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,
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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.”
Why did my search slow? Doctor after doctor, specialist after specialist, have all told us, “I don’t know” 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 or coming up with a diagnosis won’t change the treatment. But I refuse to believe that is true anymore! As medicine advances, Layla has been left behind. With no diagnosis or even clue, nothing can be tried.
Layla is now 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? Fear of the worst, follows us, year after year. The first year of her life 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?
The truth is, no one can tell us what her long-term prognosis is. All they can say is that it largely depends on severity of systemic involvement throughout her life. At one point the Doctor told me that if she lives to be 10 years old, maybe medicine will have something to help her…that’s 5 years away.
This is our story of what it is like to live with an un-diagnosed disorder. We hope to possibly find support and support others going through a similar story.
We are on a mission to find a diagnosis and maybe…just maybe…one day…a cure.
Who is Layla?
Layla is our second child and her idea of 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 is Presley?
Presley is 7 years old. She is a sibling to a little sister who has special needs. Presley is kind, smart, fun, happy, thoughtful, hilarious and fearless! She brings the laughter, the joy, the happiness to our lives everyday. She is my pride and joy. She has a higher level of maturity than most; shows patience and empathy towards all. She takes so much pride in the milestones Layla accomplishes. You can always count on Presley to yell from another room “MOM Layla just said yellow perfectly!” I can go on and on about my daughter Presley. She really isn’t a “typical” 1st grader. But, even though she has all these amazing qualities that I am so proud of, I also recognize she hurts. She hurts from her protectiveness of Layla, she hurts from being overlooked at times, she hurts from the frustration that Layla may not be able to relate or play at the same level as other kids, she hurts from being separated from her sister whenever she is sick. Through it all she continues to gain strength and have a beautiful outlook on life.
Who am I?
I am Lynette, I’m married to an incredible man, Rob. He is my greatest life decision. He makes me a better person everyday. We have had our struggles but what we have gone through together has made our marriage as thick as thieves. Together, we are raising two incredible girls. I absolutely love being a wife and a mom. I work full time to help provide a wonderful home life for my girls. I was always ready to be a mom but 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, inspiring, and extraordinary! I will never give up on protecting my family, I promise to give them the world!