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Parenting a chronically ill child


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My DS has a long history of medical issues but has done well for about 8 months. Since Thanksgiving, however, he has been struggling and, over the past 2 weeks, his symptoms have progressed. Some tests are being ordered but the problem is his condition is extremely rare- we have not found another case like his and neither have his doctors- so there is no protocol for treatment. His docs are pretty much making it up as they go along. Don't get me wrong- he has been seen by some of the top doctors in the country and I have no doubt his care has been top notch. But, still, there is so much unknown. Which is where the problem comes in.

DS is dealing with a lot of fear and anxiety about what may be learned from these next tests. He has been through them before and he knows that, depending on the results, more intervention may follow. He says he hates this part of his life and he hates "being me" and so forth. I want to tell him all will be well but, like I said, nobody knows what to expect. He has had 7 surgeries in his life- 3 of them major surgeries due to this condition. So, I can't tell him "its going to be okay" since he knows better!

All of this unknown is anxiety provoking for me so I totally understand why he is so anxious about it. I try to tell him "not to worry" but I know from experience one can't simply "stop worrying."

How do I help him cope and deal with this in a healthy manner when I don't even know how to cope myself?

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Proverbs, I'm so sorry for both of you:( That is a lot to be dealing with. I know you are the parent, but can you maybe learn together on this one, how to cope with this anxiety, admitting that you need to learn too? Tell him the things you are trying and he might tell you what he is willing to try. There's meditation, inspirational reading, exercise, breathing techniques...one of you might really hit on something that works. (then tell us so we can learn!!!)

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Thinking of you both Proverbs.

This sounds like a very difficult situation and one that is not entirely understood unless one is in or has been in the situation itself.

You ask how you can help him cope; the one thing that comes to mind is to create a 'together journey' one where you both learn about what test reveal, working out what it means, educating each other together.

When he becomes anxious about more treatments, find out (together) all you can about it, work on what part of this treatment makes him scared/anxious, devise a plan of how to work through the pain/anxiety (like things he would like to do - when he feels...... distractions even).

I am guessing the fear of the unknown is a huge anxiety and for a child who has experienced so much of this stuff already. I don't think you need to tell him that everything thing is going to be ok. I think it is more about letting him know that you will be there to help him work through what ever he needs at that specific moment in time. (This sounds exhausting, so it doesn't have to be you all the time. It could be siblings, dad, grandparent etc).

A therapist for you and him also sounds like a need, as too a need for the whole family unit.

Just a though, Has anyone explained what fear and anxiety is to your DS? And that it is OK to have, what it does and it has a purpose etc.

Proverbs keep asking for support, it sounds like you are in some uncharted territory. But there are people out there who are will to support and help. Just keep asking.

Take care

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  • 1 month later...
Hi Proverbs,

Are there any new updates on your dear son? I have been thinking of you and him. i hope things are going smoother for the both of you.

Your in my thoughts and prayers.

Thanks, hon! Sorry, I didn't see this sooner.

He had the test done and, thankfully, it was not as bad as he feared but there is definitely an issue that needs to be dealt with. We were given advice by the specialist who performed the test but his pediatrician is not willing to order anything without getting his pulmonologists' input as he is the one doctor who has followed DS through this entire journey. We will see the pulmonologist on 3/16 and see what, if anything, can be done. We know that, because his condition was not diagnosed until he was nearly 5 and was not completely corrected until he was 8, there is some permanent damage. The goal now is to provide him the best chance at "normalcy" with as little medical intervention as possible. Overall, he is still very much improved over his pre-surgical condition so, for that, we are extremely grateful!

DS is having some pretty severe anxiety issues right now but I do not know how much of it has to do with this issue. I am going to speak to his pulmonologist about whether or not he would benefit from any type of therapy to help him deal with his anxiety. Some nights he cannot sleep and when he describes it to me, he is clearly having racing thoughts. :)

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Oh poor baby. AS a parent I understand that when our children our having difficult times and we can't make it better for them , it 'kills" our hearts . I personally would feel my heart breaking into pieces , when my son was ill, or had any of his developmental tests revealed, or IEPS.

They are extremely painful. Perhaps a low dose of anti anxiety pill could help your boy relax right before bedtime . I wish the best for him and you.

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