Shawni Eyre Pothier and her mother Linda Eyre have co-authored a new book titled A Mother's Book of Secrets; they have also recently launched the I Love Lucy Project to help raise funds for research to help fight blindness since her youngest daughter has been diagnosed with a syndrome that causes blindness.
On this blog we talk about parenting children with special needs. We share our stories, our pain, our triumphs, and we offer support up to each other. But for a moment I'd like to talk about one of my typical kids, Brant.
16 years before Parker was born, I was blessed with my oldest son, Brant. Brant came with a personality that could try even the soul of the most saint like mother.
Unfortunately I am not a saint like mother, so you can imagine how Brant (who I love with all my heart) and I hit heads over the years.
I happened on one of Linda Eyre's books where she shared the wisdom gleaned from her own trenches in motherhood.
I can honestly say that one of the reasons our family didn't ultimately vote Brant off the island came in no small part because of the experiences Linda wrote about.
When I saw Shawni and Lucy's story, I knew that I had stumbled across a way to pay it forward for the help Linda gave me. I would share The I Love Lucy Project in any way I could.
In case you are wondering, Brant is now a 6'3" 21 year old. He recently returned home from a 2 year LDS mission, most of it spent being shot at, spit on, and chased as he tried to bring the gospel of Jesus Christ to those who had (literally) prayed him there. That strong spirit of his? Actually a much needed attribute in order to accomplish what he had been called to do.
After you read Shawni's story, you'll be able to enter to win a copy of A Mother's Book of Secrets.
In Shawni's own words:
At the birth of each of my five babies I was completely euphoric. I sat in my hospital bed with each of them and gazed deeply into their windows-to-heaven-eyes as my heart swelled up to the size of a watermelon with pure love. Those babies were my dream come true… the dream I'd been dreaming since before I could talk…the dream to be a Mother.
As I sat there soaking them in and thanking God for these perfect gifts, I dreamed of a life for each of them as full and rewarding as could be. Of course as mothers it's never part of our dream for our children to have to deal with health issues or trials, for something to go wrong. I dream of only the good stuff, confidence, friends, marriage and family.
But my big dreams shifted dramatically with the birth of my fifth baby, Lucy.
She politely introduced me to real life.
Not only was she born with an extra toe and a couple of birth marks, she was delayed.
Even at three months old she hadn't smiled, despite my most impressive attempts to strain my own smile muscles at her. She couldn't roll over forever. She couldn't sit up for much longer than I was comfortable with, and at almost two years-old, she still wasn't walking.
My husband and I worried our hearts out. What was wrong? As we struggled through doctor after doctor trying to figure it out, I realized I had been living in a dream world with my first four kids. Every one of them was right on developmentally. One week they learned to play peek-a-boo. The next they learned to give kisses. Then they started saying words, which were added to one by one, then ten by ten.
This was normal.
This was life.
Lucy qualified for speech therapy, then physical therapy. She had MRIs and hearing tests that required sedation since she was so darn feisty. I became best friends with the nurses at the blood lab who helped me hold poor Lucy down endless times to draw blood for various tests ordered by the geneticist.
One winter day last year, we got a call we knew was coming. Lucy was diagnosed with Bardet-Biedl, a rare syndrome that causes heart and kidney issues, obesity, and most heart-wrenching to us: blindness.
Everything was claustrophobic; my thoughts swirled. I worried about my husband who wants to always 'fix' things that go wrong, and here was something he couldn't 'fix'. I worried about our other kids getting the attention they needed given Lucy's needs. I worried about all her health issues, the myriad things that could go wrong.
My heart sunk when people started talking to us 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 and kidney transplants.
This syndrome was not part of the 'dream' I envisioned for my daughter as I daydreamed in my hospital bed when she was born. What about all the things I dreamed she'd do? I went from dreaming big to letting fear seep in. Would Lucy be able to function in life? Would she have friends? Would she depend on us forever? And what about my dream that she'd someday be a wife and mother? Even if she did, how could she bear not seeing her husband, seeing her babies?
As I reflect on this past year since Lucy's diagnosis, I have been smacked in the face with the realization that it is through our struggles we grow the most. And that we all have struggles. We all have dreams that haven't become a reality
Some struggles are small. We get a bad haircut, or can't make a decision about which school will be best for our children. Others struggles loom large, horrible ordeals we can scarcely imagine. We are chemically depressed, loved ones have been abused or deal with chemical dependence, some husbands are unfaithful. But ever so gradually our challenges shape us, dreams we hadn't anticipated emerge.
Lucy is a sweet, strong-willed, chubby three year-old who captures the hearts of all who meet her. Her life is not going in the direction I had hoped for when I cradled her as a newborn, but she is influencing many, giving hope along the way.
We begin with dreams. Nearly always there are twists and turns. I'm learning to be flexible, to recognize that when a dream reaches a dead-end, an alternate dream can and will emerge.
As my dream for Lucy shifts, my dream as a Mother has shifted as well. All the wonderful things I hoped for are still there, but fighting for Lucy and against blindness, especially Lucy's type of blindness which there may be a cure for (provided there is funding), has lit a fire within me.
It is a joy to have something bigger than myself and my family to fight for.
How can you win a copy of A Mother's Book of Secrets:
Share the I Love Lucy Project anyway you can. Tweet it. Facebook it. Put Lucy's button on your blog. Tell your neighbors and friends in whatever way you can.
Then come back and tell me about it in the comments.
If you share using more than one medium, leave me a comment for each time you shared.
You can also find Tammy and Parker hanging out at their other blog, Praying For Parker and Twitter where they are known as ParkerMama.
Want to connect with other special needs families? Come join the conversation at 
