It is interesting that your heart can simultaneously be elated and uplifted at the same time as it is being ripped out of your chest.

That’s how my heart felt on Saturday.

Time Out for Women was amazing.

I feel incredibly rejuvenated and spiritually “fed” from all that was said from the other presenters who I promptly fell in love with upon meeting. And I must admit it gave me a little bit of a natural high to be up there in front of that sea of beautiful women…all in their own unique struggles and joys. It felt good to get to talk about something I feel so passionate about: “Motherhood,” with my own amazing mother at my side. (Yes, she made it, and man oh man was I ever glad.)

There was no fainting or hyperventilating involved…in fact, I really don’t think I got one splotch. I learned so much from the whole experience and for that I am so grateful. I have much more to relate on the subject as soon as I get a minute.

But right now I want to concentrate on the fact that Saturday was a sacred day of sorts in another regard…without relation to all those lovely women in that conference center. You see, Saturday, February 6th, marks the anniversary of the day we got the dreaded phone call: The one from the geneticist informing us on no uncertain terms that Lucy did, indeed, have a problem.

February 6th was the day she was diagnosed with Bardet-Biedl. Even though in our hearts we knew full-well it was coming (we had done enough research to know this syndrome fit…like a glove), in the back of our minds I think we dearly hoped that maybe, just maybe, it would all turn out to be a bad dream. And we’d wake up and our life would go on as planned.

But it wasn’t a dream.

It was real.

And in many regards it slapped us in the face. Hard.

It is interesting to think about what has happened in a year. Our little family has learned and grown in ways we never thought possible. We have fallen more deeply in love with each other, we have cried together, laughed until we cried again, and worried. Countless doctors have been visited (and small pieces of my mind have been handed out liberally as needed). We have gone from worrying endlessly about blindness to obesity to heart problems to kidney issues and back again…around and around in one big circle.

A friend commented to me the other day how interesting it seemed to her that much of the sadness and mourning we had in the beginning with this diagnosis has evaporated. And in many ways she was right.

You see, in the type of journey we are on you meet many people along the way who make you thank your lucky stars that what you are dealing with isn’t worse. I’ve seen and heard things that others are faced with that I know would leave me curled up rocking in the corner. And it makes you feel almost silly to be so sad. Almost ungrateful to mourn over something so “small” and insignificant compared to all that is out there.

But this week, thinking about this anniversary of our “news” and fighting back the tears that I thought had dried up long ago, I have realized that it’s ok to feel the sadness. Because what I am dealing with is real. And in a sense, the overwhelming sadness is a step in the process of coping.

The things we deal with may not feel real to those around us…especially those dealing with much more grim outlooks in sight.

But it is real to us.

Others don’t see the devastated look on Dave’s face when he comes to terms, again and again, with how far Lucy has to go to “catch up” and the fact that even after all he can do, some things aren’t “fixable.” I feel the “real-ness” with the constant guilt inside that keeps telling me we must do more…we have to push harder…if we only try just a little harder we can find better doctors, we can change our family’s diet, we can raise enough money to cure future blindness … more that can be done to help is constantly staring me in the face, even when I’m so tired, and I have four other children and a dear husband who need me to spread myself between.

I bring all this up not to feel sorry for myself or to proclaim “whoa is me,” but to acknowledge that life is REAL. And we need to come to grips with the realness of it all to help us grow and become who Heavenly Father wants us to be.

It’s through our struggles that we can grow the most. As evidenced by so many other mothers up in Utah this weekend, we all have our struggles. Some seem small in the whole scope of things…we get a bad haircut or we can’t make a decision on which school will be best for our children. And some are huge, and loom darkly in front of us. Some are chemically depressed. Some husbands are unfaithful. Some children deal with chemical dependency. Some of our loved ones may have been sexually molested. Some have been through the most horrible ordeals we can possibly imagine.

But amidst that sea of good women on Saturday I realized once again that Heavenly Father is aware of us, individually. He wants to share our burdens. He’ll carry us through the toughest times if we’ll only let him. Although I do believe with all my heart that this ordeal with Lucy has made our family stronger, and although I thank my Heavenly Father continually for sending Lucy to our family with all her strings attached, sometimes it’s still sad.

Heartbreakingly sad.

And sometimes nothing feels better than to just bawl for a little while to get it all out. And that’s ok. It’s when we are enveloped in our sadness and sorrows that we tend to feel the hand of the Lord the most in our lives.

Because although our problems and struggles may seem small compared to the things that others face, He knows they are real to us. And He understands, and carries us through…if we let Him.And for that I am forever grateful.

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  1. Sometimes I have to remind myself that we came here to grow and become better and the only way to do that is through our trials. Thank goodness for the knowledge of the gospel!
    Thanks for your words of wisdom.

  2. That was beautiful! You are feeling the tender mercies of our Father in Heaven. What a journey. You have great perspective and yes, you should allow yourself to cry out those feelings when they arise.

    Thank you for sharing your insight and feelings.

  3. I loved this post – it gave me an insight into my mothers heart 23 years ago when I was diagnosed with juvenile rheumatoid arthritis at 15. How heartsick and alone she must have felt. I am sad that she didn't have a blog back then to pour her heart out and get support from so many insightful people. What a blessing it is to have this resource! Glad you had fun at TOFW. Are you going to do the one here in AZ?

  4. Is there such a thing as a bitter-blessing that brings ultimate sweetness to your life? There are so many blessings along the hard path to come! WE LOVE LUCY and the package she brings full of things that ultimately will bring the luster of the refiner's fire! You and Dave are true champions!

  5. I am new to your blog- I have read some of your past posts.

    Yes, life is real…sometimes I think we bloggers portray a "dream" like life or family. But, in reality, most of us would not post those days we cry, or explain how we have been "hurt", or talk about those deep struggles.

    Thank you for being open-I think if I read you often and never heard you write these words…I would think she is not real or very fake!

    Sandy Toe

  6. Shawni,

    This post hit very close to home. It was exactly a year ago today that Tyler and I walked out of Primary Childrens with 'muscular dystrophy' looming around my head.

    It's been a wonderful and heartbreaking year, and I know you've grown so much and it's different right now than it was a year ago.

    I remember crying in my laundry room a lot last year. THis year, it seems like we can handle it better – there are still moments – school work, struggles to move, being made fun of,etc. where I forget that this is our 'normal' now.

    I know how it feels. I thought the same thing yesterday.

    Your little Lucy is so lucky to have such a wonderful family and extended family.

    Sending love to you!

  7. I remember you writing a post when you first found out about Lucy…I remember you saying you were in the laundry room with a house full of kids and having to cope with the reality, not being able to fully break down because of your responsibility of "mother", (because you know we all have only about 30 seconds to "hide" in the refuge of the laundry room!), and then having to process what the diagnosis meant for you and Lucy and your family. I think the rest of our lives we mothers will have to do all of those things at once, like you said in your post…struggles will come and go, we all have a cross to bear…and that's why it's quite a hard job. We have to process, pray, contemplate, and find solutions, all the while we do hundreds of other things.
    Lovely post…and so true.

  8. You are an amazing person, thank you for being so open and honest. Your daughter Lucy is truly a gift, she can teach so much through this whole process, and you in turn, can teach it to us, now how cool is that! tara

  9. Thank you for your beautiful and inspiring words! It reminded of this quote that I love….

    “We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.”

    Lucy is in a sense that butterfly right along with you and your family. Because of who you are and how much you fight for her she will be more beautiful than you ever imagined. She already is!

    Thank you for sharing your tender feelings with all of us!

  10. Shawni, thank you for your inspiring post. I've been reading your book this week, and there are so many motherhood secrets that I'm going to add to the normal routine with my girls. I love the passion that you and your family have for parenting. Thank you for sharing your wisdom with the rest of us!

  11. My husband ran across your blog and told me to read it. I am so glad he did.

    We are in a very similar situation with our 6 year old daughter. Our daughter has a mild developmental delays and has a few other minor anomolies. We have visited with the geneticist and she has been tested for a few things so far, but nothing has come back positive.

    These situations bring up such interesting emotions. You want answers for what is happening to your child, but you don't really want anything to be wrong either.

    Thanks for sharing your wonderful insight. I wish I was as eloquent as you when I write about our struggles in our blog. Thanks again.

  12. "It’s when we are enveloped in our sadness and sorrows that we tend to feel the hand of the Lord the most in our lives."

    This sentence you wrote stuck out for me. It stinks to learn through pain, but it is oh so true. It will be five years ago in May that I learned that experiencing true sadness helped me learn what true joy really is.

    Thank you for sharing your heart–I cannot pretend to know what you are going through but your words give me a glimpse of your life and faith and I will learn from them.

  13. Well said! I am so touched by your ability to be so strong yet so vulnerable. You are an amazing woman and an example to all of us! I had a real "aha" moment when you wrote:

    "It’s when we are enveloped in our sadness and sorrows that we tend to feel the hand of the Lord the most in our lives. Because although our problems and struggles may seem small compared to the things that others face, He knows they are real to us. And He understands, and carries us through…if we let Him."…

    Thank you for sharing a special part of your life with all of us. We all have trials and crosses to bear and they are all difficult and sometimes heartbreaking. Giving ourselves permission to "fall apart" at times is vital to becoming stronger!

    Again, thank you, thank you thank you…Perfectly well said!

  14. I'm not sure that anything in life could prepare your sweet family for such difficult news. Tears are sometimes the best release when you are dealing with such a new situation. I think sometimes we can feel the comforting Spirit of the Lord telling us that things are just as they should be, but we can still be sad about it at the same time as accepting His wisdom. This was a beautiful post and I think you expressed yourself perfectly. Love you, Sora Eyre 🙂

  15. Thank you… great post, glad your mom showed up, and there were no splotches… I am sure you were fabulous..
    hang in there, keep fighting for lucy- she is just adorable!

  16. Your post was wonderful, there are so many things that they can "fix" or at least patch with this syndrome. Kidneys can be pretty routinely replaced. Most do not ever lose ALL their vision, plus they have it for SO long that they have excellent visual memories. And the loss is very gradual, so they do not just go blind over night. I often said when Ash was a baby that I was SO thankful she had a kidney defect – and not a heart or liver defect. They can replace the kidney pretty easy – but the heart and liver are so much more difficult to get. 3 years later Josiah was born and we experienced this first hand. BBS is a challenge – but not a death sentence. My girls are pretty happy – satisfied with who they are, and don't seem to notice they are different from the kids around them. They are so literal they do not understand or get it when people are teasing or being mean to them. This is really a blessings.

    You are so right -there are so many things worse than BBS out there.

  17. I was at TOFW in Ogden this past weekend and loved you and your Mom's inspiring words on motherhood – You were fabulous! … your book was sold out at the event! so I am patiently waiting for it to be shipped to me.
    Thanks for sharing your feelings and insights on mothering.

  18. Thank you so much for this post. It is EXACTLY what I needed to read today. Our situation is different, but very much the same. We are going through the fear and anxiety over finding a diagnosis and treatment options for our daughter. It terrifies me to think of what the future might bring… but I really and truly know in my heart that it will be okay.

    My daughter is very emotional and gets very, very upset during movies (even the happiest of movies)… I try to tell her there has to be a sad part or a problem part to make the happy part "extra happy"… I'm trying to remind myself of that too…

    Beautiful words. Thank you so much for sharing!

  19. Life is such a refiner's fire…I have to constantly remind myself that burdens and challenges are one of the main reasons we are here….and that we shouted for joy when given the chance to experience all of this opposition so we could grow and be tested.

    I appreciate your words…none of us are alone and we can do this ..together… walking in faith, side by side, sometimes reaching down to help someone up on those really dark days.

    My heart goes out to you and your family and little Lucy. I appreciate your insights as you push through this challenge. I can understand a little of what you are feeling. One of my children has Aspergers -Autistic spectrum disorder. It has been quite a journey full of all types of emotions and has required so much of our family. But, mostly I think we will look back and realize that this was a huge blessing because we grew so much from the experience and we met the test with faith (so far!)

    Thank You Shawni… and I wish I could have seen you and your mother's presentation. You are both such wonderful people and an inspiration to so many…

  20. Thank you for sharing Lucy with us. She is a lucky girl to have you as her mom! I'm dying to read your book…prayers to you and your sweet family.

  21. I just wanted to thank you for your words at TOFW in Ogden this past weekend. I know it is probably hard leaving your children and traveling to talk. I was so inspired by what you had to say and absolutely LOVE your "ideas" on motherhood. I bought your book at the event, and read the whole thing Saturday night! I couldn't put it down. I have also told everyone about your book and your little girl. Thank you a million times over for your words and inspiration. I have two little boys of my own- ages 3 and 18 months. I have felt heartache when Jack broke his leg, or Hank fell off the chair (again), but I can't even imagine what you are going through. I also love the name Lucy and will name a daughter that if I get a girl 🙂

  22. What a beautiful post! I am new to your blog and have been so inspired by your honesty and spirituality. you seem to find the JOY in all things, what a wonderful talent! my heart goes out to you and your family. I love this quote and thought you might enjoy it "The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart".
    Helen Keller
    Thank you for sharing you insight, faith, and courage

  23. I don't know how I found your blog, but I'm so greatful I have. Thank you for sharing! Your blog has been so inspiring for me to read!

    I'm 5 months pregnant with my 4th and just got news that our little boy has down-syndrome.

    This post was perfect for me to read! It really brought home to me that even though you feel blessed to have little Lucy in your life, it is okay to have days of mourning and sadness. After reading your post I really felt like it was okay for me to grieve the loss of a normal life for my child. I cried my eyes out.

    And now I have accepted what is to come. I am ready to welcome him into our home with open arms and prepared to love him unconditionally. Thankfully I am serving as the YW President in our ward and the theme this year is PERFECT for me!
    Joshua 1:9 "Be strong and of a good courage. Be not afraid, neither be thou dismayed for the Lord thy God is with thee whithersoever thou goest."

    Again, thank you for sharing. Your family is adorable!

  24. Shawni,

    I'm back again! I just found your blog and I can't seem to leave it.

    First it was your beautiful pictures. I'm really new to photography and want to learn so much.

    Then, I read about your precious Lucy and my heart was captured once again.

    I'm a mother of a special needs child as well. This post brought a flood of memories back to me, and like you "bitter-sweet".

    My son was first dx at the age of 4 mentally handicapped. At first that seems more then I could handle.

    As the years went on, so many other health issues were added to the plate.

    He's now 24, and the most precious gift God could of ever given me.

    Sometimes I ask "why" was I given this privilege.

    Without going on and on, the biggest hurdle we faced was at the age of 16 when he was dx with a brain tumor.

    Funny, the location of his tumor should of caused him to be blind! (wrapped around his optic chiasm).

    He's had 2 surgeries, chemo and rads. He's in remission now.

    Anyhow, I want you to know as a mom further down the road then you on your journey, God's amazing grace is truly sufficient.

    He will be with you each step of the way. There is so much to learn.

    Oh, I'm the mom of 5 as well. Now a Grammy and loving it.

    So nice to meet you♥

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