In November, almost 16 years ago, my 4th child was born at 23 weeks gestation. The third of four premature children I would give birth to.
At 1lb and 3 ounces, an apgar score of 2, he had little chance of survival. My smallest baby. My fragile, precious, tiny prince that would not likely live.
6.5 months later, my still tiny baby boy, came home at 6lbs! a porker! With a VP shunt in his head to drain CSF into his little tummy, severe ROP resulting in big-time vision loss, periods of apnea’s and Brady’s where he would turn blue and need a jolt to breath again, a host of life-sustaining medications, serious loss of white and grey brain matter loss from a grade 4 IVH and his random tonic-clonic (grand-mal) seizures down to a minium.
Now what? I have a Son with severe disabilities. And I have no idea what the future will hold.
Multiple surgeries, countless hospital stays, dozens of MRI’s, literally hundreds of Doctor appointments and almost 16 years of never having an answer from anyone of what is next, what to expect, what to accept and what to hope for.
I have learned over the years to answer those crucial questions for myself because really no one else knows, no one else can answer. The Doctors mean well (most of them), but they do not have the crystal ball I would have died to have.
Looking back my chest tightens at the memories of how many oceans of tears I have cried, the screams that have volcanically erupted from my throat when considering how unstable and unfair life really can be and the pain deep in my soul I felt every day wondering if I could have done anything different to prevent all of this.
I feel differently now. Maybe I am hardened from fear relentlessly rubbing and gnawing at my heart for so long. Maybe I am wise from the bazillions of words I have read to support my Son, my other children and myself. Maybe I am disassociating the realities I still cannot bear to let sink in through my armour, my needed protection from devastation. Likely, I am just a Mom. A Mom who loves her Son, her children, beyond the expression of words.
I am a Mom to a Son with Special Needs. And I answered my own questions.
What is next? Many possible seconds, minutes, hours, days, years, and decades with my son. To me, it doesn’t matter. I will take and cherish all I can get. I cannot control time. I have no power and nor should I have.
What should I expect? I expect things to be hard. I expect things to be amazing. I expect tears, pain and sorrow. I expect joy, victories and happiness. There will be more appointments, scans, questions, surgeries, achievements, smiles and an abundance of love.
What must I accept? Everything. I must accept that this is the way our lives have been and will be. I must accept that I have little control. I have accepted that I cannot change the past nor can I control what is to come. I accept that I will fight with all I have to pave the way for the best future stone by stone.
What should I hope for? Everything. I will always hope. I will never, ever stop hoping.
My other children born at 41, 27 and 24 weeks gestation are wonderful and remarkably have little residual effects from being born when they were. How is that for incredible? It doesn’t sink in… how am I so lucky to have 4 perfect (I am a little biased) children? My Daughter, my 5th child born at 26 weeks died when she was 7 months old from tumors in her brain. How am I so lucky to have had 7 glorious months with her? Perspective is everything. If you have a Son or a Daughter with special needs you will need to learn this.
You wont get any quotes of wisdom here. No promises that if you do this… you are sure to get …that. Are there miracles? What do you believe? Ive tried a little bibidi-bobbidy-boo, Ive gone to therapy, Ive had some great and NOT so great coping mechanisms. I can’t give you the key to raising a child with special needs. In other blogs, I will give some tips. But here I will not.
My Son has two tumors in his brain. Next, there will be many more scans, trips for appointments, indistinguishable signs and symptoms, missed activities and many cherished moments. I expect to be afraid, to lose sleep, to cry and to hug him tight whenever I can. I accept that I do not know if they will grow again, if he will need the dangerous surgery to drain them and if I will recognize the signs. I hope that I will perfect the balance between being observant and on the ball without damaging his independence and happiness, I hope they will not grow and put him at substantial risk, I hope he will live until he is 99 and have dozens of great-grand kids. I hope many things. I accept many things, I expect many things and next I will smile, stand straight, breathe deep and carry forward because I am a proud Mom of a Son with Special Needs.