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! So another month has gone by in the blink of an eye. I'm kind of glad to be inching closer to spring but also amazed at how quickly time can fly by. Yet, some days feel so long! I guess that's where the saying "the longest shortest time" comes from. (It's also the name of a parenting podcast.) As I reflect on that idea, like most parents, I'm hit with the reality that our children are growing up so quickly. Just yesterday in fact, Facebook reminded me of this memory and photo from 5 years ago . This was taken when A was just 9 months old, E was 3 years old, and I was about 3 months away from giving birth to our third daughter. I love looking back at these photos and seeing their precious little faces. Most other parents, that have children older than ours, will often tell me, "Cherish these moments!" "They grow up so quickly!" "I wish mine were young again!" That seems like such great, valid advice. Yet, a lot of the time, I am looking toward the future. I want to leave these hard days behind. I pray that our daughters' health struggles will improve and the quality of our lives will improve. I look forward to cherishing moments together in the future when they are a bit older and hopefully life is more manageable. I dream and pray for a day where food allergies, feeding tubes, incontinence, GI struggles, chronic pain, Ehlers-Danlos Syndrome, autonomic dysfunction, mast cell activation syndrome, anxiety, autism spectrum disorder and sensory processing disorders no longer prevent us from living the life we dreamed of with our daughters. In the meantime, I will keep fighting everyday to make that dream come true because our daughters deserve those memorable moments. I also vow to take each day as a gift and a blessing, to make the little moments count, and to celebrate the small victories. So on that note, we do have a few small victories to share! Our daughter, A, had a food allergy test and oral challenge at the hospital a few weeks ago. She passed it with flying colors and has officially grown out of all her food allergies! She is cleared to drink milk and eat dairy products! She couldn't be more thrilled to be eating pizza with cheese on it! This week is also Feeding Tube Awareness week, and the perfect time to celebrate the fact that our oldest daughter, E, has had her G-tube for about 16 months now and it has done amazing things for her! She has been growing and gaining weight like never before! At her recent appointment with the endocrinologist, we were told that E was doing amazing and that we don't have to come back until she hits puberty! Yay! One less specialist to follow-up with is great news!
There have been other appointments and updates to share, but for now, I'd like to end on a positive note and stay in this happy place for a moment. As always, thanks for reading and for all your support! |
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
Categories |