Thursday, February 21, 2008

Lots of these little ones sick.....

It's been a tough week. I think sometimes I let all the thoughts of having a special needs child consume me and it's hard to focus on anything else. I'm not sure if having Koen still makes me mourn everything Payton has gone thru - and will go thru - or if it's just a process I would go thru whether I'd had a typical child or not. But, seeing Koen healthy and happy and able to be calmed makes it tough when I look back at Payton's first few years. Blogging is an outlet for me and I wish I had started blogging as soon as Payton was born. I think it would've helped some of our family and friends realize what was going on in our lives and maybe help them to understand why we are still trying to recuperate from everything that went on those first few years. All I know is that williams syndrome changed my life in ways I never thought and has left a hole in my heart that I don't think will ever be filled.

Noel recently put a poem on her blog that describes so well how I feel:
Someone I love relies on me in ways you will never understand.
Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.
Someone I love is unable to advocate for themselves for things that most of us take for granted.
Someone I love will never have the opportunities that every child should have.
Someone I love will need unconditional love and support after I am gone-this frightens me to the core.
Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.
Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.
Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.
Someone I love has needs that require more time and energy than I have to give.
Someone I love has needs that mean I am not able to meet basic needs of my own.
Someone I love has needs that have become the driving force behind major decisions my family makes.
Someone I love has changed me in ways I will never be able to describe.
Someone I love has taught me about love and about the really important things in life. . . .

Please keep Ava, Abi, Blake, and Ava Jewel in your prayers. Surgeries and illness have been taking a toll on these families and they sure could use the extra prayers.

5 comments:

Heather said...

I know for sure that no matter how much you tell your family and friends about what it is or was like, nobody totally gets it. I am still recuperating from the first year or two myself, and have a super hard time talking about it with out losing it and ending up sobbing. I can't even wrap my own mind around how tough it was.
I don't think it's fair that all these little angels have to go through all of this. Why? I have faith and trust in God, but wonder what he was thinking doing this to these families. I firmly believe their is a reason for everything, but can't see this one. I don't think I ever will. Hopefully when my days are done, He can clue me in.

Every minute counts.... said...

Tara, you are so sweet and as always a huge inspiration to me. I wish that we lived closer( it wouldn't be so far if the weather was nicer). I can not wait for nice weather and a chance to catch up in person.
My thoughts are always with you and you're family. I am glad that you have started blogging too because I get to see how far Payton has come. I think back to when we first met and know that you and Bob are wonderful parents who are very strong yourselves.

Noel

And I LOVE that Payton can put on socks by herself. We learned with bigger socks too!! I hope that you got the book I sent and the wording isn't to overwhelming. I had to re-read parts several times before it would sink in :)

Julie said...

My family doesn't really get it. My mom and dad love Noah to pieces and I think my moms sees it but she would never say. My dad, he things all the doctors are crazy and Noah is going to show them. My mother in law thinks he has a "mild" case and is just fine. If that is what gets them through the day. Who am I to burst someones bubble.

Penny said...

I am glad you are here and that we all have each other. Thank goodness we all get it. I am here for you anytime

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