A mum who has lost two children in under a year has revealed her heartbreaking fear that her little girl's death 'wouldn't be as beautiful' as her big brother's.
Stefanie Boyce looked on with "profound honour" as her beautiful nine-year-old daughter, Brooklyn, took her final breath last week after battling a rare condition.
Just eight months earlier, she had watched her 11-year-old son, Jayden - Brooklyn's beloved older brother - pass away peacefully as he lay between her and her husband. The siblings had both lived courageously with the same rare and terminal disorder.
And as Brooklyn neared the end of her short life, Stefanie found herself asking an unimaginable question that no mum or dad should ever be faced with.
"What parent has to think these thoughts, 'I wonder if my daughter's death will be as beautiful as my son's?'," said the 37-year-old writer, from Illinois, US.
Referring to Brooklyn as 'B' and Jayden as 'J', she added: "My greatest fear was B’s passing would be sudden and tragic. A seizure. A morning I’d find her not breathing. [...] Some way that I couldn’t say good-bye. Some way not as holy or sacred as Jayden’s."
But since her daughter's death, Stefanie has experienced a form of "peace", knowing her two brave children are together again, playing in Heaven.
"B is probably dragging him around Heaven giving him the tour even though J knows his way around," she said in an emotional tribute to the pair. "And I bet J is chuckling and going along with it as she does."
It was on Monday, August 6, that Brooklyn "received her crown of life", surrounded by her loved ones, including her dad, Justin, 38, and six-year-old sister, Ellie.
Also known as "Beeba", the youngster had a contagious laugh and lit up every room with her personality - which was "as big as her beautiful blonde hair".
The same day of the week, on November 13 last year, her brother and "best pal" Jayden had gained his own "crown", while lying peacefully between their parents. A gentle little boy who had a "vibrant smile" for everyone, he had loved dancing with his mum, playing with his dad and holding hands with Brooklyn and Ellie.
Brooklyn and Jayden had both been 'brave warriors' against Sanfilippo Syndrome, a regressive metabolic disorder that affects around one in 70,000 children. Youngsters with the condition progress for a couple of years, before slowly losing the ability to walk, talk and eat. They typically pass away before they reach 20.
In Stefanie's tribute, which she gave Mirror Online permission to share, she described how her and husband Justin's routine "has all disappeared in one breath".
"We are no longer a special needs family," said the mum, whose youngest, Ellie, does not have the genetic disease. "Our membership to the club got revoked. Expired. And although we never wanted to join, once we did, we didn’t want to leave. [...] Beauty is found in its members. God is found in its meetings. Don’t get me wrong, we will stay connected as honorary members, but honorary none the less."
But she added that "there’s a peace now that comes as I envision J and B together. [...] Maybe they’re laughing together because B just had to pass on the 6 and J on the 13, so they could share the Monday," she said. "But in true Beeba fashion, her Monday would be first." She concluded: "I always wondered why two, but not anymore."
Although their lives were short, Brooklyn and Jayden both helped to raise awareness of Sanfilippo Syndrome and the desperate need to find a cure.
An obituary for Brooklyn describes how the little girl navigated the condition "with strength, grace, and a smile as genuine as they come". She did so while impacting the lives of others.
On the day of her daughter's death, Stefanie said it was her "profound honour" to have watched the youngster "take her first and her last breath".
"Mourning and sadness feel just as right as joy. Brooklyn, you have brought joy to our life and to every life that has ever been touched by yours," she said. "Even in your last few breaths you made me smile in my tears. [...] May I always strive to live as beautifully as you have."
She added that she would be forever "looking" for her "sweet girl". The day after Brooklyn's passing, Stefanie and Justin marked their 14th wedding anniversary.
They spent part of it at a funeral home, planning their daughter's funeral. Although she and Jayden had suffered from Sanfilippo, the syndrome was "not all of them" and they didn't allow it to stop them from smiling and having fun. Their parents say their legacies will last "for an eternity".
Stefanie's full tribute
There’s a weird feeling I have that my grief feels complete. There had been an anticipation of having to do this again and fear of what it would be like. My greatest fear was B’s passing would be sudden and tragic.
A morning I’d find her not breathing.
Some way that I couldn’t say good-bye. Some way not as holy or sacred as Jayden’s.
What parent has to think these thoughts, “I wonder if my daughter’s death will be as beautiful as my son’s?”
But, I’m not the only one.
There was an incompleteness to my grief. Maybe that sounds wrong but it isn’t meant to. I certainly would have chosen another day of anticipation if it meant I could have B.
It’s just J and B were always, J&B. A package deal. It was always hard to separate them, even google photo gets it wrong.
Of course they were individuals, too.
J was sweet, B was spicy.
J was patient, B was ...me.
J was a runner, B was a singer.
Of course walking back in the house after Jayden left that last morning and placing B on my lap was a gift. And every beep from her feeding machine, every breath in his bed and pjs, every push of her stroller - our entire routine and life with her - connected us to Jayden.
Perhaps my grief feels complete because now I can begin to grieve. For the routine, our life, caregiving that remained as reminders, has all disappeared in one breath.
We are no longer a special needs family. Our membership to the club got revoked. Expired. And although we never wanted to join, once we did, we didn’t want to leave.
Beauty is found in its members.
God is found in its meetings.
Don’t get me wrong, we will stay connected as honorary members, but honorary none the less.
There’s a peace now that comes as I envision J and B together, just like this picture, holding hands. B is probably dragging him around Heaven giving him the tour even though J knows his way around, and I bet J is chuckling and going along with it as she does.
Maybe they’re laughing together because B just had to pass on the 6 and J on the 13, so they could share the Monday, but in true Beeba fashion, her Monday would be first.
I always wondered why 2, but not any more.
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