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!
However, today in this rare moment of quiet, I am able to think about all the things I am thankful for, and I think I need to do this more often. I want to consciously remind myself of all the ways we are blessed as a family, and I want to do this every month, not just in November. So here goes...
1. I am thankful for my husband, who stands by me and our daughters through all the ups and downs. I know he loves us all, and I am so, so grateful for him every day! 2. I am thankful for my three amazing daughters. They have taught me so much about love, patience, determination, and courage. Words will never express how much they mean to me! 3. I am thankful for my sisters, parents, aunts, uncles, cousins, and grandparents. They have all taught me so much during my life and many have been my rock and support system through all our challenges, tests, procedures and surgeries. I couldn't do it without them and love them so much. 4. I am thankful for the friends, that are like family, and have also been a tremendous support to me and my family. Ladies, I love you too! 5. I am thankful for the friends that I've met in online support groups. While some people don't see the value of Facebook, I do. It allows families, who have similar medical struggles and diagnoses, from all over the world to communicate and support each other. There is one special friend who has three children are similar to mine that I am very thankful for. I would be lost without her support! 6. I am thankful for each new day, that I have learned to keep advocating for my girls and never give up, for the medical team that we currently have that is fighting for my girls as hard as I am, and for all the progress we have made so far. 7. On that note, I am also thankful for the nurse practitioner who nominated our girls for Make A Wish Foundation. I received a voicemail message from Make A Wish Foundation yesterday. Fingers crossed that it's good news! I could go on and on, and I will. I plan to jot down reasons to be thankful each month. Despite the challenges, I know we have many blessings! Hopefully this Thanksgiving you are reminded of all the reasons you are thankful. Wishing you all a happy and blessed Thanksgiving! Thanks for reading! |
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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