Layla is my vibrant 5 year old , and I am her Mama, Lynette! I am not a fancy writer, so this blog is the raw, honest truth of our Life with Layla. I am starting this blog to document and share Layla’s story. I always wanted to get her story out (and I feel a ton of Mom guilt that I didn’t do this sooner), but I just wasn’t ready to re-live the unbelievable devastation we have been through.
I was recently talking with a close friend, Charlie and he was sharing incredible stories and advancements that the medical world is finding. I came to the realization, that I stopped searching the way I searched when Layla was a baby. But the truth is, nothing has changed for her in 5 years. We are no closer to figuring out what “she has”. So, why did my search slow? Doctor after Doctor, Specialist after specialist, have all told us, they don’t now and all we can do is “treat the symptoms”. It became discouraging and difficult to keep running into dead ends. And they told me, even finding what is happening wont change the treatment. But that isn’t true anymore! As medicine advances, Layla has been left behind. With no diagnosis or even clue, nothing can be tried.
Layla is 5 years old and we don’t know what her future looks like. This is the hardest part of an un-diagnosed “diagnosis”. What will happen next and fear of the worst follows us year after year. The first year she overcame a life-threatening infection, the second year of her life she overcame multiple strokes, she is 5 and we keep thinking is it over? Is the worst over? This is our story of; what it is like to live with an un-diagnosed disorder, bring awareness kids with disabilities, possibly find support and support others going through a similar story.
We are on a mission to find a diagnosis and maybe one day…a cure.
Who is Layla?
Layla is our second child and her idea the best day, is dancing in front of a room full of people! Her outlook on life is contagious. She wakes up happy and ready to learn everyday. She pushes herself to the limit physically and mentally. She is brave, kind, forgiving and the strongest kid I have ever known. At the age of 1 she went through a horrific experience that led to her “diagnosis” of a “rare” un-diagnosed immune/autoimmune deficiency. Her big sister, Presley is her Hero. She changes people, after they meet her. We love her too pieces and it is impossible to imagine our lives without her.
Who am I?
I am Lynette, I’m married to Rob. And together we are raising two incredible girls. I absolutely love being a mom. I was so ready to be a mom. My oldest daughter Presley is 7 years old and is a great big sister to Layla. After nailing this mom thing, I thought for sure I was ready to have another baby. I am not an expert, coach, therapist or doctor, but I am a mother. M am a like others who could. The road as a special needs parent has taken me through a rollercoaster of extremes. Extreme fear, sadness, hope, stress, devastation. It is also; beautiful, rewarding,