Another Repost from FB - from 2009 :)
My daughter is sweet, funny, awesome. She is the most empathetic human being I have ever met. She is 5 years old now.
Kaileigh was born to a teenage girl with mental retardation among other issues. It was later discovered that the birth father was also a teenager with mental retardation. Birth mom did not get any prenatal care. Because there was a history of DHR involvement with the family, a caseworker went out on Christmas Day, 2003 to check on the family when Kaileigh was released from the hospital at the age of 3 days. That caseworker visit saved her life.
Kaileigh has multiple heart defects, asthma, an as of yet undiagnosed genetic disorder, and has very slow growth (most likely an endocrine issue - still undiagnosed, though). We see a cardiologist, pulmonologist, endocrinologist & a geneticist fairly regularly even now.
She came to live with us when she was 4 months old - she was so malnourished & tiny - she weighed the exact same weight at almost 5 months when she was released from the hospital as my older son did at birth!!!
We did not know it at the time, but she was sent home with us to die. DHR did not want her to die in the hospital alone. WOW - that was a shock to learn that. We knew she was sick, but apparently, we had our heads in the sand about a lot of it at that time. David quit his job to be home with her.
She is still a big, big Daddy's girl. Her adoption was final almost 3 years to the day after she came to live with us - it was a long, hard, painful road of its own that we will not discuss here.
Suffice it to say that EVERYONE tried to talk us out of the adoption because of the severity of her issues. The only supportive "professionals" were our original worker (Candy <3 ) and the cardiologist - who is, by the way, the BOMB - we <3 him!!!! Yet, amazingly enough, given the severity of her issues, she did not qualify for a medically fragile adoption subsidy - hmmmm...
ANYWHO...
We were told that she would never progress beyond the mental age of 3 - at best. We were told that she would die as a child due to medical issues. We have been told that she would most definitely be mentally retarded. We have been told so many things that are painful to hear as a parent - that are so untrue.
So we spend our days doing therapies instead of ballet and we spend our time with IEP teams instead of sports teams. What's wrong with that?
Kaileigh does have some developmental delays. She has muscular issues which affect her speech. She has gross & fine motor skills issues that affect her handwriting, drawing and her ability to do some tasks that other children her age do with no problems.
She is not diagnosed with mental retardation. In fact, it is just the opposite - she is very, very bright. She does still have health concerns. She always will. There are days when her issues are overwhelming - particularly when written all in one place (like an IEP for example) - but her issues do not define who she is....
When we began this journey, we saw her Bham specialists at least once a month (cardio was twice a month). Now, we see the cardio once a year and the endocrinologist & geneticist twice a year. We have not seen the pulmonologist in years (her ped monitors her asthma). She was doing 6-10 nebulizer treatments a day, year round AND was on oxygen 24 hours a day, 7 days a week. Now, we do 2-4 neb treatments a day just as needed.
She is reading!!!!! This is PHENOMENAL!!!! She is so bright. She is so empathetic. She understands family relationships & feelings & emotions like no other 5 year old I have ever known.
Kaileigh loves deeply and whole-heartedly. She feels more. She understands more. She is a hugger - she is a smiler - she is a cuddler......
The essay below describes perfectly the feelings and the emotions that go along with parenting a child with special needs. I am blessed beyond measure by being Kaileigh's mother.
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
UPDATE:
Kaileigh is 7. We have been released from private speech therapy, occupational therapy and the endocrinologist. We currently see the cardiologist every 12-18 months and the geneticist once a year. She is repeating 1st grade at my insistence.