Wow. Today, December 28, 2013, Sophie turns 20. Was it really 20 years ago that I held this mystery child in my arms for the very first time? What a celebration for our hearts as friends and family eagerly awaited this child along with us. We had already struggled through many miscarriages, hopes dashed, and the bittersweet longing while friends celebrated their bundles of joy. The child I spent weeks on my couch because you wanted to come earlier. The day was spent in anticipation of your arrival, your amazing doctor waiting for the word, hospital ready and waiting since you were already trouble from those waiting weeks before. And the fuss to have you then arrive on this day, the same day as your Grandpa Bob. You just made it, minutes before midnight. Bringing with you surprises that let us know you would be a unique child from the get-go.
Confusion ruled the night and next day, as we struggled to find we had entered the world of special needs and the beginning of our journey. Huge decisions to make, transferring to a big city hospital that we knew nothing about. Not knowing that it would be our home away from home for 20 days, and then our world for many years to come.
Continued confusion and worry as we tried to find answers to things that had no answers, at least in the beginning. Using all of our problem solving skills and learning to be partners in healthcare, trying different methods, different medications, different teaching methods, different everything because you were so unique. Being stronger than we ever thought possible, experts in research, finding ways to make your life easier if not joyous. Being taught lessons we didn’t even know existed, and finding low points that hit us harder than expected. Learning what little there was to learn about rare disorders and fragile health and what the term “medically fragile” meant. All new vocabulary to assimilate into our lives.
Ah and the gifts you have brought us! REALLY appreciating life. Laughter really can be the best medicine. Finding there really are angels on earth that come in the form of strangers who become life-long friends who love this child as much as we do.
The pain of losing some people due to the uncomfortable life we lead, circumstances that lead others away after their time helping this unique child, and then others coming closer to stand with us and for us when times got rough. Tools learned to help you physically, medically, emotionally, and to communicate. Using my management skills on a whole different level. Those years of pain for a kid that doesn’t feel pain, to come out the other side with a 20 year old who is happier and healthier than I ever thought possible. And the gratitude for those angels who helped us find solutions to problems we thought we’d never solve. And gratitude for the internet which brought us closer to solutions and more importantly find others who walk this rare walk with us. To find comfort there.We are celebrating tonight when the night arrives by taking a walk through nature and seeing beautiful lights shining. A perfect analogy of our 20 years: when we saw darkness, we followed the light, found friendship and love, solutions to guide us in this journey. Happy Birthday, Sophie. You are truly blessed. As are we.
If you liked this post, please explore the other posts and tabs to discover more about Sophie, our family, and the things that have made her life easier, more joyous.