I few months ago I took my little girls to the zoo.
I love to have the chance to concentrate on my kids a few at a time, so I was excited. So were they.
But I was also nervous.

You see, the trip was planned so that we could meet up with a family I met through this blog…a family with not one, but two children who have the same syndrome Lucy does.

Their mother (Mary) is quite amazing. She has been dealing with Bardet-Biedl for a long time (her oldest with the syndrome is sixteen). She has started a website and she puts together a conference each year for families who deal with this syndrome to get information and support (I’m going this summer).

It was wonderful to meet her and to get energy from all she is doing. And her girls were so sweet and well-adjusted…so cute with my girls.

But sometimes quite frankly it scares me to confront the issues Lucy may have to deal with.

I know I need to be educated about it. But sometimes it makes worry fill me up to overflowing. Mary’s girls have many obstacles in life. Probably the toughest thing for them is their kidney issues. One of the girls had to have a kidney transplant, the other dialysis. One has a leg that grows more quickly than the other necessitating specially made wedge shoes for one foot. The older daughter uses a cane and has lost much of her peripheral vision.

There’s a huge, wide spectrum of how Bardet-Biedl affects kids.

And we just hope we can learn enough and be aware enough that we can be prepared to help Lucy any way we can.

I’m thankful for Mary’s example in doing just that. She doesn’t seem to even get phased by all this stuff…she just pulls up her bootstraps and does what needs to be done to help her girls.
Because, man, we sure love that girl.

Thanks Mary, for all the information and help.

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  1. my husband has MS and though i have read all it can do, it is still scary.
    i was at one of my best friend's weddings in Fl a few years ago and her husband's sister has MS and walks oddly, talks slurred, etc. the first time i met her that weekend, i assumed she was drunk (there was enough alcohol around that that could have been the case ๐Ÿ™ ) when i found out she has MS the next day, i had to excuse myself to go cry in my hotel room for about an hour. the ugly cry…you know the cry i bet. it just upset me so much.
    i do not know if seeing someone my husband's age affected as badly as she was with the same disease helped me or not. i do know it helped me not assume one thing (intoxication) when it could be something else (not just MS, but in general, too). (guess i am not good at learning life lessons ๐Ÿ™‚
    i'm glad you are able to go to that conference and get the help and support of other families, and that you will be able to be a help and support as well. we participated in an MS walk here in omaha and it helped a little bit to see others with MS and how they handle it.
    your family is so darn cute! prayers for answers, miracles, and understanding for you guys!

  2. Every parent worries for any child that they bring into this world. When it comes to children with specific special health needs I think it can add an extra amount of worry. We hope for the best but prepare for the worst. I think it's safe to say we all as parents want the moon & the stars for our children. We have the highest hopes and dreams for each and every one of them. It's hard to realize that one of our little blessing might not be able to have all that may come so easily to others. When my little Sloan talks about how many kids she wants to have (at least 7 mom) I cringe a little inside but tell her that she should aim to have as big a family as she'd like. The reality of her possibly having a harder time with pregnancy someday is something I don't feel she needs to worry about now. It does break my heart that she might not enjoy the joys of motherhood without a ton of risk to her health. I think your sweet little girl has a huge advantage in the fact that she has such a loving family and a wonderful support group. I am sure that is why those two darling girls of your friend are so well adjusted also. I hope you can have a wonderful weekend with your family ๐Ÿ™‚

  3. Shawni- Your comment really hit home with me. My daughter also has a syndrome that has a wide range of effects. The reality of the whole thing is sometimes overwhelming. Thank you for your post it was just what I needed.

  4. Oh Shawni! You are a great mother and you clearly have such a supportive family- no matter what happens, you will be together for it. Lucy is such a bubbly little girl and I love seeing her pictures and seeing how much her siblings love her.

  5. You know, I could have sworn I saw the oldest girl at the zoo back a few weeks ago. I saw a girl who looked very much like her, wearing a Twilight shirt and using a cane. Wondering if it is the same girl! We were at the Phoenix Zoo.
    Though I'm sure it isn't always easy and I cannot speak from experience with a syndrome like you are dealing within your family, I do know how loving our Lord is and that He does not give any of us something we cannot handle with Him. Your sweet Lucy is loved by the Lord even more than any of us on earth could and she is completely engulfed in His ever capable and loving hands. His grace still amazes me! Hang in there!

  6. Okay Shawni….how many times a day do you think Lucy's cheecks get kissed? I so so so so love that someone is kissing her cute cheeks everytime I see her in a photo. Is it any wonder why she is swatting people away like you say in your posts? She's probably thinking, "Great, how many people are going to want to kiss my cheeks now?"
    Your kiddos are beautiful.

  7. I love your blog! You seem like a great mom and as a mom myself I can't imagine how scary all the unknowns are. Thanks for inspiring me!

  8. Thanks for this post. Reminds me that I need to love life no matter what comes, and learn and do all I can to help and support those around me.

  9. If love could heal Lucy she would be healed. It is so obvious how much you adore her. Keep loving her. God has a plan for her life. I am excited to see it unfold. She melts my herat. I can't imagine what she does toyours!

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