This date, October 28, holds very special meaning to me as this date last year was Lily's due date. Without realizing the meaning of this date, I found myself thinking a lot about her this afternoon. Periodically, I'll catch myself playing the "what if" game. You know, what if she had been a full term baby?, what if she had been born alive?, what if we could have held her for even a few moments while she was still alive?, what if she had lived hours or even days?, what if she could have survived long enough to leave the hospital to experiene some of her life at home?....Then, I'll stop those thoughts by reminding myself of the very harsh statistics about Trisomy 18 and alobar holoprosencephaly.
We know that 50% of Trisomy 18 babies who make it full term are still born. Of these 50%, just over 90%die during their first year of life. If only this was Lily's only hurdle. We also know that most babies diagnosed with alobar holoprosencephaly are still born. It is this diagnosis that would have limited her significantly. With such a severe brain defect, she would not have had the ability to walk or talk. She may not have been able to eat, and could have easily required a feeding tube. While this should put an abrupt halt to my what if thinking, I still find myself wondering.
You may remember that Lily has a cousin, Quinn, who shared her exact same due date. He was born just a few days late, and is now approaching his first birthday. I think my family was concerned about how I would handle Quinn's birth after having to say goodbye to Lily. Admittedly, I was concerned about how I would handle his arrival too and truthfully, I wondered how difficult it would be to see him through his infancy. I worried that seeing him grow, develop, and learn new things would remind me of all of the experiences that our Lily would never have. However, I have noticed the exact opposite. He may never know how much I enjoy seeing him and watching him grow and change, and while that is mostly due to his uniqueness, I admit that it is also because he is a reminder to me of my baby girl. It is because he is going through the ages and stages exactly as she would have during the same months and seasons. I realize that it may not be fair for me to compare Quinn to Lily as he is obviously special on his own. It's just that if he wasn't here, Lily may be easier for others to forget about since she is no longer with us. Quinn is now learning to walk. He is getting to the point where I can't really compare my what ifs to him anymore because I know for sure that Lily would have never been able to walk. I'm not even sure if she would have been able to sit up.
While I succeeded in making it through the first year after Lily's death, I was also anticipating emotionally getting through Quinn's first birthday. As I was shopping for his birthday gift and looking at the toys that were the most age appropriate for him, I considered that if all of my what ifs came true, Lily probably still would not have been able to play with any of these toys as she would not have had the physical or cognitive ability.
I try to make an effort to change any negative thoughts into more positive ones, so instead of rambling on about all of the scenarios that are just not applicable or realistic, I'll end this post by wondering what if Lily knew how much I think about her and miss her. Now I think that is a what if that I can be positive about!
