We had all let Riley down: doctors, therapists, orthotists, hospital staff and his own parents. While he was spending his surgery recovery period in a maple leaf brace a pressure ulcer was carving itself along Riley’s spine. I had released Riley from the brace as soon as clearance was given… but it was far too late and the damage was done.
Tag Archives: medical
Riley leads a sedentary life. Sedentary is not exactly how I think of Riley. He has a lot of energy and being Riley takes a lot of energy. The reality, however, is that his activities are confined primarily to a seated position. My yoga instructor, Matthew, recently observed that “our body adjusts to how we live life.” In Riley’s case the body falls apart to how he doesn’t live life: no running, no playing, no exercise…
Since his very first hours, Riley has taught John and I to be meticulously aware of his comfort and health far beyond the needs of any typical child. Each special needs child has a condition and experience unique to themselves; however, our shared experiences may still benefit one another as caregivers and attentive parents. This is especially relevant when addressing medical issues. There are also times I must remind myself to remain vigilant over every aspect of my son’s health no matter how long the list becomes.
Our children go through this life facing things we would never have been able to imagine, yet they continue to grow and thrive defeating all odds. The longer they stay with us the more they teach us and allow us to grow with them. They are an inspiration even to the professionals that treat them.
As this year comes to a close I take this this moment to reflect on our experiences; some good, some bad; nonetheless all lessons in life.
Riley and Ronan are seen here hanging out with Miss Southwest Florida 2012, Miss Caroline Kay Dixon, at Freedom Waters Foundation’s – Heels & Reels last month. Miss Dixon was very kind and sweet with my boys and was happy to don her crown again after a very full event for a photo.
One little battle after another. This special needs life still feels like a war to me. A never ending taking up of arms one moment and protecting my child the next. This week they are just tiny little battles but I have become weary of heading out each day.
As a mom of a special child I am resigning myself to the fact that there may be some things that occur to our children that are beyond the scope of knowledge of the medical profession. A very difficult “pill” to swallow as we want to believe that they can find the source and “fix” or prevent these things from happening…
As I write this, we are on day 6 of hospitalization from yet another fever episode. Kaet, without warning started showing signs of an “episode” and the school staff called 911 and then me. The school nurse describes the episodes as turning cyanotic and grey/clammy skin color along with respiratory distress. By now (as this is the 3rd time this year), we know that means the fever is coming; the nurse checked right away and got a reading of 99 degrees, shortly before EMS arrived she attempted another reading and it was just above 100 degrees; by the time EMS arrived at the ER, she had skyrocketed to 108.1 degrees!! – yes AGAIN, my baby girl’s body was “cooking”.
Summer was always my favorite season. Summer represents freedom: time to explore, travel with family, be with friends, sleep, take new opportunities, learn new skills, share… Windows are thrown open to the summer breezes and to watch the lightning bugs dance, colors are more intense, night sounds are more musical…
Summer is something very different to me now. It has become oppressive. School is out and Riley is with me full time. We close the windows and blinds against the heat that is so difficult for Riley to tolerate. Driving out is only with necessity such as the medical appointments I have saved up for these no school days.