My youngest daughter Laura was critically ill for almost a year. My very first feeling when I knew Laura had died (at 10 years old) was relief that she was finally no longer in pain. That was very quickly followed by guilt about feeling relief.
Oddly, that was followed by a sense that I was no longer a mother, which was ridiculous as I had three surviving children. My entire life had become so engrossed in caring and worrying for my daughter; I was doing everything with her and for her from staying at the hospital with her to administering intravenous nutrition to caring for her pain epidural, and even being at school with her due to her extreme fragility. When she died, I felt I had no purpose or meaning to my life anymore. I felt like I was no longer needed like she had needed me. But very quickly I came to realize that I was needed just as much by my three remaining children (two boys and a girl) to help them in navigating their grief and finding their way in a world without their sibling.
My youngest son is also Laura’s twin. His very first reaction was that he would no longer have a birthday now that she was gone. My oldest son, who was 12 years old at the time, is a quiet introvert and doesn’t express a lot of emotion. My oldest daughter, who was also 12 years old at the time, was devastated as she had lost her closest friend.
All of the grief articles and books tell you that each grief journey is unique and do what feels right for you, but how do you balance that with the grief journeys of three children?
I had to really fight my natural tendency to jump into action and clean out her room, box everything up, and keep busy. It was my husband who said we had to have a “family meeting” where we gave everyone a voice about what we would do. It became clear that most of the children, and my husband, were not ready to change anything at all in her room. Walking by her room, it looked like Laura would be back at home with us at any moment and then it would hit me – she was never coming home.
Other questions we discussed at the “family meeting” were around the holidays and her birthday. She passed away December 7. How would we manage Christmas which was right around the corner? Her birthday, and that of her twin brother was in April. How do we manage a joyous celebration for him when she was not there?
My oldest son is very tied to our traditions and customs as a family and we did most of our usual Christmas activities that first year. We did put up Laura’s sock and since I had already done a lot of gift buying for her before her death, I had a few things to put in her sock. The only change we made was Christmas dinner. We had always hosted the dinner for family at our house and my parents stepped in and had the dinner. To be honest, I really don’t remember much of anything that first Christmas, other than going through the motions and trying to have as “normal” a celebration as possible for all of us.
I was most stressed about Laura’s birthday and how to manage that day. We had no choice but to celebrate with Laura’s twin. How would we manage that and also honor Laura was more than I thought I could manage. Laura’s twin was still so worried he would never have another birthday.
I was given a wonderful reading from a member of the palliative care team that had become very close to all of us. Ultimately, we did have a family party for both of them. We had a cake with all the candles for him to blow out, then we added one pink candle and I read the beautiful words that allowed us all to remember and rejoice in Laura’s life before we all blew out her candle.
Laura’s twin struggled at school after Laura’s death, and the teacher and I were in regular communication. We took him to Build-A-Bear so he could have his own “Laura” bear which seemed to help. Even though that first birthday without her was more than 12 years ago, her twin asks every year to have her candle put on the cake and Laura bear is still with him in his bedroom.
Laura’s sister was most visibly impacted and felt isolated. Her two brothers still had each other, but she was now by herself. We took all the kids to grief sessions but asked for extra counseling for her. She keeps pictures of Laura in her room and even had her high school graduation picture taken with her holding a picture of Laura. I made a photo memory book of Laura for all the children and she keeps hers close at hand and has shared this with her close friends. I suggested that she might want to speak as part of a panel at a grief support event about the impact of loss on a sibling which she agreed to do.
My oldest son grieved in silence for the most part. Although his bedroom was in the basement at the time Laura became ill, he was not comfortable being apart from the rest of us. So I set him up a spot on the floor in our room initially, often with his younger brother joining him. It was like camping at home. He needed closeness, which was good for me as well. After a while, he moved into his younger brother’s room and eventually decided it was alright for him to go back to the basement. Although he does not speak often about Laura, there are some customs we have now that he will not miss. Each Christmas we attend the Journey Through Loss of a Young Child Memory Tree event at the Children’s Hospital and he hasn’t missed a single one. We also visit her tree planted near the zoo. Even though he is now in his own apartment, he still keeps a picture of Laura on his bookshelf.
It has taken a lot of communication and compromise to help each of our remaining three children find their way.
One of the more difficult decisions was around what to do with Laura’s room and it has very slowly resolved itself with time. We have donated many of her clothes and toys, but her special and most loved possessions are packed up and safely stored. Laura’s sister now has some of her furniture in her bedroom. We agreed to keep the wallpaper as it was, and a shelf above her closet still displays the dozens of stuffed animals she received over her many lengthy hospital stays.
Our family is now in our thirteenth year of our ongoing grief journey. While the overwhelming pain and grief has lessened somewhat with time, our lives and our family are irrevocably changed. I am so blessed to have been Laura’s mom and to also have three surviving children who each keep Laura’s memory alive in their own way.
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