Thursday, September 8, 2016

the buck stops here

Sometimes I think it's funny how we smile for pictures even when our hearts are breaking.

I wonder if everyone does that or if it was just me and Dave in this picture taken a couple days after our 21st anniversary that we spent at the bi-annual BBS conference in North Carolina:

Are those smiles a big, giant lie?  Or is there just something inside, some part of human nature that wills us to keep going.  To get up.  To move on.  Maybe subliminally our brains were telling our bodies that if we just keep smiling it will help us get over the fact that we realized more than ever before at that conference what our future holds.

What Lucy's future holds.

And coming to some serious grips with that reality made that conference tough.

Really tough.

Every conference we've been to before has been uplifting and filled with hope.  Maybe it was because Lucy was young enough that all the research was still so promising.  We had time.  We were "just on the cusp" of some serious retinal discoveries.  Some clinical trials that were on the horizon we hoped would change the course of Lucy's vision loss.  Of the obesity that BBS kids battle.  Of kidney and heart problems.  But this year as Dave and I sat there watching slide after slide about gene mutations and insulin resistance our hearts sunk.

I want to be clear that the conference itself was just as good as ever.  So many bright, wonderful people working their tails off to help BBS families.  The BBS board members have worked so hard to make this happen and we are so grateful for their valiant efforts.  So many good, strong BBS families full of love and hope and I think in general the families involved were uplifted like Dave and I usually are.

But reality just hit the two of us kind of hard this time around.

Lucy's vision is getting worse.  She still manages just fine, but sometimes it stops me in my tracks when she can't see something very obvious.  And I feel like we are always grasping at straws to help her with her weight and other BBS issues.
Not in my wildest dreams did I envision that my motherhood career would take me to Duke University where I would sit in a room full of families learning about neurons and cilia, all of us fighting with everything we have to hold on and digest the information, that we might grasp some sort of lifeline to help our kids.
But there I was.

(Those are just a little taste into the hundreds of slides that were shared.)

The bright spot of the conference was that Dave and I (along with some other fund raisers) got to give a giant-sized check with a portion of what we helped raise at the Turkey Trot last November (back HERE) to help some researchers who have started a new branch of research that is making some great strides to help BBS families.
So that is special thanks to many blog readers who donated and hundreds of others there on the actual Turkey Trot day.


(The majority of the money raised has gone to the Clinical Registry which is quite costly to get off the ground and run, and is off to the races with 300 registrants at this time.  Pretty exciting.  That portion in the check up there is going to those men up there who are working on that new branch of research...we want them to know that we as BBS families back them 100 percent by donating a portion of the money they need to get it going.)

This guy below has been helping BBS families since before Lucy got her diagnosis and we love him.

There are more and more discoveries about BBS all the time.  When Lucy was first diagnosed there were only a few BBS gene mutations that they were aware of.  Now they have discovered 23 of them.

And each of those different genes can have various genetic variants from that which helps explain why it is so tricky to figure out why each individual is affected the way they are.

Thank heavens for good friends who "get" this whole BBS business so well since we are all in it together.
Over the years we have shared a lot, these families and us, and this time in particular their camaraderie meant even more than ever to me and Dave.

This BBS family board also has such a tender spot in my heart:
I know a thing or two about all the work that goes into a conference like this since I served on the board for a couple years myself.  It takes a lot of blood, sweat and tears to pull off something like this.

So grateful for all those people who help "mourn with those who mourn" and "comfort those in need of comfort" when the going gets tough.

Although this conference was a dark spot for our spirits since we came more to grips with the reality some of the research and clinical trials may not be fast enough to help Lucy, it feels good that there's hope it will come fast enough to help some of these bright, wonderful kids and their families who we have grown to know and love over the years.
And who knows, we are still hopeful all this research will still be able to help our girl some day even if it's a reversal of some retinal degeneration (that is a huge possibility...we hope!)

We are so grateful for this Lucy girl of ours.  She has changed our whole family for the better.  We learn from her every day.  And man alive that girl has so many supporters and people who adore her and would do anything for her.

But all this time later I can still hardly hold back the tears of desperation that linger from those days we spent at Duke University where we realized more than ever that the buck stops at us.  Sure, there are many larger forces at work that I'm confident will make a difference somehow some day.  But our responsibility as parents looms large and ominous as we realize there will never be a time when we can stop pushing.  Bigger issues await as Lucy grows older.  With friends, learning (this usually perfect score girl is coming home with so many red-marks on her math papers as she is trying to grasp the new 4th grade concepts), how to maneuver as she grows older with lingering vision, healthy eating habits, and a whole slew of other things we worry constantly about.  

I like to talk about all the joys of parenting on this blog.  But the hard, cold truth is that amidst all those joys that are so apparent and real, sometimes parenting is a heavy load.

And the buck stops at us.  I hope I can remember that God is there to help us carry that load.


  1. Thank you for your words. Parenting can be such a harrowing experience on so many levels. There are heavy burdens to be carried. How grateful I am for our Savior that can shoulder such burdens for us! I pray that you and your family will find peace and comfort during all this. Hugs, hugs, hugs. Know that a stranger is mourning and praying for you.I only wish I could do more.

  2. Parenting feels so heavy at times. And although I don't have the same loads to carry know that I care and pray you'll have comfort and strength to constantly find "the new normal" as Lucys vision changes.

  3. Shawni, Thanks for sharing your heart and thoughts for us on this very tender subject. Whatever challenges Lucy faces now and in the future it's very clear you, Dave, her siblings, and large extended family with shower her with love and encouragement to support her in being the best Lucy she can be. As she becomes a bigger kid, a teenage, and a young adult I hope she will be PROUD of the hardworking, loving, girl she is. It may be a challenge to encourage her, and other, to not compare herself and her many accomplishments to those of her typically developing sisters and brother.

  4. im glad that lucy has you and that awesome team of people that care about her and are doing all they can to enrich her life. hugs to you!

  5. Check out Dr. Ben Bikman's research on insulin resistance. He's a professor at BYU and is working on this subject. Maybe some of his research will be able to help Lucy.

  6. Yes! Thank you for this post. As I read it tears just streamed down my face because I get it. Not the BBC part, but the weight of my daughter's trials feel just like what you're describing. My oldest daughter is almost 9 and for about 3 years she has struggled with severe OCD (not germ stuff, more like deep, anxious, intrusive thoughts that lead to compulsions). I know that is nothing like what you are dealing with with Lucy, but in our story OCD is the struggle. Today we went to therapy and the therapist was reminding me again that this will not go away. She will learn to cope and hopefully function well, but it will never go away, so I have to adjust my baseline expectations. That reality is so hard for me because it's so hard for HER. She struggles so much. She feels such burden that no 8 year old (or adult!) should have to feel. It breaks my heart all the time. She has learned all kinds of coping mechanisms, but in the end it's up to her and us to continually fight this. We've read great books and learned so much, which is sometimes good and sometimes so discouraging. I'm emotionally exhausted today just thinking about it, even though right now she's actually doing relatively well. Anyway, I just wanted to share that while our trials are very different I can relate to your heartache as well as the weight of the burden. This was not in "my plan." This is not in the plan I envisioned when I held that precious baby girl. It's not what I saw coming when this happy, silly, smart, sweet girl went off on her first day of school. This post served to "mourn with me while I mourned" today. Thank you =)

    1. I should also add that while this isn't the reality that I envisioned, I mean it every time when I tell her that she was given this trial for a purpose, and that she was given to me because Heavenly Father trusted me to care for her. I do have a testimony that these struggles we have are preparing us to be the people we need to be.0 =)

    2. Shawni, thank you so much for your honest and heartfelt post.
      Annie, I am so sorry your daughter is struggling with OCD. My child faces similar struggles, and I want to ask if you've explored PANDAS/PANS as a diagnosis? It is basically an autoimmune disorder in which a child's body overreacts to infection (typically strep, but also mycoplasma, Lyme, and many others) and floods the system with antibodies that travel to the basal ganglia of the brain and cause many neuro-psychiatric symptoms, especially common are OCD, anxiety, and intrusive thoughts. There are many pediatricians who do not understand it well enough as it's an emerging field of study, and they may rule it out, but it's worth finding a specialist to dig a bit deeper, and see if there might be some relief for your sweet girl and a return of her real self. I'm copying a long list of typical symptoms (of which children may display only a few or many), and would refer you to to find a practitioner in your area or find out which doctors will do a phone consultation. Best wishes :)
      Symptom presentation and severity can vary from child to child. It can also vary in each exacerbation. Below is a list of possible symptoms a child may exhibit. Not all need to be present. Not all possible symptoms are listed.

      BEHAVIORAL REGRESSION - This includes baby talk.
      DETERIORATION IN SCHOOL PERFORMANCE - This includes deterioration in math skills, inability to concentrate, difficulty retaining information, and school refusal. School performance can also be a result of another contributing symptom, such as OCD or severe separation anxiety.
      CHANGES IN HANDWRITING - This includes margin drifts and legibility.
      SENSORY SENSITIVITIES - This can include being sensitive to touch, sounds, and noise. Simple touches may feel like they are hurting. One may not be able to stand the way socks feel or the texture or temperature of certain foods. Sensory processing problems can also cause difficulty in finding an item when it is among a vast selection of items. For example, a child may have a hard time finding a shirt in a full dresser or finding words in a word search.
      SOMATIC SIGNS- This includes sleeping difficulties, enuresis, frequent urination, and bed wetting.
      HALLUCINATIONS - This includes both visual and auditory hallucinations.

    3. Going to research this! Thanks!

    4. My daughter also has/had this type of OCD and I understand your fear and your feeling of helplessness. I was told that she would need to be medicated at 13 and to have a certain set of expectations for her future. WIth the help of a supurb naturopath we have been able to avoid medication and mostly eradicate the OCD. We did genetic testing and this pointed us to the supplements she must take to maintain optimal emotional health. If she misses more than a few days she feels it. She is also gluten free/dairy free. Our path has been long but with the support of our pediatrician and naturopath we have dramatically altered that original diagnosis. Hang in there. Never give up on conquering the OCD. It is possible.

  7. My heart breaks for the hard things your family has to deal with, but you all handle it with such grace. I truly love to see glimpses of how you are raising your wonderful family and am so grateful for your example as I am in the very early stages of raising mine. I understand that your life isn't perfect, but you sure seem to have made your own version of "perfect" and I really hope that I can be as proactive with my children as you have been with yours. Love and prayers for Lucy.

  8. I have a fourth grader with a different challenge. I understand the roller coaster of grieving. It's the first thing we were told about after the diagnosis.

    I keep having to tell myself that while it effects me it's not happening to me. It's happening to him. My role as parent is to love him and learn from him, I can't fix it. I do wish the universe would stop using my kid to teach me valuable lessons. My success at parenting has nothing to do with finding a cure or innovative way to manage his issues. And I'm grateful it's not fatal. And I'm grateful he was not born a generation ago. The world has gotten more empathetic.

    I am sad to hear her vision has changed again.

  9. So tender and so sad. My oldest has autism and I have similar experiences. Moments of soaring joy and hope and moments of devastating grief and worry. Thank you for your reminder to turn to the Lord- who will help carry me and him through this challenge and all others. Really, truly.

  10. We wear those "everything's ok" smiles for photos too. And the reality is, in the grand scheme of things, everything IS ok. We're safe and loved, and healthy (all things considered). But we fight similar fears. Our oldest son woke up one morning and suddenly couldn't use his right arm... just like *that*... literally overnight. There is no good reason, no known cause, and no cure. It's been nearly two years, and there are times when I forget and catch myself getting frustrated at him for taking too long to complete a task or not reaching out to grab something from me as soon as I ask him too. But it's not because he doesn't want to... it's because he can't. And through it all, he has been brave and hopeful. And so we must follow suit. We'll be brave and hopeful, we'll advocate and encourage, we'll celebrate and mourn over and over again. Our stories are so different, but our fears and heartache are the same. Thanks for your transparency! (if you want, you can read my boy's story on my blog... under the #PrayForRyder category)

  11. I have an Autistic son- I relate more to this post than you can imagine. Thank You!

  12. The thoughts from your *mommy heart* have touched us all today. I will continue to pray for your Lucy. So thankful we have Duke Hospital and their research here in North Carolina. My BIL was just diagnosed TODAY with Coats Disease. We are so thankful for the treatments that might help fight blindness in him. Praying for your Lucy as I pray for our Nic. Thank you for sharing your heart so that others don't feel alone.

  13. oh Shawn, i love you and I love Lucy. You are both strong and beautiful. (so is dave). Thanks for writing all this, being so honest.

  14. oh Shawn, i love you and I love Lucy. You are both strong and beautiful. (so is dave). Thanks for writing all this, being so honest.

  15. Shawni, thank you for sharing the tough days as well as the bright and beautiful days. It is so good that you are doing everything you can to arm yourself with knowledge, but at the same time that knowledge is a heavy burden to carry. I get that. A couple of the slides you shared in the pictures jumped out at me because of information we received from our latest round of genetic testing. I'll shoot you an email.

  16. You don't know me but I have been a long time reader of your blog. I am grateful for this post today...and especially grateful for your last few paragraphs. My son Max was diagnosed with Type 1 diabetes this summer and whilst it's not the same as your Lucy's condition it does hold some of the same feelings. I had no choice in this happening to my son, I cannot change it...all I can do is simply try to help him manage it. It is constant, it is life changing, it is life lesson learning and it is bonding for us as a family. It will forever change my son and the lives of his 4 brothers. But it is not the end. We will manage in this life and hand over to God what we cannot take upon our shoulders. Thank you for being real and sharing.
    Stacey Morgan

  17. You don't know me but I have been a long time reader of your blog. I am grateful for this post today...and especially grateful for your last few paragraphs. My son Max was diagnosed with Type 1 diabetes this summer and whilst it's not the same as your Lucy's condition it does hold some of the same feelings. I had no choice in this happening to my son, I cannot change it...all I can do is simply try to help him manage it. It is constant, it is life changing, it is life lesson learning and it is bonding for us as a family. It will forever change my son and the lives of his 4 brothers. But it is not the end. We will manage in this life and hand over to God what we cannot take upon our shoulders. Thank you for being real and sharing.
    Stacey Morgan

  18. Thank you for allowing others to share in this walk. So many of us can relate in our own ways. I have to remind myself all the time that mortality is a time of testing for all of us. Therefore, I must expect these experiences that will try me to my very core... and the challenge is to continue to hold onto our Father in Heaven and Savior and trust in them. They see the big picture. We do not. I do know this, as you do as well, that we are never left alone in these heart wrenching trials. Hang on tightly to this no matter what and to the love of family and friends and whatever comes God will help us all handle things with grace and faith.


Related Posts with Thumbnails