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Losing a Child
Memories and Anecdotes
You can go back and you can second guess every decision that you made while your child was alive. It’s really easy to play Monday morning quarterback and say “if I’d only done this, if I’d only done that, if I only didn’t do this...” I realized a couple months into this that every decision we made for our son, every single one, we made, first of all, with the best of intentions and second of all, with all the knowledge we had and all the information we had at that time. So I stopped second guessing myself. In the beginning I did that a lot. I would say to my husband, “What if I hadn’t had that conversation in the hallway, would he still be alive? Would he have lived for another day?” But, the end result was the end result. I think one of the most beneficial things I ever did, and I can thank my husband for it, was I accepted that we did what we did with his best interest, and with every bit of information we had. -Mother It Happened the Way It Was Supposed to Happen for Us I think it happened the way it was supposed to happen for us. 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. -Mother We wanted to make sure that we were not doing anything to prolong pain, prolong discomfort. If he had the ability to go outside and feel the sun on his face and the breeze in his hair, and to express to us some level of happiness, then his fight was worth continuing. Our goal was to help him sustain that quality of life. -Mother She Could Not Have Been More Comfortable We are very proud of how we parented her, and the life we enabled her to live in the 18 months between her diagnosis and her death. There is a great peace that comes from knowing that it was a good life, well-led. She was very loved. She could not have been more comfortable. Every choice we made was about her comfort. We have no regrets about her care or her life. There’s great peace that comes from that. -Mother We had to be strong for so many years. We had to dig down each day, each week, each year for 14 ½ years and put on a happy face even if we were feeling miserable because we couldn’t let our child see how worried we were about her. We learned really well how to wear that mask and also to get up and running. -Mother I probably would be not in the place that I am now if I didn’t have that last afternoon with Paulina. That is something that I really want to get across, that you can make those last hours with your baby or child or the person that you love who is dying, into anything you want it to be. It’s hard, it’s horrible, but that transition can be beautiful, as long as it doesn’t feel too clinical. -Mother Everything Happened So Quickly I remember Wednesday night. Our baby came down with a little bit of a fever. I was rocking her in the chair up in her bedroom and she coughed. I remember the cough being very full with a lot of phlegm. I immediately just started crying and my husband’s looking at me like “What’s the matter with you?” I mouthed the words because my son was right there. I said “She’s really sick. This is something more serious than just congestion. She’s really sick.” I remember rocking her in her bedroom and I was crying. For almost two hours I rocked her in there staring at the crib, thinking to myself “This crib’s going to be empty, she’s going to die.” The next morning sure enough we started going to the ER and everything happened so quickly. I don’t know what in the cough just kind of prepared me. I don’t know what it was. -Mother At the time when you’re going through it, you have a lot of questions and you don’t understand why. To this day, you don’t understand why someone would lose a child. So that’s just what I mean, you don’t really realize it until after. You have so many emotions and feelings going through you that you don’t understand and you feel helpless and hopeless and there’s nothing you can do. -Father Any given day, any given minute, you can have different feelings and emotions and it’s so hard because losing a child is such an unnatural thing. To get through a day is totally a struggle. -Mother 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. -Mother As much as I would take her back, I was very ready to let her go. It was the right thing. It was time for her to go. Her spirit needed to leave her body. Her body couldn’t hold her spirit anymore. Her body was done. It was time. I had no problem letting her go because I knew it was the right thing. I did not try to hold on to her for as long as possible because part of what guided Charlie and me through her illness was that quality of life was the most important thing. What we believed quality of life meant for her was as little intervention as possible. She had a terminal diagnosis and there was no cure for her. Everything that was going to happen was going to happen. The only thing that we were not interested in was prolonging a poor quality of life. When it became clear to us that the quality of her life was no longer any good, these were signs that it was in fact time to let go. -Mother 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. -Mother Memories and Anecdotes 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. -Mother 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. -Mother 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 every thing 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. -Mother 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. -Father |
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Copyright © 2007, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated: December 23, 2007 |
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