We had the same ache in our hearts

We've had guest blogs about the impact of a child’s disabilities or special needs on a marriage. I found a piece I wrote about the different ways that my husband D’Arcy and I reacted to Ben’s genetic condition early on. It can use some work, but I thought it might be of interest to other parents. D'Arcy read the piece and remembered some of these things differently, but was okay with me running it! Louise

We had the same ache in our hearts
By Louise Kinross

I was the bearer of bad news.

As Ben’s primary caregiver, I was typically the one who heard first about new diagnoses. I received the news and stewed about it all day, then regurgitated it the second that D'Arcy walked in the door.

I got my sense of control from becoming an expert on my son’s rare genetic condition and therapeutic treatments. I thought that if I could only learn enough about his special needs and every available medical and alternative treatment, I could ‘fix’ or in some way control his future.

D’Arcy got his sense of control from losing himself in work he loved all day, then coming home and wanting to delight in his son. He kept his anxieties and fears shelved in an unreachable place, protected by a blanket of denial. He wanted to be the happy, easy-going, laid back dad – the party dad who would do anything to make his son happy and would never, ever hurt him, even if something was medically necessary.

When Ben was almost 3, a virus that we all had turned to pneumonia in his right lung. We were used to giving Ben ventolin masks whenever he had a cold – which brought on his asthma and terrible inbreathing. However, this time in Emergency, when D'Arcy and I were left alone to give him the masks, he screamed and fought us off desperately. D'Arcy had to restrain him by holding his arms and hands down with his hands, and his body still with his knee, while I kept the mask on his face. I'm not sure if the medication smelled funny or if perhaps the compressor made a different noise from the one we have at home – but Ben fought to be free of it as if he was suffocating.

I knew it was essential for Ben to have the masks, but D'Arcy's soft spot kicked in.

He began to loosen his grip, letting Ben throw off the mask.

"He needs the mask," I yelled over the whir of the compressor, frantic that we not waste the medicine that was now billowing out aimlessly.

"It's hurting him," D'Arcy yelled back. "Give him a break."

"We are not giving him a break by not treating him," I snapped, and placed the mask firmly back on his face. D'Arcy pulled it off again. I put it back on and then we fought over it like two children: me trying to yank it away while D'Arcy refused to let go.

"XXXX off," I screamed.

Ben, as always, was at the centre of our relationship.

My daughter Lucy, now eight months old, lay behind us, sleeping peacefully in her car seat.

It would have looked comical, if it wasn't so sad.

I felt hopeless.

Feb. 1, 1997

DArcy and I were at each other's throats at the hospital. I am so tired of it. After our talk on Friday I felt some hope, like we could work things out – build a satisfying relationship and family. Now it just seem like we are back in the trenches. I am embarrassed and ashamed that I allowed myself to be mad in front of Ben.

It hurts so much to see Ben going through what he went through today: Being restrained for the mask, then being put in a "trap-like" device to have his chest x-ray. It is torture. I felt like I wanted to die when I watched his desperate screams. I feel so fragile emotionally, like the smallest thing will knock me off my feet.

D’Arcy tended to minimize and downplay any signs that Ben had medical or developmental problems.

I magnified them, carrying on me a yoke of perpetual anxiety, worry and high-alert.

I was the one who did the emotionally-difficult therapies – forcing your child to do things that were hard, frustrating, out of their comfort zone. Being the tough one because I never wanted to feel we hadn't tried everything we possibly could to help Ben.

I was often the one who took over the painful medical interventions because I knew they "had to be done." D'Arcy didn't seem able to do them emotionally.

Things like giving him repeated ventolin masks; drops at night in his highly-sensitive and painful ears (with structural differences that caused severe ear infections, despite eight sets of tubes, he learned as a toddler to go to sleep holding his hands over his ears); watching him fight sedation for medical tests till he began falling over; forcing him to wear a patch over his strong eye; taking his beloved ‘bobo’ – bottle – away from him at just over a year because it might be contributing to his ear infections (wrong).

Oct. 19, 1996

I have such mood swings. At certain times of the day I am feeling positive and happy and at others I feel very alone, isolated, depressed, angry – and a more recent emotion: bitter. It is hard for me to see others starting out in relationships or marriage or getting pregnant and knowing that they will probably never know the pain we have. I know I have to work through this because I DO NOT want to be a bitter person.

I continue to feel alienated from D'Arcy and angry at him. I feel like most of the "special" care for Ben – his physio, eye patch, appointments, all of the research about LGS and his growth problems – falls on me and sometimes it is too much. D'Arcy does do a lot of things with Ben – giving him his medicine, putting him to bed, getting up early in the morning with him. But I wish he would support me more with the daily physio, patch, growth problems and other issues related to Langer-Giedion syndrome. I have been feeling very negative about our relationship and it scares me. It seems like there is too much Ben-related pressure, stress and emotion. We are constantly setting each other off.

When Ben first started eating solids he had numerous choking incidents. Our pediatrician said they were isolated. D’Arcy tended to downplay them because he often wasn’t present when they occurred. We had taken special CPR training but the techniques we were shown – to hold him facing down over a knee and hit his back hard – seemed to make the choking worse. There were calls to 911 and police and fire trucks. I would shake afterwards. But when I called D’Arcy at work, he got so used to this that as I began to recount the latest horrifying incident, he would say simply: “Is he breathing now?” And if I answered yes, he didn’t want to hear more about it. Ben was later diagnosed with an uncoordinated swallow that meant when he swallowed, only some food went down, while the remaining food pooled at the back of his throat.

I went back to work full-time when Ben was 4. Suddenly D'Arcy – who had mornings off as he worked a late shift – was indoctrinated into the world of daily therapies and medical tests. One medical visit stands out.

Ben had hearing aids, but it was almost impossible to get him to wear them because his ears were so painful from infection. I called D’Arcy to ask how the morning appointment with the audiologist went.

"Horrible," he said.

"What happened?"

"She tested him without his hearing aids, and then she insisted we put the aids in. He kept taking them out, to the point that I had to physically hold them in and he was crying and fighting me.”

“Oh Darcy!” I said.

“Then I started to cry,” D’Arcy said. “So she told me I could stop.”

"I'm so sorry," I said. And I knew he had the same ache in his heart.