This is the story of our beautiful little girl. Her name is Emma! Lately a lot of people have been asking me about Emma. "Is she better?" or "what's actually wrong with her?" These are hard questions for me to answer. Usually I just smile and say "she's had a rough start, but is coming around nicely," or "she has a lot of health issues, but we're doing just fine". If I'm lucky Emma will give them one of her huge smiles and they leave feeling reassured and comfortable with my lack of detail. Then I quickly turn away before they see the tears welling up in my eyes.
So, I decided to start a blog for friends and family who are curious or concerned. Hopefully this will help to clear some things up as well as keeping you all updated on little Emma's situation and progress.
Let me just start by saying that Emma does not have any one specific diagnose or known reason for all of her struggles and it's not for a lack of trying that we haven't found anything. We have spent much of the last year in and out of hospitals. She has a big team of amazing doctors, specialists, and therapists that follow her. Emma has severe delays in her development. She is currently in therapy 3 times a week. She is primarily fed through a tube and is very tiny for her age. She has been under general anesthesia 7 times in her short 14 months of life. She also has hip dysplasia and an alternating muscle tone. Emma has been tested for every genetic and metabolic disorder you can think of. She has had M.R.I's of her brain, E.E.G's, E.K.G's, E.R.G's, you name it. Any major test or scan she's had it and all of them have come back "normal". The doctors have prepared us that we may never know what's "wrong" with Emma. This is very frustrating and for a long time I found it unacceptable. I would think to myself, what if Emma is that kid that goes undiagnosed and then it ends up being too late to treat her. I wanted a reason for all of this and I still do, but now a days I'm dealing with it a little differently. Although I will continue to advocate for her, I have started to accept the fact that it just is what it is. Emma is who she is and I'm okay with that now. She is BEAUTIFUL, she is DETERMINED, she is STRONG, she is SPUNKY, she is SMART, she is a FASCINATING blend of BRILLIANCE with HANDICAPS................ she is truly a WONDER!
2 comments:
She is also LUCKY. So lucky to have such incredible parents that have given their all and then some to make every minute of her life as comfortable as possible. And she is LOVED. You can't look at her without being overwhelmed with love for our sweet Emma.
We are so glad that you are taking the time to share your lives with us.
We love you all!
Jesse & Cami
She is AMAZING! Like her parents, mostly her mom. And you are so strong yourself Becky for going through this all and still having the strength to keep up with it all! I wish I could meet this little girl, one of these days...
Thanks for letting us all know whats going on when we cant be there.<3 Love you.
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