How we learned that our special needs child was becoming more “normal” and how we dealt with the idea of becoming different parents.
Sometimes, life gives you lemons. You learn how to make lemonade and in the beginning, the lemonade is not very sweet. But over time, you perfect your recipe and lemonade becomes a flavorful part of your life.
Our son Jack was born with a defect called congenital diaphragmatic hernia or CDH. CDH is our “lemons”.
CDH is a defect where the diaphragm does not form properly in utero and will allow for abdominal organs to move into and develop in the chest cavity. This decreases the room available for the lungs to develop. It will result in a stay in the neonatal intensive care unit (NICU) as well as a diaphragm repair surgery in the early days of the baby’s life. In Jack’s case, it also resulted in a number of other complications.
During our stay in the NICU at Cincinnati Children’s, Jack completed six trips to surgery and over a dozen exploratory procedures; few of which were directly related to CDH.
After his nearly five month stay at Cincinnati Children’s, we went home with a gastric feeding tube, an ileostomy, 24-7 oxygen requirements, developmental delays, plagiocephaly, hip dislocation, scoliosis, feeding difficulties, dysphagia, GERD, short bowel syndrome, a lowered immune system, chronic lung disease, pulmonary hypertension and 11 medications. My husband, Matt, and I went through the nurses’ training on how to care for our little bundle of joy, but once we were outside of the watchful eye of the medical staff we learned how challenging and scary it was to care for a special needs child.
The ileostomy was a short lived but enormous challenge for me which we battled several times a day, thanks to an adhesives intolerance that Jack developed. Within a couple weeks of Jack being home, Matt and I perfected our ‘recipe’ for taking care of Jack. We would take turns waking in the middle of the night to administer medications and check the pulse oximeter. Matt would manage the bulk of the ileostomy bag changes and I would handle whipping up a special mix that went into his feeding tube. Regular doctor visits were a shared responsibility since both of us had full-time careers. We did have help; we have a very supportive family, part-time in-home nursing, county assistance, therapists and a very involved medical staff at Cincinnati Children’s. We worked on our recipe every day and soon, it became second nature. Lemonade was finally an accepted and perfected part of every day.
Slowly over the course of the last nearly three years, ingredients of our medical lemonade dropped off the list. With therapies, he has begun to eat orally and talk coherently. His plagiocephaly was corrected with an orthopedic helmet and occupational therapy helped him increase strength and master movement. With additional surgeries, the hip dislocation is repaired and he is walking and running; plans to repair the scoliosis are coming this winter/spring. And with time to heal and grow, he no longer has an ileostomy, his GERD no longer causes eating discomfort, his immune system is getting stronger and his pulmonary pressures are in normal range. We still observe the flu restrictions at Cincinnati Children’s and still use the oxygen in our home from time to time, but it is no longer a daily requirement.
Having your special needs baby grow into a healthy toddler is everything that every parent wants.
The plan after county assistance expired at age three was for Jack to go into a medically sensitive preschool which would meet a couple hours a week. This school would give him the continued education assistance and medical support with the added element of interaction with other kids that shared his delays. We were so excited about the opportunity that this would give Jack. He loved being with other kids and my husband and I loved the structure and support of a medically trained adult watching over him while we couldn’t.
A developmental specialist from the county came out to perform a preliminary assessment to ensure that he would meet the requirements for the preschool program. During the assessment, Jack was full of life and energy. This specialist had been coming out to our home regularly for a couple years to work with him and he was always happy to see her. As far as he was concerned, this was a woman who was coming to his home to sing, put together puzzles and read with him – it was a playdate.
After the 45 minute meeting was coming to a close, she looked at me with a slight look of concern on her face. She said, “I know you don’t want to hear this, but I don’t think he will qualify for the preschool program. He’s too caught-up.”
My initial reaction was a shock to me. I was upset. I felt lost. If I’m not a special needs parent, who am I? How do you raise a “normal” child? We will have to put Jack into a normal preschool. Will the other kids make fun of his scars? What will they think when Jack is missing during the “lockdown” of flu season?
I sought the counsel of a few people who I knew would give me the pep talk I needed to hear. I have a son who beat the odds; we once thought that we wouldn’t be so lucky and now we’re talking about preschool. This is a day that some parents only dream of. I remembered one day when a nurse from the NICU told me that my son was “appropriate” and that gave me immeasurable hope for my son. Now we’re hearing that he’s “too caught up.”
It has come to a time where we have to give up our lemonade recipe and learn to be a different kind of parent; with different responsibilities.
I always liked juice boxes more anyway.
Looking for CDH support and information? The Congenital Diaphragmatic Hernia Team at Cincinnati Children’s is a great resource, along with Breath of Hope and CHERUBS.
Editor’s note: If you’re interested in reading more about Kaytee Roettgers, her son, Jack, and their journey with congenital diaphragmatic hernia, you can follow her on her blog at We Know Jack.
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