One of my girlfriends also had a daughter die at five months old, but she found out at one month old that she had a fatal disease. So she lived for four months knowing that her daughter was going to die before the age of two. So to me, my heart was aching for her thinking that she’s got to look at her daughter for so long knowing that she wasn’t going to have her. I got three great months with my daughter not having to worry about that. I feel like this was the way it was supposed to happen for us. It doesn’t make it any easier, but it’s just different.
There’s a part of me that, especially in the beginning, was so much more bitter than I ever thought I could be. I was really just pissed. I was mad at everyone. She died at the age of two so I never got to have conversations with her. I never got to know how her mind worked. I never knew her creativity or imagination. I didn’t have conversations with her to miss. I didn’t have her intellect to miss. I didn’t have her sense of humor to miss as one would if one’s child died later. What I did have is I held her for two years. She could never walk. She could never crawl. She had to be carried everywhere. She sat in our arms. I really miss the physicality of mothering her.
Sometimes we forget the simple gift
I think that we take for granted what makes up personality and character. We’re so consumed by the shades of gray and the nuances of people that we sometimes forget the simple gift that is ours in this very presence. Jackie was, in many respects, larger than life as a youngster. When she had her normal faculties, she had a way about her, a zest for life. We had many more years with her uncommunicative and cognitively impaired to the extent that the majority of the time she couldn’t even assess what was going on. She could receive love and somehow she could give love. I don’t know how that works exactly, but part of the gift of life is to have you appreciate the unsubtle statement of the gift of a life.
I had been trying to cram everything in
From the moment she was born, I was trying to fit a lifetime of things into her tiny little life. I once put her in the bathtub with my son who was two years old. To me I don’t think that an infant that small would be all that safe in a bathtub with a two year old. I wanted them to interact with each other as much as possible. I really didn’t realize it until she died that I had been trying to cram everything in, in a short period of time. For example, one day we went to get our pictures taken at a photo studio and my son was particularly cranky that day and Libby was cranky that day as well. My husband’s patience was maxed out because both the kids were crying. I think the photographer had gone over and above and she was ready to give up as well but I wasn’t ready to give up. I kind of just said to everybody “Can we just try one or two more pictures?” and low and behold we were able to get a couple of them. Libby was screaming in a couple of the pictures which are kind of funny now. We look at them and it’s kind of humorous. If I hadn’t insisted that day we wouldn’t have a family picture of all of us. I thought that she was too young at the time to do a family picture, as two month olds go they don’t really sit up and they don’t really do much of anything, so there’s only a couple of different poses you can do taking pictures of them. But I remember saying “I want a family picture, I want a family picture.” So I remember that throughout her whole life, me trying to do everything to fit everything in. I’m not sure why I felt that I needed to do that.
When she could speak she had plenty to say. She was a fun loving kid. She loved to tease. She loved to hug. She loved to tell stories. She loved people. Somehow that managed to translate over the years through the progression of her disease. She drew people to her even when she couldn’t speak or do anything for herself. Even at death, the nurse who was taking care of her fell in love with her. She was a gift to us and many others.
Fundraising for her disease
When Lexi was sick and she was dying she was fundraising for herself on her hospice bed at home. She made Easter baskets with her friends. They came and they put little stuffed animals and candies and little craft projects in these baskets. Lexi was so weak she could just maybe lift a few things and put them in the basket. They wrapped these baskets and sold them for $15 each for Easter. She would have us record everything they had sold. She made about $250. We sent it to Buffalo because at that time, they were the only ones that we knew about that were doing research in the country. Lexi wanted no one to suffer like she did. She felt really strongly that we find a cure. We tried to find the cure when she was alive. We researched all over. We called every doctor we could think of. We tried every treatment. We felt like we were carrying out one of her wishes to fulfill a dream of hers for other children.
The day at the pool
Every decision we made was to make Johnny as comfortable and as happy as possible. A couple of months were great because it was summer time and we had Johnny out in the pool with his two brothers. He was smiling away. Those were good times that we look back on and say to ourselves “we’re glad we made those decisions.” Those are good memories we have of Johnny sitting there with his brothers in the pool. Even though he had a large number of problems he was just one of the guys in the pool that day. It was nice.
His uncle put his song on the radio
His uncle is really involved in music and has a [recording] studio. He ended up copywriting all of Andy’s music after he passed. His uncle got [a song Andy was working on] on the radio I don’t know how. Before he passed, his uncle told Andy it was going to be on the radio, and it was funny because that day that the song was on the radio, he came into the hospital, whispered into Andy’s ear that the song was on the radio. Andy opened his eyes, and it was the only time that Andy opened his eyes that day because he was so excited, and you could see it in him. He connected to that, and he looked around the room at everybody who was standing around the bed. It was nice. That was his talent, he was talented at making beats.