1. What are your children's names and how did you choose them?
2. Where do you live, and how do you like it there?
3. What has been your toughest moment in the Down Syndrome journey?
4. What are your favorite things to do when you are not being Mommy?
Mandie Marie is my oldest, she is now 32 years old. I had Mandie 10/78 as a teen in High School, marrying her Father to avoid placing her for adoption. My intent was at all times to have a baby so marrying her Father was part of the immature mind processing how to have a baby...In 1978 Mandy was a popular name. She changed the spelling during her years in middle school. Michelle came 9 months after my divorce... fancy that luck. She was to be a boy. In 1980 we could tell by heart beats and how you carried your baby, no sonograms ..the name chosen was Kortney Adam because she was a boy....SURPRISE. I was to the wire with the vital statistics police on my back that you can not leave the hospital without a name.... My nurses name was Michelle although her middle name was one given from tradition in their family and no way would I have ever remembered it or made sense of it...so Christine rolled out nicely. Michelle Christine born 09/81. In college with two children and a dead beat ex husband in tow I gave birth to the BOY.... yep Kortney Adam 05/83 he hates his name and goes only by Kory today..LOL so much for all my thought processing. In the same thought processing (immature) believing moving to Florida might change my not so good luck. I had been living in Illinois most all my life, being still immature I brought the problem to Florida in 1988. Becoming much wiser and in my own career working for the state of Florida I rid myself of baggage; the three children and I moved forward.
I opted to help the desperate cry for foster parents and brought foster children into our home from 1990 to 1996. I adopted Joshua who chose his own name (changed from birth name) Birth given name of William Richard; was shortened when I got custody to, Willie. and then starting playgroups with mean boys..."Dick" for a middle name, he had different ideas for a name at the age of five. I am sure the reason he chose Joshua was from a caseload child of mine I spent a great deal of time with; a boy by the name of Joshua. If I came home late he knew I had to go see Joshua..that case was in Englewood which is far from where we live, So he at 5 became my Joshua. LOL A couple years later I flew to Oregon to adopt a teen who was at the last chance adopt phase and she kept her name Erin Dawn, very pretty name indeed. My Keirsten is the birth daughter of one of the teen/then adult foster girls I had in the 90's. She could not care for her so to prevent Keirsten from entering foster care she placed her at a week old with me. The process of her trying to kick drugs and drinking to parent took too long and the courts placed her in adoption status, I then adopted her. Her name was Kirsten although the pronunciation was to sound like a long e and no one did it as Kirsten so one day we were getting groceries and the cashiers tag said Keirsten, i pronounced it perfect and she said wow how did you know... so we took the e and added it at the time of adoption. A few years passed and I met a little girl 3yrs old with Down syndrome who needed an adoptive home, Her name Kaitlyn Nicole fit her to the tee. Having Kaitlyn home; a local magazine did a Mother's Day article featuring Kaitlyn and I. From that publication brought us a "faxed to my job, a letter-cry for help" to help with a little boy named Steven Lee a 2 year old boy with Down syndrome living with his aging grandparents because his parents could not care for him. Steven Lee grew into his name perfectly, so it remains. In the spring of 2000 while on maternity leave from Steven's placement I got a call about a newborn boy with Down syndrome in Sarasota who needed a family right that minute.. His adoption disrupted. I said YES YES YES. We needed not only every single thing to provide for a newborn baby, we needed a name.... It was decided on the way to the hospital..If he was blond he is Tyler and if dark hair Jordan. He is American / Mexican (LOL) Jordan Tyler is his name (J.T. after my late Grandfather who is, always will be my mentor.) Home for about 18 months another call came in asking if we would take a little baby girl with Prader-willi syndrome. My journey with disabilities thus far was magical and a "yes" came shortly after researching what we could on her disability. Her name is Tressa, given to her from a book her great grandmother wrote. I could never take that from her, beautiful as she is. Her middle name is given from her birth name so we incorporated her birth with adoption. Then came the name game...We went into an adoption dissolution case and the boy born Tibor called Tibi in his orphanage in Hungary, known by this name for four plus years was made David at the age of four+ through adoption..BUT three months later was placed in a friends care who named him unofficially Luke. By the time we took custody, four months later, I saw him respond naturally to Luke/Lucas and Tibi. It was difficult because legally everything is David and in all appointments they will call him David until adoption is final with us.. It became obvious with all his neglect he needed some stability so he is Lucas Tibor (Tibi nickname) He still smiles when he hears Tibi, he is now 7 years old doing fantastic. Amazing what a family can do for a human. In march 2009 we got called about a newborn left in NICU. We knew she was blond hair blue eyes. She was tiny and very medically fragile. I went newborn shopping and the kids all started going through names to see what name the kids could all say. One issue we have is some of the children can not pronounce certain sounds; names are an issue. J is a very difficult sound and Jordan still can not say his own name. By the time I got home Emma was the given first name. I received an email from one of my friends about tummy issues etc..because Emma seems to have some issues. Rose gave me insight and offered help if need be.. Emma Rose is now her name. ironically the next day when I drove across the state to camp out in NICU I met Emma Rose for the first time, sight unseen. SHE HAS BRIGHT RED HAIR. How ironic was it that her name fit her, a gift from God.
We live in Southwest Florida in a community called Cape Coral. I chose to buy a home in the Cape in 1990 because of it's focus on family. The schools are centered around family, we have block parties and many civic organizations focus on their own right here in our community. There is not one area of Cape Coral considered unsafe or "the projects" or any side of town we would not live. I chose the area we are in as the water and sewer were already on city hook up, the neighborhood is older and well established. Our neighbors have been here since we moved in.. A real family environment.
My toughest moment for the journey is the medical. You see, I do not experience the grief of learning my children have Down syndrome, I run as fast as I can when offered the opportunity to part a child with Down syndrome. I do get kicked in the stomach when medical issues come up and at a couple points in the journey I had to face the possibility that my child may not make it to the end of the year. Jordan was diagnosis with Opsocloinsis as an infant and we went into the cancer learning phase for ruling out Neuroblastoma. I cried for the entire two weeks until the ruling out period proved he had precursors but not cancer. I was a wreck each year when the testing to be sure it had not surfaced came around. Then baby Emma's heart surgery had to be the single most walk of faith for me. This precious little angel I had to hand over to have three holes closed on her heart on this tiny lifeless baby girl who could not reach the weight they wished for her surgery was painstakingly difficult to get through seconds that day..and days prior. It wasn't until the day after my heart was filled with such joy and happiness that God delivered again, she was better than new, she was ALIVE. It was amazing the difference from the day before to the day after.
My other difficult moments are getting the professionals to look at the can do's and not the limitation. The schools to place goals high for them to achieve instead of looking at well they won't be able to get to this point..WHO KNOWS... I strive to have all the children fully included for many reasons although the #1 is that in real life when they turn 22, they have no tucked away Walmart to safely shop or a special road or path to travel to keep them safe. They are walking and traveling the population we all live in and I need them prepared. Prepared for the cashier who might not give the right change, the person who might not have their best intentions in mind. I need them to skin their knee to learn how to ride a bike, fall down learning to ski. I am not sure where parents believe because their child has Down syndrome they should be sheltered from normal ugly life experiences. This is what makes us prepared for life. I want my child ready for being called a name... I was called a name a time or two. I had to wear a bandage a time or two.. I think I turned out just fine. I see my Kaitlyn totally capable of holding her own in so many social situations from being fully included her entire life. She is not missing out on anything. She reads at a 3.4 grade level and knows math to number up for shopping. I would not do anything different other than advocating more for others to have what Kaitlyn has had in educational settings.
I love to take long weekends with adult friends to go on exciting trips. A weekend to Utah skiing, BIKEWEEK in Daytona, Disney World without children. I have my days to myself for house keeping which I enjoy. I can go to lunch with a girlfriend. I would love to travel more, take the older two out to other countries to expose all their abilities to foreign countries. I see how our country which is much more exposed to persons with Disabilities act when my children do very independent acts and I feel the more we place our loved ones in successful social setting the more we educate and break down social stereotypes.
