I have a condition called Ehlers Danlos syndrome type III ( or EDS III) and am a mother to two little girls. I am extremely hypermobile and dislocate my joints on a frequent basis. There are many many symptoms and complications that this condition can cause, but in general I get on well unless ill with a virus or if my body is overtaxed in some other way.
Dealing with one's own physical issues is one thing, but having to see your child go through it is a totally different animal. The statement below is of a mother and friend whose thoughts and feelings reflect what i know so many of us feel, not only observing her children suffering, but feeling inadequate as a parent because of her own physical barriers.
The helplessness a mother feels when their child has a congenital condition, regardless of what it is, is similar, I imagine. Thank you Laura for being willing to share your inner most feelings of this subject.
Dealing with one's own physical issues is one thing, but having to see your child go through it is a totally different animal. The statement below is of a mother and friend whose thoughts and feelings reflect what i know so many of us feel, not only observing her children suffering, but feeling inadequate as a parent because of her own physical barriers.
The helplessness a mother feels when their child has a congenital condition, regardless of what it is, is similar, I imagine. Thank you Laura for being willing to share your inner most feelings of this subject.
3 comments:
Everyone's experience is their own. I went into pregnancy knowing full well that I had a 50 50 chance of passing EDS on to them, and unfortunately did. Neither of my parents knew that they carried the genes for Ehlers Danlos Syndrome and I am the only one out of 5 that has EDS.(By the way I'm second out of 5)and they received my diagnoses at 18 months of age. I myself had no serious complications with Pregnancy or Birth. I know not so many others are as fortunate. One of my daughters was handed an added complex gene pool from my husbands side of the family and is also afflicted with Hashimoto's Diesese since infancy as well as Bi Polor from his side, and EDS and Panic Anxiety from my side. She has decided that she will not pass on her gene pool to future generations. My Oldest has EDS and has gone on to have 3 beautiful Children of which we suspect the oldest as possibly having EDS, time will tell. Her middle one is high anxiety and gives us a run for our money daily....(they live with me) My youngest daughter has EDS and ADD as well as dyslexia and an Audio learning disability.....I guess what I'm saying here is I would not change a thing where my children are concerned. I feel bad for them at times, but I feel no guilt in passing this on to them. I feel lucky to be alive with or without EDS. Maybe I can say that because I'm not as afflicted as some are. But life is a a roll of the dice so to speak. We have choices, and I choose to take my chances and for that I have 3 wonderful children and 3 grand kids to love and cherish. Disabilities and all. I however do not fault anyone for choosing to not have children, taking into consideration their disabilities. Parenting is exhausting! But rewarding at the same time.
I had two normal births with midwives in a hospital birthing center. The second one I even had in the water. I'm glad I didn't know about my EDS at the time. They might have treated my pregnancy as high risk and I would have missed out on t...he nurturing experience of my midwives.
For me, the hardest part was the logistics of carrying everything and juggling baby and carrier and diaper bags. I just kept keepin' on and visiting my DO to get put back together - none of us really understanding why I was so "delicate".
I think my youngest (11 yrs old) has it, she even seems to have the leg length discrepancy I have in the same leg. But Now I know and am more careful with pt and omt.
Everyone has something. And we all inherit things (I was adopted so didn't know my genetic heritage). If I'd been severely ill with anything, I wouldn't have had children or would have adopted. But I wasn't so I had them. And my kids are wonderful, especially when I need help. It's a good lesson for them too. After all, they go to school with lots of special needs kids. I just fall apart and get headaches. That's nothing compared to some! :)
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