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How do you unwind?

Posted by on Oct. 3, 2008 at 12:06 PM
  • 26 Replies
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Having a child w/ seizures is stressful.

So what do you do to ease that stress? Also, how often do you get to do this?

by on Oct. 3, 2008 at 12:06 PM
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Replies (1-10):
Prestonsmom2007
by Member on Oct. 3, 2008 at 2:14 PM
1 mom liked this

When you find that answer let me know! My biggest problem is that I am too over-protective of my son and I don't trust that anyone would be able to know what to do during a seizure and so forth...so if I went off to relaxe somewhere I would just be worrying about that the whole time. Once in a blue moon, my husband will stay home with him while I go get a pedicure but that is about it.

sarah_pct
by New Member on Oct. 3, 2008 at 10:05 PM

Enjoy an Ice Cold Bud Light after she is fast asleep!!


blessedwith12
by Member on Oct. 4, 2008 at 8:43 AM

Wen Ben was at his worst, I thought I would go crazy from the stress and fear. I rarely let him out of my sight for a few minutes. I would have loved for someone I trusted to come in and say, "Go take a nap and I'll keep an eye on him." So, sleep would top my list of things I needed. Other things that can help me are a hot bubble bath, reading a book, listening to contemporary Christian music (like on K-LOVE), and a cup of hot chocolate. After a horrendous year and Ben somewhat stabilized (fewer seizures but not seizure free), my husband watched the children and I took my first cruise. I had never done anything that selfish and irresponsible in my life, but WOW, did it ever wash the stress away!

SarahBethK
by Group Admin on Oct. 5, 2008 at 12:18 AM

My problem is actually the opposite, when it comes to others watching him... everyone is too afraid to watch my son. "I don't know what to do if he has a seizure." is the comment we hear a lot. I just roll my eyes. --For my son, there IS nothing you need to do, the seizures just come and go.


But occasionally, my husband will watch him and tell me to go see a movie or go shopping. Which is nice. It's pretty rare though.


And one time, my husband and I went on vacation to Las Vegas for FIVE whole days while his parents watched our son.... the in laws are good with him so I actually relaxed for five wonderful days!!!

jacobsmom27
by Member on Oct. 5, 2008 at 2:04 AM


Quoting Prestonsmom2007:

When you find that answer let me know! My biggest problem is that I am too over-protective of my son and I don't trust that anyone would be able to know what to do during a seizure and so forth...so if I went off to relaxe somewhere I would just be worrying about that the whole time. Once in a blue moon, my husband will stay home with him while I go get a pedicure but that is about it.

I'm exactly the same way.  I always worry that the one time I'm away something terrible will happen, and I won't be there to take care of my son.  My husband sent me to the spa for my Birthday.  I tried to relax and enjoy myself, but in the back of my mind...all I could think of was how my son was doing at home.  It was really nice to get out and do something for myself, but I still felt a little guilty.  As Jacob gets better, I'm sure things will get easier.  It's difficult though because he's our only child.  I do have some wine a few nights a week with my husband after our son goes to bed.  It helps me to relax a bit :)

christydlewis
by on Oct. 9, 2008 at 8:44 AM

I crochet stuff. Alot of crocheting. I dont go off that much with out David but he has spent the night with my mom but she knows seizures because my baby brother had them also. Now he had surgery last month so he hasnt had no seizure or seizure activity since then but he is a ball of energy so I crochet. It helps me because it relaxes me. Oh yeah and I also go for a ride by myself or go to the store by myself sometimes if my husband is at home with the kids but then he has to kick me out of the house most of the time.

blessedwith12
by Member on Oct. 9, 2008 at 12:11 PM

I think another thing I have had to do to cope with the stress is to realize I am not in control. No matter how hard I try to keep Ben safe, things still happen. We have tried having someone with him, literally next to him, 24 hours a day. Eventually, he will still fall, even if we are standing right next to him. We have kept him in a helmet, and he still got knots on his forehead. I have read a tremendous amount of material, taken him to 3 neuros, had numerous tests run,tried and "failed" numerous drugs, gone to a chiropractor, a wellness physician, used numerous supplements, and now the Modified Atkins Diet. He still has seizures despite my best efforts and the prayers of hundreds of people. I have had to accept that this problem is bigger than me and that I can't fix it. I have had to place Ben in God's hands - pretty angrily at first - and admit that God loves Ben more than I do and that He has a good plan for Ben's life. Getting to that point was not easy - but it brought me a huge amount of peace. I am now more comfortable leaving Ben because I have finally learned that I don't have any power to keep him safe. But I have to admit, I am only comfortable leaving him with certain people that I know can handle his seizures.

lexysmommy08
by New Member on Oct. 12, 2008 at 12:54 AM

I know how you feel. my daughteris only 9 months and she is always having seizures. She has Dravet Syndrom which is a very rare type of epilepsy and unfortunaitly there is no cure for it and it is for life. I cry all the time because i am so scared for her. I never let her out of my sight excepted when i work and she goes to day care for 6 hours monday to friday. Day care  which has been so great for her to be around normal activities and other children she loves it and i can relax and know she is safe because the teachers there are so good with her and i work right next door to her. But when my phone rings i panic because i know it is the day care calling to tell me my baby girl is having a seizure so i realy never rest. It is so scary to have a child with seizures and all you can do is always worrie when the next one will be.

lexys mommy

USMCwife2girls
by on Oct. 22, 2008 at 8:34 AM

I am in Lexy's boat.  My daughter has Dravet Syndrome.  She began having seizures at 6 mos, and was diagnosed at 11 mos.  We had one year that her seizures were so bad she was in the ER 50 times in status, and ended up in the hospital over night 8 times ... some of those times were for more than just one night.

She started school at age 3, and is gone for half days.   I go to the gym, I run, I crochet, I scrap, I sew, and I pray.

Recently the Marine Corps qualified us for 40 hours of respite care each month.  It may not sound like a lot but after 5 years, my husband and I went on our first "date" since she was born.   And Jenny LOVES her LPN.

Knowing that I have someone coming to relieve me any time I want, has decreased the stress a lot. 

Our IDEAL is a cure!

www.idea-league.org 

Cymbeline
by New Member on Oct. 22, 2008 at 8:39 AM

I unwind with music and reading. I think in a way, I'm comforted by the fact that she can't hurt herself during a seizure. She's safely strapped in her wheelchair, or on her mat on the floor at all times.

I remember her first  few seizures, and how I cried for such a long time afterward. It's strange, but I have almost adapted to them over the past two and a half years. They still upset me, but I see that she is not in pain during them, and that helps tremendously.


 

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