Saturday, April 3, 2010
From Thursday's Globe and Mail Published on Wednesday, Mar. 31, 2010 6:02PM EDT Last updated
on Wednesday, Mar. 31, 2010 6:07PM EDT
Jacob’s five-year-old twin sisters know their big brother can’t speak. They know he eats by a tube
surgically implanted into his stomach and they know he can’t move by himself. They also know he
understands what they say and he loves to watch them play.
Jamie, the lankier twin with curly hair and blueberry eyes, knows how to make her seven-year-old
brother laugh. Her off-tune, high-pitched singing always results in an ear-to-ear grin from her brother’s
gap-toothed mouth. The more he laughs, the more Jamie chants, and the more she chants, the more he
laughs. They enjoy their game, and I love watching every second of their interaction.
The decision to have more children after Jacob was diagnosed with Pelizaeus-Merzbacher disease, a
severe neurodegenerative disorder, was colossal. Was it selfish of me to bring a healthy child into a
family with a child who required constant care?
During the first few years of Jacob’s life, I lived as though I was in a bubble. Most days were spent at
home, fearful of exposing Jacob to simple germs that could be life threatening for his weak immune
system. My friends were welcome in my house, but their children were not. Aside from the unknown
viruses that kids harbour, it was too agonizing for me to watch healthy kids run, speak and eat,
activities Jacob was unable to master.
When Jacob was younger, life was excruciating. My son was in constant pain and each ear-piercing
scream was like a red-hot dagger slicing through my heart. There were no hints that he would ever be
comfortable and happy.
When I started exploring the idea of a sibling for Jacob, I thought it would be terrific for me. It would
allow me to re-enter the “normal” world and experience the joys of parenthood as a “typical” parent, a
mother who was fortunate enough to teach her child how to count to 10, ride a bicycle and hold a
crayon. My parenting experience had consisted mostly of medication administration, physical therapy
and frequent doctors’ appointments. It was easy to see that a healthy child would bring some much-
wanted normalcy into my life.
But late at night, when Jacob was in the care of a night nurse because he cannot be left alone, I wrestled
over what to do. What impact would having a disabled older brother have on a younger sibling? Would
a sibling detract from the attention Jacob needed?
I reasoned that Jake would have the opportunity to interact with another child, something he rarely did
but seemed to enjoy. The stories I heard from others led me to believe that Jacob’s hypothetical sister or
brother would not be negatively affected by growing up in our family. With proper guidance, he or she
had a tremendous opportunity to thrive and become a special person because of being his sibling.
When Jake was 21⁄2, he became a big brother to healthy twin sisters. The twins were a welcome
surprise, although twins aren’t rare in our families.
As infants , Sierra and Jamie were a handful in the way that all babies are, but it was so much easier
parenting these two girls than it was caring for their brother at the same age. I knew that if the girls
were hungry they would eat, if they were tired they would sleep, and if they cried they were not at risk
of choking. They never needed me to thread a suction tube down their throat to clear their airways.
It was evident that Sierra and Jamie were a welcome addition to our family. The increased activity in
our house pleased Jacob. He smiled when we placed him on the sofa with a sister on either side of him.
His eyes sparkled when he was positioned in the front of the double stroller listening to his little sisters’
babble, squished in the seat behind him.
As I watched my girls explore their surroundings, I had a mix of emotions running through me. I
wavered between awe at the ease with which Sierra and Jamie knew how to hold a rattle or turn the
page in a book, and soul-numbing sorrow knowing that Jacob was unable to hold his beloved guitar by
The girls were early talkers, and curious. As Sierra was nearing her third birthday, she asked me why
Jacob can’t walk. Her innocent question scared me. I knew that at some point they would notice that
Jacob was different from their friends’ older brothers. It was important to me that the girls feel
comfortable asking questions about their brother, and I was determined to give them honest and age-
appropriate answers that would help them understand Jacob but not scare them.
She was satisfied with my response that his legs don’t work the same way hers do, but I knew this
question would shortly be followed by other, more challenging ones.
When Sierra and Jamie blew out the candles on their Dora the Explorer birthday cake on their third
birthday, Sierra pushed her hair away from her face and asked if I could put some cake in Jacob’s
feeding tube so he could have some too. She knew her brother does not eat the same way she does, but
she wanted him to enjoy something she loves. As my eyes filled with tears, I told her that I was very
proud of her attempt to share her cake with her brother.
My family is not typical. Jacob still requires constant care, but making him an older brother was the
right decision for us. Jake’s younger sisters are happy, smart and curious girls. They have a special
brother with a contagious laugh that can be heard any time they try to tickle him.
Marcy White lives in Toronto.