When Life Throws You a Curve Ball
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When life throws you a curve ball it’s not about swinging for the fences, you just need to put the ball in play. Having a child with a disability is one of the biggest curve balls that life can throw at young parents. I was fortunate. I had taken care of young child with Down syndrome eight years before we had Sheila. I had spent a lot of time with the child and his mother. This child was placed in an isolation room because he had pneumonia, and the unit was considered a “clean” unit. In other words, filled with kiddos that needed to be protected from infections due to their diagnoses of cancer or unrepaired cardiac conditions. Usually, a child with pneumonia would be assigned to a different unit.
This particular child was 18-months-old and he had a complete AV Canal Defect. The center wall of the heart had holes between the upper and lower chambers of his heart. He also had Down syndrome and pneumonia. The doctor’s wanted him with pediatric nurses that understood signs and symptoms of cardiac complications and the need to protect the other children on the unit. Every time I entered his room, I had to don full PPE (personal protective equipment) and I would have to doff the equipment as I left the room, making sure I did not contaminate anything in the process. I did not have responsibilities for any other children on the unit while caring for him.
I spent a lot of time in the room with that mother and child. While there, I asked a ton of questions about raising this little guy. Among the questions was, “What are your hopes and dreams for him?”
At the time (late 1970s) there were not many hospitals doing the surgical repair needed for this condition. The cold, hard numbers showed a very low 5-year survival rate, even when surgery was attempted.
Her first hope was that he would survive this current bout of pneumonia and that they could get him to the closest large teaching hospital that was doing this surgical repair. (I was working at the Medical University of South Carolina at the time, and they were a top-notch teaching facility, but they did not feel they could do this little one’s surgery.)
Her next hope was that he could get him to Emory University Hospital in Georgia and that he would survive the surgery. Beyond that, she did not dare to dream of what his future would hold for fear it would all be snatched away.
After this child was discharged, I turned to one of my closest friends at the time and said, “I know if I ever have children one of them will have Down syndrome.” That person looked at me like I had two heads and queried why I thought that. I was absolutely certain because I did not fear it. I had fallen head-over-heels in love with this little bundle of energy, and he wasn’t even mine. How could I possibly not end up loving my own child that had DS?
The mom of this child I mentioned kept in touch with me for a while, and she did let me know he survived the surgery. We continued to write the occasional letter for a few more years, and then we lost touch. But wait there’s more…
When I had Sheila, this other mom and her young son was one of the first people I thought of. I knew I could make an adjustment in my hopes and dreams, after all I had one of the best examples set before me.
The day after we had Sheila, a children’s librarian that was a co-worker of my sister and someone Forrest and I knew from Old Songs, showed up at my door. She was armed with current information about DS that she had gathered from the local Down syndrome support group. Among other material she brought was a magazine called, Exceptional Parent.
In the last few pages of the magazine was a connections wanted section. I was reading through them and came across one from a mom with a prepubescent son looking to find parents that could help her in this next phase of her and her son’s life. I recognized the address and wrote her a letter, telling her I had just given birth to a child with DS. We picked up our correspondence again for a bit. But I digress… Back to newborn Sheila and the support I had.
A childbirth teacher/friend, also, showed up on the next day, on “blue Thursday.” She brought info on nursing a baby with DS and a lactation consultant’s card in case I needed extra support. Since I had successfully nursed one baby already, I was not too concerned about this. What is blue Thursday, you ask? In the first few days following birth there is a huge hormonal shift happening in a new mom. My childbirth instructor friend timed her visit with this day knowing it might be a particularly hard day for me.
She was right. It was a hard day. Even expecting I would have a child with DS, no matter what my hubby’s statistics assured me that it wouldn’t happen, I still had just given birth to a baby that was not typical. We, as a couple, needed to come to terms with the changes this would introduce into our lives. We also had to grieve for the loss of the typical baby we thought we were having. However, between these two women and my sister, I had a ton of support. And support is something that is so important when life throws you a curve ball.
I don’t remember which woman brought be a copy of Emily Perl Kingsley’s, Welcome to Holland, but one of them did. Emily Perl Kingsley was a writer for Sesame Street and anyone watching the show in the late 70s, the young boy Down syndrome was her son.
In this essay she likens the shock all parents feel initially, to planning for a vacation in Italy but landing in Holland. For her, she writes the pain of loss never, ever goes away. And I suspect that the statement rings true for many parents. Is it because I fully expected to have a child with Ds that it didn’t ring true for me? Perhaps. However, there was still an initial, what the heck… How did we end up here, feeling. But just as Andrea and Colleen were children we were supposed to have, so was Sheila. Sheila was one curve ball I was happy to receive in life.
Life kept throwing us one curve ball after another as Sheila aged. But life also graced us with the support needed to keep moving forward.
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