” was heart breaking.

    At 7, she is old enough to know she is different from some. At 7, she wasn’t old enough to feel it from family she cherished, and she wasn’t ready to understand those feelings. Truth told, I’m not sure how to make my kids ready for those feelings or even if there is a way.

  2. 7 is not too young to learn that one is different. One is never too young. In such a situation it is important to give the kids the tools and strengths to face such situations positively. Kids are even crueler than adults as a rule. Therefore there is no age to learn how to deal with being different.

  3. I’m not sure whether is spam or not. So I published it because the link is to a site urging those who need it to get therapy. I think this is critical, even I am not myself currently in therapy. I have considered it many times as I have struggled to deal with the “crap otherwise known as life.”

    Part of the reason I left it up in this post is because I think the secondary psychological impact of illnesses on our family is very often neglected if it is mentioned at all. I know the divorce rate for those caring for special needs children is sky high.

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