How to adjust to your child's chronic illness?
August 12, 2015 1:34 PM Subscribe
My 7 year old son was recently diagnosed with generalized dystonia. If you've been through having a previously healthy child develop a chronic illness, what advice would you have for someone else who's trying to deal with this?
I think I'm functioning okay in terms of getting done what needs to be done for my son physically and emotionally, but I'm a bit of a wreck myself at the moment.
One issue is anxiety. At the moment we don't have a prognosis for my son. We're in the process of getting a number of tests done to try to determine the cause of the dystonia. I'm experiencing a lot of anxiety as I think about the possible causes and their treatments and prognoses as some of them are very bad ("don't google this", the doctor said) things. I have started taking Zoloft to help me through this, but so far it doesn't seem to be doing much. That being said, I kind of think that you're meant to feel anxious as you're waiting to see just how bad your kid's neurological problem is.
The other issue is sadness whenever I see pictures of him before the dystonia started, doing things he can't do now, or events roll around that he was able to participate in in the past, but he can't now. I've never had a set idea in my mind of what he should do with himself or be when he grows up, but I guess I did at least have the idea that he'd have lots of options and now I see his world narrowing down. Then I tell myself to quit feeling sorry for him (or me...I don't even know which of us I'm feeling sorry for), that it could be a lot worse, I'm making it a bigger deal than it is, etc.
I am plugged in to the national dystonia groups. Many of the folks on the Facebook groups have children who have both cerebral palsy and dystonia and have been facing their medical challenges since the children were infants, so I feel a bit like an imposter what with having had 7 years of a very healthy child, feeling sad because he now can't rough house, do karate, play soccer or ride horses. Lots of children were never able to do those things.
Can anyone recommend any resources for adjusting to a life change like this? I keep talking myself around in circles, and my main coping mechanisms seem to be overeating, my nightly cocktail, and being selectively irresponsible about housework and chores.
I think I'm functioning okay in terms of getting done what needs to be done for my son physically and emotionally, but I'm a bit of a wreck myself at the moment.
One issue is anxiety. At the moment we don't have a prognosis for my son. We're in the process of getting a number of tests done to try to determine the cause of the dystonia. I'm experiencing a lot of anxiety as I think about the possible causes and their treatments and prognoses as some of them are very bad ("don't google this", the doctor said) things. I have started taking Zoloft to help me through this, but so far it doesn't seem to be doing much. That being said, I kind of think that you're meant to feel anxious as you're waiting to see just how bad your kid's neurological problem is.
The other issue is sadness whenever I see pictures of him before the dystonia started, doing things he can't do now, or events roll around that he was able to participate in in the past, but he can't now. I've never had a set idea in my mind of what he should do with himself or be when he grows up, but I guess I did at least have the idea that he'd have lots of options and now I see his world narrowing down. Then I tell myself to quit feeling sorry for him (or me...I don't even know which of us I'm feeling sorry for), that it could be a lot worse, I'm making it a bigger deal than it is, etc.
I am plugged in to the national dystonia groups. Many of the folks on the Facebook groups have children who have both cerebral palsy and dystonia and have been facing their medical challenges since the children were infants, so I feel a bit like an imposter what with having had 7 years of a very healthy child, feeling sad because he now can't rough house, do karate, play soccer or ride horses. Lots of children were never able to do those things.
Can anyone recommend any resources for adjusting to a life change like this? I keep talking myself around in circles, and my main coping mechanisms seem to be overeating, my nightly cocktail, and being selectively irresponsible about housework and chores.
I haven't had the experience you're asking about, but I want to second that you should not feel like an imposter at support groups. I'm a member of one for preemie parents -- for a long time my kids were by far the sickest in the group, and there's never been a point where I felt that someone else shouldn't be there because they weren't dealing with enough. Parents with a lot of experience raising a child with a disability are probably the most helpful people you could talk to right now.
If you can afford it it might be a good idea to hire a cleaning person. Your nightly cocktail is time well spent, in my opinion!
Good luck to him, and to you.
posted by gerstle at 3:11 PM on August 12, 2015
If you can afford it it might be a good idea to hire a cleaning person. Your nightly cocktail is time well spent, in my opinion!
Good luck to him, and to you.
posted by gerstle at 3:11 PM on August 12, 2015
Best answer: I am so sorry that you and your family are going through this. It is the worst. I have had a similar experience. My firstborn child was a happy, healthy boy for his first three years of life. Soon after his baby brother was born, he began to lose weight and experience extreme gastrointestinal pain. His whole life changed nearly overnight. Unfortunately doctors were not able to diagnose what was causing this, and eventually tested him for everything under the sun, and then some. He would move from department to department at a children's hospital, as each group of specialists tried to figure out the cause and cure of his intense pain and wasting, and when they came up empty, we would move to the next childrens hospital and start all over. We went through 5 hospitals like this in 4 years. Of course we tried every alternative remedy and practitioner that you can imagine, and some you can't, and drained through every penny of our savings and bank accounts. The good news is that he was accepted into a mystery diagnosis program at Children's Hospital of Philadelphia and was promptly diagnosed and.....over time.....cured! I shouldn't say cured, more like put into remission, but it sure felt and feels like a cure. The boy who weighed only 32 pounds on his 7th birthday is now a running back on his high school varsity football team.
So thats his story, but what about me? what about you in all this, since that is what your question is about? I will be honest with you, I did not handle this life event well at all. It changed me, and honestly it changed me for the worse. I had previously felt like I was a strong, good, kind person, and a really exceptional mother. But the way this trauma hit me, to have a healthy child and then just watch as he changed and wasted away before my eyes, to see him in agony and be powerless to help him, the whole experience broke me. It brought out the worst in me, and I fell into a multi years long depression. I isolated myself. It was not a good mom to my younger son, I wasn't a good wife, and I just generally didn't care anymore. I just had no emotions left. Eventually my marriage broke, and I do blame myself for how I reacted to and dealt with the events of his illness.
I don't know about advice. I don't know if I would have been capable of heeding advice when I was in that state of constant anxiety and fear for my child's and family's future. I did start having an evening cocktail to numb the anxiety and trauma of each days medical appointments, and my son's pain. For me personally, this proved to be a mistake as the drinking increased over time to a level that did not do me or my family any favors. I didn't see or care to see any other way to cope with things other than activities to numb the pain, so I could get up and be a caregiver all over again. And please don't think I am implying that you or anyone else would ever be as weak as I was, or make as many poor decisions as I did. I think most people would just handle it better and I am the big outlier on this. I had guilt for years until I just accepted that it was what it was, and left that in the past. But in retrospect, if I could go back in time, I would have don't so much differently. I would have made my husband a priority, and our marriage a priority. I would have tried to find moments of joy to share with my sick child each day, and focused on what new goals and plans we could create despite the illness and handicaps. I would have tried to focus more on my other child, and on my parents, and tried to give a tiny bit more to them instead of taking them for granted. I would have skipped the alcohol completely ( just me personally) and instead gone in the other direction and tried to really improve my health thru diet, exercise, meditation, therapy, life coach etc. I would have tried to hold in my mind the oxygen mask idea, about putting your own mask on first so you can be there to help you child second...I didn't take care of myself in a fundamental way. I also went the route of comfort food and just had zero energy, felt so drained. At one point I did turn that around and took up running and lost a ton of weight, but because of the drinking and other things, I don't think it really lifted me up as a person in the way exercise could. I will say that running and listening to music each night worked way better as a stress release and pain numbing agent than other things ( I should have just stuck to that) I just started out by walking at first, then later sped up to running.
Its so hard, it really is. I didn't take any anti depressants or anti anxiety meds, and I think that was a huge mistake. I don't recall why I was so stubbornly opposed, but were I to do it over, I would have figured out an effective anti depressant early on and stuck to it, for my husband as well.
I would have socialized more, as a couple or family. It was just so awkward. So many of our friends were so freaked out by what had happened to our son..it was like they were scared it was catching or something. Not really that, but it was like it reminded them of how easily it could have been their child and they couldn't deal with it. We should have cultivated new friendships to replace the ones that evaporated, but we didn't. We isolated ourselves, and that really hurt the situation long term.
I could go on and on, but I guess to keep it simple, it boils down to staying as strong as you can, and even growing stronger if possible. Get as healthy and fit as you can, work hard on your relationships and prioritize them, and get a good therapist and some good medications to keep you on an even keel....and just take it one day at a time.
I wish you all the best, you can always memail me if you want to chat or just have someone listen.
posted by Rapunzel1111 at 8:57 PM on August 12, 2015 [3 favorites]
So thats his story, but what about me? what about you in all this, since that is what your question is about? I will be honest with you, I did not handle this life event well at all. It changed me, and honestly it changed me for the worse. I had previously felt like I was a strong, good, kind person, and a really exceptional mother. But the way this trauma hit me, to have a healthy child and then just watch as he changed and wasted away before my eyes, to see him in agony and be powerless to help him, the whole experience broke me. It brought out the worst in me, and I fell into a multi years long depression. I isolated myself. It was not a good mom to my younger son, I wasn't a good wife, and I just generally didn't care anymore. I just had no emotions left. Eventually my marriage broke, and I do blame myself for how I reacted to and dealt with the events of his illness.
I don't know about advice. I don't know if I would have been capable of heeding advice when I was in that state of constant anxiety and fear for my child's and family's future. I did start having an evening cocktail to numb the anxiety and trauma of each days medical appointments, and my son's pain. For me personally, this proved to be a mistake as the drinking increased over time to a level that did not do me or my family any favors. I didn't see or care to see any other way to cope with things other than activities to numb the pain, so I could get up and be a caregiver all over again. And please don't think I am implying that you or anyone else would ever be as weak as I was, or make as many poor decisions as I did. I think most people would just handle it better and I am the big outlier on this. I had guilt for years until I just accepted that it was what it was, and left that in the past. But in retrospect, if I could go back in time, I would have don't so much differently. I would have made my husband a priority, and our marriage a priority. I would have tried to find moments of joy to share with my sick child each day, and focused on what new goals and plans we could create despite the illness and handicaps. I would have tried to focus more on my other child, and on my parents, and tried to give a tiny bit more to them instead of taking them for granted. I would have skipped the alcohol completely ( just me personally) and instead gone in the other direction and tried to really improve my health thru diet, exercise, meditation, therapy, life coach etc. I would have tried to hold in my mind the oxygen mask idea, about putting your own mask on first so you can be there to help you child second...I didn't take care of myself in a fundamental way. I also went the route of comfort food and just had zero energy, felt so drained. At one point I did turn that around and took up running and lost a ton of weight, but because of the drinking and other things, I don't think it really lifted me up as a person in the way exercise could. I will say that running and listening to music each night worked way better as a stress release and pain numbing agent than other things ( I should have just stuck to that) I just started out by walking at first, then later sped up to running.
Its so hard, it really is. I didn't take any anti depressants or anti anxiety meds, and I think that was a huge mistake. I don't recall why I was so stubbornly opposed, but were I to do it over, I would have figured out an effective anti depressant early on and stuck to it, for my husband as well.
I would have socialized more, as a couple or family. It was just so awkward. So many of our friends were so freaked out by what had happened to our son..it was like they were scared it was catching or something. Not really that, but it was like it reminded them of how easily it could have been their child and they couldn't deal with it. We should have cultivated new friendships to replace the ones that evaporated, but we didn't. We isolated ourselves, and that really hurt the situation long term.
I could go on and on, but I guess to keep it simple, it boils down to staying as strong as you can, and even growing stronger if possible. Get as healthy and fit as you can, work hard on your relationships and prioritize them, and get a good therapist and some good medications to keep you on an even keel....and just take it one day at a time.
I wish you all the best, you can always memail me if you want to chat or just have someone listen.
posted by Rapunzel1111 at 8:57 PM on August 12, 2015 [3 favorites]
Best answer: Dear toodles, my heart goes out to you and to your family.
My son has hypotonia instead of dystonia, and he had surgery last month on both his feet. He's now in two hard casts from kneecaps to toes, and he has been spending the second half of the summer on the couch, playing videogames and cuddling with the dog and having his meals hand-delivered to him on a tray by his long-suffering mother.
So, a pretty normal summer, really.
And that's the only advice that I have for you, is to keep things as normal as possible even when they're not normal. I'd rather be taking my son to the swimming pool, but that's off the list, so I spend a lot of time on the couch, too. I play Mario Kart with him and eat Fritos off his tray when he's not looking. We make it normal because it is what we do.
Don't mourn the lives you aren't living or the lives your son isn't living, because those are not real. What's real, what matters, is the life we live, day by day, as it unfolds in front of us. And our job as parents is to be as supportive as we can in whatever life our children choose for themselves.
My other child, for example, wants to be a professional Minecraft player. Not exactly my choice, let me tell you, but I gladly listen for hours to her telling me about her castles and her diamond swords and her tournaments.
I hope this helps, in some small way. It's not easy. But you can do it. I have my anti-depressant to help (and I'm glad to see that you're doing the same), and my nightly beer, and I do what I can to take care of myself and to follow the mantra of the good-enough parent.
On preview: Rapunzel1111, that's a hell of a story. I'm glad that your son has made a full recovery. My sympathies to you for the difficulty of your journey.
posted by math at 9:17 PM on August 12, 2015 [4 favorites]
My son has hypotonia instead of dystonia, and he had surgery last month on both his feet. He's now in two hard casts from kneecaps to toes, and he has been spending the second half of the summer on the couch, playing videogames and cuddling with the dog and having his meals hand-delivered to him on a tray by his long-suffering mother.
So, a pretty normal summer, really.
And that's the only advice that I have for you, is to keep things as normal as possible even when they're not normal. I'd rather be taking my son to the swimming pool, but that's off the list, so I spend a lot of time on the couch, too. I play Mario Kart with him and eat Fritos off his tray when he's not looking. We make it normal because it is what we do.
Don't mourn the lives you aren't living or the lives your son isn't living, because those are not real. What's real, what matters, is the life we live, day by day, as it unfolds in front of us. And our job as parents is to be as supportive as we can in whatever life our children choose for themselves.
My other child, for example, wants to be a professional Minecraft player. Not exactly my choice, let me tell you, but I gladly listen for hours to her telling me about her castles and her diamond swords and her tournaments.
I hope this helps, in some small way. It's not easy. But you can do it. I have my anti-depressant to help (and I'm glad to see that you're doing the same), and my nightly beer, and I do what I can to take care of myself and to follow the mantra of the good-enough parent.
On preview: Rapunzel1111, that's a hell of a story. I'm glad that your son has made a full recovery. My sympathies to you for the difficulty of your journey.
posted by math at 9:17 PM on August 12, 2015 [4 favorites]
Best answer: Be gentle with yourself keep the faith that in all of these connections you'll find your core group. Have you considered posting to one of the message boards saying some form of what you shared here - later onset, just wrapping your head around the new diagnosis, how did others make it through to The New Normal? What is it like 6 mos later? A year later? You will find your tribe.
My adult child had a diagnosis when he was 6. Looking back now it was as if I was carrying a beautiful balloon that represented my wish for perfect health for my kiddo, and it had been popped. My heart needed time to grieve a little, because it is so NOT FAIR - ask any kiddo whose cherished balloon is gone. There is plenty of solid advice already, and it's not uncommon to let things relax and then regroup. Take good care.
posted by childofTethys at 4:41 AM on August 13, 2015 [1 favorite]
My adult child had a diagnosis when he was 6. Looking back now it was as if I was carrying a beautiful balloon that represented my wish for perfect health for my kiddo, and it had been popped. My heart needed time to grieve a little, because it is so NOT FAIR - ask any kiddo whose cherished balloon is gone. There is plenty of solid advice already, and it's not uncommon to let things relax and then regroup. Take good care.
posted by childofTethys at 4:41 AM on August 13, 2015 [1 favorite]
I have a completely different neurological disorder with some overlapping symptoms and some of the same basis in brain biology (Tourette Syndrome).
I have been helped immeasurably by Cognitive Behavioral Intervention for Tics; it looks like similar methods can be used to help people living with dystonia retrain their brains.
If you sign up for the association newsletters, you'll likely get exposed to lots of hopeful "inspiration porn" stories, about how people who suffered because of their neurological disorder in childhood went on to raise money for awareness, or do team sports, or get accepted to a good college, or whatever.
Something I like to remind people is that there are more ways to succeed than the mainstream markers of success you'll see trotted out in feel-good human interest stories. I'm a weird queer punk who writes about music. I recently got a great job doing exactly that for a living. I'm not a weird queer punk because I had severe TS as a teenager, or despite it. They're both part of me, and there's no way I was gonna let the TS hold me back from my fucked-up dreams.
Your child is gonna find the thing they really love, and they're going to succeed at it; not despite the dystonia, not because of it, but because they're a fully-fleshed, real human who contains multitudes.
posted by Juliet Banana at 9:33 AM on August 13, 2015 [3 favorites]
I have been helped immeasurably by Cognitive Behavioral Intervention for Tics; it looks like similar methods can be used to help people living with dystonia retrain their brains.
If you sign up for the association newsletters, you'll likely get exposed to lots of hopeful "inspiration porn" stories, about how people who suffered because of their neurological disorder in childhood went on to raise money for awareness, or do team sports, or get accepted to a good college, or whatever.
Something I like to remind people is that there are more ways to succeed than the mainstream markers of success you'll see trotted out in feel-good human interest stories. I'm a weird queer punk who writes about music. I recently got a great job doing exactly that for a living. I'm not a weird queer punk because I had severe TS as a teenager, or despite it. They're both part of me, and there's no way I was gonna let the TS hold me back from my fucked-up dreams.
Your child is gonna find the thing they really love, and they're going to succeed at it; not despite the dystonia, not because of it, but because they're a fully-fleshed, real human who contains multitudes.
posted by Juliet Banana at 9:33 AM on August 13, 2015 [3 favorites]
Response by poster: Thanks much to everyone who shared their stories and their advice. I really appreciate it.
posted by toodles at 12:59 PM on August 14, 2015
posted by toodles at 12:59 PM on August 14, 2015
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Please don't read the medical literature. It isn't going to help you. My child is a happy little rock star but if you read about him in a journal article, it would be scary! Just try to deal with the challenges of today. You will adjust to your child's new way of being. Give yourself a break in the meantime. Oh but do try to find a pediatrician or main specialist you like and trust.
posted by Kalmya at 2:02 PM on August 12, 2015