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Wednesday, August 25, 2010

Do you ever just need a virtual hug?



I try hard to stay far, far away from my pity pot. Yes, it's warm and familiar, but really nothing good ever comes from me hanging out there. It's warmth and familiarity are deceiving at best.

But sometimes, as happy and positive as I try to stay, my mind goes there.

It hurts having my child not speak and act like other kids her age. It kills me when I hear her choke and struggle with liquids. I want "normal" for her so badly..... I want her to say DaDa and Bye Bye.........and somedays it's really hard to not dwell on the things she's "not" doing instead of focusing on the things she is.



She is a blessing, for sure....

My heart and soul, all wrapped up in this amazing little package. See, these things that are so heavy on my heart don't phase her in the least. She is love. She is life.....she....just......is.......

Maybe I'm struggling because we're getting so close to her second birthday. When I see other kids her age talking, pointing to things, singing songs, and stringing words into sentences, i lose sight of how far we've come. We've been through so much together. She's my road trip buddy, as we've clocked more car hours driving back and forth for care than I really want to think about.......she's my late night secret keeper.........my cold day snuggle bug......and that little ounce of joy on a tough day that give you that seed of hope that tomorrow will be better......



When I first got her diagnosis on her ultrasound, someone gave me the poem "Welcome to Holland" by Emily Pearl Kinsley

"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."



It's that loss of that dream that I struggle with from time to time.....but I'm getting there. I'm thankful.....humbled that I get to me Mommy to this amazing little girl and her wonderful siblings....

and I know God isn't done with me yet....

7 comments:

Marissa said...

She is a beautiful little girl :) you have me in tears because I feel the struggles through your words...I have read that poem before, its beautiful. I cannot imagine what you are dealing with, but I will say that I will keep you and your family in my thoughts and prayers.

Marissa said...

...oh and I'll send a virtual hug too :)

Lisa said...

What a different perspective and so very true. She is a beautiful little girl and even though she may have a disability God will over bless her in other areas of her life....you watch and see.
Hugs.
Lisa

Ashley Sisk said...

::hugs::

Debby said...

((HUGS)) She is your precious gift from God. She is adorable. That poem is wonderful, one of the best I have ever read. Thank you for sharing it with me.

Sarah said...

I was checking out your blog after viewing your latest macro shot and stumbled upon this entry. I too have a toddler with a disability (actually she appears to be very close to the same age as your beautiful little girl). I have since read the poem that you mentioned and was moved to tears. My daughter is such a blessing and though we struggle with her disability/care I couldn't imagine her any other way! She is perfect to me! Your daughter was made just for you, just the way she is. What a blessing the two of you have in each other! I will keep her and your family in my thoughts! Happy blogging!

The Smittys said...

i LOVE the picture of her feet. precious.