Taking Care of You

Throughout this site you will find a lot of information about caring for your child with Hydranencephaly. But, you, the caregiver, parent, friend, relative, etc have to take care of yourself and also will have many new feelings and situations to adjust to. In this section I will give you links to sites that talk about your needs and the various issues you may face. I will also include the experiences of the families of our children just to help you know you're not alone.

* Please note: the experiences related on this and other pages in this section are taken from the book "Caring For Your Child With Hydranencephaly" which was released in June 2005. Therefore the ages given for the various children mentioned are no longer accurate. If you're wanting to find out how old a child mentioned is now, please check out our "Our Rays of Sunshine" page. The ages of those who have web pages are given there.

Feelings About Discovering Your Child Is Disabled,

Personal Experiences

Agnes, mom to Rachel, 10, When I found out about Rachel’s condition I felt very alone in the first year very sad, helpless, hoping for a miracle that would make her better, then I found Barb and this wonderful support group and I didn’t feel so alone.

Lisa, mom to Noah age 2 ½, When we found out about Noah having hydran at 9 weeks old I was shocked, but have to admit that I was also kind of relieved because I knew there was something wrong and deep down I knew it was something major, and I was just glad to have some answers. I know this sounds terrible, but when we were told he wasn’t going to live long I was kind of relieved in a way as all he had done since he was born was scream and scream and we were all so stressed and tired and I felt that if he was going to be like that his whole life then it wouldn’t be much of a life anyway.

Of course things changed and he got the right treatment and became a lot happier and healthier (until the last few weeks) and now I hate even thinking about the time when we wont have him any longer.

I did go home in major shock and I remember every morning for the first month afterwards just wishing I could go back to sleep and forget it all -it just didn’t seem real, but as time went on it became a lot easier to accept and I just try to remember that we are so lucky to have been sent Noah the way he is and that keeps me going. He is such a special spirit and everyone who meets him just loves him so much (I think that is why our chiropractor etc is so kind to us). It is one of those things that you think will never ever happen to you and I do wonder why all the time, but wouldn’t have Noah any other way now.

Gisela, Grandmother to Megan, 7, Sadness I suppose. But fear the most of How Long we have her for. This still lurks and rears its ugly head when she is sick. Most days I don’t think about it and believe enjoy every moment we have. And with all GOOD things you have to have bad times. But i cherish every moment and they are Mine to keep for ever

Angela, mom to Chrissy, 3, When we were called by the adoption agency about Chrissy and asked if we would take her, I immediately got on the internet and looked up Hydranencephaly. Thankfully, this group and Barb's wonderful information came up on the search. Armed with a good dose of reality as well as hope from the site, we prayed and decided to take Chrissy. It has been the best decision we have ever made. She is the greatest blessing in my life. I still have days of grief however, just for her sweet spirit and wishing she was able to talk, and walk, and be like other little ones her age. But I always am reminded that if she was like any other child, she would not be my Chrissy. And I would have missed so much her love, her courage, and her strength of spirit. I believe she is a brave soul, who chose to come to this life with these limitations, that she sacrificed much to come to earth and teach others what unconditional love and true perfection is all about. I do not have to grieve for her, because she will be rewarded greatly by her loving Heavenly Father, when she returns to Him one day.

Barbara, mom to Michelle, 5, I had always wanted an Asian baby girl; it was the desire of my heart, one desire that I had no way of fulfilling. When the agency called me about a newborn Asian baby girl, with hydran, I was very torn. Here was everything I had ever wanted in a child; I had even asked for a handicapped child; but...no brain? Everything I had ever wanted and something I had never wanted all in the same package! I just left it in God's hands. It was too big a decision for me to make, so I just said "God, Here I am. I will do whatever you have for me to do". I have always been so glad that God chose Michelle for me, and I realize that He had been preparing me all of my life for her, He had put the desire in my heart for an Asian baby girl; He just hadn't told me the part about no brain until I needed to know.

Dru, mom to Logan, 4, Finding Out About Logan's Condition--as Logan is adopted, we knew about his condition days before we ever met him. I don't think this question really applies to adopted kids like it does to biological ones. I think there's a psychological difference in the way you perceive/understand/deal with the situation than with a biological child of mine. There is still a grief process to be dealt with, however, when you actually start dealing with the condition of hydran in real life--and also when you see other children the same age who are developing, and your child isn't. But I don't think it's necessarily as bad as when it's your biological child, as it's like you signed up for the job, you knew about it from the beginning, and if it's your bio child, you just have to accept the condition instead. Does that make sense? I'm also very thankful for Logan and the person he is and his hydran. He has taught me so much about tolerance, unconditional love, and most of all, patience. He is so very patient every day; having to wait for everything he needs or wants, depending on others and their time schedule for his needs. He is also always kind and loving, very affectionate, always accepts others for who they are, the sweetest creature on earth. He is absolutely perfect, and I am still in awe of him, and so very grateful to my Heavenly Father for blessing my life with Logan. I sometimes wonder what I did to deserve such a glorious blessing as Logan--I can never figure out how a mean old ornery fat woman like me deserves such a wonderful child. It makes me feel so humble, and always makes me cry. I also admit that I'm terribly afraid of the day when Logan is called back home--the thought is unimaginable to me. What will I do? I can't think about it for long, I just can't handle it, with all my kids asking me what's wrong and why am I so sad. But I digress, sorry.

April, mom to Chris (September 23, 1988-February 1, 2003) I was totally not prepared for the diagnosis I got that day. Remember, Chris was 4 months old at the time and I was thinking it was a little eye problem. I held him as I heard the grim diagnosis and prognosis, every dream I had for Chris went up in smoke. Over the next few weeks, I just kept telling myself that this is same little boy I brought home from the hospital. Nothing really was different with him. He didn't change that day. I eased into a life with Chris. The bond Chris and I formed was magical and nothing could separate the two of us.

Donna, mom to Joshua, When we found out about Joshua's condition we were absolutely gutted. I was involved in a car accident when I was 28 weeks pregnant and it was confirmed by scans that Josh had suffered massive brain trauma due to a seat belt injury. Josh's head stopped growing at 28 weeks, which was the same time as the accident. I was offered a termination at 34 weeks but I refused as I believed he should be given a chance, he had the strength to hold in there. We wasn't offered any counseling following this devastating information, MENCAP were disgusted and offered us some help in having to deal with being told something this bad. I remember praying to god that he been ok with my scans in my hand sobbing, I'll never forget that moment.

Barb, mom to Kayda (December 2, 1988-June 23, 2000), As Kayda was a foster child I didn’t think this question really pertained to me. But, as I’ve learned, even if your child isn’t yours by birth and you choose them fully knowing (or thinking you know) about their condition there are still adjustments to be made and grief and loss throughout their lives. Sometimes, when Kayda was really sick and having a tough time I’d get mad at her birth mother and the fact that she was a heavy drug user. That always passed though as Kayda got well and I have deep compassion for her birth mother now. The hardest times for me were times like report card time or back to school. I’d grieve over not having the same type of child it seemed like everyone else had. The teacher would be very careful making sure I got her report card to take home, but really no matter what it said it didn’t matter. She wasn’t going to get bad grades and need to be grounded. She was at school for social reasons only. It was the same at back to school time. I remember one year buying what was on the list for all kids of her grade but none of it ever got used. It always seemed to me like the whole world was buying stuff for their kids to go back to school.

Other times that were hard for me were times when we were trying to have Kayda participate as much as possible at school. I remember once when we came to the conclusion that it just wasn’t going to work for her to participate in I think it was gym class as she needed other personal care done at that time. I remember thinking “I don’t want her to have to miss… actually I don’t want her to be disabled period”. It has really helped me in the 8 years I’ve had Internet access to talk to other families whose children are in the same boat as mine. People who also watch their kids not need back to school supplies. It makes a world of difference to know you’re not the only one.

Part of my coping with the feelings about the severity of her disability was to over buy for her. I figured I couldn’t buy what she really needed, a new brain, or near her death, an extended life, but I could make sure that she knew she was loved. So, I bought stuff; hair stuff, clothes, taped books, music, etc.

Kay, mom to Blaine, When he was born, we already knew that something was wrong with his arm. The next day is when the doctor told me over the phone. I was hysterical and couldn't stop crying. The OB was told by a nurse (because Blaine and I were at 2 separate hospitals) and he told them to give me something and all I know is that I went to sleep. It was for the best though. I got to see Blaine when he was 2 days old and he looked perfectly normal so I was in denial. It finally became reality when they took his arm.

Renee, mom to Brennan, 2, NUMB. Indescribably sad. It just felt like a huge loss. I wasn't sure I could handle speaking to others about that very important part of his anatomy missing...also wondering what others would think.

Dee Dee, mom to Elizabeth, 15, As for Grief, we have came close to it and it wasn't nice. I was angry and Hateful. I realize that now but I know it was my way of dealing with it. People understood but they felt helpless as to how they could help us all. We had food for days, friends forever and family who are always going to be there. I can't imagine how we will be if the day ever comes.

Rehan, mom to Tyson (August, 2, 2002, March 27, 2003) When we found out about Tyson it was shock. We thought we had miscarried at five I was still wearing a size 1 pant size. I had a little lump that turned out to have a heart beat. In one week I found out I was pregnant and that my son didn't have a brain. There has been a ton of guilt, even to this day. I was his momma I was supposed to make things okay. I did everything I could but there is still guilt to this day.

Other pages in this section:
Families and Friends
Managing Stress
Reactions of Others
Should we have another child
Links to Information on these topics

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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