Hi Everyone,
Can you believe it’s graduation week for Corey?
I remember meeting with our High School team when we first moved home June of 2011. We worked out the services that Corey would need. PT, OT, Speech, Academic and other services that would be available if we needed them but were not ready for at that time. We set up the IEP and discussed the length of services that would be available. When our High School supervisor told me they would provide all these services through Corey’s 21st year my first thought was, ‘Okay, we just have to get her fully recovered by the time she’s 21’!
I was terrified. We had just been discharged from Bryn Mawr, we were fighting our primary insurance for home rehabilitation, and we were meeting and working with nursing staff that lived with us 20 out of 24 hours a day. Suddenly, I was not just mom. I was case manager, nurse manager, student of PT, OT and Speech therapy, home organizer, supplies manager, research specialist and appointed General to create and lead the supporting troops into this battle of recovery. PS…I missed boot camp training and they sent me into battle anyway! Corey was still considered minimally conscious and low level.
My mission; recreate the acute level of rehabilitation, 15-18hrs a week of professional services, to give her the best opportunity to recover. We would supplement the rest.
Graduations are one of those milestones in life that cause you to reflect. Think back; Corey came home unable to speak, swallow or move any limb other then her right leg from the knee down. She couldn’t smile or open her mouth to brush her teeth. Her bedroom was our family room. Hospital bed, hoyer lift to move her from her bed to the wheelchair, baby changing table that doubled as a nurses station with medications, needles, sterile pads, swabs, adult diapers and a host of supplies that reflected a small pharmacy strategically placed to assist ‘our staff’. Behind her bed, a feeding pump (as I write this I can still hear the noises it would make as we primed it and the click and swirling noise it made as it incrementally pushed her “food” through the feeding tube into her belly…some sounds you never forget),
A three month dry erase calendar hangs vertically on our garage door in the kitchen; the Control Center of the house. It looks like a piece of art work with a different color reflecting each important activity in our life. Black for the month/dates, red for mom, orange from caitlin, purple for Corey (of course), blue for JohnPaul, green for insurance therapy, royal blue for school therapy, pink for doctor appointments, maroon for nursing shifts, brown to remember family birthdays/anniversaries. This calendar has kept us organized and focused. Every completed day gets an X. The calendars are rotated at the end of the current month. The process of wiping clean the top calendar, to slide up the next two months, then reassigning the top calendar to the bottom, is a great tool but has kept us in the vortex of this recovery. I can’t believe how much time has gone by and yet in the grand scheme of time, it’s not been that long.
That’s the gift that milestones like graduation gives us. We work every day; day in and day out. Some days it literally feels like a stone we’re pushing up hill for a mile. Until we notice the highlighted block on the calendar celebrating the day we’ve been working towards. This certainly is NOT our finish line but another major milestone honoring Corey’s path towards healing, growth, independence and rebuilding her life! xoxo