Caring For Terminally Ill Children
“We first began caring for terminally ill kiddos in 2012. Our family has fostered and adopted 7 children. 3 of them have been and are terminal. Our first baby died when she was 50 days old. We have two boys right now, a foster child who is 14-years-old we nicknamed TBear, the shortened guy version of Teddy Bear. And we have Charlie who is going to be four-years-old in June. He wasn’t supposed to live until he was 18-months-old but is thriving in spite of his severe brain injury that occurred in the womb and at birth. 4 other foster children came to us medically needy but were nurtured and brought to a healthy place and moved to other families as their adoptive resource. I also have 8 biological children.
I believe every baby or child should be loved and have the opportunity to be held and truly live before they die. There are children whose biological parents are not able to be with their child. My family and I feel privileged to be there for children with life-limiting or terminal diagnoses for however long they live. Everyone is going to die, this is a fact of life. There are babies and children who have diseases or conditions which mean their life will be brief. They shouldn’t be ignored or abandoned because of this. I am a RN with a hospice background.
Learning To Accept Death
Caring for these babies and children has provided numerous opportunities to grow. To learn how to be more patient, kind, and persevering. It is a roller coaster of emotions but the longer we’re actively doing this, the less scary it has become. We don’t know from day to day how much longer our boys we have right now will be with us. Emmalynn, our first baby girl, lived, lived, lived until she died. There was no mistaking the signs the last evening she was still with us. She died, snuggled in my arms, her head resting against my breast, listening to the steady sound of my heart. She wasn’t in pain. She wasn’t struggling. We cried, oh yes, we did, but not because we were in despair or felt hopeless but because the separation is sad and grievous, and we are fully human. We feel very purposeful in the love and nurturing we give the children who’ve been brought into our family and we also experience all the highs and lows of having children with special needs and who have a condition which will shorten their time on earth. A brief life doesn’t have to be an incomplete one however.
We were told that our Charlie was blind. He doesn’t respond to any medical tests of his vision. One day, early on in our journey together, he was in his wheelchair. My husband was sitting on his right side while Charlie’s head was turned to the left. A couple of minutes after Mark sat down by Charlie, the babe picked up his head and turned it towards my husband and reached out his right arm and hand towards Mark’s face. I thought this was a fluke so asked my husband to switch to Charlie’s left side. It took a few minutes, but Charlie once more picked up his head and turned so he was facing Mark again. I’m not easily fooled or convinced so a third time, I requested Mark sit on Charlie’s right. It was unmistakable that Charlie knew where Mark was and was purposely making contact with him. Our buddy may not be able to speak words with his mouth, but he is able to communicate with us and we know him and can more fully advocate for him because of this intimate, loving relationship.
Everyone wants to matter to someone. We all desire a close human connection. People who love us, who care about our needs and wants and who will miss us when we’re no longer here. People who find us significant and worth time and attention. These children with a terminal diagnosis give life meaning. They give the chance to focus on what really matters and not be so caught up in worries about things which are inconsequential. They provide perspective.
We all can make a difference in the life of a child.
Creating A Compassionate Home
Our family has no concerns having an open heart and an open home that we will be given too many children. We fully believe God knows exactly the number of hairs on our head and He also intimately knows the kiddos He desires for us to love before they’re called Home. The title of my book is “I Will Love You Forever”. I do not believe these children who die are somehow “lost” even though that’s a common way to say it, ‘Oh I’m so sorry you lost your baby.’ And we will indeed love them forever. I have held hundreds of small babes in the palm of my hand when they were miscarried, stillborn or died shortly after their birth. Their parents and family have held them but even if that wasn’t possible, they knew the touch of my human hand who had compassion on their tiny bodies and they were clothed, blanketed and held.
More than anything, the parents I work with just needed someone to feel the loss of their child as deeply as they did, a compassionate and steady presence to help them as they learned to cope with their grief.
I want them to be in my arms when they die. Held, peaceful, and loved to the very end. Someone needed to be able to stay close when it was the hardest, to find the wherewithal to resist the urge to run, to stand by even if they couldn’t fix anything or change the outcome.
We had attended a Mark Shultz concert and we heard his song “What It Means to Be Loved.” Mark told the audience the song was about loving a child who most likely wouldn’t live very long: ‘I wanna be her mom for as long as I can. . . I wanna show her what it means to be loved.’ The artist had put into words what had been my heart’s desire for the longest time. I wanted to do just that, to be a family for a child no one else had the desire or ability to care for.”
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