The part of Lucy’s syndrome that says “obesity” scares us.  And it’s not just that it’s harder to find clothes that fit or that bigger kids may have a little tougher time socially.  Some people look at me like I’m from outer space when I tell them I’d rather not let her eat those goldfish crackers or partake in that cupcake piled high with two inches of frosting.  One friend even said “oh how can you deprive that sweet girl of an ice cream sundae??” when Lucy didn’t even know there was such a thing. But those people haven’t seen the effects of that ominous word “obesity” on adults with the syndrome.  Dave and I have observed grown-ups with BBS who have all kinds of health problems including diabetes and joint problems and heart problems all related with the fact that this darn syndrome confuses the bejebes out of those poor metabolism rates. Because of that, we have worked pretty tirelessly to change our whole family eating habits.  And do you know what?  We fail pretty much every day.  Because it is hard work, I tell you.  Especially when you have four older children who are thoroughly entrenched in habits that come along when you aren’t incessantly worried about weight and syndromes and when you live in a society that bases so much around food.  But we try our very best much to those older childrens’ chagrin, and their friends too, who’s eyes fill with pity for our poor children when they take a look at what kinds of food line our pantry shelves, and then decide “maybe we should go to so-and-so’s house” (the one with all the good snacks). But food is obviously not the only thing that affects weight.  The right exercise is so important.  The problem is that Lucy doesn’t like to run around as much as other kids and she can’t quite coordinate those legs enough to pedal a bike.  So we have found what we feel is the best “sport” for her: Swimming.2013-01-08 iPhone 68586…and she is becoming a “superstar” one. And I have to give a shout-out to the place where she takes her lessons, Aqua-Tots, because honestly I don’t know if she would have stuck with it so long if it wasn’t for how incredible they are to her there.  They have taught her SO much.  Every coach greets her with a smile and golden patience, even if she’s being obstinate and naughty once in a while.  I also LOVE that they are so flexible with her classes and make-ups when I have a day like this and can’t get there.  Oh man, I could gush on and on.  Because when you have a girl like Lucy, a place like Aqua Tots comes close to making you cry out of gratitude with how much they are teaching her.  And really, how much they are changing her life.  I know that sounds dramatic, but if we can teach this girl how to enjoy being active and having something active she is good at, maybe we can skip some of the heartbreak health problems so many with her syndrome have to deal with in the future. So, thank you, Aqua Tots, for helping Lucy become a smiling “superstar” swimmer.  We love you forever.

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  1. That is so great that Lucy loves to swim! I can't think of a better exercise – cool in the summer! I wonder if you have thought about having a bike put together for her without the pedals? I know she couldn't go as fast, but she may be able to push along with her feet and coast some. I don't know because balance may be an issue but I just thought that may be a way for her to enjoy bikes without having to worry about falling. She seems like such a precious, precious girl – I love the video of her with her "guys" – darling!

  2. I always feel like a nut to leave these comments, but sure love you and your family! That sweet Lucy is in great hands. Thank you for all the strength you add to the families able to read your experiences.

  3. Swimming is such a great life sport—that skill and hobby will bless her her whole life. I have lots of older lady friends who love to swim laps at the Y. Glad you found something that she loves :).

  4. Our little family struggles too with the fact that society bases so much around food. Our daughter has a digestive disease called Eosinophilic Esophogitis. Because of the damage it does to the lining of her esophagus her food is severely limited. She has strictures in her throat when she eats any diary, fish, soy, nuts, wheat and can have trouble swallowing without food getting stuck. I struggle every day with food in our society and it sometimes just plain hurts to have to have her 'not eat' what everyone else is. On that end I know what you're going through. I wish you blessings as you continue to help your beautiful daughter find her way.

  5. Lucy is so lucky to have some awesome parents who keep her healthy and look out for her future. Such a sweet post and a reminder how eating healthy and moving can make us all feel better. I pray for sweet Lucy and others with her syndrome.

  6. It's so awesome that she loves swimming. My (asperger's) son also has problems with exercise but loves swimming.We also bought him a Mobo Triton recumbent bike that he loves. He can finally bike around the neighborhood. It's been great. Lucy might like riding a similar bike instead of a traditional 2-wheeler.

  7. Lucy is lucky to have amazing parents and siblings around her.
    Our girls are swimmers too and boy do they love it! As others have said perhaps Lucy might benefit from a 'balance bike'. My 2.5yr old adores hers and has started to balance on it!
    Keep up the great swimming Lucy 🙂

  8. It's funny that you should post this, because I was just about to ask you about this. Your children are very in to fitness…. what age did this start? And how did you get them to love it? My daughter is almost 7, and although she takes ballet lessons, I would not say she is physically active. But I want her to be!

  9. The best thing about this is that it is a life skill and a sensory activity. While I sincerely hope you have some break through in the fight against blindness, swimming is a wonderful sport that can be enjoyed and even thrived in regardless.

  10. You are not being dramatic, at all. What a huge blessing that you have found a sport she loves and can continue for the rest of her life!

  11. I Love Love to find those places / locations / people that are willing to help a little extra and make my little one feel important! I have to tell you if she is at all interested in a bike there are options (you may already know) but we go to Shriners in SLC so I know that isn't really a trip down the street for you. But they "gave" us a bike that is so fantastic for my little girl! She is pleased as punch to ride it all over (if we could get rid of the snow and cold) I don't know the name of it but if you were interested I'd happily find out more for you. naonim (at) hotmail (dot)com

  12. I'm pretty sure that God had a special little girl and looked and looked for the best parents to take care of her and love her and help her flourish, and he found you and Dave. What great parents, and a sweet superstar.

  13. Small World! In Max's club volleyball team photo, the little guy standing on the chair (at the edge of the photo on the right) is my cousin's son! Too funny!

  14. I have a little sister with Down Syndrome and she has also struggled with her weight her whole life. She is in her twenties now, but from the time she was a toddler until she graduated high school at 20 or 21, she did therapeutic horseback riding. They were awesome with her (I'm sure putting up with plenty of tantrums and naughty days, as well) and taught her a lot. It was great for her to have a healthy physical outlet that she enjoyed and could do. I just love that there are people in this world who can give so much of themselves to the kids who need them.

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