The Childhood Cancer Blog

Our family of six has been living as a family of five (On missing Alex 18 years later)

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  • Alex with her mom Liz.
    When Alex died, Liz didn’t just lose a daughter, but someone who would have grown to be a best friend to her as they aged.
  • Alex with her brother Patrick
    Patrick's earliest memory is when he went to the hospital to see his sister Alex, the day after she was diagnosed with neuroblastoma.
  • Alex with her brother Eddie.
    Eddie (pictured above with Alex) was just 5 years old when Alex passed away.
  • Alex with her brother Joey
    Alex anticipated the birth of her youngest brother Joey (pictured above) with great excitement.
  • Alex with her Dad Jay.
    When Alex died, Liz didn’t just lose a daughter, but someone who would have grown to be a best friend to her as they aged.

By: Liz Scott, Alex's Mom

Today marks 18 years since my daughter Alex passed away. I have heard many ways that families who have lost children mark this day — quietly or with displays of remembrance, butterfly releases or special services at a place of worship. Each family has their own ways of holding their dear child or sibling in their hearts. Our family tends to be on the quiet side. I am sure that sounds odd since I am writing a public blog that will be shared on the Alex’s Lemonade Stand Foundation social channels, but that is how it feels. We won’t do any special remembrance as a family. We each acknowledge this day in our own way, mostly with thoughts of Alex and how our lives would be today if she were with us. I think it is fitting that we each acknowledge the day individually — after all each of us had a unique loss.

You can’t compare the grief and loss of one to another.

Our oldest son Patrick lost his younger sister. Alex was just one year younger than him. Older siblings have a natural way of looking out for their younger siblings; they feel protective and a duty to watch over them. Patrick’s first memory in life, at the tender age of 2, is when he went to the hospital to see Alex, the day after she was diagnosed. He watched Alex go through so much and remembers most of it — the effect that has on his person is profound and it has molded him into who he is today. Patrick spent four years working for the Foundation, wanting to contribute to her legacy and still wanting to watch over and care for his sister. I could imagine today that he and Alex would be great friends with shared memories from a lifetime of being close, not just in age, but mentally connected on so many levels.

Our middle son Eddie was just 5 years old when Alex passed away. He spent most of his early life, from the moment he was born, by Alex’s side at her appointments and watching what she went through. He was quite famous among the hospital staff because of his constant presence and the joy he brought to our visits. When Alex was up for having fun and laughing, Eddie was the person she looked to. I can still picture them dancing like no one was watching in our kitchen to their favorite song at the time, (which I am sad to say escapes me now) or laughing with excitement as they slid down a slide or splashed in a cold sprinkler. As the younger brother by two years, Eddie lost a playmate, a sister to share his fun personality with and all future memories with her. I imagine today they would still have the biggest laughs when they were together and the special closeness that would come from that. 

Our youngest Joey was born at a time when we all needed a reason to feel hopeful, especially Alex, as she was entering the hardest part of her fight. She anticipated his birth with great excitement. Alex helped to fold his little baby clothes and set up his crib and baby swing, as she imagined all the ways she could help take care of her baby brother. In the 18 months they shared together, Alex was Joey’s protector — often watching over him, being the first to offer him his pacifier when he fussed, offering to feed him and hold him, and later, handing him toy after toy on our many days spent at the hospital in their shared red wagon. And, as any big sister would, Alex taught him boundaries — making it clear when he was annoying her or getting into her space a little too much. I will never forget how she spent months knitting a little white kitten, her first completed knitting project. I assumed she was making it for herself, but she finished it just a day before he turned one so she could give it to him for his 1st birthday. That is the type of sisterly love and thoughtfulness that he surely misses today, from a sister he never really knew.

And of course, Jay has lost his only daughter. I am told there is a special bond between dads and daughters, one that you must experience to understand. This was certainly true in the case of Alex and Jay. Besides her beautiful blue eyes, I often say she got her stubbornness and strong personality from Jay. Alex also got her unwillingness to accept “good enough.” She always thought she and others could do better, and that served her well in her life. It also led to some epic moments between Jay and Alex, when his sharp comments would be met with hers, his wit would be matched by hers, and his stubbornness would give way to hers. They were also buddies. Jay covered most nights at the hospital, which meant quality time together, playing games of her choosing, and eating their favorite foods. It goes without saying that his loss is immeasurable, a “girl dad” who is missing his girl. 

My loss is also immeasurable. I love my three sons with all my heart. The unique relationship I share with each of them is my greatest source of joy in life, which makes it hard for me to admit there are many times I yearn for my daughter and the unique relationship I would have with her. It is the big things, like knowing our family of 6 has been living as a family of 5, and all the big moments I missed with Alex as she grew into adulthood and beyond. It is also silly things, like someone to get my nails done with, or to give me an opinion on my outfit, or just to discuss some of the books and shows I am sure we would have shared that I just can’t convince my sons to enjoy. When Alex died, I didn’t just lose a daughter, but someone who could turn to me with questions that a daughter might ask her mom, someone I could advise on being a mom and a wife, and someone who would have grown to be a best friend to me as we aged.

Our losses are unique but our story is not — too many families whose children have cancer have unique losses of their sons, daughters, brothers and sisters. This is the shared pain we can all understand that moves us to action, to keep pushing for cures, that inspires families to hold lemonade stands and companies to pull out all the stops in their fundraising. 

Despite the depths of loss and impact it has had on our lives as individuals and a family, we recognize that we are very lucky that Alex has such a strong presence in our lives. She lives on in tangible ways through our work with the foundation, the incredible people we have met, and the experiences we have had because of her life and legacy. Most of all she lives on in the kids (some of them now adults!) who have the opportunity for a cure because of her life

So, today as we mark the years since Alex left us, my family will remember her in our own quiet ways as we reflect on our losses, but we will recognize how fortunate we are that she lives on and is remembered for her beautiful life. Thank you for reading and remembering with us. 

If you are moved to donate today, I encourage you to donate to our SuperSibs program in honor of her brothers, to provide comfort, care and empowerment to siblings of children with cancer. 

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