DON’T STOP BELIEVING

Today is World CP Day.

I like that there are agencies and organizations that strive to educate and inform the public about cerebral palsy. It affects millions of families and individuals, some more obviously than others, and from my experience is often misunderstood in terms of the perception most people have about CP.

For my family, everyday is CP Day.

Cole came into this world not breathing. Not breathing for twelve minutes. The lack of oxygen to his brain caused injury. In his case, his physical abilities are largely compromised. He is non-ambulatory, non-verbal, g-tube fed, and has fine and gross motor skill compromise. His cognitive function is fully in tact. He is bright, witty, compassionate, loving and kind. He has delays both socially and educationally, largely due to the effects of the physical disabilities, but he has friends and loves school.

 

From birth, doctors prepared us for everything he wouldn’t, couldn’t or shouldn’t do or be. Their collective portrait was not particularly optimistic. We believed otherwise. We poured ourselves into doing everything we could to make sure he had every opportunity to lead a full, happy life.

There’s no handbook for raising a child like mine. There are doctors, friends, teachers, peers, who you can look to for advice, experience and support, and there are more and more non-profit opportunities for social activities, sports, and fun for kids with special needs. There are endless sources on the Internet now and on line and off line parent support groups that give strength, support, and experience too.

There are also countless therapies, treatments and interventions that can help a lot, or more often nominally, and it’s an easy source of parental angst for me, and others I know, how to know whether you’re putting your child through hours and hours of effort that may not go anywhere, for yourself or for the good of you child, and whether or not there is more value in finding some sort of balance between therapies and interventions, and providing your child with a semblance of a normal childhood, spent with friends having fun and enjoying life. It’s a catch-22 situation because you’re always left with that nagging, what if we had tried “XX”? Or maybe we should be doing “YY”.

I grapple with those nagging what if’s but I also do believe that we’ve managed to raise a boy who is exceeding expectations of what his life would be like, and who gracefully handles the lot he’s been handed. It’s not all sunshine and there have been dark periods in both his life, and in our family life, but overall, he’s leading a life that is not wholly unlike that of his typical peers, and for that I am grateful.  I will never stop believing in the power of Cole.  He challenges me to think beyond myself and inspires me to dream.

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