by Heather Cole
This journey is so long, the life lessons sometimes so hard. Four years ago I plunged blindly right into the role of caregiver without a stitch of knowledge, experience, or understanding of how much my life would be changed and my definition of normal or typical redefined.
In a recent Facebook feed, a mom threw out some questions about her daughter, inquiring on certain traits that might point to a “problem” yet to be discovered by doctors. She wrote, “I fought the idea for a long time [that something else was amiss] because I wanted her to remain as normal as possible.” As normal as possible?
Wow, those words really challenged me to think about where I am in this journey with a son who is medically complex–a child with a syndrome. Do I fear discrimination? Do I fear disabilities? Do I–in the deepest recesses of my heart–wish he were normal?
I spent some quality time mulling these questions over in my mind. My love for my son is crazy fierce. My answer is without question, NO. I do not fear discrimination, disabilities, or wish for typical. And then out of my mouth, today, I hear myself expressing quite the opposite.
In no less than two minutes Rhyse had two messy diapers. And what did I do? Ask him–no, beg him–to please be a big boy and start using the potty! I know full well that some of his medical conditions do not allow for bowel control, at least not historically. Between long bouts with C-diff and chronic ulcerative colitis, let’s just say loosey goosey could be his nickname!
With a rather serious look on his face he says, “Sorry momma, me nose.”
“Your nose did it?” I asked.
“Yes! Me smeeze and me go stinky,” he answered in a matter-of-fact tone. I didn’t know whether to laugh or cry! Laugh at his heartfelt, truthful response, or cry because I made him feel guilty for not being like other little boys his age. I held my emotions in check and said, “Thank you for explaining that to me so I can understand.”
Rhyse replied, “No problem, mom.” Four years old, a child with Noonan syndrome–a child who knows only of chronic conditions, shots, and already a lifetime of doctor visits–let me know he isn’t going to pop into normal anytime soon, and it’s OK!
What a joy it is to learn our lessons not from hardship–once in a while–but from the very ones who are, indeed, “different.”
In that moment I realized that yes, there is still a part of me that desperately wants him to be normal–to be typical. Ouch. How in the world do I navigate through this thing called a syndrome? How do I challenge him to go beyond what “might be” and reach for what “could be” without destroying his confidence in who he is? What if I irrevocably damage his little boy psyche by stupidly asking him to “be like other kids his age?” Again, oh, the joy of learning!
In my four years as a mom to a child with a syndrome, I have come to realize the journey with medical complexities is just as messy as the journey of parenthood. And yet the two are not the same. I am a parent. I am a caregiver. I don’t understand how we moms and dads can so easily jump in and out of each title, sometimes a parent, sometimes a caregiver, and sometimes the lines blur and we are both.
As I begin to understand how I function in the both the role of parent and caregiver, I hope to be more aware of my words and actions. My girls do not need a full time caregiver; they need a mom. My son needs a full time caregiver and a mom, but not a mom who is only a caregiver. Just where is that parenting manual anyway?
I have so much to learn from others, and yet so much to learn from the daily moments with all three kids. What a wonderful, terrible journey parenthood can be!