Memorial website in the memory of your loved one

Kayda, a unique name for a unique girl. A girl, who never said a word, never took a step, but touched many hearts and brought hope to families where there had only been despair and hopelessness. Let me tell you about Kayda and her ministry.

Shortly after Kayda’s birth to a teenage mother, it became apparent that something was wrong so a CAT scan was done. The result was devastating; she had no brain at all, her skull was full of fluid and if a flashlight was put up against her head the light would come out the other side. The diagnosis was hydranencephaly and her teenage mother was told she would die very soon. She was relinquished for adoption. It also soon became apparent that she was showing signs of withdrawal from the drugs she’d been exposed to before birth. She was transferred to a children’s hospital that had a neonatal abstinence unit. The hospital also provided long-term care for children with severe disabilities. So, Kayda had people around her, but was one of many. When she was 9 months old she went to live with a family. I have little knowledge of that time in her life, but have heard things from people who knew her during that time, that tell me she was a very unhappy little girl. She had many health problems and was frequently near death. She responded with smiles sometimes to hearing music or voices but didn’t move at all or really show any awareness of any objects.

When she was 4 ½ her life, and ours changed drastically. My husband and I were unable to have children of our own and had been waiting for a child through a program called the Associate Family program (similar to fostering but different-it no longer exists) for over 2 years. When we first met Kayda she was at the hospital mentioned above for respite. She was sitting in a long line of children sitting in wheelchairs in the hall, with her mouth open and she was breathing very noisily. I started to cry when I saw her as I was overwhelmed with finally having the child we’d longed for for so long. I was overwhelmed at first by how severely challenged she was. I was told that her diagnosis was hydranencephaly but had never heard of it and hadn’t a clue what it meant other than she wasn’t supposed to still be alive.

Over the next 2 months we got to know Kayda and her care better and made plans for her to join our family. We had some major hassles with the foster mom who was very angry that Kayda was going to a new home. She knew that they’d been looking for a long term placement for Kayda where she’d be the only child. Four days after Kayda came home, she got very sick with her 6th aspiration pneumonia in the last 8 months. We were told she was dying-she also had a Do Not Resuscitate order (something no one knew about. she wouldn’t have been accepted in the Associate Family program had the people in charge known). so our hands were tied.

Well of course, she didn’t die then but her health was very poor. She hadn’t had any adjustments made to medications in several years. We were told she had major allergies but it wasn’t worth taking the time to check to make sure. We were told that about many things over the years with Kayda. She had been more or less written off. One of her biggest struggles was her breathing. She was always congested and struggled for every breath. She’d been getting suctioned improperly and dangerously numerous times every day. Several times in the first month we had her, her breathing got really bad and I was told by various people who were in our lives to take her to the ER once again. But, each time, by the time the Dr saw her her breathing was clear and she was fine. I started trying to figure that out and realized that her breathing cleared up when she was lying down on her side. I started trying that at home, and sure enough as long as she was lying down on her side she was fine. I kept her in that position most of the time for the next year and a half. I had to fight with all kinds of people that wanted to get their 2 cents in about it not being safe to feed a child who might reflux lying down. I consulted with the people I trusted and just kept on. Within a couple of months her breathing was clear most of the time.

When we first got her, she didn’t move at all. I’d put her on her side with a teddy bear under her arm and it would be like that no matter how long I left her. After about 2 months I noticed that the bear would keep getting tossed onto the floor. Then, one day I laid her on her sidelyer but didn’t strap her down-there had NEVER been any need for it-I turned my back for a fraction of a second and she had rolled onto the floor. And, although I’d been told she felt no pain, she started to cry just as any other child would do. Wow! That just happened to be Christmas Eve. For Christmas and her birthday which was at the beginning of December I’d hunted far and wide to find toys that could be operated by accident. I’d found 2, both Disney baby toys. I also bought her a Fisher Price “Dinoroar”. I figured that it would be good to rest her arm on when she was lying down and maybe one day she’d realize that it made a noise when squeezed. Never could I have imagined the miracle that was about to take place because of that pink Dinoroar named Bruce.

One day shortly after Christmas I put Bruce up to her mouth-I don’t know why, I’d never done it before. She felt it next to her face, turned her head away, and then back and started to chew his head. Within 24 hours she had learned how to pull him to her to chew on and how to push him away. She started chewing on anything that came near her mouth. I noticed her hands seeming to explore textures and reach out if someone was near her. I still bought the “no brain, vegetable” garbage I’d been told so I thought I was imagining things. I should have known better shouldn’t I? Finally everyone had to admit that Kayda was clearly exploring her environment. Within weeks, her toys that were operated by accident, were no longer challenging enough for her and we were kept busy finding new toys for her. She especially loved her Sesame Street play gym and several busy boxes. Within a couple of months she stopped drooling and had taught herself to swallow. She learned to eat orally and did so without aspirating for over 3 years.

No, Kayda didn’t suddenly get up and walk and talk as she got older. She remained very severely handicapped but she blossomed and shone and everywhere she went, people fell in love with her. People stopped dwelling on her diagnosis and just accepted her. School was a special triumph for Kayda. I kept her out of Kindergarten that first year we had her as her health was too fragile. Her grade 1 year was a disaster to my mind-the staff looked only at her diagnosis and felt she was a waste of time. She was in a room by herself for over 2 hours of every day as she was supposed to have a behaviour problem (her form of communication was loud). So, our family moved. She attended her next school for over 4 years. The whole school loved her and with each new accomplishment everyone exulted with her. I’d walk down the hall and people would come running to tell me something new that Kayda had done. One of the neatest things she learned to do was to activate talking switches called Big Macks.

Of course, given her disability, life wasn’t smooth for Kayda. She had several hip surgeries and many respiratory illnesses. She started using Oxygen at night when she was 9 and full time when she was 10. She stopped enjoying eating so went back to being fed only by tube. She always missed more school than she attended. Even with increasing health problems she still participated as fully as possible in life. We began to attend a church near our home and she was quickly accepted and loved there. And once again, every time Kayda responded to someone, everyone rejoiced.

She had a very severe pneumonia when she was 10 and she nearly died. At the same time she started puberty and screamed constantly for over 3 months. After ruling out everything treatable we started using a mild sedative and she went back to her old self-more or less. But, her tiny seizures started increasing and she was soon having up to 400 small staring spell seizures a day. Shortly after she turned 11 she started getting a respiratory infection every time she was taken out. She also didn't seem to enjoy school any more so I made the decision to keep her home-for awhile I told myself.

In February2000 she had one more pneumonia, this time caused by aspirating on blood from a nose bleed the nerve and asked her pediatrician whom we loved dearly, if she was starting to go downhill. He sadly, said yes. At that time, though her main problem was seizures and we thought that she probably had at least a year or so left. She died less than 3 months later near the end of June. She started sleeping most of the time. Right around this time she got a lovely new chair called a comfy chair. At first I blamed the chair for making Kayda sleep. Her body had just plain shut down and was tired. We were so fortunate in having the only children’s hospice in North America in our area. About a month before she died, she stopped tolerating formula, even though we’d switched her to one that was already partly digested. She did ok on pedialyte.

We’d had discussions with the hospice over the months as to if she qualified for end of life care. They didn’t think she did but arranged for her to come in for an evaluation for 5 days the first week of June. The dr there looked at her when I brought her in, and said right away she was to be switched to their end of life program which meant she had unlimited access to the facility (previously she went there for respite for a maximum of 10 days every 6 months). I was shocked. I had expected to be told that I was over reacting and that she was fine. She did well with a new medication while we were there and tolerated her formula really well-until the day we went home. Six days later it became apparent that she couldn’t even tolerate pedialyte and I had to call the hospice and ask to bring her in. She lasted 8 days after we arrived, even though she could take no liquid at all. Everything we put in just sat there including medications.

The people there were wonderful. We moved in (including our dog) and had constant support and care. With every new symptom Kayda developed they worked hard to keep her comfortable. I just can’t say enough about how those people helped us. Although I knew when we went to CP that last time that this was "it" actual acceptance deep down took a long time and much repetition of the process of acceptance by the nurses. Finally around noon on the day she died I gave in and seemed to truly accept that it was time to let her go Home. Instead of the quiet soothing music we'd kept playing in her room I decided that it was time to sing Kayda Home and put on a cd of children singing praise songs which she had always loved. Later her nurse for that day said that she could tell that I'd changed the minute she walked back into Kayda's room.

Several times during the time she was there, her breathing slowed and we thought she was going. One time, was at 3 pm on June 23. So we put her on the couch in between my husband and myself. My husband wasn’t ready for her to go though, and he kept whispering to her “breathe Kayda breathe”. In the other ear I was saying “it’s ok to go now Kayda, you can go Home to Heaven”. She kept breathing and did better for awhile. I actually dozed with my head resting on hers. That day she’d been uncomfortable being picked up so I’d just left her most of the time. Around 11, I all of a sudden decided I needed to pick her up. I put on a tape of music that I always played when I needed comforting and picked her up and held her in her very favourite position-straddling me with her head on my shoulder. Although I didn’t realize it for probably about a half hour, she died shortly after I picked her up. My beautiful Ray of Sunshine flew home to Heaven knowing she was loved. Straight from my arms to the arms of Jesus.

When Kayda first went to the hospice for the last time, I felt there would be no reason for me to go on living after she died. But, God reminded me of the book I’d started about her condition. There was my reason to go on. The book grew and grew and it has much more about Kayda than I’d originally planned. It has become her legacy and will bring hope to many families who are still being told by Drs that their child with Hydranencephaly would be better off not living.

So, although she never spoke a word, she has changed the life of many children and brought hope to their families.

The above appeared in the December 2000 edition of Broken Hearts, Living Hope newsletter. This is a publication for families who have had children die.

As I started my journey without Kayda in my life, a CD called Dancing with Angels by John Mandeville & Steve Stiler became very special to me. The title song seemed to say it all:

It's just so hard to believe
All I have to hold is your memory
From this side of the clouds
All I see is grief
But on the other side I know you're free
and you're

Dancing, Dancing with Angels, Dancing

Somewhere just out of my reach
You're keeping heavenly company
When I'm feeling lonely
It's for myself I cry
'Cause there aren't any tears in paradise
Where you're;

Dancing, Dancing with Angels, Dancing

I can almost hear your laughter
See the fullness of your joy
Knowing that you're present with the Lord
And though today I miss you
I know the day will come
When every believer
Will behold the Son
And we'll be:

Dancing, Dancing with Angels, Dancing

December 2008: It's been 8 1/2 years since Kayda died. I still miss her every day. Her birthday was Dec. 2. She would have been 20. I kept telling myself that I shouldn't be bothered by her not being here any more but my heart didn't agree. I thought about how I was going to be grieving for her for the rest of my life. I didn't realize that just a few days later, I'd once more be in the acute phase of grieving for a child. Kayda's brother Trevor went home to Heaven on Dec. 15, 2008. You can read his story at: I bet she and Trevor are having a blast getting to know each other.

Tributes and Condolences
I just cant   / Dianne Lindsey (none)
i AM WEEPING...bLESS YOU AND YOUR HUSBAND Superb parents superb human beings.
Kayda  / Jaima Collins (Reader)
Ever since I was a little girl I knew my first daughter would be named Kayda. I thought I was the only person in the world who thought of this name. Tonight I decided to find out and after typing "Kayda" into a search engine found this site. I am so ...  Continue >>
Miss Kayda   / Jeanene Headlee (friend of your mommy )
Dearest Kayda,  If you only knew how important you were on earth and what a difference you continue to make to SO many families.  Your mommy loved you so much than when you went to heaven she had to tell others all about hydranenceph...  Continue >>
What a precious child  / Brenda Lewis
I can see the smile and her lit up eyes, she is beautiful. I can tell by the pictures and your story that she was a very very loved child, and by the looks on her face, she knew it!!!  She still knows you love her, and she knows the love of...  Continue >>
My Gift  / Barb Aleman (mom)
God loaned me a gift A precious gift Some peole look at my gift And say, "how sad". They only see what she isn't I look at my gift And see her gorgeous smile And rejoice in who she is. Some Doctors look at my gift And say, "she really ...  Continue >>
Kayda's Eulogy / Barb Aleman (her mom)    Read >>
More tributes and condolences...
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Her legacy
Kayda's Legacy: The Book: Caring For Your Child With Hydranencephaly  
After Kayda died I thought there was no reason for me to go on. Then I remembered the book I'd wanted to do with information about caring for a child with Hydranencephaly. There was my reason to keep going. I worked on it non stop for the first 4 months after her death. It ended up being 560 pages long. We decided to just have it printed privately as a lot of the information was being used on the condition it not be used for profit. We sold all 175 copies that were printed. By 2002 It was clear that the book needed to be revised. It was decided by the group that it should be done on cd in pdf format so that there wouldn't be the huge printing costs of the first book. That gave us a lot more room so the new book has a ton of pictures of the children and is much more complete than the first (or it will be). There have been many setbacks and at this time (Feb. 2005) it's still a couple of months from completion. But, when it's done, it will be very informative with a ton of information to help families as they care for their children. It will also contain over 60 stories of children with Hydranencephaly. This book would never have been done without Kayda. Sure, eventually someone else would have done a book but it just wouldn't have been the same. Her personality and that of all our other kids shine through in the book.
Kayda's Legacy: The Hydranencephaly Mailing list & International Hydranencephaly Support Group  
When the website first went online I'd only known of a few families of children with this condition. From talking to people we came to believe that there weren't more than 30 children living with this condition all around the world.

However after the website had been online for a few months more and more people started contacting me. I still thought there weren't enough people for it to be worth starting a mailing list. But, in mid Sept. the 8 families we were in touch with started communicating back and forth. We heard about onelist (now yahoo groups) and decided to start a mailing list. We figured 20 members would likely be as high as we'd go. Well, we were wrong!!!!

6 1/2 years later there are over 150 members on the email mailing list and we've been in contact with at least 150 more families.

Eventually the list would have been started by someone else, but Kayda was who got it going when it did. Because of her many families now know that they're not alone. They have an outlet for their fears, their questions and their dreams.
Kayda's Legacy: The Rays of Sunshine Website  
This is the first website ever to offer hope, support and information on the condition called Hydranencephaly. It's at: It went online in April 1998. At the time I'd only known of about 12 families of children with this condition and had only had direct contact with 4 or 5 families. The original site was very small and very amateur. 7 years later the site is huge and hundreds of people access the site every day. There are currently stories of over 60 children on the site. This site would never have been started without Kayda to inspire me.
Kayda's Legacy: A Poem  
Kayda's Legacy A child was born A small child A beautiful child A different child A child without hope? NO!!!!! A child who smiled A child who loved A child who listened A child who shone A child whose legacy brings hope to many. By Barb Aleman
Kayda's Legacy: The Hydranencephaly Support Group  
Kayda's Legacy includes the International Hydranencephaly Support group It's the first support group for families of children with Hydranencephaly
Kayda's Photo Album
Christmas Eve 1999 our best picture of Kayda
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