By: Ellen Lenox Smith
As I celebrated Mother’s Day, I received an email from our youngest of four sons that brought me to tears. He thanked me for always being there when he confronted a number of very serious medical issues during his childhood and early adulthood. He also shared that now as a parent himself, he hopes he never has to face watching the pain and difficulties we faced raising him.
Our youngest was born a month early on Christmas Eve and immediately started life in special care. It was first diagnosed that he had inherited my father’s glycogen storage disease, type IX. But, he always had trouble with low oxygen levels and spent a lot of his early years in pain and feeling poorly. We searched for answers to help improve the quality of his life. All parents realize very soon in the parenting journey that watching their child suffer without being able to secure effective medical treatment is truly heart-wrenching.
By his freshman year of college, when no one in the dorms wanted to sleep near his room, due to loud snoring, he finally called to say it was time to seek more help. In time, it was discovered that he had an enlarged lingual tonsil. Doctors in Boston attempted a laser treatment to reduce the size of it. However, our son reacted to medications, developed rashes, and was just miserable. After healing, there was no improvement with his oxygen levels that were still only in the high 80s.
In time, it was decided to try moving his jaws forward to create an open airway. What was supposed to be a six-hour surgery turned out to be 11 hours when twice they thought they were done and laid him back, the plates and screws designed to hold his jaw in place fell out. So, when we finally saw our son in the ICU, his mouth was wired shut in hopes he could heal. Mind you, this was a young man with constant nasal congestion, so to only breathe through his nose meant we were on ICU duty around the clock, to constantly suction his nose to allow him to breathe. I spent the days in the hospital and my husband took on nights. Meanwhile, our three other sons lived around this chaos of life disrupted with us.
Sharing this story brings back the horror of what we all went through. There is nothing more heartbreaking than to watch your child suffer. You would do anything to have it be you instead of them.
So where is the hope in this story? Believe me, it is loaded with hope for you all as you read what happened to this young man’s life. He proceeded to graduate at the top of his class in high school, was an outstanding swimmer on a swim team, taught himself many instruments, and in time created a band, loved art, and moved on to a double major at Brown University. This was the same young man that rarely felt well for years, yet he found the inner strength to live life anyway. Today, he is very happily married, father of two precious little girls, and owns a business that utilizes his art and musical skills.
What we have gained as parents is a young man that has made us so proud since, he learned at an early age, due to his difficult challenges, to appreciate and value life. We receive almost daily calls, photos, and videos of his children growing up. He gardens in his backyard in NYC, cans and ferments food, and just loves to cook. He does not take life for granted and is so sensitive and compassionate to our struggles with my two incurable conditions and twenty-five surgeries. He feels like not only our son but a very special friend in our lives.
If only we had had a crystal ball during the difficult times to allow us a glimpse into his future to see how this young man’s life would unfold from those horrific years of medical issues, we would have handled the stress better, but that wasn’t in the cards.
So, as you might also be experiencing that helpless, exhausting, heartbreaking feeling of just wanting your child to have a normal chance at life, I hope this story can bring some hope to you. Do your best, be their voice but also know in time, they need to learn to be their own voice too. Our son declared after the jaw surgery that he was done with any more repairs and we allowed that to be his choice. He was becoming an adult and we needed to let him make his choices. He found ways to alleviate pain through yoga and meditation and went on to his dream career which he adores. He learned to eat well and take exceptional care of himself and, now, his entire family.
Hold on to hope and may your child’s story be something you, too, can look at with the knowledge that those who face extreme challenges in life often develop exceptional physical and emotional strengths. We all need to learn to find the good and positive in the difficulties we are given.
May life be kind to you today, and every day.
Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program and is part of the Oversight Committee for the Compassion Centers in RI. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.