Today she was re-evaluated for OT.
I told Sarah that Lilah wasn't in the best of moods, but she decided to give it a go anyhow. Lilah was still acting SO mad, so I decided to remove her patch and see if she would cooperate more.
Lilah put blocks into the small opening of the container, and removed some items with one finger...but not many. The tests are little "games" they play..."putting a puzzle piece into the same shape"(i.e. a large square, etc) to see what skills she has learned and knows how to do.
The testing went on and then Sarah scored her "results."
Sarah told me that Lilah was at the 5th percentile for fine motor accuracy with her fingers. Then she told me how much Lilah has improved and how she went from one score to the next. Dana, Lilah's ST at Backus, said that as long as they are improving that is a great sign. Sarah said that Lilah improved by 20%...I think. She said that it was a great success.
I got into the car and had to pray. Really. I started to feel that wave of pain again. That "delay" word just hurts to hear...so bad.
(Ok, before ANYONE judges me for this...please understand...we ALL want the BEST for our children. We want our children to live happy lives, without pain and agony, and we want them to have less trials than we had.)
I started to feel as if she was being judged... AGAIN. I started to feel that deep hurt. I started to get sad again and that question came up again in my heart, "God, why Lilah?" I watch her FIGHT so hard. I watch her work her TAIL off to master skills and I am constantly cheering and coaching her on.
I HATE that feeling. I HATE the feeling that Satan places in me. I know to pray and pray...and I do that, but darn if he doesn't fight me so hard. I have cried twice already today....
WHY do these evaluations HURT so bad? Why do I allow them to pain me? Do they REALLY matter? In the GRAND scheme of this life, AND the next...NO. But, to THIS world, and to the measurements that THIS world places on my child...yes, unfortunately, these "tests" matter. They matter where she will be "placed", what she will be "considered" for and what "services" she will be offered, how others view heretc, etc, etc.
Sometimes living in Holland is REALLY hard.
I am so ashamed of my feelings. I wonder if the problem is really ME. I wonder if I am the ONLY parent feeling this pain OR am I the ONLY one brave enough to tell the truth of this hurt.
Then, as I pray and I BEG God to give me peace...I realize that NO matter what this world says about her..she is perfect in HIS image. Never by this world, where we judge others, ad unfortunately ourselves, on what we look like, talk like, how others "see" us, and worse...what we can "contribute" to society. But, Lilah is perfect..yes PERFECT in HIS eyes...and MINE.
If I stripped away the disability and took away the pain and the heartache and the sorrow and the tears, Lilah wouldn't be LILAH.
Lilah is SO patient.SO kind. SO loving. SO gentle. SO DETERMINED. Lilah has more perseverance than ANYONE I know. I am daily inspired by her. I am inspired to be a better me. To be a better ...everything.
So, yes...I am hurting right now. The pain is REAL. The emotions are genuine...and I am sharing them with you because I believe that somehow it will bring me closer to God by asking you to pray for me...and it will help you all to see the truth...sometimes Holland is hard, but most times it is a wonderful place that has opened the eyes of my heart to a closer walk with Christ.
I am by NO means perfect. I make more mistakes than I care to admit. BUT, I am trying EACH day to learn how to be a better Mom and a better advocate and a better citizen in Holland while I wait for my place in eternity.
I may fail, but I am determined to never give up HOPE.....even in the midst of tears.
3 comments:
We are praying for you and lilah Katie! You are such an AMAZING mom...please don't ever doubt that about yourself. Lilah is such an incredible gift and she was given to you because God knew how special you were! Praying!!!!!!!
Katie, your reactions, your feelings, wants, needs, and fear are all "usual", not "normal" or the exception. You differ from no parent. What you have that is exceptional, is how you understand how great our Lord is and how you have grown in your love and understanding. Could we offer ourselves the way He did? No. But we know how to strive through what he sacrificed for us. Great job, Kates. Bzzzzzzzzzzzzzzz
Hi Katie, I just hopped on your blog from Kristen and Cayman's. I was reading down through your posts and got to this one and so felt your pain in my heart. I wrote a post a few weeks back that I thought you might like to read. It is about Holland and hope and what I've learned in the nearly 22 years I've been a parent to a daughter with Down syndrom. Here is the link: http://sarahely8989.blogspot.com/2011/04/forever-in-holland.html.
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