As parents of a child with cerebral palsy, Bryan and I have frequently used the phrase, “as long as I’m able”. We knew we would continue to climb the ladders and go down slides with Roa, carry him up flights of stairs to change his play environment and keep up with his brother, and hold him up to bat at out of reach objects like the leaves in the trees or the basketball hoop. As long as our strength and stamina matched his rapid toddler growth, we would do this. As long as we were able, we would play tag or Duck Duck Goose with other children; one of us acting as his “walker” supporting him through movements as long as our energy allowed.
We have always said, “as long as I’m able” never dreaming that the time would come where our determination and the power of our love would be challenged by our ability.
Bryan and I are forty, fairly fit, and motivated. Bryan works out when he can. I walk daily and squeeze in some yoga when life allows. Yet, carrying, supporting, lifting, and moving with Roa daily is taking it’s toll. Two weeks ago, I was lifting Roa from his floor chair, twisted in a not so wise position and, OUCH!… pain in a way I had never experienced before. Sciatica, my doctor told me. Treatment: medication, chiropractic care, keep up the walking, but limit the lifting for awhile.
Limit lifting? Impossible in our life. We move with Roa as much as we move alone. Yet with the pain during sleep and discomfort in play, I have started to limit some of what I do with Roa. I’m trying to
think on the positive. Be optimistic- it’s more time I can do MNRI techniques, craniosacral work, or preschool projects. Yet Roa wants to move. And go. I can’t do it as much. It makes us both sad, but this is life with a growing boy with limited independent mobility.
We have been waiting, patiently for a trial with a new walker for Roa to allow more independence in play and…AMEN…this week it arrived. The Ormesa Grillo is a gait trainer new on the market that has a sit to stand mechanism. It has all terrain wheels that move outdoors with ease! It has a variety of arm/hand support and trunk back support options that can be adapted to Roa’s muscle tone needs of the day. This new walker came just at the perfect time. Our boy has to find new ways to move, play, and interact.
We still have a sadness that doesn’t leave. The realization is setting in that our days of climbing with Roa through the play-lands and bounce houses are numbered. However, we will continue to look for options for Roa that keep him involved in typical play as much as he can.
Just a day ago, I was asked how my sciatica was doing. I replied with the typical, “much better” answer. Yet, later in discussion with Bryan, it dawned on us; parents of children with physical disabilities live daily with a certain level of pain. It is probably a pain that others would view as very bothersome and might call for a day of rest with an ice pack and some Bengay. We just view it as our row to hoe. This is life and we can’t take a break. We just find ways to cope for as long as we are able.