Talking to parents who have lost a child isn’t easy. It’s about the hardest thing about working with families of children with special needs. Because many of those children are medically fragile. Many of them will die young, too young.
The Unknowing Friend’s Take
Those of us who have never lost a child share some misconceptions about the longevity of grief:
- We think it’s easier to lose a child living with special needs because parents are prepared for the inevitable.
- We think parents of kids with special needs should get over the loss within a few months and move on.
- We think the other children in a family will fill the empty space left by the child who died.
But parents who have watched a child die say those ideas are wrong.
Joy’s Take
One of those parents is Joy Owens who you may remember from the 4HisHeart-Snuggles from Sam series posted at DifferentDream.com in April. She still struggles with grief and writes about it movingly in a recent post at Sam’s CaringBridge Website.
Scott’s Take
Scott Newport, whose son Evan died in November of 2009 from complications caused by Noonan’s Syndrome, is struggling with the longevity of grief, too. In a recent phone call, he said, “Mother’s Day was brutal. Father’s Day was brutal. This is so hard.” He often writes poetry to process his grief and gave permission to share it here.
Bearing Time
The months creep along like a weightless fog
Treasured memories cling to clay
Numbing days anesthetize want
Fear has no place to hide
Passing clouds no peek of sunshine
Winters ice forgotten thaw
Damp rains dance
Hope has no meaning
Relationships with no language
Words with no interrupter
Blank stares, no title
Vision smeared with black marker
Love stands
Against death
Alone
Wondering
“Will a flashlight help?”
Carolyn’s Take
Carolyn, one of the parents I interviewed for A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children had this to say more than thirty years after her daughter, Beth, died. “People told me to give myself a year to recover. ‘I cam remember getting to the end of one year and saying, ‘What’s this? I don’t feel any different.’ But she says somewhere between two and five years, the physical ache stopped. ‘That’s not really encouraging when you think, “We’ll be doing five years of grieving?” That seems like a really long time.'”
Five Years
Everyone I’ve interviewed about losing a child agrees with Carolyn. It takes five years. Five years.
Can you imagine being a parent and grieving for five years? Can you imagine Joy or Scott’s pain when their best, well-meaning friends advise them to get over it and move on? A few years ago, that’s what I would have said. I had no idea of the longevity of grief.
But now, thanks to people like Joy and Scott and Carolyn, I do know. And I want you to know, too. Because someday, someone you know will lose a child. When that happens, you will already know what the grieving parents won’t comprehend for several years. Their grief will last longer than they expect.
You’ll be there to be their flashlight for however long they need your help.
Five years.
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Dear Leslie,
I am so sorry to hear of your loss. No matter how prepared we are, saying good-bye is harder than we imagine. One section of my new book, Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs, deals with the loss of children. One very good resource about the grieving process is On Grief and Grieving by Elizabeth Kubler-Ross and David Kessler. It explains the stages of grief and the emotions you will feel very well. I just gave a copy to a friend who lost her husband on Christmas Eve, and she keeps mentioning how much it’s helped her.
Stay in touch,
Jolene
Our family just lost our special needs child 2 1/2 weeks ago..he had a degenerative disease, Leighs Syndrome. While we had him 11 years, longer than the 2 or 3 predicted, it was still too soon, and he was so young. I am interested in the grieving process, as I still feel really numb right now. I have two other boys, 17 and 15, and they will be off to college in a couple of years, and I’m getting the empty nest feeling already!
Dear Michelle,
I am so sorry to hear of your great loss. And I agree, a person never completely “gets over” something like that. Depression and sadness descend unexpectedly now and then. To feel depressed on an anniversary like the one you’re anticipating is absolutely normal.
If you haven’t read Elizabeth Kubler-Ross’ book On Grief and Grieving, I highly recommend it. In reading it, you will find reassurance that your emotions and grief cycles are normal.
Once again, I am so sorry about the loss of your sweet daughter.
Jolene
My daughter died in 2003. She was 5. She died of an accidental overdose on her grandmothers medication. Im the one that realized she wasnt breathing, and while the 5 years is pretty accurate, i still have days when i get so depressed and grieve all over again. She would be 13 this March, and i dont know how i will get through that day. im scheduled to work, which i never do that day and im hoping i can find someone to work for me.
Dear Diane,
Thank you for the correction. You’re right. The grief doesn’t lessen, just its intensity.
My father died in 1997 after suffering 38 years with multiple sclerosis. I still grieve (and sometimes cry) for his death and for the loss of the man he was before the disease changed him and his life. That’s not the same as grieving for a child. Children should outlive their parents, not the other way around. So I can’t imagine how hard it is for you, though in my own way, I live with daily grief, too.
Blessings and prayers to you,
Jolene
Dear Jolene,
I didn’t say grief lessens, I did say the ‘intensity’ lessens. I think whats important is to determine what grief is.
Grief for me is always there…..the crying every day part is not everyday, but as the dictionary defines it; “keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret”
All of those descriptive words are part of my day to day life….grief. I can’t ever imagine a day going by where I don’t grieve for Savannah. Also my mom and sister who passed away the two years before her.
I think its more hopeful to say to someone, don’t put a time limit on your sadness and in time…who knows how long…the sadness that in the beginning overwhelms you will be a little less…its not to say there are not times now, after six years that I DON’T sit and sob about my losses, because I do.
Again, just my opinion, so I disagree about the five years…IF you are defining grief to be that “recovering from the loss of a child is a five year process” as you stated above. I will never recover from Savannah’s death…I’ve just learned to live with it.
Thanks for your compassion.
Diana Doyle
Dear Diana,
First, let me say how sorry I am to hear of your daughter’s death in 2004. Having never lost a child of my own, I can’t imagine how difficult it must be.
You’re right. Each person’s grief journey proceeds at its own pace, and I didn’t mean to give the impression that everything is better after 5 years. It is never all better. Grief for people we love becomes part of life, but as you said, the intensity lessens after five years.
How wonderful that you don’t cry every day any more, even though you miss Savannah dearly. She will always be a part of your family!
Blessings,
Jolene
Dear Jolene,
Thank you for the above articles on grief however I have to disagree with the thought that it takes five years….I lost our daughter in 2004 and the grief is still present in abundance…as it is with alot of other parents I’ve connected with, no matter what the length of time since your childs death.
I think the intensity of the grief lessens over time but it is always present, like a shadow and can appear anytime. I know a lady who lost her daughter 30 years ago and she still grieves for her lost child.
I think it is wrong to tell anyone it takes five years….to put a limit on someones grief, to say that they SHOULD be feeling better in FIVE years can be distressing to a parent, thinking that they have a certain time frame to deal with their loss and then they will feel better.
Everyone has their own journey and feelings towards grief and I think it’s more helpful to let people know that they shouldn’t put a time limit on themselves.
I don’t cry everyday anymore, however I do yearn and greive for Savannah who is no longer part of our family.
Just my opinion however.
Thanks
Diana Doyle
http://sunshineinabluecup.blogspot.com/
Dear Loni,
Thank you for confirming what other parents have experienced. Recovering from the loss of a child is a five year process. The good news is that families do recover. They are changed. As you said, they adjust to a “new normal” which contains joy and pain. The bad news is that five years seems like an eternity to parents when the loss is new and raw. To imagine living with such pain for five years is often the last thing they want or need to hear. Do you have any suggestions about how to encourage parents early in the grief process?
Oh Linda,
The way your family lost John is heartbreaking. The string of “firsts” must be unbearable at times. Do you ever get through the days just by putting one foot in front of another (to quote Tom Hanks in Sleepless in Seattle)? Your other boys don’t make up for his loss, but they do provide a reason to put one foot in front of another. Sometimes, that’s the best a person can do.
In memory of John,
Jolene
Dear Loretta,
I am so sorry to hear of the loss of your son, Brian. What a difficult time this must be for you. From what others have said, your feelings are normal. Sometimes, you’ll sense you’ve made progress, and other times unexpected grief will slam you as if the loss just occurred. I think the way to measure your progress is how much time occurs between your times of deep grief. Hopefully, those episodes will come less frequently and eventually be less severe.
Thanks for your comment,
Jolene
Every time I read something that expresses what I feel instead of what someone has told me…I feel more normal about my grief. Sept. 8, 2010 will be 2 years since I lost my Brian at age 21 and sometimes I feel I’ve made progess and sometimes I feel that I have not made much progress of all! My relief and peace of any kind that comes from this lose come only throught the grace of God! For that I am grateful!
My son John died due to a car accident. He was 17 yrs old. Losing a child in any way is a horror. It is the worst nightmare a parent should have to go through. Not a day goes by where I don’t wish John was still alive. Yes, I have 3 other children. However, no one can ever replace the child that was lost. John will be gone 3 yrs Aug. 7. He is missed very much and I can’t wait to get to heaven to see him again. My youngest is a special needs child. However, he has ADHD and won’t die because of this condition. He is just now starting to talk about John and his death. It still feels surreal as my second child, Michael, goes to college next month. He wasn’t suppose to be our first one to go to college, John was. Michael was also the first one of our children to graduate from High school. The accident John and 2 friends died in happen 8 days before John was to start his senior year in high school. There are way too many “firsts” that we have gone through and continue to go through.
It’s very interesting to see someone else share that it took five years. Our 16 year old son died five years ago this past December 11 (2004). I’d have to say this past Christmas was our first good one. We finally put the Christmas tree back up. There was finally rejoicing and laughter again, around this time of year. The previous year our 13 year old daughter had emergency open heart surgery on 12/17 – and I thought I may lose another one close to Christmas, so we had a lot to be thankful for. We will never “get over” the pain of our missing children (16 year old son & stillborn daughter), but we are getting through it, and finding our new normal.
Thank you for sharing about the “five years”. Makes me seem a little more “normal” getting through this.
Loni
http://matthewsstory.com/