A lot of people are asking my opinion of the recent news story about the wife who left her husband because he refused to give up his newborn son with Down syndrome. This is my response.
To be brutally honest, five years ago if my husband had offered to leave me, run away to a beautiful place and take care of my baby I would have happily agreed - and the world would have shamed me, just as they are doing to this mother.
We can't judge her. You see, nobody knows anyone's story. And my story (five years ago) went like this.
It is rare to have a baby born with Down syndrome. It's rarer to have a baby born with translocation Down syndrome. And it is extremely rare to have a baby with translocation Down syndrome born to a Doctor of Pediatric Occupational Therapy.
What this means is that I wholeheartedly dedicate 8-10 hours a day to providing evidenced based top notch occupational therapy services to children birth through 26 years old. What the world wouldn't have known about me is that I was extremely scared about if I'd have the energy to provide therapy to other people's children all day and then come home to provide a few more hours of therapy to my own child. And knowing me, I'd dedicate countless nighttime hours researching endocrine articles on growth hormones, otolaryngology articles about sleep apnea, adenoids, and tonsil removal. Cardiology articles about valve repairs, evidenced based oral motor therapies, nutritional therapies, and alternative therapies. My list of searchable interventions would consume my mind and I knew in my heart that I wouldn't be capable of handling both jobs or basically being on call 24 hours a day - every single day - for the rest of my life. So yes, if someone was willing to take that pain away from me in an instant, I would have accepted.
Back to that mom - Everyone has their own story and we don't have a right to an opinion about her choices.
Now, hold tight. There's a second part to this. I am now five years into my journey and if my husband offered to leave me, run away to a beautiful place and raise my baby I'd do everything in my absolute mommy bear claw power to stop him -- Because five years ago I didn't know what I know now about this bittersweet journey.....
And that revelation is critical.
I cannot believe there was a point in my life where was I was willing to let all of this all go.
It's obvious now, I was not properly educated. And that mom, that community, that country, has not been properly educated.
It doesn't matter if eyes are round, fingers are short, noses are flat, or ears are small. Underneath all of those superficial characteristics is a beating heart, warm blood, and a brain driven by love, compassion, loyalty, pride, humor, and determination.
That's my opinion of this story - shame on you for judging.
Our Down syndrome community (above all) knows what it feels like to be judged.
I challenge you to rethink those negative words towards that fearful mom and recognize that you need to be a part of the solution, not a part of the problem. Our group needs band together as a team and trudge forward with our mission strongly placed at the forefront and: Teach humanity how to embrace individuality.
To be brutally honest, five years ago if my husband had offered to leave me, run away to a beautiful place and take care of my baby I would have happily agreed - and the world would have shamed me, just as they are doing to this mother.
We can't judge her. You see, nobody knows anyone's story. And my story (five years ago) went like this.
It is rare to have a baby born with Down syndrome. It's rarer to have a baby born with translocation Down syndrome. And it is extremely rare to have a baby with translocation Down syndrome born to a Doctor of Pediatric Occupational Therapy.
What this means is that I wholeheartedly dedicate 8-10 hours a day to providing evidenced based top notch occupational therapy services to children birth through 26 years old. What the world wouldn't have known about me is that I was extremely scared about if I'd have the energy to provide therapy to other people's children all day and then come home to provide a few more hours of therapy to my own child. And knowing me, I'd dedicate countless nighttime hours researching endocrine articles on growth hormones, otolaryngology articles about sleep apnea, adenoids, and tonsil removal. Cardiology articles about valve repairs, evidenced based oral motor therapies, nutritional therapies, and alternative therapies. My list of searchable interventions would consume my mind and I knew in my heart that I wouldn't be capable of handling both jobs or basically being on call 24 hours a day - every single day - for the rest of my life. So yes, if someone was willing to take that pain away from me in an instant, I would have accepted.
Back to that mom - Everyone has their own story and we don't have a right to an opinion about her choices.
Now, hold tight. There's a second part to this. I am now five years into my journey and if my husband offered to leave me, run away to a beautiful place and raise my baby I'd do everything in my absolute mommy bear claw power to stop him -- Because five years ago I didn't know what I know now about this bittersweet journey.....
And that revelation is critical.
I cannot believe there was a point in my life where was I was willing to let all of this all go.
It's obvious now, I was not properly educated. And that mom, that community, that country, has not been properly educated.
It doesn't matter if eyes are round, fingers are short, noses are flat, or ears are small. Underneath all of those superficial characteristics is a beating heart, warm blood, and a brain driven by love, compassion, loyalty, pride, humor, and determination.
That's my opinion of this story - shame on you for judging.
Our Down syndrome community (above all) knows what it feels like to be judged.
I challenge you to rethink those negative words towards that fearful mom and recognize that you need to be a part of the solution, not a part of the problem. Our group needs band together as a team and trudge forward with our mission strongly placed at the forefront and: Teach humanity how to embrace individuality.
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