We survived another very full month of doctor's appointments. We had 8 total doctor appointments, as well as 3 different therapy sessions. I am happy the month is over, happy with some of the appointments as well. I know it has only been about 10 months since we started this journey, but at times it feels like it has flown by. At the same time it has been so long, so emotional, and full of so many doctors.
This month we met with the geneticist. I was anxious to go again since we haven't seen him since April. However I was also not expecting much, I have changed my outlook on most of our appointments. We went in to the appointment and it was our geneticist, a geneticist research assistant, a geneticist from Italy, and he brought in one of his colleague genetics. I sat there while they looked him completely over, and asked what had happened in the past few months. They noticed every little thing that was "odd" about my perfect baby, and kept naming different syndromes. After they were done, it became quiet and I looked up to see all 4 of them literally shaking their heads. No answers..... They all looked just as confused as ever. Our doctor said he is still looking into the original syndrome that we were looking at, and that the geneticist who had been studying the syndrome wanted to see all of McKay's records. But he said McKay just might be one in a million.
I think I have finally accepted that I don't think we will ever have an answer for the reason why McKay is the way he is. I don't think there is any other baby out there like him. I feel at peace with this realization though. As challenging as it is to have NO idea what the future holds for us, I want to stop the worrying and just focus on enjoying McKay. We still will have to see numerous doctors and specialists. But we are just going to take things as they come. There is no sense in worrying about what is ahead of us, because we have no idea.
I was reading the Ensign the other morning when I was eating my breakfast to try and grab a quick minute of inspiration. I opened up the ensign and new exactly what article I wanted to read. You can find it here (warning, you might need some tissues while you read). As I sat there reading the article with tears streaming down my face I felt like I was reading my own thoughts. This story was incredibly similar to our own NICU story. It brought me a moment of peace in our crazy lives.
Thank you to all of you who ask how McKay is doing. All of you that tell me when your kids are sick or you have the sniffles. Thank you to all of you who ask how Kyle and I are doing. Thank you to all of you who have us in your thoughts and prayers. Thank you for your love!
4 comments:
Everyone always talks about closure and answers as if they are the goal - as if they are they are the only thing that will make a situation worth enduring. Uncertainty is so difficult; closure and answers would be so welcome. But, answers can be so elusive, and I'm convinced they don't always bring the closure we think they should.
I know that is a lot of psychobabble, but it is something I've had to think about a lot in my own life. I think in some situations, we will receive answers only when we are done in this life. It's such a test of our patience and faith. It can be so darn hard! You are doing such a great job of handling all of this!
You have such a great attitude - just enjoy McKay. He is such a cute, sweet little guy. I know he has brought indescribable joy into your life.
We will continue to remember McKay and your family in our prayers.
You were right, I did need tissues. But my tears were tears of joy because I am the mother of a daughter who is learning lessons, that no matter how hard I tried I would never be able to provide them for her. Only a wise Heavenly Father could do that. I see progress in McKay, but I see so much growth in you and Kyle that I cannot help but rejoice at who you are becoming. When all is said and done, this challenge will be worth it because of who you and Kyle have become--better, wiser, stronger, more spiritual children of God. That is our ultimate goal--our thanks and love go to our precious angel grandchild, McKay, for his willingness to be the instrument of God to help you develop Christlike attributes. There will be special blessings for him someday because of his willingness to take on the role of teacher to all of us. How loved by our Heavenly Father we all are!
I agree with Tresa's psychobabble :) I have so many questions that are unanswered and I won't know why until the life after. Patience is my life long lesson.
I Read the same article this wk and thought of you. You seriously are so strong and have such a great outlook on all of this.
We need to get together soon!
Post a Comment