Parent-to-Parent Program

What is it?

When a child dies, the grief that follows can be intense and devastating. As much as family and friends want to understand, it may be difficult for them to grasp the enormity of this life-changing event. It would seem that it might be helpful for parents to talk to other bereaved parents who are further along in their grief process in order to learn that their reactions are normal and expected. This connection can offer hope in the midst of the despair that is often present after the death of a child.

The Parent-to-Parent program is designed to match parent volunteers with newly bereaved parents to offer them emotional support. Matches are made based on the following criteria: age of child at death, circumstances of child’s death, surviving siblings, decision to withdraw life support (if applicable) family/cultural issues, etc. When parents request a match they can indicate which criteria are most important to them. Once the match is made, the expectation is that the volunteer will be in contact with the parent for a minimum of one year. The volunteer and the parent agree upon the amount of contact that the parent has with his or her volunteer.

To date (December 2005) the Parent-to-Parent program has trained 59 volunteers and 85 matches have been made. Types of contact between parents and volunteers include:

Parent-to-Parent volunteers are specially trained and must make a two-year commitment to the program. Profiles of some Parent-to-Parent volunteers can be found below.

If you are interested in receiving support from a Parent-to-Parent volunteer print a request form and mail it to Children’s at the address on the form.

What parents have said
about the Parent-To-Parent program

Parents who have received support from Parent-to-Parent volunteers have this to say about what they found to be helpful about the program:

Being able to “discuss a wide range of issues associated with our grief”

The “trust and friendship,” the volunteer was the “one person who hasn’t judged my feelings.” We “helped each other heal in ways someone who has never lost a child couldn’t.”

“She affirmed all my feelings and reactions as normal and shared her own when appropriate, which helped me identify my feelings and feel that I was normal and not alone.”

“Nice to have someone to connect with and feel not so alone.”

“My husband and I grieved very differently. I wanted to talk; he didn’t. There was a lot of tension building up. Talking with my volunteer gave me an outlet, which helped to ease the tension between my husband and myself.”

“I needed someone outside my home to talk to. In this new life where ‘normal’ has been re-defined, it was comforting to talk to someone who was/is also a grieving parent. How much easier it would have been to shut myself out of this world (isolate myself). For me I needed the human contact.”

“My volunteer and I have remarkable parallels in terms of family composition, including the brief lives of our 3^rd baby. Because of her experience in balancing grief with raising 2 other children, she was able to lend wisdom and perspective.”

Meet some of the
Parent-to-Parent volunteers

Karen

Name of child who died: Christian Olaf

Circumstances of death: Christian was diagnosed with ALL (leukemia) at age 5. His survival chances were 80-90%. Every April he relapsed. After the 3^rd relapse, he underwent a bone marrow transplant at the U of M with his brother as the donor. Six weeks post transplant he came home and was slowly getting his strength back, only to relapse again on his 8 ¾ birthday, September 14. He was overtaken by his cancer very quickly, 5 days later, and died at home in our arms.

Siblings: Anders was only 3 at diagnosis and 7 when Christian died. He is now13, as of August 2005.

Hobbies/Interests: Biking, swimming, music, church activities, theater, travel, XC-skiing, anything fun to do as a family.

Something I would like you to know about me is…. I don’t believe I’ll ever completely recover form my loss. I was a different person before this happened and I’m just doing the best I can to live the way my son would want me to. Even after six years without him I still think about him hourly.

I became a Parent-to Parent volunteer because….I felt so fortunate to share my grief with a good friend whose son also died of cancer, immediately after Christian’s death. I feel strong enough to let someone else lean on me and don’t want anyone to go through grieving alone. The more support, the better, and the most helpful support comes from those in similar shoes.

My words of encouragement to you are…. Don’t fight or resist your grief. Face it, even honor it, and you’ll find ways to help loved ones remember your precious child. Think of that as your new job. Also, try to get through only one hour at a time if that’s all you can do. And most importantly, don’t try to meet other people’s expectations. Just taking care of yourself is so burdensome that it may take all your energy for a while.

Tom and Carol

Name of child who died: Christina (Chrissy) Ann

Circumstances of death: Diagnosis: AML. Treatment bone marrow transplant was a success; side effect left her with untreatable lung disease, Bronchitis Oblitarans

Siblings: Grown son, Shawn

Hobbies/Interests: Crafts, playing cards, fishing, traveling, reading, going out to eat, snowmobiling, shopping, volunteer work, movies.

Something I would like you to know about me is…. Good listener, honest about my feelings and always willing to help others.

I became a Parent-to Parent volunteer because…There are times when you like to talk to someone who has gone through the death of a child. You need someone to listen to your feelings, someone who understands.

My words of encouragement to you are….As you work through your grief and discover the different levels of grief, the levels come and go. It’s like the waves of the ocean. It’s a lifetime of waves but knowing your child is alive in your heart always. And, you never forget the joy of loving a child.

Rose

Name of child who died: Olivia Rose

Circumstances of death: Olivia had multiple issues stemming from early malformation of her brain. She was born 6 ½ weeks early by emergency c-section and lived only 28 days. We were with her everyday but never got her home.

Siblings: Joey (4). He was 2 ½ at the time of Olivia’s death.

Hobbies/Interests: Running, reading, art, movies, laughing

Something I would like you to know about me is…. I am very protective of the people I love.

I became a Parent-to Parent volunteer because….I thought, if something good could come of my experience and I could offer understanding and hope to another family, it was the right thing to do. And, selfishly, I hope Olivia would like it.

My words of encouragement to you are….While the grief seems insurmountable in the beginning, it will lessen with time and you will feel joy again.

Sam

Name of child who died: Tristan

Circumstances of death: Atypical Territoid Rhaddoid (Brain tumor with metastasis to spine). Battled for 7 plus months. Chemo, radiation. 9 times in OR, trach/vent, then just a trach. Died at home on Hospice.

Siblings: Mikayla (Twin sister ) 3 ¾ years; Jerica 1 ⅓ years

Hobbies/Interests: Spend time with my family, watch/play sports.

Something I would like you to know about me is….Nursing student and currently work at Children’s Minneapolis PICU.

I became a Parent-to Parent volunteer because…Give back/help others

My words of encouragement to you are…It never goes away, but it is easier to deal with the pain – time is the key. Try to reflect on the good times rather than concentrate on bad.

Ann

Name of child who died: Marcus

Circumstances of death: Marcus was diagnosed with Trisomy 13 during our 6^th month ultrasound. The Trisomy 13 resulted in severe cardiac abnormalities. We were not sure if he would be stillborn or how long he would live if he was born alive.

Siblings: Jay (14); Alex (5); Chloe (14)

Hobbies/Interests: Biking, TaeKwondo, backpacking in the mountains

Something I would like you to know about me is…. I was adopted from Korea as a young girl. Growing up in a Caucasian society was difficult. I felt isolated and experienced much racism.

Sarah

Name of child who died: Jordan

Circumstances of death: Jordan became ill suddenly (high fever, barky cough, difficulty breathing). Called her pediatrician’s office twice (This was on a Sunday) to discuss her symptoms and our concern with her breathing. Took her to local hospital ER where she was diagnosed with croup. Told it would worsen and improve throughout day but to call if we were concerned. Called twice to indicate she was worse and her lips appeared blue. While waiting for a return call, Jordan stopped breathing in our home and we could not revive her. EMTs called but were also unable to revive her. She was pronounced dead after they worked on her at hospital. Autopsy results showed pneumonia and sepsis (influenza subtype-e bacteria in her bloodstream) caused her death.

Siblings: Hunter (twin brother) was 3 when she died, now 7; Hallie, 2 years old, born after Jordan passed away.

Hobbies/Interests: Reading, walking aerobics, spending time with my family, watching football and hockey, seeing movies, spending time with friends.

Something I would like you to know about me is…. The loss of my daughter has been tremendously devastating but I have remained open to receiving support from grief groups and other grief counseling. The support has helped me immeasurably. Now I am planning to return to school to earn my Master’s degree in Social Work; it’s a path that losing Jordan has pointed me toward. It’s her legacy.

I became a Parent-to Parent volunteer because…I had a Parent-to Parent volunteer and it was very helpful and supportive – someone who truly understood. I feel better when I reach out to other bereaved parents because knowing others who experienced the loss of a child is comforting.

My words of encouragement to you are…. You will feel better after time (differs for everyone, so don’t compare!). But you need to “experience” your grief rather than deny it. It won’t go away! People DO care and you should lean on them when you need help. Your life is not over and you can still “be in touch” with your child but in a different way.

Amy

Name of child who died: Justin Hagen

Circumstances of death: Justin had a genetic, neurological, degenerative disease, Batten Disease. He battled the disease for almost 6 years. He got pneumonia, was hospitalized and died 5 days later.

Siblings: Taylor (14)

Hobbies/Interests: I enjoy spending time with my family, walking, gardening, and exercising.

Something I would like you to know about me is…. I want to listen and offer any help, hope I can. My biggest fear when we learned our son had a terminal disease was that I would not be able to go on without him. I can say it hasn’t been easy, but I am here. Things are very different now but I can enjoy things again.

I became a Parent-to Parent volunteer because… I really wanted to try to help someone else through this horrific experience. I wish that this had been available when my son died. We had Child Life employees call us but it just isn’t the same.

My words of encouragement to you are…. I don’t think there is anything worse that could happen to any of us, but you can get through it. Take time for yourself, your own family, and the people that are continually there for you. There will be a day when you will smile and laugh again. I had a few families who had lost children that stay in contact with me, which was very helpful.

Desiree

Name of child who died: Kelsey Marie

Circumstances of death: Unexpected, insurmountable complications following a shunt revision at the young age of 8 ½ + ¾ (as Kelsey would say)

Siblings: Deirdre was 10 at the time (now 18); Jesse was 9 at the time (now 17)

Hobbies/Interests: gardening, sewing, house projects, my family

Something I would like you to know about me is…. It has been 7 ¼ years and I still cry at a thought or memory or sound or sight or even smell!

I became a Parent-to Parent volunteer because…. I wanted people to know that they could actually survive that first year because I didn’t know if I could or would survive.

My words of encouragement to you are…. Keep breathing and remember the love!

Doris

Name of child who died: Sarah (Age 19)

Circumstances of death: Sarah was sick quite often; fourteen of her 19 years. She died of respiratory failure.

Siblings: Andy (25); Mindy (24); Eric (21); Melissa (19); Ryan (16); Hannah (12)

Hobbies/Interests: Reading, being a grandmother.

Something I would like you to know about me is…. I drive school bus for special needs children. Our daughter had a chronic illness over 15 years. We dealt with life support issues.

I became a Parent to Parent volunteer because… I would like to offer the support that I wasn’t able to get.

My words of encouragement to you are…. Talk about your grief, over and over. Even though it’s very painful, it’s necessary.

Karen

Name of child who died: Genevieve Marie

Circumstances of death: Evie (Genevieve) had Trisomy 13. She lived for 19 days. Evie died at home. We chose not to use extraordinary measures to keep he alive. She died in 1999.

Sibling: Evan (4 ½); Samantha (2 ½)

Hobbies/Interests: X-country skiing, biking, running, and spending time with friends.

Something I would like you to know about me is…. I am a very optimistic and positive person. I see my life divided into two parts: before she died and after she died. Through all of this, I have still mainlined a positive outlook on life.

I became a Parent-to Parent volunteer because…. at Genevieve’s wake, I talked to a co-worker who also had a daughter who had Trisomy 13. Her daughter would have been 17 years old the day our daughter died. Hearing her story on that tremendously difficult day was something I will always remember and cherish. For me, connecting with other people who had experienced a similar event and subsequent grief was (and still is!) very helpful.

My words of encouragement to you are…. Three months after our child’s death I found it difficult to even get out of bed in the morning. I didn’t believe I would ever feel better, but eventually I did.

Serena

Name of child who died: Tristan

Circumstances of death: Atypical Territoid Rhaddoid (Brain tumor with mesastasis to spine). Battled for 7 plus months. Chemo, radiation. 9 times in OR, trach/vent then just a trach. Died at home on Hospice.

Sibling: Mikayla (Twin sister ) 3 ¾ years; Jerica 11/3 years

Hobbies/Interests: Reading, writing, long walks, playing with kids

Something I would like you to know about me is…. I would like to start a non-profit to raise funds to help families which have a child with rare a childhood disease.

I became a Parent-to Parent volunteer because… I received a lot of support during my son’s illness and death and want to help others. It helps me make sense of the loss.

My words of encouragement to you are…. Days will come where you will feel joy again. You will find strength, courage, and, yes, hope to get through another day…and then another.

Shandra

Name of child who died: Tarryn (7 years old)

Circumstances of death: Medulla blastoma brain cancer

Siblings: Kiah McGhee (8); Jaella McGhee (2)

Hobbies/Interests: Mostly spending time with family and occasionally playing softball and volleyball.

Something I would like you to know about me is…. I’m a stay-at-home mom of 12 years. I have strong religious beliefs and I’m very family oriented.

I became a Parent-to Parent volunteer because… In my experience, even 5 years after losing Tarryn, I still find peace in just talking about her to anyone who will listen. That has been the biggest part of healing my heart and I would like to be a small part in someone’s healing process and be the one to listen.

My words of encouragement to you are…. Keep your head up because your Angel is there. Your Angel is with you always and will help keep you going strong.

Sharon

Name of children who died: Lillie and Adrian

Circumstances of death: Lillie died of neglect at a respite home. Adrian died of pneumonia.

Siblings: Clare (6); Daisy (2)

Hobbies/Interests: Art of all kinds; I like doing arts and crafts.

Something I would like you to know about me is…. I always strive to be a good listener. I try to be empathic in my daily life.

I became a Parent-to Parent volunteer because… I wanted to give back at least some of the wonderful and much needed support I received.

My words of encouragement to you are…. Reach out and ask for help. It makes all the difference to have the support you need, to move through your grief.

Sonya

Name of child who died: Eli Jamison

Circumstances of death: Died at 1 day old. Difficult pregnancy; no amniotic fluid present for baby to develop properly

Siblings: Ethan (4)

Hobbies/Interests: Reading, walking, biking, gardening

Something I would like you to know about me is…. I am blessed (well most of the time) with an awesome extended family – lots of fun aunts and cousins.

I became a Parent-to Parent volunteer because…I feel that, through the most awful sadness I’ve ever experienced, I grew an learned from Eli and am so grateful he was here. I want others to know you can survive it and learn so much.

My words of encouragement to you are…. Let yourself feel pain and grieve; don’t worry if others are uncomfortable. Joy will come back; be patient.