A Complex Journey

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!

Heather Cole’s blog can be found at http://medicallycomplexfamilies.blogspot.com/. Heather and her husband Jon, daughters Leah and Maggey, and son Rhyse (Noonan Syndrome PTNP11) live in Allendale, Michigan. Jon works as a purchasing agent, and Heather is a stay-at-home mom. After hitting the age of forty they decided it was safe to say, “we’re done.” Less than a year later Rhyse was born! Absolute joy immediately turned into absolute trauma, agony, and a myriad of emotions. Heather instantly fell in love with her little man—emphasis on little—and yet the journey beyond mere survival lasted over two years. Now, at four years old, the diagnoses continue to stack up, and yet that little stinker butt has a zest for life and all things fun and silly and sneaky! He’s passionate about anything on wheels, especially emergency vehicles and has all his tons of toy vehicles memorized to the minutest detail. He has shown himself an overcomer, never ceasing to challenge Heather to be one too.