11.01.2009

Prader Willi Syndrome

October 21st we got Lillian's diagnosis. She has a genetic disorder called Prader Willi Syndrome. I don't want to go into details about what that means because frankly I'm tired of explaining it and anyone can easily google it. If you care to know about the disorder, check out www.pwsausa.org.

The bad news is - there's no cure. The good news is, God gave us a beautiful little girl, she's healthy, she has a huge family that loves her VERY very very much, and lots of friends that will treat her no different than any other kid her age. We are truely blessed.

I've learned a lot in the last two weeks thanks to this tiny little person. I've learned how important and how wonderful it is to live in the present. I've learned not to stress over the future, because situations change, life throws you curve balls, and the best times in life can be wasted worrying about what is yet to come.

I've learned that it's ok to be disappointed. We try to plan things in life, we have expectations, and when those expectations aren't met, it's ok to grieve. Grieving is healthy and an important step to moving forward.

I've learned to love unconditionally. I thought this lesson was learned when I married my husband... boy was I wrong! I look at my daughter now and I don't see the feeding tube. I don't dwell over the thought of taking care of her for the rest of her life, the time and energy it will take to keep her healthy, or the lost dreams I had for her. I have new dreams for her now and they are no less important than the ones we previously had, just different.

I've learned to accept help. I've learned to lean on other people when I'm not strong enough to get through the day. I've learned to count on faith and love and God.

These past two weeks have changed my life forever and I'm so grateful that God has chosen us to be Lillian's parents. We may never glide through life easily, but we will be stronger, grateful, and more faithful because of her.

If you're following this blog, it's taking a different turn. Until now I've kept it pretty much surface stuff. Things like updates and milestones and cutesy pictures. There will still be updates and milestones and pictures, but there will be more posts about ups and downs as we go through this journey of being Lillian's parents. I hope one day she can read it and see how much we love her and will do anything for her... and she'll get to follow her progress to being the amazing woman I know she will be.

14 comments:

  1. I only know the very basics of Prader Willi Syndrome, but I just want to wish all the best. You are wonderful parents and Lillian is very lucky to have you.

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  2. Sare, you have such a strength about you. When so many people would have fallen apart you held it together for Lillian. You're right your life is so different now and Lillian's future is very different from what you thought it would be, but that doesn't mean it won't be just as worth while.

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  3. Very beautifully written. I admire your strength and honesty. Lillian is very lucky to have you and Phil. You are completely right - though your dreams and goals for LIlian may have changed, they are no less important or meaningful.

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  4. Sare, you are a wonderful mama to Lillian.

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  5. You are so, so strong...and I can't imagine a better mommy for Lillian.

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  6. Sare, I admire your strength. Lillian is so lucky to have such a strong and loving mother.

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  7. Your perspective and honesty is inspiring Sare. Lillian is such a lucky girl to have a mom like you

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  8. I am thinking of you and you both will be wonderful parents to Lillian. She is so lucky to have you both!

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  9. Best wishes to you & your family. I know that you will raise her to be a wonderful young woman!

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  10. You & Lillian are in my thoughts. ((hugs))

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  11. You all are in my thoughts, Sare. I truly admire your strength & she is one lucky little girl to have you as a mommy.

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  12. Thinking and praying for you all. Lillian is so lucky to have both of you as parents.

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  13. Thank you for your honesty and for being willing to share your journey with others.

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  14. Very beautifully written. I admire your strength and honesty. Domain registration india

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