Saturday, November 19, 2011

SNSS: They are Both “Special”

Today's guest, Shelley Kramm, is a mover and shaker of the Special Needs Advocate variety. As the Playground Fairy she has been at the forefront of the movement to get inclusive playgrounds built in our communities.

Shelley blogs at I'm Still Standing where she is a font of information, as she writes about wellness and special needs families in general, as well as her own very special family in particular.

And, while Shelley is the mother of older children, she still recalls her daughters' beginnings like it was yesterday.  

Come read her reflections of her girls' rocky beginnings and their supportive special relationship today, here:


They are Both “Special” -  by Shelley Kramm

I have 2 daughters one who I would say is “special” and the other with “special needs” and depending on the day over the past 19 years I would say they have each switched those words several times…

Pregnancy and I do not agree; why I am not sure, my mother gave birth to 6 children over the course of 8 years. For me, not so much…

My OB-GYN actually called me “the girl with the little black rain cloud” throughout my first pregnancy. I spent the first trimester throwing up so much I lost 15 pounds.

I found out I was RH negative (the only thing in common with my mother) developed pancreatitis and major gallbladder issues, my amniotic fluid level seemed to drop to all time lows, and then my blood pressure started to rise and protein began to appear in my urine and I developed full blown Preeclampsia/Toxemia and was admitted to the hospital 3 and a half months before my baby was due.

So not like my mother!

To make a long story short, it was a traumatic birth, 36 and a half hours after my water broke with Pitocin I had a c-section and my first daughter was born at 32 weeks weighing 4lbs 6ozs with NO cry! NO sound… Nothing…. She was blue… resuscitated… ventilated… must have been due to the magnesium sulfate that was controlling my blood pressure and her “life.”

We named her “Sarah” meaning “Princess”… Little did I know how that special Princess would turn into a Queen. The doctors told us she would be “deaf, blind, retarded (I hate that word) and never live on her own.” However, 24 hours later she was pulled off of these things in the NICU and two and a half weeks later we both went home to begin childhood.

Three and a half years later, I found myself again in the same predicament of a not so great pregnancy with Preeclampsia/Toxemia and again at around 28 weeks was at my OB-GYN with Sarah when my doctor shook his head and informed me that I wasn’t going anywhere… It was time to check myself into the hospital as the Preeclampsia/Toxemia was getting out of control and I had to be monitored.

There I was with my little child laying in my hospital bed wondering about my next. The birth, after a prior failed induction, we knew would be a c-section. So we prepared as the operating room prepared. And on February 6th six weeks before her due date Hadley entered the world with a cry that I will never forget.

She cried!! I can remember that cry as if it were yesterday as I was so thrilled to hear it thinking “thank god” maybe we would be spared the drama of the last birth and first few hours... However, a preemie and a tiny little baby weighing 3lbs 16ozs; she was the size of a football.

Sarah was waiting to see the outcome patiently; did she have a little brother or sister? And as she was whisked away past Sarah to the NICU I think she wondered… “Uh oh, what does this mean?” Sarah had several friends by now who had new brothers and sisters, but none of them couldn’t “see” their little siblings after they were born…

On Hadley’s 6th day of life she suffered a bilateral brain hemorrhage which changed her life and all of ours in one moment’s time. From that point on Hadley’s life became about medications, and doctors, and monitors, which Sarah didn’t understand. What 3 year old could understand this?

When Hadley finally came home from the hospital, a month later, she had monitors attached to her and a nurse who helped with the therapy and medications. Sarah would walk in and out of Hadley’s room to see her, and every time she walked out she would “smell her hands.”

I’m not sure what that was about and as Sarah grew older I asked her about it, and she, as a lot of children do, just didn’t answer. But I feel that perhaps she thought that there was a “smell” that might rub off on her and therefore she could “catch” what Hadley “had.”

I tried to keep our family life as “normal” as possible, and as our children grew I took them to the local park to play. Not such a great idea, and one day I got pissed off and came home and told my husband this had to change, my children could not play together. My special little daughter Sarah wanted to push her sister around and “play” with her, and this was impossible with woodchips and her stroller/wheelchair.

Hadley’s life was complicated enough with daily visits from physical therapists, occupational therapists, speech therapists, cognitive therapists, doctors, and a daily regime of medications which tasted oh so yucky.

Sarah would always defend her little sister’s disability to people who stared at her, children as well as adults. I became the brownie leader for Sarah’s troop and made teaching children about special needs a big part of our weekly lessons as Sarah thought it would help other children learn about special needs children and how they are not so different from themselves. Sarah was always willing to spread the word on how we are all ABLE.

When Sarah was 14 she came to Kenny and me and asked if she could be in a pageant. We had not ever experienced anything like this and wondered where this was coming from, but as we thought about it we realized that Sarah’s whole life she has been either Shelley’s daughter, Kenny’s daughter or Hadley’s sister and she wanted her “thing;” she wanted to show the world she was “special.”

For the remainder of her teen years Sarah competed for numerous titles and was very successful as she showed the world that beauty comes from within and shared her platform of “we are all ABLE.” In 2005 after winning Miss Maryland Teen America she received the title of Miss Continental Teen America and spent the year raising awareness for the disabled.

I thank god everyday for my two daughters and the lessons that they have both taught me on the word “special.”

 Shelley's lovely family

Shelley, I find it so inspiring that your older daughter is such a leader in fostering understanding of people with special needs. Wow, you must be so proud.

And now that you have read Shelley here you're going to want to follow her home to her blog, I'm Still Standing and read her there. 

Try starting with this post about How she went from designer to special needs advocate. Or this moving one about what it was like when her daughter got her first wheelchair.

Also read about her work as a Playground Fairy, how she got one of the first inclusive playgrounds in the country designed and built in Maryland.

And, since Shelley has already gone where many of us are about to tread (with great trepidation), you might want to check out her views on raising teens today.

Also? Follow her on Twitter where she tweets as @shelleyellen and go to her Facebook Fan Page for daily inspiration on your life with challenges, and let her know you like her, you really like her.

Shelley, thank you again for sharing your beautiful girls with us here today.

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