A couple weeks ago my neighbor came over to borrow a recipe.

Amidst our short visit she asked how Lucy was doing. I joked with her that I probably owe her some ear plugs and some treats for putting up with all Lucy’s antics she can probably hear with precision from her house ten feet away. And I explained all her progress in school.

That sweet neighbor looked me right in the eye and said, “That girl is a miracle.”

And I’m so thankful for that reminder because you know what? Lucy is a miracle.

But man oh man, she makes us worry like the dickens.

You see, Dave and I are worriers.

Worry is a “quality” that comes to us quite naturally.

So Lucy always makes us worry. If it’s not her eyesight then it’s her moodiness. And if the moodiness is on hold we worry about her mental progress. And lately those big worries have been pushed to the side as the more obviously present worry about her weight becomes more real and ominous.

We search for nutritionists who can help us with more than just telling us not to feed her sugar and soda (duh). For years we’ve been able to sneakily substitute in some dried apples or “delicious” grapes when the rest of the family is eating cookies or candy. We mix a tablespoon or so of whatever drink (juice or milk) she wants with water and it doesn’t phase her. Not until recently has she started to give us the look, “hey wait, I saw that move…” I don’t know whether to rejoice or cry that at four-years-old she “gets it” that we’ve been pulling the wool over her eyes for so long on the delights of sugar.

It’s crazy how in our culture people look at you like you are completely nuts because you don’t want them to give your chunky four-year-old a bowl of ice cream. She doesn’t even crave that stuff and is pleased as punch with a carrot and non-fat dip, so why give it to her?

We don’t have junk food around…even crackers or fruit snacks…we try to stay away from anything processed. Someone once commented on this blog with a question about how in the world we keep our weight down with all the junk food we have and I had to laugh. Little did that reader know that I was just showing the birthday treats, and an occasional holiday indulgences that we have to keep some sort of semblance of normalcy in our culture that is so chock full of treats and preservatives. Little did she know the blood and sweat that goes along with distracting a very-difficult-to-distract four-year-old on the sidelines to make our spinach smoothies mouth-watering and rice cakes delightful.

Lucy does have sugar here and there. We don’t want her to feel “deprived” and we definitely don’t want her sneaking treats or hoarding things. But we are trying our darnedest to teach her (and the rest of our kids) healthy eating habits because NOW is the time to learn that stuff. And because we care so darn much about her.

…and because I’ve seen enough more mature kids grown-ups with her same syndrome to know that if we can help with this it’s going to make a big difference in her life.

But despite our very best efforts and the fact that Lu is pretty active jumping in the trampoline all day and running after her siblings, she gains weight. And it makes me ache for her future.

We want her to have so much joy in this life and being healthy is such a key in the joy factor.

BUT, you know what? My neighbor was right.

Lucy is a miracle.

Sure, she has her issues. And those issues are enough to make the hot tears prick at the back of my eyelids over and over and over again.

But she can walk. She can talk. She can run. She can play. She can reason. She’s actually smart as a whip on getting just what she wants.
She has a great sense of humor. She has the best belly laugh I’ve ever heard.

She’s potty trained.

And she can almost make a “four” with her fingers to tell people how old she is:Sometimes it just helps ease the worries when you know you are working with a little miracle.

We love this girl so much.

Similar Posts


  1. This is one of my favorite post..it brought tears to my eyes b/c I can read all the "love" you have for her b/t the lines. You seem like a wonderful mother and she is a beautiful girl. Her eyes are amazing and she is super cute!

    May the Lord give you strength during those hard days! I am a worrier…I am getting more and more as my kids get older…

    Sandy Toes

  2. One different level, we can relate to your concerns. Although a bit different, there are still concerns with moods, nutrition, and learning. Although our son's food doesn't "stick" to him, so he he is just skin and bones, and he doesn't play or speak well, I can just like you see the miracle in him. He is delightful, he smiles, and enjoys learning, and he IS finally potty trained! Man alive I know what you mean! I think and pray for your family often. I love your blog and the spirit of your family and home.


  3. You are definitely not alone. My daughter (13 yrs old now) has Prader-Willi Syndrome, and her biggest fight is her weight because of it. Lucy reminds me very much of Baylee as a child. I also have a cousin with a son that has Bardet-Biedl Syndrome (as well as another baby on the way that has been identified to ALSO have BBS). It's so hard to have people judge you for your decisions about what you allow your child to eat. Also, on the other end of the spectrum where you are allowing your "overweight" child that one special treat for the month.

    Anyway, I follow your blog occassionally and just wanted to let you know you aren't alone. It's TOUGH being a parent to a child with special needs, only those of us that live it truly understand it. Lucy is in my prayers.

  4. We do the no processed/no sugar thing too. It's hard because you don't want your kids to go to school dying to swap lunches or inhaling goodies at church functions but to be well balanced individuals just the same. Holidays are awfully difficult because goodie making is enticing but long term benefits are huge.

    I think of what a miracle Lucy is for you guys, all of the time. I've been going through my own I.W.A.N lately and with the super scary, early arrival of Eliza followed by two pregnancy losses before her, I really need to be content with the miracle that she is for me.

    Thanks for your thought provoking post today. Miss you guys — marlowe

  5. love that lucy.

    you're an inspiration shawn. all of us need a reminder not to judge….and to teach our kids good eating habits.

    again, you're making me cry.

    Love that little miracle, and love you.

  6. I happened upon your blog a few months back and cannot tell how inspiring you are. Thank you for all the fun as well as the touching posts. I too think Lucy is amazing and so very beautiful. Yes, truly a miracle! I'm so thankful for a Heavenly Father who loves us and for women like you who inspire soo many.

  7. I loved this post! We too have a miracle boy in our life. With all of his issues, I am so thankful that he is mine! Some days are harder than others to remember that though. Thanks for the reminder.

  8. I know exactly how you feel, and Savannah will be four in January and is just starting to realize when we are at family things and such that everyone else is getting a treat and she doesn't get one herself, or when mommy has a snack, because I can't live without chocolate, she wants some too. So, now I'm going to start cooking and buying things as if she were dietetic. We'll see how it goes. No matter what I do she keeps gaining weight, and it just breaks my heart for her.Last month we saw another dietrition. I had been giving Savannah dried fruit for her snacks at school and she said that they are almost just as bad as sugar. I felt awful. Thank you so much for your comment. I would love to talk to you and compare ideas and I would love to hear how you got Lucy potty trained! When is a good time to give you a call?

  9. what a beautiful post about your sweet lucy! brought tears to my eyes and a lump in my throat. she truly is beautifuL! inside and out! you are doing a great job with her! that stubborn side IS ExACTLY what she needs in this life to go with her syndrome,she has to be a fighter and she will thrive because of it!!!
    thank you for sharing lucy with your readers! she is just a beautiful girl!

  10. Well, as much as I'd hate it I guess I'd have to cut those things out of your life. It's not like your kids won't get it from a lot of other places… but you can shelter her while you can to preserve a non-sweet-tooth….
    As I've lost weight, there's a lot of things we've cut out.
    And now we eat cookies made of beans, and it's nothing I'm particularly proud of. 🙂

  11. You and your family are amazing! Yes, she is truly a miracle and I have grown to love her through your beautiful posts about her…tantrums and all! Oh, and seriously, could she be any more beautiful?? Her eyes are fantastic:)

  12. please share your mouth-watering green smoothie recipe! (or any green smoothie recipe at that 🙂 Love your blog and appreciate your insights.

  13. Hi there!I live in Chandler, and I am a friend of Kara's. Kara and I have been blog buddies for a long time. I also have a son with a disability (autism) and I write about it from time to time. I am new to your blog, but found this interesting because it has been on my mind a lot. Some of us will never be a size 2. I am 6'2" and was not as blessed as you to have such a svelt frame, but, honestly, I think it is okay for us to be different. And I realize that for some, obesity is an actual condition and problem, but we need to have some tolerance as well for the weight fluctuations of others. Meaning, we should be less concerned about what she will look like, and more concerned about changing the accepted image of women in general. I am sure she will be beautiful inside and out, no matter what she weighs. 🙂

  14. This was a touching blog. Lucy is a beautiful girl. I heard you speak at TOFW in SLC last month and felt a connection to Lucy. She looks so much like my 2 year old. As I researched Lucy's syndrome I have discovered that 2 of my kids may have the same syndrome. I am in to process of trying to educate myself on it. What kind of specialist would you suggest I meet with to get more information and a possible diagnosis? Any information you could give me would be so helpful. Thank you!!

  15. I found your post through PB & J and I haven't been able to stop reading for the last hour. This post made me completely break down. Lucy is so beautiful. Just looking at pictures you can sense her sweet spirit. Thank you for sharing these. I definitely want to catch up on the rest of your posts!

  16. A friend of mine told me to read your blog- and this post brought me to tears.

    I have a 5 year old with Kabuki Syndrome & Autism and similar to your daughter their are many concerns and daily struggles. I have to remember those little things and be grateful for the milestones she HAS accomplished.

    I admire all you and your family do for you – I know truly how exhausting, painful, emotionally draining it Can be – Yet how rewarding, exciting and joyful the simplest and almost forgotten milestones become.

    Prayers and Peace to you and your family

Leave a Reply

Your email address will not be published. Required fields are marked *