I wrote a little bit earlier this week (this post here) about some of our feelings about being undiagnosed and the upcoming genetics appointment looming in the air, but today I’d also like to share this video from SWAN USA (Syndromes Without A Name) featuring Braxton and many other children on the journey to diagnosis in honor of Undiagnosed Children’s Day.
Today, we celebrate Braxton and all of the children around the world who are still searching for a diagnosis. Although all of our stories are different, we all share so many of the same joys and sorrows. We celebrate every bit of progress no matter how small, because to us none of it is small. We all know just how hard our child worked to accomplish things like tracking an object as it moves across a room, sitting up, rolling over, forming sounds, turning the page in a book, pulling up to stand, taking a few bites of food…everything that may seem so insignificant to the average person is cause for triumphant celebration for us. And to those of you who have joined us on this journey and celebrate all of these steps with us, we can’t tell you how much it means to us to have your love and support. We all worry about what tomorrow will bring, if our child will even see tomorrow, if taking our child on a play date will bring them life altering sickness, even if it’s not mentioned out loud, I guarantee it’s always in the back of our mind. But, as I said in my last post, you can’t focus on the bad. You must make a conscious effort to hold your head high and keep moving forward. One thing is evident to me as I read other stories of undiagnosed families..we all take it day by day and cherish today because tomorrow is not promised. As I read through blogs or follow facebook pages, there are so many smiles and there is so much love in each and every child. Despite their circumstances these children have so much to smile about and have a way of touching the lives of so many.
Today, I encourage you to keep them in your heart and celebrate their lives. Every day, they are beating the odds. Every day, they are changing the world. Every day, they keep fighting. And every day, they fill the lives of so many with so much joy and happiness. Braxton truly brings us more joy and happiness than we could ever imagine, and I’m certain the same is true for all of these children. Don’t feel sorry for any of them. Celebrate them. Pray for their continued progress and the continued strength of their family. Take time to get to know them and share their stories. Pray for the science and technology to catch up to them before it’s too late. Pray for answers. Pray for courage if answers cannot be found. Thank you all so much for joining us on this journey. It’s far from over, and your love and support help keep us going. I simply cannot thank you enough.
To our fellow families along the journey, today we celebrate with you. Happy Undiagnosed Children’s Day, keep up the great work with your child, you are truly doing an amazing job! Much love, from our family to yours! ❤
And just in case you didn’t know, our blog now officially has a page on Facebook. Come on over and ‘like’ our page to see even more on our story every day and meet some of our other precious friends on their own diagnostic journey.