T21 Tuesday
It's Tuesday.. time for some chat about T21. In case you aren't familiar with T21, it's that fun little sumthin extra that our LB has. The 3rd copy of her 21st chromosome .
Randomly, I got a letter from the doctor that delivered LB this week. She was letting her patients know that she is no longer going to be in practice after 32 years. Shocker. That year stuck out to me. If you remember or have read the post about my 6 week followup, she wasn't so kind. When thinking of this number, it dawns on me, that's why she was so jaded.
This post might be for the moms or readers of someone who has a person in their life with an extra chromosome AND I could very well be stereotyping here, but I find the older generations are the hardest to adapt to Ds. Her words "If I had to build the perfect person, this wouldn't be it." If you think about it, her generation grew up in a time that institutionalized people with Ds and used words like mongoloid. Seriously?
It causes me nausea and I shiver when I think about someone calling my lil Bug that word. I cry each time I think about someone labeling her as nothing but perfect. Or even the R word. I can't even fathom that word and my daughter used in the same context.
I actually brought up this term at a recent dentist visit. It was for LB and was her first time to visit the chompers Doc. The office specializes in pediatrics and on the form it had the label 'mental retardation' as a term that you could check for a diagnosis. I was on the phone with the lady that schedules the visit and spoke up to say - "I noticed something on your form. This term is no longer accepted nor should be used in the medical field. It's called Rosa's Law." I think she was clearly shocked that someone said something and stuttered to say, "Umm, Ok. We'll look into that." Now, if you know me. I will remember this a year from now and make sure it's no longer in there. I might even check it out on their website beforehand. Just sayin.
Speaking of irony, I also have been working on the DSA website for our Buddy Walk. When looking for an email, I again very randomly, stumbled upon the email I sent to the DSA when we got LB's diagnosis. It was March 10th, 2011. I had no idea that World Ds Day was that month. Nor was I looking for this email or remembered that I kept it. Reading it brought back so many memories. Was I scared? To death. Was I worried? To the bone. But I was hopeful and she was the 3rd person I contacted after my husband and my mom.
Thinking back to those days seems like so far away. I was in such a different state. I had no idea what to expect. I questioned God; I cursed and cried, WHY ME; WHY US? I had so many unknowns and fears. Before that call with our diagnosis, the one thing I was most scared about... that LB was allergic to peanut butter. Now, I praise God for seeing something in me as a mother that I didn't; for believing in us as parents before we did and for blessing us with one of the most precious gifts I could ever receive. Our Leighty Bug who is NOT allergic to peanut butter.
Until next time..
Shona
Randomly, I got a letter from the doctor that delivered LB this week. She was letting her patients know that she is no longer going to be in practice after 32 years. Shocker. That year stuck out to me. If you remember or have read the post about my 6 week followup, she wasn't so kind. When thinking of this number, it dawns on me, that's why she was so jaded.
This post might be for the moms or readers of someone who has a person in their life with an extra chromosome AND I could very well be stereotyping here, but I find the older generations are the hardest to adapt to Ds. Her words "If I had to build the perfect person, this wouldn't be it." If you think about it, her generation grew up in a time that institutionalized people with Ds and used words like mongoloid. Seriously?
It causes me nausea and I shiver when I think about someone calling my lil Bug that word. I cry each time I think about someone labeling her as nothing but perfect. Or even the R word. I can't even fathom that word and my daughter used in the same context.
I actually brought up this term at a recent dentist visit. It was for LB and was her first time to visit the chompers Doc. The office specializes in pediatrics and on the form it had the label 'mental retardation' as a term that you could check for a diagnosis. I was on the phone with the lady that schedules the visit and spoke up to say - "I noticed something on your form. This term is no longer accepted nor should be used in the medical field. It's called Rosa's Law." I think she was clearly shocked that someone said something and stuttered to say, "Umm, Ok. We'll look into that." Now, if you know me. I will remember this a year from now and make sure it's no longer in there. I might even check it out on their website beforehand. Just sayin.
Speaking of irony, I also have been working on the DSA website for our Buddy Walk. When looking for an email, I again very randomly, stumbled upon the email I sent to the DSA when we got LB's diagnosis. It was March 10th, 2011. I had no idea that World Ds Day was that month. Nor was I looking for this email or remembered that I kept it. Reading it brought back so many memories. Was I scared? To death. Was I worried? To the bone. But I was hopeful and she was the 3rd person I contacted after my husband and my mom.
Thinking back to those days seems like so far away. I was in such a different state. I had no idea what to expect. I questioned God; I cursed and cried, WHY ME; WHY US? I had so many unknowns and fears. Before that call with our diagnosis, the one thing I was most scared about... that LB was allergic to peanut butter. Now, I praise God for seeing something in me as a mother that I didn't; for believing in us as parents before we did and for blessing us with one of the most precious gifts I could ever receive. Our Leighty Bug who is NOT allergic to peanut butter.
 |
| but loves oreos |
Until next time..
Shona
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