Days like today draw a blow to me equivalent to a punch in the gut. We had Olivia’s follow up with her pediatric physical medicine specialist and orthopedic surgeon. We have been exploring noninvasive treatments to treat pain and discomfort related to hip subluxation (when the “ball” of the hip begins to drift out of the “socket”), in an attempt to buy Olivia some time before another extremely invasive surgical procedure.
Hip subluxation is another condition that develops as a direct result of Cerebral Palsy. Muscles in kids with CP, who exhibit high spasticity, like Olivia, are in constant battle with the bones of the body. As the body grows, the tight muscles keep pulling and adding pressure to the bone and joints. This leads to the development of scoliosis, hip subluxation, and many other structural problems within the body. The most common interventions are an assortment of pain medications, orthopedic intervention in the form of surgery, various adaptive equipment, physiotherapy and occupational therapy. When the less invasive approaches are exhausted, surgery is the next recommended option.
In the past, our very brave girl has been deeply affected by surgical interventions, often leading her to being admitted into pediatric intensive care units post surgery, where nurses and doctors worked tirelessly to gain control of her pain. These moments were filled with fear when her heart rate reached dangerously high levels or when her little spirit seemed so lifeless and weak as she struggled to recover, we didn’t know if she would come home. These memories are fresh in our hearts and to think we may be revisiting these moments again, well…this Momma is devastated.
I mean, how does a parent decide…really? No parent wants their child to live a life of pain, but the road to lessened pain is paved by intense and invasive pain…AND, there is no guarantee that the surgery will work.
So tonight, as I sit snuggled in tight, holding my girl close and breathing in her freshly shampooed hair while she sleeps; my mind and my heart struggle to know what is right. No decision needs to be made tonight; not even tomorrow; but one will need to be made. If we do nothing, there can be long term affects. If we do something, it may work or it may not and she still may develop issues as a result of the surgery. The surgery may not be a one time deal. She potentially could have this done and need it done again in a few years.
As much ground she has gained socially, and the minimal ground she has gained physically; the constant remains, Cerebral Palsy will be the devil she fights daily. With every ounce she has fought to keep, CP threatens to take it away.
Olivia has always been our warrior. She wakes up each day with a precious smile and a heart that warms everyone around her. In a world where our words are our greatest tools, she has spoken to the souls of strangers despite her lack of speech and has brought education and spotlight to Cerebral Palsy and disability. She has, and always will be, the bravest person I know. So, tonight, we will steady our pace, read and re-read all the literature we can and keep asking and exhausting all options before moving forward.
To all the other Mommas and Daddys out there, who are chasing these fears and struggling to do what’s best, I feel you. May the love and strength we have for our children guide us through these dark times and may we find that strength while holding our little one’s hands through metal bed rails, while trying to maneuvre through IV lines and drown out the constant noise of beeping machines. The life of raising a medically fragile child instills with it a deep respect for life’s delicacy, paired with the love for life’s resilience.