One of my New Year’s Resolutions is to write a thank you/love note every day. It has become one of my favorite things to do. It helps me find a whole new realm of appreciation and love for those around me.

Well, my thank you/love note for today is to the blog world. I cannot even begin to express how much all the words of support, and love, and wisdom, and understanding flowing over to us concerning Lucy have meant to us. Not only in the sweetest blog comments I have ever read, but in beautifully written e-mails as well. We hold each and every word of support so dear to our hearts, especially at this time. I really don’t even know what to say. A mere “thank you” just doesn’t seem to cut it.

And I’m stressed out because I want so much to reply to everyone who wrote such kind words…man, if people are that nice individually I should at least get back to them. But I don’t think that’s in the cards so PLEASE just know how much all the support and love and prayers mean to us.

It’s interesting because when we first got this diagnosis (almost a month ago) everything felt a little claustrophobic. There were so many thoughts going through our heads. So much worry.

I worry about Dave with his sensitive heart, who wants to always “fix” things that go wrong, and that he can’t really “fix” this.

I worry about our other kids getting the attention they need amidst Lu’s needs.

I worry about all the health issues…all the varying possibilities of what could go wrong.

It makes me nervous when people start talking about the foundation for the blind and braille…classes for young kids to learn to walk with canes, heart and kidney problems associated with this syndrome, the possibility of diabetes…

I worry about the possibility that Lucy may not get to be a wife and a mother some day.

And if she does, I worry about her not being able to see her husband…not being able to see her babies.

It’s interesting though, because time has changed the worry a little bit. When you’re on the outside looking in, all this syndrome talk looks like it’s so overwhelming, too big a burden to bear. All our anticipation and questions and worries loomed so huge in front of us in the beginning. But gradually we’re changing. We’re starting to see the big picture. We’re realizing how blessed we are that it’s as mild as it is. Yes, our lives are going to change. Yes, it will be difficult. Yes, there are heartbreaking times to come…I’m sure of it.

But gradually it’s like we’ve been elevated out of the “maze” of questions a little more each day so that we can see the big picture of where we’re going a little better. Instead of looking at dead ends at every turn, we can start to see what a huge blessing this can be.

My eyes have had their fair share of swimming lately. At first the tears were for Lucy and for our family. For days I was on the verge of tears all day. But gradually, after having a chance to digest the diagnosis, the origin of the tears has changed. Now the tears come when I think about how blessed we are to have Lucy in our family. I get to be her mom. You know how sometimes you’re just so thankful for things you can hardly see straight? Man I love that girl. I love the way her two front teeth look under the curve of her mouth when she smiles. I love to see her eyes glisten right into mine when she’s giving me an Eskimo kiss. I love to hear her belly laughs. I love to watch the older kids give her those belly laughs. I love to watch them try to help her with things. I love to hear them pray for her. And most of all I love to see the look in Dave’s eye when he works with her…so concerned, so full of love.Tears are also coming lately over how thankful I am for the extreme kindness of those around us. I can’t believe how thoughtful everyone is. The things people have shared with us, the love they’ve spilled out and the things they have done for us just make me so emotional. People have gone out of their way to bring us over a treat, or a note, or even a full dinner. It makes me want to be nicer. It makes me want to reach out to others more.

Now sometimes even if I want to fall apart I can’t. I feel too at peace. It’s like there’s this hand holding mine, and lifting me over the hard parts. It makes me know with more surety than ever that there is a God. And that He is good.

Very good.

And He’s watching over all that we do. No matter what trials we may face in life, no matter how we may not really deserve that guiding, comforting hand at times, He’s still there.

And sometimes, when we’re in the midst of sorrow, He reaches out to us even when we forget to ask.

So, I know things are going to be ok. Not the kind of “ok” we had always envisioned, but the kind of “ok” that is so good…the kind of “ok” where we are all going to learn much more than we ever anticipated and that will give us the potential to become that much stronger and that much better. And we feel like we are being comforted and blessed every step of the way.

Thanks SO much for all the support. I just can’t say it enough. Thank you.Thanks from this girl too.

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  1. I’m just a lurker but thank you for sharing your story with all of us bloggers. My youngest also has a chronic medical condition that knocked the wind out of me when we first found out. But time has passed and we have been blessed and sustained. Our family, especially our children, have grown so much.

  2. Shawni, sending you so much love & strength and peace in this very moment. You are loved. Lucy is loved. Your family is adored.

    May you feel blogland propping you up as you continue your journey.

    Much love from Virginia!

  3. Shawni,
    I have been thinking so much about you. I am so glad to read this post. Things will be better than “ok”…I just have faith they will. Lucy will make a wonderful wife and mother…look at her example! It will happen. I can’t believe for a moment that her precious dreams will not all come true…I know they will…I just know it! Thank you for letting me follow your journey. Much love from The Elrods. xoxoxo

  4. You are such an inspiration. I also know that our Heavenly Father is good. He will continue to be with you through everything. Thank you for sharing your story and uplifting others (many that you’ve never met in blogland) as you endure life’s challenges with optimism and faith. We will continue to pray for Lucy and your family. I will continue to thank my Heavenly Father for you and your great example.


  5. Shawni, I went to ehs with Talmage, and my sister Holly is friends with Saydi, so I happened onto your blog a while ago, and love checking in periodically. I guess that’s the amazing, yet random connections that happen on the world wide web. But I wanted to thank you for your inspiration as a mother and a wife, for sharing personal things that bring both joy and heartache, and just the dayliness of life, of parenting. May the Lord bless you, your family, and little Lucy at this time.

    Ada (Hinckley)

  6. We love you guys Shawni. You are in our prayers and I hope you can draw strength from all of the love and support around you. You are the most positive person I know! Lucy and your whole family is lucky to have such a great mom and wife! We’ll see you soon.

  7. you truly do amaze me. i’m so impressed with your perspective, and i’m so grateful that you’ve felt that very needed comfort to help you through this. you are all so so loved.

  8. Man o’ Man Shawni! I am bawling my eyeballs out right now! I know what it is like to have something extremely rare happen to you….
    But,now you know, and just take it one day at a time….
    One thing I know for sure…Heavenly Father will give you the strength to do whatever it is you need to do! Your sweet little Lucy will be in our prayers along with you and your family! Please, please, let us know if you need ANYTHING! Sure do love u!

  9. You’ve sure been on my mind… it’s so tough when the trial comes to a child, isn’t it.

    I was talking tonight about my mom’s cancer… understanding so much of what you are saying and this cycle of emotions. And now, looking back, I can see sanctification that could come in no other way. Man I wish it didn’t have to come through cancer and my angel mom for us and Lucy for you. But the miracle in the Atonement is so real and so clear. Especially in situations like this.

    I’m praying for you guys and just know that there will be a million little miracles, daily!

    Thank heaven for the plan and that she is yours and you are hers. She’s in the right place with the right family!

  10. Any words I search for seems small compared to both the magnitude of the situation you face and the magnificence of how you are embracing this reality. You and your family are a true inspiration. We love you.

  11. You are one strong woman Shawni. I just read your Lucy post and almost could not breathe.

    While I don’t want to tell you how sorry I am, because that would be unfair. You have a lot going on and a lot to come. Just know that you are in a lot of peoples prayers!!!

  12. Shawni, though I’ve never met Lucy and the last time we’ve seen each other was about 8 years ago, I want you to know that I am backing Lucy up 100%, and want to join the I Love Lucy club.
    I just thought you might like to know, my cousin Mark was born in Germany last year with one in six medically recorded cases of MADD (aka GA2). Against all odds, he is alive and well.
    I don’t want to tell you not to worry. It’s perfectly normal to worry. But rest assured that there is no way anyone as sweet as Lu could ever not lead a wonderful and happy life (with her own fan club, too)!!!!
    The whole Malatinszky family sends hope, luck, and love from VA!

    ~Anna Malatinszky

  13. Shawni,
    You have been on my mind constantly since I read you post on little Lucy’s diagnosis. I had to read and cry through your words several times and all I could mumble to myself was that this cannot be happening to Lucy.
    Over the past few days every time the six of us sat down for a meal or a little break around the table we ended up talking about you guys. We couldn’t help connecting the news of Lucy to our two baby nephews’ very alarming conditions. Anna just mentioned in her comment (isn’t she sweet that she felt an urge to write to you?) that my sister’s baby was born with an extremely rare genetically inherited metabolic disease that will give us the deepest worries every day of our lives, even though he has been in a relatively great shape since he miraculously survived his infant weeks. A few months later my brother’s family had a baby born at 24 weeks, at 1 lb 11 oz. He also, amazingly enough, is developing beautifully, but as much as we want to believe that everything will be perfect with him we have no way of knowing at this point.
    Amidst all the worries we have been going through with these little cousins I realized that the priorities and core values have shifted tremendously in our whole large family. We used to believe that our goal in parenting was to bring up kids that successfully measure up against the standards. Well, our perspective has definitely become more complex and more forgiving. A good medical exam result from these two little guys means more to us now than anything we had ever thought mattered in life. It’s amazing how these events bring out the best in everybody, feelings and deeds we never thought we were capable of.

    I know that your family, close and far, with its remarkably strong love and support and spirit will make sure every minute that Lucy will be happy, despite any health issues that she might face. I honestly believe that most people, no matter how healthy, will never get a chance to have a life as meaningful and happy as Lucy’s will be in your wonderful family.
    We love you!
    Szilvia and the Malatinszkys

  14. Shawni, your post took my breath away.

    Lucy is truly about the most amazing kids I’ve ever seen. Her eyes, her voice, her light, everything. Yes, I know I’ve met her what? twice? But that girl has some special stuff to do in her life!

    She will be in my prayers every day. Give her a squeeze from me.

  15. It is interesting that when you first deal with something like this you go through a stage of mourning. You mourn the loss of the life you thought your child would have and now may not. You are mourn the difficulties they will endure and how others will treat them. Soon, as with any trial, the light shines through and then the blessings began to come. You began to see that this child has been blessed with a special spirit to deal with such a challenge. You also see strength in yourself and your family that you didn’t realize before. You realize the “ideal” situation wouldn’t have brought the growth and closeness to the Lord that has come through all of this. Lucy’s stubborn personality is no coincidence…..she is a fighter. What a blessing that you all have each other as you work through this! My heart aches for you. I love you your family and keep you in my prayers daily.

  16. Hi, I’ve commented before on the Lucy tantrum throwing herself down on the pavement post. I was wondering if I could get your email address so I could send you a little something I hope will brighten your day.

    You have such a powerful way of expressing yourself that it’s hard not to get teary eyed and I’ve spent an hour tonight putting a little video together. (I’m also hoping I go in to labor tonight with my 4th, so it was a great way to think about something other than myself) Thanks for inspiring others through your words and your testimony.

    My email address is or my blog is

  17. Shawni we are praying for your family and Lucy and hope you gain the strength and peace you need and deserve. We love you so much. Lucy is so lucky to have parents, family and friends that love her unconditionally and will do anything in the world for her. She will have her hard times, but she will grow up to be one of the best women people know!! We love Lucy fan club will be HUGE!!

  18. Oh and just wanted to add how amazing YOU AND DAVE are as parents, Ive learned so much from you already….especially about being POSITIVE in your family life…and with your little LUCY, I mean, all along your blog name was 71 toes!!

  19. Shawni
    I’ve been out of town, so haven’t checked your blog until today. You are simply amazing. What life-changing news! My heart aches for you. You are an incredible mother–and you go about life with such grace and faith. You are such an inspiration to me. I just love you so much and will be praying for you and your sweet family. Darcy

  20. Shawni and Dave,

    I’m the father of a 3 year old boy with BBS. Like Dave, my instinct is to learn and fix. So I’ve spent the last 3 years reading everything written on BBS over the last 15 years.

    I’d be very happy to share everything I know, as well as our experiences with our son, with you. You can reach me at timothy dot ogden at gmail dot com. I’ll also post this comment on your other entry.

  21. I agree, Lucy sure is lucky to be a part of such a loving family. But, boy oh boy, are you ever blessed to have sweet Lucy. She’s a doll and was placed with you for a reason. Millions of reasons I’m sure. I feel like I’ve learned so much through reading your blog and I don’t doubt that will increase ten fold from now. You’re amazing. You AND your entire family.

  22. Hi Shawni,

    I am a fan from Munich (we are living here with our three young daughters Kate, Ella and Claire for a few years but typically live in Seattle). I follow your blog daily for inspiration and to see your beautiful pictures of your oh-so-sweet and ever-smiling family. My girls love seeing the pictures and hearing your stories. Thank you for sharing!

    I am more inspired than ever by your recent post about Lucy – you are such a great writer and expressed your emotions so well and in such a touching manner. Lucy is blessed to have such an amazing family and what a blessing she is and will continue to be to all of you.

    As you go through this journey know that you have people literally around the world hoping for the best for Lucy and your family.


  23. Hi Shawni,

    I am a fan from Munich (we are living here with our three young daughters Kate, Ella and Claire for a few years but typically live in Seattle). I follow your blog daily for inspiration and to see your beautiful pictures of your oh-so-sweet and ever-smiling family. My girls love seeing the pictures and hearing your stories. Thank you for sharing!

    I am more inspired than ever by your recent post about Lucy – you are such a great writer and expressed your emotions so well and in such a touching manner. Lucy is blessed to have such an amazing family and what a blessing she is and will continue to be to all of you.

    As you go through this journey know that you have people literally around the world hoping for the best for Lucy and your family.


  24. I love your outlook! It is uplifting. Lucy is a doll and always will be. We hope, and wish all the best for your sweet family in the years to come! In our prays!

    The Sloan Family

  25. Shawni,

    I'm just a lurker and here I am posting on an old post, but I wanted to let you know that I admire you and your family so much. I also wanted to share with you a quick story. I read your words and my heart aches when I think of you saddened by the thought of someday Lucy not seeing her husband. I have two very much loved blind people in my life. It's funny, b/c I didn't even realize it in that sense until I read your words and thought to myself, oh how hard.

    One of these shining stars in my life is the child of close family friends who has been dealt a horrible deal at life. She has been diagnosed with Batten Disease, a degenerative neurological disease which has stolen her sight and if we don't stop it will slowly continue to steal everything else. No child has ever survived Batten disease. Her name is Taylor and she is so loved. Everyday we think oh if only it had been "just" blindness (she was first misdiagnosed with RP). Blindness was manageable. In fact, sweet Taylor, like most children, is so adaptable, that she maneuvered just as before–that is until there were other Batten disease related complications such as seizures and balance problems.

    The second person is my best friend. She's my age (late 20s), went to an ivy league, and is now in a graduate program getting her masters in public policy and law degree. Oh and she has a beautiful marriage (with a sighted husband) and the most beautiful baby boy you can imagine. I am always forgetting she's blind. She literally does it all but drive.

    I know every story is different. And I know that Lucy will face some challenges that my best friend hasn't had to deal with (and also thank god won't have to deal with all the challenges that Taylor is dealing with).

    I don't want you to feel that I am just some stranger needlessly telling you that "it could always be worse" (b/c honestly, that is never helpful, now is it?), but I just want to tell you that it will be okay. That blindness is scary (and my best friend and I have talked about it for hours on end), but… that Lucy will be okay. She, like my best friend, will have the love of a wonderful family and supportive community, and someday people will say about her as well, oh yes, I forget she's blind. And that will be because she will be so much more than a woman with blindness. She will be able to do, as my best friend likes to say, everything but drive. (and who knows… with the way technology is moving… that might not even be true by the time Lucy is an adult).

    Love to your family, and I hope that this comes through to you as the (akwardly worded perhaps) well-meaning post as I mean it to be and not as the dreaded russian fable warning that it could always be worse.

    Much love from North Carolina!

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