When I was pregnant with my first child back in 2006, there were things I expected to happen. I expected diapers, crying, toys everywhere, the occasional sniffles, the first day of school, family pictures, etc. I got that and so much more. The diagnoses of Down syndrome, AV canal heart defect, Wolff-Parkinson White syndrome, asthma, sleep apnea, GERD and a lung cyst all brought unexpected things to my parenting experience.
As I measured the bald spot on the back of my daughter Jaycee’s head last night to see if it was getting larger, I thought, “This is something I never expected to do as a parent!” And yes, if you are curious, it was a half centimeter larger than a few weeks ago.
Here are 10 other things I never expected to do as a parent:
1. Choose my daughter’s hairstyle based upon a BiPAP mask. If her hair gets too long, the mask doesn’t seal as well. Plus, the headgear makes wrinkles and uneven waves in her hair. That’s why short hair is the best style for her.
2. Leave a pharmacy with a bag full of medicines for my child every month.
3. Arrange my daughter’s furniture in her room based upon her medical equipment and outlet locations. Her bed has to be near an outlet for the BiPAP and nebulizer. Her chair must be close enough to another outlet for her airway clearance machine.
4. Wonder if my child was going to die. Yep, I never expected that one. But more than once, a bad news talk from a doctor left me wondering what was going to happen and praying Jaycee would live.
5. Buy diapers for nine years and counting for the same child. Thankfully, she just needs them at night.
6. Carry a bag with a change of clothes for my 9-year-old when we go out. Now her accidents are rare, but they can be expected if she’s in unique or stressing situation.
7. Perform so much speech therapy on my own child. As a speech-language pathologist, I never imagined using my training in language, apraxia of speech, and feeding treatments on my own child.
8. Interpret my child’s attempt at communicating with others for years. Around me, Jaycee uses many signs, gestures and some word approximations. I never imagined being an interpreter for my 9-year-old child, but I’m happy to do it.
9. Dread a phone call from my child’s teacher so much. Due to Jaycee’s breathing issues, I hate to see the school show up on my caller ID. Let’s face it, school professionals usually don’t call with good news, but I’m worried a call from them means Jaycee’s breathing is in trouble.
10. Be so proud of someone who doesn’t achieve the typical things. There’s no “My kid made the honor roll” celebration or a high-five because she made a sporting achievement. But I’m proud. I’m proud of her efforts. I’m proud of any attempts she makes. I’m proud of her Special Olympics competitions. I’m proud of her trying to write her name. I’m proud of her for saying her 15 words. I’m proud she can put soap in the dishwasher. Her small victories make me proud.
Maybe parenting Jaycee hasn’t been everything I expected. But, that doesn’t mean that it hasn’t been worthwhile and fulfilling. I like being Jaycee’s parent. Jaycee is always good for a hug and a kiss. She is the first one to notice if I have any kind of scratch or injury and responds by signing “mom hurt” followed by a soft kiss. When she is sad or upset, “mama” is the name she always calls, and that always makes me feel good. But beyond that, she’s expanded my parenting experience. I am capable of completing more odd tasks (like measuring a bald spot) and managing more intense emotions than I ever dreamed possible.
Follow this journey on A Special Purposed Life.
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