For awhile now, I have quietly prayed about whether or not I might share our story with others than just those closest to us. I am very much a private person, so I have struggled with what/how much information I wanted to be known. It’s scary to put my thoughts into words even for me sometimes, so it’s even scarier to share that with others. However, I wanted a place that I could chronicle events about Lindsay’s life that I will have forever. I look forward to being able to access this journal years from now to see just how far God has brought her. I am honored to have you join us as we navigate this journey with our precious girl one day at a time!
October 2nd of this year is a day I will never forget. We had the appointment to see a geneticist at Vanderbilt scheduled for months. All I knew was that she would shed a little light on what we had learned at the beginning of the summer; Lindsay has a partial deletion of chromosome 18. I honestly thought we would hear to keep doing what we had been doing, and Lindsay would continue to progress at a much slower rate than is “typical.” What I had not prepared to hear was that, “Most people with her condition will never walk, talk, or be able to live independently.”
While we had been trying to determine the cause of Lindsay’s global motor and cognitive delays since around 9 months old, I never expected such a drastic prognosis. It seemed as though every procedure she had endured up until this point had turned out in her favor. After testing for Cystic Fibrosis, swallow studies, a brain MRI, head CT, bronchial scope for breathing issues, and a multitude of blood work over much of her first year, it was ultimately the comprehensive blood testing done around April/May that highlighted this deletion in part of her chromosome.
So while we knew the deletion was certainly the cause for a lot of her issues, we did not know specifics of what that may mean for her future.
My mom accompanied Lindsay and me to the Dr. this day, as the nature of Chip’s job is such that he could not. We learned that Lindsay’s portion of chromosome that is missing is 18(q). Individuals that have this particular piece of chromosome missing are also considered to have Pitt-Hopkins Syndrome. At this point, I have not done any additional research on the syndrome, because I honestly can only “handle” so much at one time.
I don’t know who cried more in that exam room-my mom or me. I remember getting Lindsay to the van in the garage at Vandy without really being able to speak. Before I put her in her seat, I just held her and sobbed, “What on earth did she do to deserve this?”
Over the course of the next week, which was the boys’ Fall Break from school, I just grieved and “went through the motions.” I wish I could say that I never questioned God…”Why me? Why us? Why her?” I can’t. I knew in my heart that God wasn’t punishing us, or her. But, in order to be completely transparent, I have to tell exactly how I was feeling at the time.
While I’ll never understand why sometimes children have such overwhelming difficulties this side of heaven, I have learned God uses so many people to stand with us in this earthly walk. Four ladies whom I would have probably never otherwise met, have become so very dear to me and to her. While their occupations are to help Lindsay each week with Occupational therapy, speech/feeding therapy, and physical therapy, they are so much more than that. They have let me wrestle with trying to understand, cope, and some days-just let me cry. They never let this ‘diagnosis’ determine her capabilities going forward. They see it “all,” and they witness firsthand the miracles that God allows to happen every day.
We are currently in the place where we are set to do whatever it takes to help her fulfill her greatest potential. We know God has mighty plans for her, and we are grateful for the blessing she is to everyone who knows her.
For now, I’ll close by saying I am honored that HE has chosen me-chosen us– to be Lindsay’s earthly parents. He must love us so! Out of anyone in this world HE could have chosen, we have that privilege! He placed her in a family with two brothers that adore her. They are so precious with her, and get so excited with every single tiny accomplishment of hers. Because of Lindsay, I know they will develop such tender qualities as they grow. To know Lindsay is to love her…just ask her proud grandparents, aunts/uncles, and cousins!
Thank you for joining us on this journey as we watch and wait for Lindsay to become all that God has created her to be.