Sam continues to make progress in rehab but we still have good days and bad days. A good day is a steady gait and Sam walking independently. A bad day is Sam limping, leaning to one side, feet turned out, crawling and asking for his wheel chair or spending a good share of the day reclined in his bed, on the recliner or on the floor. For the last 5 days we have been stuck in a bad pattern which worries me. Sam is leaning to the right, limping a lot and doesn't want to weight bear much on the left side. Sam is having some type of pain or discomfort but simply modifies his positions to accommodate, he doesn't complain and he never tells me it hurts. Sam just deals with whatever comes each day and he does it with a smile. To a stranger he would seem his typical self. To me his Mom, I notice the change in his attention/focus, the audible sighs when he gets into a more comfortable position, the turning out of his foot and change in his gait, the way his spine curves to the right, his reduced patience, the tension in his face when he steps down on the left side, the change from standing to sitting when he gets dressed...the way he runs his hand over his bike but won't attempt to get on. We will be seeing his surgeon and rehab doctor next week.
When Sam reads he becomes very fatigued. He yawns a lot, looks around, tries to refocus and sometimes he begins by reading the word to the right of the one I am pointing at. He also holds his Ipad way too close to his face...could be a habit or it could be a vision issue. We will be seeing his optometrist next week.
Sam spent 7 weeks in bed with his body brace on and he couldn't wear his hearing aid. His speech took a little backslide and we are having some difficulty regaining ground. His speech therapist suggested a tympanogram and having his hearing rechecked to make sure there is no fluid in the ears or that his hearing issue has worsened. We will be seeing his audiologist in the next few weeks.
With Sam requiring use of his walker and his wheelchair for longer than I anticipated I decided it is time to break down and get a handicap parking pass. I'm filling out the paperwork and will take Sam into his Pediatrician to have it signed within the next couple of weeks.
Add to this schedule 2 speech appointments each week, 3 OT aqua therapy appointments each week, 1 hour of homebound public school instruction each day, PT exercises each day and Sam's homeschooling and NACD program for 3+ hours each day...and I begin to spiral.
I feel that uncomfortable, gripping, heart breaking feeling that comes with parenting a child with multiple special needs. In just a moment...if I thought about it enough...I could get to that point where I want to withdraw, curl up into a little ball and let that feeling of being completely overwhelmed wash over me. No one would blame me.
But then I look at Sam, how he continues on...how he perseveres through pain, through hearing issues, through vision issues, through processing issues, through his daily life and all the challenges and struggles that come with it...and he smiles.
Today as we were driving home from our last therapy appointment and my mind was reeling from everything I heard today...Sam tapped me on the shoulder.
He said, "Mom, Mom".
I answered, "Yes Sam".
He said 4 simple words that touched my heart and soul and made me forget every thing I was thinking.
He said, "Love You My Heart" which in Sam speak means "I Love You With All My Heart".
I replied with tears in my eyes, "Thank you Sam and I love you with all my heart too!"
He smiled his confident smile and returned to looking out the window. The challenges can never equal the blessing....that is Sam.
Posts
This made me cry and touched my heart. You are very, very lucky.
ReplyDelete