Monday, February 8, 2010


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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