I thought about this right at the turn of the new year; the fact that a year has passed since Tyley Sue was diagnosed with the 11p14.1 deletion. This morning I drove to work, like I do every day, and I passed by the service road that I turned off on about a year ago when Dr. Han called me. Dr. Han is the doctor from NIH that was able to really answer our questions, she's the one working on a cure, and she's the one with the brains of the operation for us! She called me about a year ago right after I left work. When I got the call I was just about to hit the interstate, and instead, I turned off on a service road and parked in a hotel parking lot. I thought it would be a quick talk, but I sat there for over an hour while she poured knowledge into me and allowed me to ask all the questions I wanted. She was extremely patient and kind as she broke some of the most heart breaking news to me. At the end of our conversation, she invited us to come to the NIH for testing so she could further confirm some things for us.
Once we ended our conversation, I continued to sit in that hotel parking lot and I cried. I was so scared and there was so much unknown ahead, but at the same time, I knew enough to completely wreck my world. So, today, as I passed that service road, a little deja vu hit me. I felt a tinge of sadness as tears welled up in my eyes.
A year has passed, and not much has changed in regards to Tyley Sue's progression. Now, please don't think I take for granted the small advances she has made, because I most certainly do not. Looking back over the past year here are some of the things that she's gained. She is using her PECS book to communicate some. It's very helpful and I think gives her a great sense of accomplishment when she's able to effectively communicate her needs to us. She is now sleeping wonderfully thanks to a weighted blanket and some essential oils. She loves going to school and I think her attention span has improved as a result of it. She does seem to follow some of our instructions better.
As I listed those things that she's doing well at, I also can't help but think of the things she lost and never regained. Those are the things that bother me the most. She used to count to 10, alternating every other number with us, she used to say several different words like "sassy", "what a daddy", "apple", "hey girl" and "happy". There were some others that I know I've forgotten too. I just thought she was being stubborn in the beginning and that she would say them when she wanted to, but that never happened. A year later and she still hasn't gained those words back that she used to say.
Over the past year I've watched Elijah surpass her in many ways. He feeds himself with a spoon and fork. He says "mama" "dada" "bottle" "snack" "nose" "'Lijah" "cheese" "shoes" "go" "bye bye" and "hey". He plays appropriately with his toys. There are moments where I see him easily master a task that I've pushed her on for a long time and she still can't even attempt to do it on her own.
People say you can't compare one kid to another, but it's impossible not to. It doesn't mean I love her any less or think differently of her because she can't do the things Elijah does, but it's just human nature to see the two and compare. Tyley Sue is unique and Elijah is unique, each in their own ways.
I've tried to think of how things have changed for Tyler and I over the past year. I think we've both come to terms more with how our life is different from our friends and families lives. We know there are limits to what we can and can't do with Tyley Sue. We've learned how to really enjoy the small advances and how to enjoy Elijah's growth without feeling sad for Tyley Sue or ourselves. I love seeing Elijah progress and learn. It's a whole new experience for me. We've also learned that some people can say some really hurtful things, but the people that love and care and encourage far outweigh the few negative comments over this past year. We have moments where we still question the future and wonder what it holds for Tyley Sue and us all. I still have moments of paralyzing fear over the "what ifs" of her diagnosis since we don't know anyone else with this. But, I have many more moments of peace and acceptance while I try to just worry with today and not the tomorrows.
Life sure has changed from January 2014 to January 2015. We are starting this year off with an appointment this Friday to see Dr. Han again. She's moved from the NIH in Maryland to LeBonheur in Memphis, TN which is a huge blessing for us! So, we will head to Memphis 6 am this Friday to
meet with Dr. Han and discuss Tyley Sue's current status and see if there are any suggestions for us. I'm also curious to know how the research is going on her end and with the team at the NIH. I would ask that you all continue to lift our family up in prayer. We will also be going back to the cardiologist in a couple of months to check back on that abnormality with her heart and see if anything has changed there.
I've said it before and I will say it again; I will be forever thankful that God saw fit for me to be the mother to Tyley Sue. Knowing he orchestrated her birth with another woman and lined things up just right so Tyler and I would become her parents still amazes me. Tyley Sue is literally one in a million and we have been allowed to be a part of this story. He's used us to minister to others and I'm still able to share our story with new people. I pray that He will continue to use us to reach out to others and allow us opportunities to share what He's done and what He's doing in our lives!
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