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 grieving the loss of a child:

• 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 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.

Jolene

Way back in April, I posted a blog series about Kurt and Joy Owens and their ministry, Snuggles for Sam. The ministry is in memory of their baby boy, Sam, who died of a serious heart condition in early 2010. I keep up with their family and their ministry by subscribing to their Caring Bridge page.

My Africa

Last spring was a season of deep grief for Joy. Many of us ached and prayed for her as she shared the heartbreak of her separation from her sweet little boy. One of her Caring Bridge posts, My Africa, communicated her difficult journey so eloquently I wanted to share it with you. If you have lost a child or are facing such a loss, grab some tissues and click on the link. Then scroll down until you reach the May 18, 2010 journal entry. What Joy has to say will speak to the deepest longings of your heart.

Join Their Email List

While you’re at Caring Bridge, you can register and sign up for email alerts whenever the Owens’ update their site. It’s an easy way to stay connected to them and with other families you know who have pages at Caring Bridge. You might want to do the same thing at Care Pages, if you know someone with a website at that similar organization. It’s a great way to show families of kids with special needs how much you care.

Come back and leave a comment about how Joy’s story about Africa changed you. I’ll pass them on to the Owens family.

Jolene

If Evan Newport’s name rings a bell for you, maybe it’s because part of his story was told in A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children. Or maybe it’s because you read about his death in November of 2009, when he gave up his seven year battle caused by Noonan’s Syndrome. Or maybe you watched the incredible video, All Around Me, which featured Evan and an interview with his father, Scott.

In Honor of Evan

Well today, whether you’ve heard of Evan before or not, this news will warm your heart. The C. S. Mott Children’s Hospital, located in Ann Arbor, recently named an award in honor of Evan. The awards recognize hospital faculty, staff and/or volunteers who embody family-centered care.

Read More

You can read more about the awards and Evan’s remarkable story at the C. S. Mott Children’s Hospital website. Believe me, you will fall in love with Evan and his family. May their story inspire and sustain you as you care for your child with special needs.

Missing Evan,
Jolene

Who would think cancer could take the life of a three-year-old boy in eight weeks? Cole’s parents, Aaron and Moireen Ruotsala, certainly didn’t think it would happen to their sweet, blond-haired boy, but it did.

Adreno-Cortical Carcinoma

On July 24, 2008, Cole was diagnosed with adreno-cortical carcinoma. It’s a rare cancer (1-2 people per million) that originates in the adrenal gland. You can learn more about Cole’s cancer battle in an interview with his dad at SpecialPrayers: A Devotional Blog for Parents of Special Needs Children.

The C.O.L.E. Foundation

After Cole died, his parents started C.O.L.E.’s Foundation ( Caring Openly, Loving Eternally) to reach out to other children battling cancers and their families. If your child has cancer, you will find the support and comfort you need there. Once you register your family, you will be “adopted” by caring people ready to help.  If you want to help a family, become a member so you can be matched with a family in need of adoption. You can also send prayer requests and updates for the C.O.L.E Foundation members to lift up on your behalf.

Once again, God’s ability to take a family dealing with a great tragedy and give them strength to reach out to others.

Shaking my head in wonder,
Jolene

Now and then, the comments parents leave at www.DifferentDream.com remind me of the work of our redeeming God in the midst of our children’s struggles. The comments Joy Owens leaves are like that. Her messages led to emails and eventually a phone call where she shared the story of their precious baby boy.

Meet Baby Sam Owens

Little Sam was born on November 18, 2009. His parents, Kurt and Joy, knew he had one of the most severe congenital heart defects, Hypoplastic Left Heart Syndrome, before he was born. One of his older siblings has a heart condition also, which is treated at Mayo Clinic, so Sam was delivered there, too. Sam fought to live for 72 days, then fell asleep in the arms of his parents who say he then, “awoke in the safe embrace of his Heavenly Father Jan. 29,2010.” You can read more about Sam’s short life and see pictures of the beautiful little boy at his CaringBridge website.

Meet Sam’s Family

Sam’s parents and his three older siblings (Parker, Matthew and Emma)  are grieving deeply for their lost child and brother. But they are not isolating themselves as they mourn.In fact, they are using Baby Sam’s memorial money to launch a gift bag ministry to families of newborns with serious congenital heart defects. They’ve named the ministry 4HisHeart-Snuggles from Sam. For a peek at the gift bags and how their creator is participating in the ministry, go to this etsy link to view them.

Why Gift Bags?

The unique circumstances of Sam’s hospitalization led to the creation of the gift bag ministry. At Mayo hospitals, all newborns with serious health issues go to the neonatal intensive care unit (NICU). After surgery, all but those with heart problems return there. Those newborns are transferred to the Cardiac ICU which cares for all heart patients, newborn to ninety.

Joy explains, “The heart care they receive in Cardiac ICU is excellent, but the unit isn’t set up to meet the special needs of newborns like NICU is.” So during Sam’s stay, Kurt and Joy implemented some NICU techniques that soothed and calmed their little boy.

The Owens are filling the bags with things they found helpful during Sam’s hospitalization. To learn the what and why behind each item, come back in a few days for the second part of this series. Until then, keep the Owens family in your prayers. Ask God to wrap his arms around them and bring them peace along with healing tears.

In memory of Sam Owens,
Jolene Philo

When you hear that a child has died, what should you say? Just as important, what shouldn’t you say? Every word counts at such an emotionally charged time, and we would all do well to think and pray before speaking to grieving parents and families.

Words of Comfort for Times of Loss

You can find answers and guidance in a new book by Cec Murphey and Liz Allison, Words of Comfort in Times of Loss. The authors have experienced great loss and speak out of compassion and shared grief. Because this topic is so important, they have also created a free document to download, Practical Tips on Grief and Loss. If you know someone who has recently suffered the loss of a child, these tips will be an invaluable resource.

Thanks, Cec Murphey and Liz Allison

Thank you, Cec and Liz, for sharing your wisdom with us. After you read their list, leave a comment about what you learned. Or leave other suggestions or questions about what to say when a family loses a child.

May God give you words to comfort those in need,
Jolene Philo

Not too long ago, I shared with you about the death of Evan Newport, a little boy with Noonan’s Syndrome. When Evan was born, doctors told his parents, Scott and Penni, not to expect their baby to live more than a year. But the amazing little boy survived longer than anyone expected.

Evan Lessons

In seven short years of grace, Evan taught his family and all who met him many important lessons. One of the lessons Evan’s father learned was captured in a beautiful video, Evan Newport – All Around Me, created by Everett Marshall. The video was in production before Evan died, and is now available for viewing.

God Salvages Good from Ruin

You can see Evan in action and hear his dad talk about the lessons he learned from his little boy. Prepare to have your definition of what has value and what doesn’t challenged and changed while you watch. 

Click here to view the embedded video.

Will you ever look upon a special needs child or a discarded piece of wood in the same way? I sure won’t.

Thank you, Evan and Scott, for teaching me such a valuable lesson!
Jolene Philo

A few months ago, I posted an update about Evan Newport, a little boy featured in A Different Dream for My Child. The blog post told about Evan taking part in the festivities surrounding the Big House/Big Heart Run in Ann Arbor, Michigan this past October.

Now it’s time for another update on Evan and his family. Early Friday morning, the day after Thanksgiving, a brief email arrived from Evan’s dad, Scott. “Evan died,” it said. “Love to all who have followed our journey.”

Noonan’s Syndrome

When Evan was born and diagnosed with Noonan’s Syndrome, a heart condition which thickens the heart muscles, the doctors didn’t expect him to live more than a year. But he battled Noonan’s Syndrom and a terminal condition called “hypertrophic cardiomyopathy,” which kept him on a ventilator most of the time.

Evan Newport Touched Hearts

Evan’s fight is now over, but he continues to touch many lives. Scott emailed this morning to say that he and Penni, his wife, have been reading the hundreds of emails they’ve received. “I guess I never really knew just how far-reaching Evan’s little precious life was,” Scott wrote.

Their little boy’s life continues to reach others as this article at AnnArbor.com shows. And these recent pictures, arranged and provided free of charge by the pallative/hospice organization working with the Newport family, will touch your heart, too. Information about Evan’s homecoming is available at www.lynchfuneraldirectors.com.

Goodbye, Evan Newport

The Newports lived with the specter of Evan’s imminent death every day of his short life. Scott once told me their living room was basically a pediatric intensive care unit, complete with nursing care and a ventilator. But living with the reality of death doesn’t make saying goodbye to Scott and Penni’s little boy and Noah’s little brother less difficult. Adjusting to life without Evan won’t be easy, either. For seven years, this family’s life has been defined and bound by Evan’s needs. Now they have to learn to live without the roles of parents and sibling to a special needs child. Doing so will take time.

So when you think of this family, please pray for them. Pray for comfort in the midst of their hurt and loss. Pray for their faith to remain strong. Pray for their loved ones to remain supportive for months to come. Pray for for sweet memories of Evan and his life with them.

Goodbye, Evan Newport,
Jolene Philo

For parents with a prenatal diagnosis indicating a fatal birth defect, there are dozens of questions and no easy answers. If your unborn baby has received such news, I am so sorry. I have no answers for you, but hope this post and video will help your family in the difficult days ahead.

Trisomy 13

The video, posted on the Dallas Morning News website, was created with the Laux family’s permission,  after  tests revealed their baby had the DNA abnormality Trisomy 13.

Click here to view the embedded video.

The Dallas Morning News site also provides a resource page about pediatric end of life care and tips for families. I’m not endorsing the organizations listed there, but if you are researching the topic, the page is a good place to begin.

Perinatal Hospice

Another organization, Perinatal Hospice, helps families with unborn children diagnosed with terminal conditions. The people who created the website and the organization know what you are going through. Some of them have walked the path you are on now and can help you in ways I cannot. They offer compassionate support, a wealth of experience, and lists of books and other resources for grieving parents.

Again, if you or someone you know recently received a prenatal diagnosis that could be terminal, I am so sorry. May these organizations and resources help your family make a thoughtful and loving decision. If you know of other support organizations, please contact me so I can list them on the DifferentDream.com resource page.

When I wrote A Different Dream for My Child, the meditations addressing the death of children were the hardest ones to complete. Why? Because my child lived, and I felt hypocritical trying to comfort parents who have lost much more than I have.

God’s Holy Work

If my editor hadn’t insisted, I wouldn’t have tackled the subject. And even though several parents agreed to share their stories of loss for the meditations, I still felt like a fraud. But my attitude slowly changed with each interview conducted, and couples graciously opened their hearts, reliving their losses. Though some of them lost children over thirty years ago, they wept as they recalled their hard times. But, they also laughed, and all of them said their experiences strengthened them. As each interview concluded, I sensed a holiness that’s hard to put into words. I went home grateful and certain that bringing these children to life in the pages of the book was my small part in God’s holy work of gathering all our tears in a bottle and using them for good.

Compassionate Friends

If you are a parent who has lost a child, you are part of God’s holy work, too. You have lost more than I can ever imagine, and confess that I am not qualified to comfort you. But I am honored to hear about your son or daughter’s life. Your child’s life, no matter how brief, had value and purpose and touched many hearts and will continue to do so.

Though I don’t know how you feel, I can direct you to Compassionate Friends, a national organization started by a mother who lost her child. Many of the parents I interviewed recommended it highly. Their national website can help you locate a chapter near you. It provides resources and information, along with an 800 number to call for immediate assistance.

If you are struggling with your loss, please reach out to someone. Contact me or your pastor or Compassionate Friends until you find people who do know exactly how you feel and are able to help you.