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Hydranencephaly Resources in caring for a Child with Hydranencephaly Physical Care of a Child with Hydranencephaly Difficult Times
Pt. 1: Taking Care of You Book: Caring for Your Child With Hydranencephaly
Printed Materials |
Taking Care of You: Managing Stress, Our Experiences Gisela, Grandmother to Megan, 7, Stress I have never over come that one have learnt well in the art of one day at a time and deal with it. The most stressing thing is getting the things she requires it is such hard work on the nerves. My biggest help as been the group being with friends who really understand and that it a great stress buster. Angela, Mom to Chrissy, 3 ½, As for stress...heck, I don't know! I just take it one day at a time, like everyone else, I guess! Some days are better than others! But it's all good.... because in the end I have Chrissy's sweet eyes to look into, and that calm, serene spirit of hers to calm my soul as well!! Dru, Mom to Logan, 4, Stress & how you deal with it--I eat and I yell at my kids. Oh, and I spend money. LOL OK, my real answer is: not very well. I'm not a good stress manager, especially lately since I've weaned myself off of my hormones. However, I find that Logan helps with my stress. If I can sit and snuggle with him and feel his sweet spirit, most times I can feel the stress melt away. He's a great stress reducer. And very tolerant of me when I'm like that, too. April, mom to Chris (September 23, 1988-February 1, 2003) I took one day at a time. Thinking too far into the future was too scary. As the years went by, thinking back to all we went through was even scarier. You just do. Try not to ask why or how. Kay, mom to Blaine, Stress & how I deal- I smoke. Not anywhere around anybody, but it is the way that I vent. I pray a lot. I can't talk to Raymond about it because he deals with it in a totally different way. I talk to friends about it, but they don't understand. It helped a lot when Megan came. She was another gift from God. She helped our marriage too Dani, mom to Pauli (July 26, 1993-May 14, 2003) I know I have been very depressed for many years and the anti depressants have helped me in the last year. I have a very supportive mom so if she hadn't been around to help me co-parent i don't know if I could have done all I did! I just took one day at a time, that is all you can do or you drive yourself nuts! I still just take on day at a time. The most stressful part of raising Pauli wasn't his hydran & being disabled it was the people I needed to deal with to get nursing or services for him. They stressed me the most and made me to be a mean person at times (had to be or they didn't listen)! We had wonderful doctors and two or three great nurses for home care. But there were times we'd go thru nurses or Pauli would just be so sick for long periods of time. I 'd get stressed but you learn to deal with what is thrown at you. I would shop (not a good way to deal with stress), go for a drive if I had a nurse, joined kick boxing or went back to night school (I found that to be a good break for a few hours),go out to dinner with a friend or my mom. What ever I could to get a few hours/ as a break. Renee, mom to Brennan, 2 I cry!! I try to discuss things with my hubby, although he couldn't POSSIBLY understand how I'm feeling!! :) But honestly, PRAYER and my FAITH in GOD is what keeps me going and pulls me through a lot of the down or uncertain times. This group has also been a tremendous support and a wonderful outlet. And of course when I look at our sweet little angel boy, and he's feeling well & doing good and is quite happy just entertaining himself--my heart totally melts. He is” pure love". And I'm grateful that we were chosen to experience such a beautiful soul here on earth. Agnes, mom to Rachel, 10, I just deal with things as they happen I used to be frightened and anxious a lot but I’m a stronger person now because of Rachel but its better taking things one day at a time and no matter how tough it gets I just keep telling myself we will get there eventually it keeps me positive Rehan, mom to Tyson (August 2, 2002-March 27, 2003) When Tyson first came that was stress beyond belief. I used to hit walls, until I fractured a bone in my hand, After that I turned to poetry and my faith. My faith in God is what pulled through. I was special and God had sent me an angel to take care of. Everyday I would tell myself, "God only gives us what he knows we can handle, so I must be pretty strong. We've made it this far!! Other pages in this section: |
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August 16, 2001- January 12, 2005 This website is funded in loving memory of Jason S. by his mother Kammy The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly. Please report any broken links or missing photos to angelbearmom@shaw.ca
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