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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 |
What If? Part 4 The following is from a booklet given
to me by the Hospice where Kayda died. The death of a child presents families with certain painful tasks. One off the hardest things is deciding what to do with the child’s belongings and the child’s room. Do not feel compelled to rush into this task. The child’s belongings and room are filled with memories for you and your surviving children. What you choose to do will be determined by what these belongings and their memories mean to you. It may take a very long time before you decide to do anything at all. Sharing memories about particular belongings may be a way to begin. Perhaps then you can decide together what seems most appropriate for your family and your situation. Some families keep the clothes and toys if another child can use them or if they hold some special meaning. In one family, a 16 year-old girl kept some of her little sister’s dresses for her own child to wear someday. In families where there are no surviving children or the children are of the opposite sex, clothes are often given to someone else who can wear them. You may find that giving clothes and toys to children who really need them, or to a particular child you know, makes the parting easier. Some parents store the items until they are ready to part with them. You will also have to decide what to do with mementos and special treasures such as pictures, jewelry, handicrafts or awards. Parents can help surviving children by appreciating that mementos such as photographs convey subtle messages about the importance of every child in the family. For example, where the photo of the deceased child is one of several displayed on the walls or furniture, the message is: “These are all our children, all of whom are important to us.” If the photo of the deceased child is the only one in sight, the message becomes: “This is our child who is special because she is not here anymore.” Like the belongings, the child’s room has special meaning and decisions about its future use do not come without anguish. Nearly all families say it is difficult to stop thinking of and referring to the room as the child’s room. Families who eventually are able to change the appearance and use of the room have an easier time referring to the room by its new name and integrating it into the changed pattern of family life. If your child died after a long-term illness, contact with professional people who became part of your life over many months or years usually end. You may find yourself missing their support. Bereavement support from other families, groups or professionals can help bridge the gap. Inevitably, you will receive letters, both official and personal, from people who are unaware that your child has died. This often causes renewed sadness or anger. Over the years, you will be asked how many children you have and you will have to list your children on various documents. It is difficult to know how to answer; your response may vary depending upon the situation. Finding Your Way, Grieving The Death Of Your Child, Joanne Chekryn Reimer, RN, MN., Betty Davies, RN, PhD. Canuck Place Children’s Hospice, pp 33-35 Difficult Tasks Personal Experiences “Minnie”, mom to Rebekah, August 8, 2003-December 3, 2003) I left things out for about a month. When I did put things away my daughter (who was only two and a half) had a difficult time. I brought the car seat back out and the toys that were Rebekah's. Anna played with the car seat till just recently and I don't think that I will try to put the toys way again. They mean so much to Anna. I also had the blanket that I made for Rebekah buried with her. That was very good for me because although I know in my mind that she is not cold my heart needed to feel like she was warm and comfortable Hollie, mom to Matthew (June 14, 1999-April 9, 2004) I put most his stuff in his room. Washed the dirty clothes and hung them up or put them where they went and cleaned the room I can’t bring my self to change it and I don’t think I'll be able to for a long time. Seeing it just sitting how it is hurts but changing it would hurt a lot more. A few people asked if they could take one of his stuffed animals to have to remember him and I let them. But the only things I got rid of was his feeding pump and things like that. But anything else I can’t at the time. Erica, mom to Robbie (November 18,1995-October 27, 2003) Because Robbie's room was in the living room, I had to get rid of the bed right away. I gave away most of his stuff too soon, because then I regretted it. It did make me happy that other kids were benefiting from his things though. One thing that I would say to others is to try to remember to put some clothes that the child had just worn in a ziploc bag,so that at least for a little while they would still have the smell on them. I wish someone had told me to do that. Sandy, mom to Jonathan (age 18 months) and to several who have gone Home to Heaven: When my children died I took their clothes and had quilts made from them. Because I am a foster parent I had to get their rooms ready for someone else. That was difficult because I really felt like I was removing them from my home forever. I realized that was not the case. I will always carry those children in my heart and no one can take that away from me. I keep a lot of pictures of them around and that helps also. Rehan, mom to Tyson (August 2, 2002-March 27, 2003)Tyson's room was his room/computer room. After he passed away we took down the crib and kept that here. His clothes that he could never fit into went to the little boys in the neighborhood. I kept a few of my favorite outfits of his and they are in a box with his lock of hair and his Christmas tree. He spent his only Christmas in the hospital so we got him a fiber optic tree so he could see the lights. His pre-mature clothes I plan on donating them to the local NICU. There are tons pictures of him everywhere and we talk about him a lot. I do not want my daughter to forget him. Barb, mom to Kayda (December 2, 1988-June 23, 2000): When Kayda died we’d had home maker hours that were still left so a home maker came in for a couple of days to help out as we got ready for the memorial service. It wasn’t someone we’d had before. She arrived and said she’d brought boxes so she could take Kayda’s clothes to the thrift store. “NO WAY!!!!” I said. Many of her clothes had been in the laundry when we left so I had the homemaker fold them and put them away in her dresser. Due to difficulties at home, I’d slept on the couch in the living room for a year or so when Kayda died, so I just moved into her room right away. I left her blankets on the bed, her hair things on her dresser, etc. Another child needed a back up wheelchair a few months later so I gave them the first wheelchair Kayda had had. The person wanted to take her other one too just to get it out of the way but I said no. I couldn’t face giving everything away at once. About 6 months after she died, we had to move. It was so hard to take her clothes out of her dresser and put them in boxes. Another difficult task was taking her formula out of the cupboard it had just been left in.
Difficult TimesSpecial times, such as your child’s birthday and the anniversary of his or her death, can be especially hard. Each member of the family will experience them differently. Often the anticipation and dread of these days is much worse than the day itself. The weeks before the anniversary can be particularly painful as memories of your child and the events surrounding his or her death become more visit. Comments from well-meaning friends that you “should get away” or “keep busy sol that you don’t think about it” may feel extremely hurtful. Proper planning as to what you might like to do in remembrance as well as what your limits are may help to ease the tension. Some parents find it helps to remember their child in some concrete way. Some family place flowers or a candle in front of the child’s photograph. Some families continue to celebrate a child’s birthday. For example, one family buys a toy each year for a child of the same age their child would have been that day. Another family goes on an annual outing to a special park the child loved. Holiday times also can be
exceptionally tough because of the memories associated with them. Grief can make
holiday traditions that have been special massive hurdles. You wonder how you
can prepare and enter the spirit of the holiday when you feel constantly on the
verge of tears. You may need to consider what you can handle comfortably and
where you need to make changes. One mother described her goal for a holiday as
making it as joyful as possible possible for the children and as emotionally
bearable as possible for herself. She wanted to experience the joy of picking
out a special present for her child, so she included him on her family’s holiday
shopping list, then gave the girt to a child who would enjoy it. Another family
decided to make drastic changes to a holiday tradition and, instead of staying home, went on a Caribbean
vacation. Finding Your Way, Grieving The Death Of Your Child, Joanne Chekryn Reimer, RN, MN., Betty Davies, RN, PhD. Canuck Place Children’s Hospice pp 37-38
Difficult Days, Our Experiences April, mom to Chris (September 23, 1988-February 1, 2003) Getting through the first year without Chris was very difficult. For his first Birthday in Heaven, I wrote him a Birthday letter. For the first "anniversary", I also wrote him a letter. Couldn't get enough energy to do much else. But, for his second Birthday in Heaven, I am getting him a cake with his picture on it. On his second Angel "anniversary", I hope to visit the Church where a tree was planted in his memory and release some balloons. We include Chris in all the holidays. Made him his own Easter egg and bought him a couple Christmas gifts. My boyfriend always makes sure I get something from Chris on every holiday. Barb, mom to Kayda (December 2, 1988-June 23, 2000) As it’s been almost 4 years since Kayda died there have been quite a few difficult days and anniversaries to face. Each has been different. The first Christmas was nothing short of brutal. We moved out of “Kayda’s” house on the 15th, it was exactly 6 months from her death, a child I’d done respite for had just committed suicide, we had no money, and my marriage was a mess. All that I did was buy a lighted angel, which went in the front window along with my angel bear collection. We had no tree. There were very few presents, which we just sat at the table and opened. We went to the pastors’ home for Christmas. Basically it was a matter of just surviving the day. By the 2nd Christmas after Kayda’s death, I was on my own (a good move) and I had Trevor. So, it was easier to do the Christmas stuff. On our tree though are a number of ornaments with Kayda’s picture on them and many angels in memory of her. And, the lighted angel is always the first decoration to go up. Each year our Church participates in Operation Christmas Child, which sends shoeboxes of gifts to children around the world. I always send off a box for a girl in memory of Kayda. This year I sent 3 including one in memory of the child I lost in 1991 as well as one from Trevor as well. I also in the last few months have taken on a foster child through World Vision in memory of Kayda. These steps have helped me with the difficult times; because of Kayda someone else is being helped. On the anniversaries of her death I usually just have a quiet day at home. Friends who knew Kayda have also come over. I usually watch the video done of her during her last few days at Canuck Place and the video of her Memorial Service. I also get out her memory books and go through them. The last anniversary, the 3rd, was the hardest on me. I started being upset and depressed months before the date. As I approach the 4th anniversary I’m hoping it wont’ be as difficult. For her birthdays, I don’t do much. I usually buy a new angel bear in memory of Kayda though. This past year I had hand surgery on her birthday, which took my mind off of missing her. Hollie, mom to Matthew, June, 14, 1999-April9 2004) It hasn’t been long since Matthew left me but his birthday is June 14th so we are going to have a party for his birthday and get flowers for him and on the day of death we are going to get flowers and do something nice a party or something we are not sure yet. Jessica, mom to Raistlin, (September 6, 1997-May 3, 2001) We usually take flowers and/or balloons to Raistlin's grave on his birthday and anniversary of his death. I have to admit, we don't do that much at holidays. I take "seasonal" flowers--fake flowers that kind of match the theme of the season--to his grave, so he always has flowers. But we're usually not in the area at Christmas, 4th of July, etc. Instead I usually pray for him a little bit more on holidays (and birthday/anniversaries). I wear a necklace my mom bought me the day after he died. It's a mother's necklace--I used to wear it all the time, but now I just wear it on special days. I also wear the bracelet that was a fundraiser for us. So I do some personal things on the special days too
Carrying On Grieving is a time of searching…a time when you struggle to make sense of it all. Some parents have said that when their child died, a part of them died too. Thus finding out who ou are in this new and daunting world is part of your personal journey. And, as a changed person, you may find that relationships with your spouse, your children and your friends change. Carrying on seems almost impossible in the early days. The only way to cope is to take one day at a time. Sometimes, parents expect that the second year will be better than the first because they have lived through many hurdles…the first birthday without the child, the first anniversary of the death. However, the second year has sorrows of it’s own. Things do get better, bur it takes a long time to adjust to the loss of this very precious person. Your love for your child will never cease to exist, and it is not wrong to imagine what your child might have become or achieved. Memories can also soothe and comfort. Clothing, photographs and small treasures can all trigger memories. Or you may simply recall the string of events, words and deeds that made up your child’s life. Whatever your memories, they are yours to enjoy in solitude or to share aloud with others if you choose. Memories become cherished possessions that ensure your child is always a part of you. For some people, getting used to the emptiness takes a very long time. The death of your child is never truly forgotten. Families say some part of them is desperately sad forever, and that learning to live with their grief is a life-long process. However, most parents cherish the memories, learn to live with their sorrow and, in time, find a way to carry on and move forward. The love they shared with their child is an integral part of who they are. It remains with them forever as they continue their own journey through life. Finding
Your Way, Grieving The Death Of Your Child,
Joanne Chekryn Reimer, RN, MN.,
Betty Davies, RN, PhD. Canuck Place Children’s Hospice, pp 41-42
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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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