The previous post in this series relayed the story of Baby Sam Owens’ short life and described the gift bag ministry his family started in his memory. It even gave you a sneak peak at the custom-made bags they’ve chosen to use.
A 4HisHeart Ministry card in the heart pocket on the front of the bag
Why Those Items?
Joy explained why each item is in the bag.
One day, Joy spied a Sleep Sheep at the main desk of the Cardiac ICU. Whey Joy discovered it played soothing “white noise” she asked if Sam could use it. From then on it was his constant companion, drowning out the harsh sounds of the intensive care unit.
Like most babies, Sam loved to be swaddled tightly in his SwaddleMe wrap. The wrap was so effective in calming Sam, the Owens want other parents to have the same tool available to them.
One day, Kurt and Joy found a fleece blanket in their mailbox at the Ronald McDonald House. Joy says it was smaller than most and fit perfectly in Sam’s isolette. And it wasn’t knotted like conventional fleece blankets, so it didn’t have hard bumps to irritate his tender skin. The members of the Cheerful Hearts in Christ’s Service (CHICS) group at Walnut Ridge Baptist Church in Waterloo, Iowa are making the blankets.
Gas Card – Most babies with serious heart defects are far from home and travel costs mount up quickly for parents.
A Different Dream for My Child – One of Joy’s friends gave her the book, and she said it was her constant companion and source of hope during Sam’s hospital stay. She wants to pass hope on to other families.
Lullaby CD – Another way to cut out hospital noise and soothe newborns.
How Much Do They Cost?
The Owens family has twenty bags filled and ready to deliver to the Mayo Clinic Cardiac ICU. Eventually, they would like to expand the ministry to other hospitals where newborns with heart issues are cared for in Cardiac ICUs instead of in neonatal intensive care units. But to do that, they will need donations since ach bag and its contents costs about $100.
Kurt and Joy are developing a 4HisHeart website which will tell about the ministry. As soon as it’s up and running, I’ll add a link to this post so you can get there. Until then, you can read about the ministry and contact Kurt and Joy at Sam’s CaringBridge website. Or you can leave a comment here, and I will pass it on to Sam’s mom and dad.
Thank you, Kurt and Joy for reaching out to parents while you are grieving over the loss of your son. May your tears and thoughtfulness bring comfort to many hurting families.
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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.
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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.
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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.
Will you ever look upon a special needs child or a discarded piece of wood in the same way? I sure won’t.
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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 Newswebsite,was created with the Laux family’s permission, after tests revealed their baby had the DNA abnormality Trisomy 13.
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.
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