The other side are those who have given us strength for this journey by hearing before speaking and listening before making decisions. This is what I want you to know about them.
It is by divine providence that we have our family physician. From the beginning, with our oldest daughter, he never dismissed my concerns regarding family history or hard-to-diagnose issues. There is no arrogance in his care. Before we adopted Allison, he looked over her records, researched the best specialists to refer us to and stood his ground when others questioned the treatment she needed. His office staff spends an inordinate amount of time with referrals, pre-authorizations and copying copious amounts of records on a regular basis. He has gone toe to toe with colleagues trying to explain the unique needs of our rare child. In short, he is still willing to learn in order to care for his patients no matter how long he has practiced medicine.
The first time we stepped out of the elevator at Doernbecher’s Children’s Hospital and onto the specialty clinic floor was a blur. Meeting the nurse for the Cranio Facial Clinic made things clearer. Nurse Maureen listened intently to our concerns before examining our daughter. When the cleft palate surgery went so terribly wrong, she came in on her days off to comfort us. Always available to assist in every way, she never doubted the uniqueness of our situation nor did she question our caution even one time.
Our home health nurse became a friend while remaining professional. She was the first to gently give us the news that we may be looking at a full syndrome. As she taught us to swaddle, she educated us about over stimulation, feeding issues and community resources. There was never a condescending tone from her lips, just enormous care from her soul. She met us where we were at spiritually to encourage us to lean into our Creator for comfort and healing.
Allison has an Occupational Therapist whom we affectionately call Dr. Buddington. He isn’t a doctor and his name isn’t Buddington, but after he relayed a story to my husband, the nickname stuck.
The day we received the IV pole for the wheelchair, he happened to walk in to see my tears. For some reason in my mind, it would be a discreet addition to hang the feeding bags on for her g-tube. Instead, it was a tall metal obtrusive pole that screamed hospital. His kind tone spoke understanding into my heart. He agreed that we should find another way to feed her in transit. There was no “your child IS going to look disabled” but the acknowledgement that we all want our children to be as typical as possible.
There are plenty of folks who are walking this journey with us. They show respect, compassion and a willingness to learn. They know the fatigue we suffer deep in our bones. They do what they can to alleviate it with a deep compassion for a child who has the ability to teach them more than all the years in medical school about what is really important. Hearing the heart of another human.
Jemelene Wilson is married with two daughters and a stepson. Read her Tuesdays on Douglas County Moms. Also check out her personal blog here.
There are plenty of folks who are walking this journey with us.