Imagine your perfectly healthy child (or grandchild) is four years old. On Friday, you pick them up from childcare, and they complain about a stiff neck. That fateful day began our journey with sorrow management.
They wake up several times during the night. Saturday you call the pediatrician for an appointment. The doctor wants to examine your loved one that morning. Because it is unclear whether your child’s pain is caused by an injury or viral infection, the pediatrician orders X-rays of the neck. You mention your concerns about your child still running on tippy-toes.
On Monday, the results of the X-rays indicate there is a disc space calcification between the 5th and 6th vertebrae. The pediatrician recommends a pediatric orthopedic surgeon review the X-rays. So, you and your child go that same day with X-rays in hand for an appointment with the specialist.
While your little one runs around the specialist’s office, you mention your concerns about the persistent toe walking and people’s comments about your child’s large calf muscles. The specialist makes notes and recommends a series of blood tests, including a CPK count, which stands for creatine phosphokinase. You both leave that appointment to have your child’s blood drawn at the lab.
Tuesday evening, upon returning home after eating out, the red light is blinking on our answering machine. It is the orthopedic surgeon letting us know he has the blood test results. He needs to see Pete and me as soon as possible on Wednesday.
Good News Bad News
Imagine hearing the results from the specialist: “I have some good news and some bad news. The good news is that Hayes has a strained neck. The calcification in his neck can be congenital in families and is not a great concern for your son. The bad news is the combination of the toe walking, calf hypertrophy, questionable Gower’s sign, and an elevated CPK level of 26,568 indicate your son has muscular dystrophy. I think it’s Duchenne. When Hayes is about 8, we’ll cut his tendons. He’ll either be able to walk in long leg braces with a walker as an aid or use a wheelchair to get around anywhere from about 8-12 years old. He’ll be lucky to live past 20. The immediate next step is to see a neurologist; then I’ll schedule a calf muscle biopsy surgery for next week.”
Imagine getting a diagnosis of a lifelong disability and the death sentence for your child at the same time. That moment changed our three lives forever.
There was no history of neuromuscular disease in either my family or Pete’s. For weeks, whenever Hayes was not around, all I remember is both of us crying whenever we passed each other. Some pain is so deep it is unspeakable.
For four years, we felt fortunate to have a healthy child. In five heart-pounding days, we went from The Fun Fuller Family to how will we ever survive this?
Let the journey with sorrow management begin. If you have ever struggled with knowing how to reach out to a grieving family member or friend, remember the words of Grace Noll Crowell’s poem. It is so heartfelt and all about love and connection.
Tough Cookie Tip: In the post A Tear And A Smile, I held onto the message that every sorrow is the birth of a new joy. Trust in the love and commitment to your family, to one another, and believe. Looking back, I wish Pete and I would have worked with a grief counselor as soon as we got the diagnosis about our son.
Copyright © 2022-2025 Marilyn K Fuller. All Rights Reserved.
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This one brought back a lot of tearful memories. I do love that poem too. XOXO Sis
Going back to time of diagnosis or “when life changed forever” is so hard. I love the poem. This brought back my own memories & many of you all.
I remember like yesterday having a social worker tell us in 1985 that our 18 month old son was functioning at a “moderately retarded” level and would likely never mature past the age of 3. We were told he would likely never be able to count money, get a job or live alone. When I asked about therapies, she told us that the time and expense it would take transporting him back and forth to therapy would far outweigh any benefit he could ever gain. That was the first of many “Oh HELL no!” moments I would have as a fellow tough cookie. I immediately started him in intensive speech and occupational therapy. They were wrong. Later, when he was clearly no longer “retarded”, (he had a near genius IQ, was highly verbal and had a photographic memory, both visual and auditory, and was completely color blind) I expressed a belief that he had Autism. He had many of the classic behaviors. Hand flapping, inability to manage his emotions, very literal in his thinking, minimal coping skills, uncomfortable making eye contact, hypersensitive to touch, sound and light, both fine and gross motor delays. I was told no, that he had autistic tendencies but did not meet the criteria. Moms don’t know anything after all. They were wrong. We then recieved multiple diagnoses over the next 12 + years. Everything from learning disabled, to communicative disorder, to ADHD, to severely emotionally and behaviorally disordered, to spoiled, to a seizure disorder and more. They were all wrong. He was always a square peg and all the holes were round. After long ago accepting he did not have Autism, we finally received a formal diagnosis of Autism, unexpectedly and out of the blue, when he was 16. The criteria had changed to include those with normal – above average IQ as long as the other functional criteria was met. I was right all along. He was atypical and developed severe mental illness in his late teens, which was heartbreaking. But I will never forget my hopes and dreams for my son being instantaeously crushed all those years ago with his first diagnosis. It leaves you numb, in disbelief, grief stricken, scared, and incredibly saddened. It also toughens you. Parents of children with disabilities are the toughest people I’ve ever met and I’m proud to count myself one of them. Thank you for writing this to paint a picture of what it’s like.
My Fellow Tough Cookie, I read your comment three times and appreciate the time you took to write about the diagnostic process your family experienced. I know your heartfelt words will connect with others trying to work through similar circumstances. I always felt I got to meet the best people and families because putting their children first was always the priority. Thanks so much for sharing parts of your life with me and the viewers.
I remember when you told me about Hayes and then hearing the news about his diagnosis. No mom wants to believe this kind of news. After all the things you shared with me about Hayes and his ability to enjoy his life and love people regardless how they treated him, I know he loved being cared for by you.
Janet, I felt so alone and lost after Hayes died. I felt abandoned by my close friends, who I thought would be there for me. Family lived far away. Then there was you reaching out to me. Thank you for staying by my side through all the grief. Thank you for loving Hayes even though you never met him. Ever grateful for your enduring love, friendship, and loyalty.