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The Quiet Truth Behind Mothering a Special-Needs Child & Their Siblings

Updated: May 10, 2019

My oldest son, Peter, was twelve years old when I wrote this for Children's Craniofacial Association. That was seven years ago, shortly after the first time I read Wonder by R.J. Palacio.

The young-adult novel is about a 10-year old boy who was born with a craniofacial syndrome. It touched me deeply as Peter was also born with a craniofacial syndrome and was [in 2012] about the same age as the fictional character, Auggie. The novel is written from several viewpoints, and one of my favorites is the perspective of Auggie's older sister, Via. This excerpt from Via beautifully captures the thoughts of a special-needs sibling.

Once, I got up in the middle of the night because I was thirsty, and I saw Mom standing outside Auggie's room. Her hand was on the doorknob, her forehead leaning on the door, which was ajar. She wasn't going in his room or stepping out: just standing right outside the door, as if she was listening to the sound of his breathing as he slept. The hallway lights were out. The only thing illuminating her was the blue night-light in August's bedroom. She looked ghostlike standing there. Or maybe I should say angelic... I wonder how many nights she's stood outside his door. And I wonder if she's ever stood outside my door like that.

Peter's breathing has been a concern since birth. He had a tracheotomy when he was only three days old and spent his first three months on a ventilator. When he came home, he slept in our bedroom for two years. I spent countless hours awake at night watching the numbers on his pulse/ox machine go up and down. When he moved to his own bedroom, I used a video monitor so that I could both hear and see him. A decade later, I still listen to his breathing at night, although not nearly as intensely or often as those early years.

The way Via describes her mother in that scene is a mixture of beauty, sadness, and respect. It provides insight into a sibling's understanding of how emotionally intense it is to parent a child like Auggie. It also reveals how much Via desires her mother's love and attention. Throughout the story, you learn how Via grew up quicker, complained less, and took care of herself more often as a result of having Auggie as her brother. This makes me both sad and proud when I think of my youngest son, Jacob.

Unlike Via's character, Jacob is four years younger than his sibling. Thankfully he didn't suffer from the trauma, anxiety, grief, depression, and overwhelming exhaustion that my husband and I endured during Peter's early years. Nevertheless, he is influenced both positively and negatively by having a brother who looks different and requires a lot of medical attention. I know there have been times when Jacob was sick that I thought, "You're fine compared to what your brother's been through." Or, we have joked that it sure would be easier to get Jacob to take his medicine if he only had a feeding tube! On the positive side, being a sibling like Via gives gifts of compassion and empathy that can never be taught. We are, after all, a collection of our life experiences.

If you have more than one child, then you understand what a delicate balancing act it is to make sure each of your children feels equally loved. If one of those children requires intense attention the other sibling(s) are no doubt going to feel the shift in balance. At our house, we really try to give both of our boys the attention they deserve. It's not always possible to make things equal though. Peter's needs are focused on medical care and extra help with homework and self-care every night. Jacob's needs revolve around his love of sports and after-school activities.

Sometimes I feel guilty that the time Peter gets is often in the "less-than-fun" range. Other times the guilt is because Jacob doesn't get as much attention in the evenings when Peter requires so much one-on-one help with homework. All that being said, life is messy and unfair: there are no guarantees, promises get broken, plans change, and we all have trials.

One thing that remains consistent in our home is that we take a few minutes every night to read a book together, talk about our day, and give hugs goodnight. AND, here's my little secret that I want to share with Via... On numerous nights, I still stand not only outside Peter's door but Jacob's as well.

2019 Reflection & Update

Peter and Jacob were 12 and 8 when I wrote this seven years ago. They are now 18 and 14.

Bedtime reading is something I dearly miss, but we still have conversations about their day-- often when they can't escape from me in the car! Peter's breathing remains a challenge, and he will be having airway surgery this coming September.

I don't stand outside their doors so much anymore since they often go to bed later than me! I'm reminded every day though how blessed I am to be their Mom and how quickly they've grown up.

I cherish my memories from their childhood, and I look toward their futures with wonder. Happy Mother's Day... Dede

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