Friday, May 29, 2015


It has been a very long time since I took Sarah to our local pool. Possibly as much as a couple years. My reason? The last time we went, she only wanted to sit in the hot tub because she was so cold. She had no desire to play in the water and due to her balance issues, it wasn't a relaxing time for me anyhow. Add to that she is so quickly overstimulated by crowds and loud noises, she's often in a distressed state of mind.

Today I had the opportunity to go to the pool again. It was with some hesitancy but I decided to give it a try anyhow. After she got used to the water, she really enjoyed herself. She used a pool noodle and then after a bit, I put a lifejacket on her. I helped her float and get used to the feel of the buoyancy of the water. She was then able to walk around and enjoy the pool with her friend and releasing me from a "small amount" of nervousness. She only had one incident which resulted in breathing in a bunch of water, causing a few moments of stress for her and I as she struggled to breath again. After a quick hug, she was good to go again. We took off the lifejacket near the end of our time and she enjoyed walking around figuring out how to manage the feeling of water.
I'm pretty sure I'll be doing it again- it went much better than I anticipated and I'm so glad I went.

Saturday, May 16, 2015

Four Years Ago Today

Four years ago today I wrote this blog post.  This was the first day that I blogged about Sarah's delays, shortly after a speech assessment. Looking back, I can still remember how terrifying and alone I felt. I was in a state of shock and even numbness as I began to process and understand what this change meant for us. I was suddenly part of a new group of people, a wonderful group who are parents of special kids. Special because they transform us into a person we never knew we could be.

Most of the time, Sarah's delays are a non-issue. She only knows her world as it is- there was no loss of anything for her. She lives in the moment and and lives to love. She does everything with passion, whether it is playing with her toys, eating her favorite foods or snuggling with me at bedtime.

Even though we have learned {and are still learning} to work with Sarah at her own unique level, there are brief moments of grief that still rise up in Doug and I. When we see kids her age and much younger surpass her in skills such as reading, writing, playing and speech, our hearts hurt for her. Although she doesn't know what she's missing, we do, and sometimes we even experience pangs of jealousy. It's not easy to admit that but, it's true. I'm thankful those moments don't last long but they exist.

The past four years of raising Sarah has changed our lives drastically. All the ideals of what she "should be" doing are put away. I still think of them but nothing I do can or will change who she is or how quickly she catches on to a concept. Having Sarah in our lives has put much more value on loving and understanding her regardless of her cognitive development. And yes, I still experience moments of grief and sadness as I realize for the umpteenth time of what she's not doing. Over time, those moments are becoming fewer and farther apart and I am rejoicing in the small victories more often. This is a journey that I never dreamed of taking but I am learning to enjoy "Holland".

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.
c1987 by Emily Perl Kingsley. All rights reserved

My "Holland" isn't a vacation or holiday. It's a life and we're living with this detour for the rest of our lives and that's okay. Sarah brings a light into our day like no one else can and she is so deeply loved by everyone she knows.


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