When my brother Brandon was born prematurely, my mother met at lot of other parents in the neonatal intensive care unit (NICU) who were all living on pins and needles with uncertainty over the future of their respective children.

One woman was continually writing letters to her child about what she was feeling and about what he was going through each day. Together, she and my mom went shopping for clothes at Build-A-Bear because the clothing for teddy bears was the right size for their premature children who were too small to fit any of the baby clothing they could find.

While they were shopping, they had also been searching for a baby book that they could fill out for their children, but they couldn’t find one. Yes, they could have filled out the birthdate and time and the baby’s weight and size. However, in all of the standard baby books, they were seeing milestones to note that they knew their babies were not likely to reach on schedule, if at all.

My mother, who has a knack for desktop publishing, determined that she wanted to have a record of her son as she had done for me. After searching for whether there were any scrapbook journals for preemies and having not found anything like what she had in mind, she decided to design her own.

“Initially, I thought this was just going to be a record of a miracle, not a record of a life,” she reflects.

My parents were cautiously optimistic that Brandon would survive and my mom looked forward to hopefully sharing this record of his early life with him and with others as he grew up.

As she began designing her own Special Care Baby Book, the NICU nurses encouraged her, making suggestions for the book’s content based on other people’s experiences and needs after having premature children.

The pages gave space to document: handprints and footprints, vital statistics, problems that arose and actions taken to solve them, how the baby’s name was chosen, medical progress, special procedures, required medications, transfers between hospitals and units, conferences with doctors and counsellors, guestbook pages of visitors, and an autograph sheet to be signed by nurses and others involved in the newborn’s care. She created religious and secular editions.

When I asked my mom why she made the Special Care Baby Book, she told me, “Just like everything I do in life, I did it for you.” And then, “I knew that you would have a blog in your 30th year and that you would want to tell your brother’s story,” she joked.

At the time, my mother needed to understand a lot of information that was coming at her quickly. Collecting notes and journalling became a cathartic way for her to document her love for her son. “I wanted to capture every moment with him in a way that I would never forget,” she says.

Over the years, my mom gave me and my brother Evan our own blank copies of the Special Care Baby Book so that we could remember our brother, too. Growing up, on the anniversaries of Brandon’s birthday into the world and his birthday into heaven, Evan and I looked forward to eating cupcakes and decorating and journalling in our Special Care Baby books in remembrance of our brother, Brandon.

Even though Brandon only lived for seven months, he remains a lovingly cherished member of our family and I am so thankful to my parents for teaching us how to honour him.