Has Anyone Parented with a Disability?

Updated on March 26, 2010
A.K. asks from Mountain View, CA
12 answers

I had brain surgery 2.5 years ago and I have few side effects from the surgery except that 3 or 4 times a year I get a a simple partial seizure, especially under intense stress of lack of sleep. The seizures are really mild- just pins and needles for a few seconds on the right side of the body, and no loss of consciousness, so there is absolutely no danger to my child, but they are expected to last for at least 4-5 yrs after surgery. As my surgery was at age 33 I had to make the difficult decision of having my child before I was completely physically recovered. At that time I was well enough, but now with the stress and lack of sleep of babies, I am more prone to seizures and have to go back on medication.
I guess I don't really have a question, but I'm wondering if anyone knows about support groups for parents in my situation, or if anyone else went through this and if you have any advice or inspiration. Not being "100%" there for my daughter does get me down sometimes, and I'm sure there are people out there who think I shouldn't have had a baby in the first place, but honestly she has brought joy into our life and pulled us out of the misery of such a traumatic experience...

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J.K.

answers from Mansfield on

Don't know of a support group but I am sure if you talk to your doctor they can recommend something to help you. Don't get down on yourself for your disability. Many disabled parents care for their children and this doesn't sound too serious that you can't handle it. Ask for help when you need it- take care of yourself, get rest and relax so you will not get sick. If everyone waited until the time was perfect, perfect health, perfect marriage, perfect house, car, job, amount of money,etc.... there would be very few children in this world.
I 2nd Suz's comment about you sounding like a wonderful mom! And don't worry- the baby stage doesn't last forever and from your explaination your side effects will not either!
Hug that baby and thank God for her.

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K.L.

answers from Dallas on

I am sorry but I don't know of any support groups but I wanted to tell you how much of a wonderful mother you are for just writing this post. I am sure it wasn't easy to do but you did it to find help to better yourself. And who cares what other's may think. It's nobody's business but yours and your husbands when you should decide to have children. I am sure you are a very wonderful mother and wife. Bless you for being so strong through all of this.

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S.K.

answers from Minneapolis on

I don't know of any support groups but perhaps you could talk to a rehabilitation center in your area and the hospital you had surgery at I'm sure they can direct you to some type of website of support group.

RE: not being there 100% for your daughter (and any future children) don't you ever think like that! From your post you sound like a wonderful, kind and loving person... that is all your child needs. There are children out there that unfortunately don't receive that from their 100% able bodied parents.

Congratulations on your success so far and God bless you in your journey.

1 mom found this helpful
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M.Y.

answers from San Francisco on

I am an occupational therapist and have worked with people in your similar situation. However, I am based in the East bay and know of Through the Looking Glass which is based in Berkeley. They are a group that helps parents who have challenges. Another resource maybe parents helping parents (you can goggle them and they may be able to help you). Hope these couple of suggestions help. Good luck

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M.B.

answers from San Francisco on

I don't know anything about this subject but I just wanted to say that I think you are a very brave "mama" and you will have the strength to pull through this. God doesn't give us what we were not meant to have so I know that you will figure this out and go on to have a very happy life. Just some words of encouragement!!!

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D.B.

answers from San Francisco on

You did the right thing--God will find the way for you.

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C.S.

answers from San Francisco on

Hi there. Disability is tough, and I am in awe of your strength and perseverance, your courage and your patience. The disabilities that many of us have which are not apparent to others have their particular challenges. Anyway, I suggest that you go online to find support groups for the issues/symptoms/condition that you experience, and perhaps within that can find support for and links to others with the unique parenting struggles you have. I have found a lot of information and support (not necessarily in a true support group form) online for a neurological disorder which has been very helpful. It doesn't fix it, but it is very informative to hear other people talk about an ongoing disorder or issue, even hearing the language others use can be liberating and supportive. best to you.

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A.J.

answers from Albuquerque on

My husband is disabled, but he is a better father and husband than most of the men I know. He is in an electric wheelchair and had never been able to "pick" up our child. But he helps me and our child out in every way he possibly can. Our son (age 2) looks up to his daddy and loves him just the way he is.
I don't know of any support groups, but I can tell that you have the desire to give your child everything. Especially love!! Just know that your child knows that you love them, and they just want you to be there to the best of your ability! Maybe you won't be able to do things the way "normal" people do, but that doesn't matter to that child. You will be the best and only mom that child knows just the way you are. You made the right decision to have your child and don't let anyone tell you other wise. That is your decision to make, not theirs!!

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J.K.

answers from San Francisco on

I have fibromyalgia and also get migraines occasionally and headaches frequently. So, I sometimes worry about my 4 year old. But really, we're ok. I just do my best. My daughter is a happy girl. I am very grateful for her in my life. I may not be a Super-mom, but I am a good mom. Our bodies may not be as healthy as we'd like, but there's nothing wrong with our ability to love and cherish our children and that's what is most important.

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J.R.

answers from Sacramento on

my now ex husband had 3 brain surgeries, and has a seizure on average of every other month, which always lands him in the hospital, I found support through stroke victims website...J.

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N.J.

answers from San Francisco on

Congratulations on having a wonderful baby who brings such joy to you and your husband.

You certainly have more reasons not to be "100% there" for your child than the rest of us who are also not always 100% there!! I am sorry to hear you will have to go back on medication. Are there other things you can do to relieve the stress? Meditation? Yoga? Relaxation? Letting someone else amuse and take responsibility for your child while you simply get a little more rest? I wish you and your family the BEST!! Enjoy your daughter and take good care of her mommy too

Blessings, N.

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W.M.

answers from Sacramento on

Hi, I am epileptic with grand mal siezures, which are under control. I also have migraines, lupus and reynauds phenomenon. All of which have made it hard to be a parent sometimes. We have managed to raise three beautiful children who are 20, 17 and 15. They are all well behaved and have great manners. They have been thru more than their fair share of what my disorders can bring on...but they understand more as they get older. I wish you the best, and hopefully you will be able to not have the siezures anymore soon. So far as support groups go, I have not looked for any. Good luck, W. M

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