For a new mother most any irregularity in her baby’s “numbers” is cause for concern.

 

Panic and concern ensue if baby has not ingested enough ounces of milk or spoonfuls of oatmeal, has had too few hours of sleep, or hasn’t burped and pooped the usual amounts. It’s all about the numbers and the norms, according to the experts.

For me, it was Dr. Spock. I lived by what Spock said my baby should be doing and if all was well in the normal range, I was fine. The first cold and high fever was a Red Alert, and my parents were called in for consultation. I wondered what I’d do if anything “bad” happened to my son or if he came down with an illness that wasn’t treatable.

I haven’t faced the uncertainty and fear parents endure when their child is diagnosed with a serious or life-threatening or even terminal illness. To address this subject, I turned to an admired friend who not long ago lost a child. I asked her to share what helped her and her family through the illness and the eventual death of her precious little person, who they’d welcomed with such excitement, love and visions of a future in which to love and guide this welcomed addition to the family. She and her family inspired me as I kept up with their journey from a distance; in fact, they continue to inspire all who know them. With her permission and my deep gratitude, I share her words:

“Prayer, the hope that we’ll be together again no matter what, the willingness to accept that we don’t and won’t ever have all the answers, and willingness to accept that, for some reason, this experience fell to us all just worked together to help us cope and deal.”

She went on to talk about other parts of their journey, which included the love of family and friends who shared time, food, comfort, support and a willingness to be present with them whether at home or at the hospital.

She also expressed that new friendships formed with other parents and family members of children and babies in extended stays for medical conditions were invaluable. The bond between parents of sick children is a strong one and goes beyond the hospital walls. I’ve heard from others about how these folks keep in touch long after the hospital stays to celebrate memories, milestones, or even to grieve losses. The comfort of those in similar circumstances is precious. When people are hurting, an understanding word, kind touch, shared tears and warm embraces are healing sources.

Faith, family and friends are crucial to those whose children are facing a life-threatening disease. Another helpful tool I’ve heard from my friend was to gather facts, and I heard this from others as well: Gather all the information you can, so you know what you’re dealing with. Talk to the doctors about your findings, and ask them to discuss what is relevant, applicable and important to the diagnosis and treatment of your child. Information is both comforting and terrifying, yet most parents have a need-to-know that transcends their fear. This allows them to participate in their child’s treatment with some degree of familiarity. I understand. It’s always been a lot easier for me to know what I’m facing rather than letting my imagination run amok and put me in a state of blithering idiocy. Frequent meetings with the medical personnel were also mentioned as a coping tool. Talk to the doctors and nurses involved in the care of your child about treatment options and outcomes and the future. This helps all parents going through a difficult journey. Most parents would walk through fire for the safety and well-being of their children, so finding out what lies ahead helps them prepare for the battle ahead, to get emotionally steady to remain engaged and strong.

Seeking help from a medical professional is certainly ideal. Parents living through the terror of losing a child, or the possibility of loss, can feel so many conflicting emotions along with this fear. Talking to someone who is not emotionally embedded can help parents sort through these emotions; he or she may also gain comfort from sharing what cannot be spoken aloud to others. Many parents accept that they are anxious, afraid and sad beyond words, but might have some trouble expressing the normal, but disconcerting experience of anger and resentment that is associated with their children having to endure the illness and its treatments. Counseling can help. Support groups may be of assistance as well. I recommend any resource that is helpful, useful and comforting.

I think any parent will tell you that you don’t know what vulnerability feels like until you have a child. At that point your heart and happiness begin to dwell outside your body, and control over both is arbitrary. All good parents get this, and the looks they share with other parents in the waiting rooms at children’s hospitals are universal. They convey fear, compassion, understanding and hope.

Faith, family, friends and facts can each help. None will cure, but all can comfort and sometimes that’s as good as it gets.


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