Just the other day, I sat in a coffee shop while my 5-year-old daughter was across the street in another building and was participating in an intensive neuropsychological evaluation that lasted 2 days. I tried to write a post but had a hard time focusing. My mind was on my daughter. Yet, in between thoughts of her, I was asking myself what is my goal in writing this blog. I've thought a lot about this and this is what I've come up with so far. While it started out as a way to update our family and close friends on the several doctor appointments, tests, and updates that our daughters have each month, my desire for this blog has evolved into something more. I'd like to continue with the updates, but also want to shed a little light on what daily life is like in a family with chronic illnesses and special needs. I want to educate and bring awareness to what it is like to be on this journey. I want to explain what daily life entails, so that people closest to us understand why we do what we do (or don't do). I want to help those who may be on a similar path and provide a little hope when we achieve small victories. I want to be a place of comfort to others that share in some of these same struggles. And... I want to write to bring a voice to individuals with invisible illnesses, especially to those children who don't have their own voice yet like my three precious girls. Moving forward, I will write with reasons in mind. I hope that these posts achieve these goals and reach people in a different, but deeper way. I pledge to be an open book in the hopes that my vulnerability and honestly will bring awareness and understanding to families like ours. So with this in mind, I want to go back to the day last week where I was sitting in the coffee shop across the street from my daughter's doctor office and share a little about what was going through my mind as I sat there with a blank computer screen before me. Do you know what I was thinking? I was hoping and praying that the testing was going well, but not too well. Why? Because if it goes too well, and she doesn't present with the challenges we see daily, then this will all be for nothing. Another dead end. Yet, she's had so many challenging days lately, it would break my heart to know she is having another. So I also hoped that things were going smoothly for her sake. If that seems like an paradox, you are right! I want so badly to support her and help her thrive, but I can't do that until we first have a better understanding of these challenges. For that to happen, we need her doctors to see all the sides of her, from her areas of struggle to her strengths. So in four weeks, when we meet with her doctor to review the results of the evaluation, I pray that it will be the aha moment we've been waiting for and that her doctor was able to gather a true picture of our daughter. I also pray the doctors and therapists will be able to guide us on a path to better support my little girl. Until then, thanks for reading, for your support, and for following us on this journey!
Caitlin
2/26/2018 08:16:05 pm
I’m so happy you are using your voice!! Say what you need to say and those that need to hear it will! Love you, Adam, and those beautiful Zebras!
Deb Barrales
2/26/2018 08:38:51 pm
Sharing your knowledge and emotion during your journey can only help those going through the same or similar circumstances. How do we help you get the word out to those who need it most? Comments are closed.
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AuthorHi, I'm Rebekah! I'm a wife, architect, teacher and mother to 3 amazing daughters! Thanks for stopping by my blog, RAISING ZEBRAS! Archives
February 2018
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