Della's genetic tests are in and they show everything to be just as they should be. She doesn't have Fragile-X Syndrome or any other genetic disorder. That was the last of the tests that we had to run and so it brings an end to our saga...for now. No one can explain her abnormal blood test results that we first got at the beginning of July. She has blown away all of the Dr.'s predictions and expectations. I know that it has been due to the faith, prayers, and grace of God that she has been able to make the progress that she has. I am very thankful for the great blessings we have received.
The next day...I wrote the above paragraph last night and it took me a very long time to write. Of course I am happy and grateful that Della is seemingly healed, as any mother would be. However it is bittersweet. I have met many mothers, just like me, who have children that will never be "normal" or "OK." Their children won't learn to walk, or talk, or even live past 5 years old. Back in February I met mothers in the PICU who wouldn't even be able to take their children home and could only watch as their babies slipped away. I have to ask myself, why me? Did I have more faith than other parents? No. Did my daughter have better care than the other children? No. Did I simply want it more than the other mothers? No. I guess that is just the way it is. I feel like an ingrate for even thinking these things. Only the Lord knows why, and I am just trying to accept that. I guess the human mind looks for meaning and reasoning in things that we won't understand until the next life. I can't help but think of one mother that I met during this ordeal. My first encounter with her occurred while sitting in the CHOC Outpatient Lab. We were both waiting to have our daughters' blood drawn. I watched her try and keep her three and a half year old son quiet and entertained. Anyone with a child this age can appreciate the difficulty of this task. After waiting over an hour, he was having no more of her shushing. I, thankfully, was able to drop my son off at his great-grandparent's house and didn't have to worry about keeping him occupied. I began to talk with her and she told me that her daughter had an auto-immune disorder. She was a single mother who worked full time as a nurse in Hemet. Every month she drives almost 3 hours (in traffic) with both of her children to meet with her daughter's team of specialists and to have her blood drawn. Everything on this woman's face spelled exhaustion. She asked about Della and I told her that she had some delays and we were just getting started in the long arduous task of finding a diagnosis. This woman told me to never take what the Dr.'s and specialists predicted as "the gospel truth." She was told her daughter would never be able to move. At 14 months her daughter began "commando crawling." She told me to never settle on treatment for my daughter, that I should fight for the best. My baby had no voice of her own, and that I was her only advocate. Her words left a very lasting impression on me and I thought about her often. One month later we walked into the Metabolic Center and there she was. I was able to speak to her briefly and thank her for her wise words that could only come from someone who has walked the path that we were just beginning. She said "Always fight for your daughter and take one day at a time." I felt the passion behind her words that can only come from the fierce love that a mother has for her child. Now that we are at the end of this (current) journey, I think about this mother. Her daughter doesn't have the same chances that my daughter has. My daughter's prognosis is much better than her daughter's. I am overjoyed at the fact that we have seemingly been given a second chance, but what about all of the other mothers and their children. I know that the Lord has all of His children in mind and that we all have a purpose here. I believe that He healed by daughter. I also believe that He allows other things to happen to us for our benefit and growth. In short, I am thankful for the miracle that we have been blessed with. Am I glad that it happened? No. Do I appreciate the growth and humility it has allowed me to experience? Yes.