Sunday, September 25, 2011

Sunday Social - Bella

Next one down on my siggy line...

Anne,
Wife of Fred for 23 years
Mom of:
Patrick (16)
James (16)
Rosie (1)
Bella(14)
Julie (13)
Daniel (12)
My children around the world:
Milly in Taiwan
Felice in Hong Kong
Eun Hae in South Korea
Nadya in Germany
Obrin in New York
And our critters Annabelle, Fiona, Sunny, Sophie, Cindy-Lou and Blue; Mamfy, Mali and Punkin; Nick; Frog 1 and Horny Toad; Charlie and Dizzy; Minnie and Alice; Elfie, Frex, Crope, Tibbit and Ozzy; Genevieve, Pippin and Finnegan; and a dozen or so chooks.

I'd like to ask God why He allows
hunger, poverty, and injustice
in the world,but I'd be afraid
He'd ask me the same thing ...



Is Bella.


















Bella is my 4th child in order of when they came into our family, my 3rd in birth order, and my last in order of tallest to smallest.

Once upon a time I had three children. Boy, girl, boy, all brought into the world and into our family the old-fashioned way. Then one day it occurred to me that my little girl did not have a sister.

I could not have that.

I am very, very close with my sisters.

I had talked in my younger, idealistic days of adopting children. Why not now? I wanted another daughter, Rosie wanted a sister, and I was quite sure there were oodles of children in the world that would want a family. All I had to do was go out and find one. Easy peasy.

And so I did, but ain't nothin' easy peasy about adoption, let me assure you.

Long story short, we found our Bella. And it was meant to be. We knew she had some special needs, but we also knew this was one little mighty love muffin of a child and that she was our daughter. Make no mistake. Grab a tissue if you have a spare minute and read our meeting story. Or read a little about the beginnings of her life, and why she still sometimes has bad dreams.

And so she came home to us back in 2003, started Kindergarten a few days later, and turned six a month after that. That was just about exactly eight years ago. That's right. Next month, my little peanut turns 14. I shall faint.

To look at the next eight years, on paper, one might ask, what the hell did you get yourselves into?

There were surgeries. Medications. IEP meetings. There were appointments with many specialists to assess needs/make treatment plans for her strabysmus, hearing loss, cleft palate, stunted growth, speech delays, diminished IQ, learning disability, precocious puberty, ADHD, malocclusion, and more.

Today, there are still meetings. Team meetings now cover, in addition to all of the above, planning for her adult life. How much assistance will she likely need? What type of vocational path will she be suited to and how can we help steer her towards that?

I took her to AI duPont a couple days ago to meet with her pediatric endocrinologist. She lovingly calls him Stretchy Guy because whenever he sees her he stands on her feet and stretches her up by her jaw to measure her maximum height. We were delighted to see that after a year and a half, she had grown a little.

She is now 4 feet, 7 3/4 inches tall and weighs around 80 pounds.

She is just about done growing.

Her "working memory," which allows your brain to store away just-learned-things to draw upon later, is at the 2nd percentile. 98% of people have better working memory than she does. Because of this, anything she is trying to learn takes her about 10x longer to learn than her peers. What another child might have to go over five times before it sticks, she might have to go over 50 times. Or more. She is currently struggling for competence at a 3rd grade reading level. She is in 7th grade.


OK, so that's all the nitty-gritty on "issues." And if you're still scratching your head and wondering,

"Why????",

Let me tell you why.

This is The. Most. Loving. Person. You. Will. Ever. Meet.

EVER.

When we were at AI the other day? She spotted her eye doctor in the cafeteria. The man responsible for putting her through four of her six surgeries to date. What did she do?

"Mom, there's Funny Man!" And off she ran to give him a hug and chatter at him, and ask him did he have a fun time on his vacation?


When we have IEP meetings to discuss her progress and her goals, we unfailingly get to talking about how special this child is, and I am never the only one with tears in my eyes.

When I was helping in her Kindergarten class many years ago, a little boy fell off his chair and got hurt. While all the other children stood around the teacher and the boy, Bella immediately ran off to the sink, wet and wrung out some paper towels, and ran back, pushing her way through the crowd to do what she could to help the crying child.

She is always there to rub my back or give a hug if she thinks I'm having a bad day.

If even one little thing happens that makes her really happy, she is filled with emotion and smiles an enormous smile and says, "This is the best day EVER!"

This little child was abandoned by her birth parents, hospitalized for a long time with no Mama to hold her hand through all the pain and fear, and put in an orphanage to be an outcast even among orphans. She struggles and struggles and struggles with learning even the basics, and will need support all her life. And yet about four days a week she has her "best day ever". She loves just about every person she meets. She tries hard, and always does so with a smile on her face.

Unlike so many others that I have met, she does not focus on the disadvantages in her life, but instead rolls around in all the good like a pig in mud. She slathers herself till she is drenched and dripping and stands up proud and beaming.

I love this child more than I ever thought possible. I sometimes get all teary-eyed just thinking about her. Not because I'm sad for the less-than-normal life she has had or will have, but because of the love that just shines out of her pores.

She hurts my heart.

4 comments:

  1. HI. I just wanted to thank you for this post. I've been trying to look up blogs by families with teenaged kids with RAD diagnoses (for a family I'm working with- I'm a social worker) and I came upon your lovely blog. I sometimes feel like the world is full of one sad story after another and your story of Bella shines a bright light on the world. I am supremely grateful and publishing anonymously to protect my clients' privacy. Much love.

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  2. Awww, thanks, Anon! So glad it meant something to you. She's my heart....

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  3. Anne, your Bella is incredible!!!
    This is my passion, so bear with the ginormous reply!
    Ok, with that said wanted to share that I too have the working memory issues, mine due to a shriveled up, atrophied hippocampus that was eventually removed in my early twenties. I have a virtual tonage of learning disabilities. However, with the massive assistance I received from the Disabled Student's Center at the junior college level and in both my undergrad and grad programs I was successful in obtaining a MA in the Behavioral Sciences. I worked with special needs children and fams- I can relate on a personal level and professional level which is why I gotta tell you until your daughter ages out of high school, her education needs must be met by the school district! No later than her 16th birthday there has to be a formal, documented "transition plan". I was a part of that so called "iep team"-team my ass, it is a dictatorship. YOU HAVE LEGAL RIGHTS!! I have loads to share like request iep doc before the iep date so you are prepared. Oh hell, you can even draft your own iep goals if you want. I highly suggest this because you know your child best and have their best interest in mind!! There websites all over to assist parents in drafting own goals and objectives. The motto "no child left behind" means pass the special ed child at actual age regardless of what they learned/achieved to get them aged-out asap!! Then there's make sure everything is documented! If you want a say, behavior plan, request an iep and tell them you want them to take data on type, frequency, time of day each behavior occurred. School district won't do anything unless they have just cause! All correspondance with school/school district is done in writing (email doesn't count cause you can tweak a computer's hard drive-email still typically way less appreciated if you go to mediation or beyond). If important snail mail certified. Then you know and have proof doc was received. The transition time is scarey for parents. I think I may be of some small use! If anything, consider purchasing what is known as the Special Ed Bible for parents- "Wright's Law", written by Attorney hubby and Social Worker wifey. The book, about 1 1/2 inches thick can be found online at bookstore or their website! No kickbacks from them, I just have to honestly say it's the next best thing at little cost if you don't wanna go lawyer route. It's full of legal-ese (written not at law brain level), case law, parental rights under law, etc.!! I love the book, mine is all highlighted in all different colors and dog-eared! :)
    I know I don't know you, but I know your plight(s)!
    Linnea

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  4. Oh yeah, forgot to mention my parents were told I would be lucky if *my* brain could handle a trade school-this when I was early early 20's. It wasn't easy, I worked harder and longer at EVERYTHING! But I am accomplished! And if I can do it...shoot given your Mommy powers Bella will have everything she needs to be whatever she chooses!! The sky being her only limit!! :)

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