Tuesday, May 13, 2014

'Why do you love Jacob more than us?'

The Boy Who Can is a story about my friend Marcy White’s perseverance, creativity and courage in the face of her son Jacob’s life-threatening genetic disorder. The book begins with this “Letter to my Daughters,” Marcy’s twin daughters Sierra and Jamie (all above) who are not affected. It describes the natural hurt siblings can feel when so much of their parent’s time is taken up attending to the child with disability. An important message for all of us. Thanks Marcy!

Dear Sierra and Jamie:

You are too young for me to share this with you now but one day, when you are older, I will tell you how my heart hurt when you asked me why I loved your brother more than you. Your questions caught me off-guard and I’m not sure I expressed myself properly. I desperately need you to know that it is not true.

Being a parent is a constant juggling act, there are always so many balls in the air at risk of falling down and crashing to the floor. Parenting in a household with a “differently-abled” child like your brother is even more of a challenge, simply because his needs are different.

Jacob can’t speak so he doesn’t ask me to play with him. You do. Sometimes I feel guilty for spending more time with you, my mobile and verbal twins, than I do with your brother, who is dependent on others for absolutely everything.

I struggle with balancing my time between all my children. I am constantly asking myself how I can meet your needs without feeling that Jacob is constantly left out. At eight years old, you know so much about disease, more than any child your age should have to comprehend. You are aware that Pelizaeus-Merzbacher disease (PMD) is carried on the X chromosome and that you have two healthy Xs but Jake has a sick X that causes his PMD.

You understand how PMD affects your brother, how he can’t ask me a question, sit by himself or walk. You know that he can’t eat like you do, and needs to be fed with the tube that was surgically implanted into his stomach when he was a few weeks old.

Everything is so hard for him, while you girls can ride your bikes, dance and eat the things you help me bake.

Although it may seem as if Jacob and I spend a lot of time together, relatively little of it is “fun” time, and in fact, we have little time alone during the week. We have our special allotment on Saturdays, but as you know, that it never starts off as a fun morning.

As Emily’s overnight nursing shift nears its end, I try to make sure your breakfast is prepared and a supply of bibs is packed in a bag for Jacob, all his things organized and easily accessible as soon as the front door closes behind her. I run through my mental list of things that need to be done before the craziness begins in earnest.

From the moment Emily walks out of our house until your big brother is fastened in his car seat, you listen to Jacob crying and screaming. Our neighbors must wonder what awful torture I am inflicting on him. And I see you sitting there with your hands over your ears, trying to block out the noise. When you realize that won’t work, you begin to dance around in front of your brother in an eager attempt to console him and elicit a smile. You probably don’t realize this, but I stop what I’m doing and watch you. My heart swells with pride when I see you trying to help Jacob but I also feel like crying—I wish you didn’t have to watch your brother struggle so hard to make himself understood.

You should be able to enjoy a lazy weekend morning at home in your pajamas, cuddling in bed with your parents, not watching us run up and down the stairs, organizing your older sibling’s medical paraphernalia. Unfortunately—for all of us, but especially for Jacob—this is not what our life is like.

In order for me to hang out with Jacob, we have to leave our house. He screams incessantly when I try to play with him at home while you are present. As soon as we leave, he calms down. I have his full attention and together we can enjoy the outing. Maybe Jake knows that I can’t tune everyone else out at home and that he is forced to share my focus with you, the cats, and all the other millions of things that distract me. Regardless of the reason, when we are out, alone, we have fun. It’s “Mommy and Jakey” time.

And we have our weekly swimming. You know how your big brother loves the pool and has learned to swim somewhat independently, surprising the lifeguards and making us all so proud of him. If I’m nearby and not in the water with him, Jake complains and is unable to enjoy the activity; however, if I am in the water, reminding him to move his arms and kick his legs and encouraging his effort, he beams. He giggles and I feel his arms tighten around my neck in a delicious and intentional hug.

After our 45-minute swim, as we are getting dressed and ready to leave, my back aches. Holding him, walking with him on the ramp into and out of the pool, is taxing on a body that has endured more lifting and twisting than it can handle. But watching Jake swim the length of the pool, seeing his little legs break the surface during a kick and listening to his squeal of delight when his hand touches the wall at the end of a lap, is worth every pain.

After those outings, I return feeling like I have spent some quality time with my first born, the child I often believe does not get enough of my undivided attention.

It is so much easier for me to play with you, my beautiful darlings. You express your thoughts and questions so eloquently, and you don’t need me to help you move your leg if it slides off the footrest of your chair. I am in awe of your intelligence and imagination. I love watching you play elaborate games with your dolls as you create different experiences for them. I can sit and listen to your stories for hours. I marvel at the various masterpieces you create for me, each one an incredible work of art.

I drive you to and from your school while Jacob is bussed to and from his. I bathe you and help put on your pajamas. I tuck you into bed at night and comfort you when you wake with a nightmare. A caregiver bathes your brother because he is too heavy for me to carry. I am terrified that I might drop his wet and slippery body during the short transfer from his special shower chair to his changing table.

The same caregiver puts Jacob to sleep while I’m with you, listening to stories about your day. I crawl into bed with Jake for a few minutes of cuddling before he falls asleep. And it’s the nurse in his room who administers his medication and helps ease him back to sleep in the middle of the night when he wakes up with a fever.

But, when I put you into bed this evening, your question sliced through me like a jagged edge of broken glass: Why do you love Jacob more than us? 

The answer, quite simply, is that I don’t love him more than you. And I don’t love you more than him. I love all of you the same. I just have to show it differently.

All my love,


Marcy is speaking about her book at a Toronto event run by Three to Be's Parent Advocacy Link on May 28 from 7 to 9 p.m. at 452 Wilson Ave. RSVP to brenda@threetobe.org


Hi Marcy,

I first met you and Andrew when you were new parents and still figuring out the path that you were going to take with Jacob. I watched you both grow as parents and as a couple.

A few years later, along came Sierra and Jamie and you proudly shared a picture of Jacob and his new siblings. Jacob had the widest grin ever for such a small boy, and he positively glowed in his new role as the proud big brother.

A few years later, I married and had children of my own. I haven’t had to answer the questions that you have, but as a mom my heart aches for your complex dilemma.

I have tremendous respect for the parents that I have been privileged to work with over the years. I always thought that whatever their frailties and imperfections, they were my role models because they were getting on with it and doing the best they could.

When the time is right, your girls will read your beautiful letter and treasure it forever.

What a beautiful letter Marcy, and a heartfelt outpouring of love for and understanding of the emotional and practical needs of each of your children. Having worked with children with severe disabilities on a volunteer basis for 5 years, I am well aware of the constant challenges, struggles and decisions one has to make, sometimes literally on a moment to moment basis. I truly admire the strength, compassion, and dedication you show towards your entire family and I hope that you are generous enough to yourself to allow for the occasional moment to yourself or for you and Andrew when time and circumstances permit. congratulations on your book. Best wishes to you and your family. Lori Burnett

It's a lovely letter you've written to your daughters, but they're absolutely right about being "short-changed" with respect to your time/love/attention.

The girls are smart enough to know. To notice.

And to resent you and especially their brother for it.

It's like the siblings of kids with autism -- who absolutely lose out because everything has to revolved around their highly strug and high maintenance sibling.

I am the sibling of a special needs child. I have so much respect and admiration for parents of special needs kids. My mother changed the world for my sister and taught us siblings so much about love, compassion and self-sacrifice. She is my hero. That said, I can identify with what your girls said and I think your letter is a wonderful response. Just keep loving them and telling them as you are already doing. I believe if parents are aware of the importance of making sure all the kids feel loved and accepted, that will make all the difference. God bless you for sharing your story.

Thank You for sharing. I felt like you were telling my story about my special needs daughter that has similar medical issues(she is a twin) her brother(twin) is healthy and deeply affected but so loving and compassionate as is my oldest daughter. I just hope my children all know how much I truly love them.