Last night, my daughter Faith went to PROM. I never would have dreamed years ago this night could have happened. When Faith was born, she was what the doctors termed, “medically fragile”. They knew she had some sort of syndrome that impacted multi-systems of her body, but they couldn’t name it. So, my little girl spent much of her first two years in and out of the hospital. Though she did not have polio, she slept in an iron lung to keep her breathing when she slept. She wore oxygen to keep her SATS up during the day. At night she was wired up with an apnea monitor and cardiac monitor because her heart-rate fluctuated dangerously low when she constantly forgot to or, her airway was obstructed, and she couldn’t breathe. She endured three painful surgeries and was tube fed for a while. A bought with bacterial meningitis could have taken her from us — but she pushed through that crisis like all the others. She was globally delayed and even when all the tubes and monitors were finally gone, she went through years of PT, OT and ST. Yes, Faith’s first years were filled with challenges and how well I remember her tears, pain and suffering.
Even now, Faith does not have the endurance that her friends do. Many of her struggles are invisible to those around her. She lives with chronic pain that she manages like a champ. When her joints painfully swell she pushes through her school days, and, when her tummy distends and doesn’t work like it should, she still wears a smile on her face. About once a month though, her body just shuts down and won’t push any further. It demands she spend a few days in bed resting before she can charge ahead again. My Mama’s heart always hurts so deeply for her on these days – when the world keeps on going but she is utterly helpless and must stop. As I massage her painful joints, I don’t see a helpless broken child though, but rather, an incredible overcomer. And, though it is hard sometimes, I know it is my job to gently nudge her back into the world when she is able so she can continue to reach for her dreams and ultimately soar.
Finding just the right balance of when to let her crash and rest and when she needs to push isn’t always easy. For example, in March Faith headed off to Nationals with her Symphonic Band. This was a huge honor for all involved. Still, I knew, the travel, the late nights, the demands for the rigorous program would likely wear Faith out. And wear her out it did. Even though I worked in a couple of extra rest days for Faith on the way home, her body simply collapsed. Many of her joints doubled in size, her face puffed up, she developed a low-grade fever and her gut just stopped working. Though she is in her junior year of high school and missing school is not ideal, she missed a full week of school recovering.
You HAVE to Let Them Try
Do I regret sending her to Nationals though? Of course not. We, parents of kiddos who live in this strange land called “mildly medically fragile”, need to learn to let them live. We need to let them grow, find their passions and joys. As they get older, we need to let them push – even a little too far – so they can learn their limitations how to manage them wisely. I passionately believe if we err, we must err on the side of letting our kids live life instead of erring on the side of insulating them in bubbles and never letting them try.
Faith is still sleeping this morning. Her PROM night was magical. She and her friends had the time of their lives. Undoubtedly she will say any pain she awakens with was totally worth the experience of being with them. Letting Faith try — letting her push through — even thought there is sometimes a painful price to pay – is teaching her powerful lessons; embracing life to the full and pushing for hopes and dreams may be painful but that pain often bears great fruit and it is worth striving for.
Soar Faith Soar
I’ve learned so much through the almost 18 years I’ve been blessed with loving Faith. Her determination and courage has inspired me. I’m honored to be her mom and I can’t wait to see the figurative mountains she climbs and challenges she overcomes as a young adult and beyond. If you are a Mama of a medically complex kiddo and you don’t know what to do, trust God. He will give you the wisdom of when to protect and when to let go. He will guide your steps. Someday, you too, will marvel at all your little one has done!
So, soar Faith soar. God’s plans for your life are profound and exciting. I can’t wait to see it all unfold!