The power of prospective
By Amanda Ripsam
The day my perspective change on my daughter rare genetic diagnoses.
One day sitting on a hospital bed next to my daughter as she was hooked up to wires for her video eeg for the fith or sixth time to discover the cause of her seizures. I found myself in the poor me, whose is me self pitty stage. I figured that was the stage before acceptance.
Acceptance is the stage after moving out of hopelessness into hopeful for the future.
In this moment I was hopeless.
My daughter scheduled for another over night video eeg.
The study pior to this video eeg the doctors had her sleep deprived for 24 hours. This time sleep deprivation was 48 hours although my husband told me go a head rest my guilt of passing on the disorder ate away at my internal core. The nerve of hyper alert that parents who have special needs children get I was locked into. I was sleep deprived for a week and finally started to feel the effects of whoose is me. Why me? Why us? I felt like I couldn’t handle it much longer watching my daugher cooped up in a hospital room during the day with wires her head and body covered her every moved watched. In hopes she has a seizure which of course never happens during controled enviroments at a hospital.
Sitting in the hospital bed I wept while Bella was finally able to sleep.
I had child life come in to relieve me so I could refule on more caffeine.
My husband was working at the time and I had walked down the hall to compose myself…
As I walked to the family lounge in the pediatric ward I met another mother who had a child in the cancer ward.
The childrens cancer ward a place I was greatful my daughter was not in.
It could be worst it will get better I now tell myself. My moment of hopelessness washed away.
Sitting in that room with pitty for myself while this mom is going back to her child who is also hooked up to wires but her child is fighting for life and hooked up breathing tubes. Her child was in a ward that is isolated.
I went to thank the mom but I couldn’t get past the doors to the cancer ward.
The locked doors seperated the video eeg unit because the cancer wards are locked off meaning I could not get back there unless I was family.
I looked inside the ward and saw tiny children with bald heads rolling down the hallways in wheelchairs. The children I saw were younger then my daughter who was four at the time and the hopeless went to hopeful after I cried tears of thankfulness. I went from hopeless to hopeful in that moment.
It could be worst and it will get better is what I learned from my daughter video eeg that day. My suitation didn’t change but my perspective has.
For more of my stories and writing of what life is like living with a rare disorder 22q11 check out www.mommiesquietplace.com