Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

Our “new normal”.

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It’s Fathers Day 2006.

I’m sitting in the office of Raffles Hospital’s paediatric clinic, alone with my 2 year old son. He’d been having some speech issues, and falling over for no apparent reason. So I did what any normal mother would do – I took him to the doctor for peace of mind. But deep down, I knew something was amiss. I knew something wasn’t right. I was dreading hearing the words from the doctor’s mouth – “your son has mild autism” or “your son has mild cerebral palsy”. The thought of him uttering those words was beyond terrifying. How would I cope? Our lives would never be the same, all those dreams we’d had for our son would remain just that – dreams.

Those thoughts kept running through my head. I held my breath as I waited for those awful words. But those words never came. I wish they did, but they didn’t. Oh, if only it was mild autism or mild cerebral palsy. No, the reality was worse. So much worse.

“He has muscular dystrophy”

Those words, and the smile that played on his lips, will forever haunt me. Until the day I draw my final breath. Those words fell from his lips. I heard them, in such agonisingly slow motion. And it took a moment for those words to register in my brain. The thing is, I knew what muscular dystrophy was. I’d known ever since I was a child and had watched a 10 year old on TV whose mother was pleading for a cure because her son was dying. He had muscular dystrophy. My son was going to die! Yes, confirmed the doctor. And that was that.

The next few months were spent visiting specialists, and coming to terms with our son’s prognosis and what his future entailed. We honestly didn’t give much thought past the fact he’d be in a wheelchair. That alone was unimaginably difficult to comprehend. Our son would spend his short life in a wheelchair. He would need all the help we could give him. We didn’t think much more past that one thought. Honestly, we couldn’t. It was already too much to take in, too much to cope with, too painful to consider. There were regular appointments, daily drugs and supplements, nightly massages and stretches, and constant supervision whenever he played outside. This was to become our “new normal”. The daily and weekly routines, which were so overwhelming at first, became part of our lives, things that we did on auto-pilot. After a while, we almost forgot how life used to be. We were lulled into a false sense of security, thinking that this was as bad as it got and we would be able to handle this.

The thing we didn’t realise at the time, or more that we didn’t want to acknowledge (because denial is not just a river in Egypt), is that Duchenne is more than having a child in a wheelchair. Much MUCH more. Because once they lose the use of their legs, they start to lose the use of every other part of their bodies. If ONLY it was as bad as ending up in a wheelchair. If ONLY it was just their legs that didn’t work.

As the years went by, our son achieved a number of milestones. He could jump, ride his bike, run around with his rugby ball and ride on his scooter. We almost forgot about the dark cloud hanging over us. He was slow, that much was obvious, and he couldn’t walk all day like his younger sister, but he was still able to do so much. He was taking daily steroids and they seemed to make a huge difference. Yes, his personality had changed and he was a little bit aggressive, but he was achieving milestones! That in itself was fantastic!

And then, in 2013, he rode his bike for the last time. He knew he couldn’t do it anymore. It was just so hard on his weakened arms and legs, and he was exhausted just be holding himself up on the bike seat. His bike was retired that day, his precious blue bike that he’d had so many hours of pleasure on. Even though he’d been using a wheelchair and motorised scooter for a few years by this time, retiring his bike was the first time we really had to acknowledge that the disease was progressing. Our “normal” was about to change again. Once again, we were overwhelmed with what our new “normal” would entail.

Our new normal is difficult. James is transitioning. Ugh! I hate that word. TRANSITIONING. Most of the time, a transition is either a choice or a right of passage. Bruce Jenner transitioned. He became something that made him happy. Cinderella transitioned into the belle of the ball. A girl transitions into a woman. A boy transitions into a man. As we grow older, we transition and move forward. But in the case of a child with duchenne, that transition is backwards. There’s no moving forward once they go into primary school. They start falling more, their balance diminishes, their strength wanes. They lose control of everyday functions and abilities. They can no longer run around an oval, or ride a bike. They fatigue quickly. And that makes them both angry and sad. Angry, because they have no idea what is happening to them. And sad, because they used to be able to do those things and now they can’t. They sit there and watch their siblings and friends have fun playing. All they can do is sit. Sit and watch. Nothing more. Some kids take that in their stride, but most kids struggle with it. A kid wants to be like other kids, they don’t want to be different. That was never part of the plan, being different. As adults, differences are embraced by many, but kids don’t often understand that. So different kids tend to be left behind or excluded.

The hardest thing about Duchenne (at the moment) is the loneliness and isolation our son feels. He will be 11 years old next week, and has only ever been invited to 2 birthday parties and one play date, both when he was much younger. We’ve known all along that we’d have to accompany him to birthday parties and play dates, and that was okay. We were prepared for that. But the birthday parties and play dates never came. Apart from two when he was younger, he has never been invited to a party or a play date. I can only assume it’s because parents are concerned about taking on the responsibility of looking after a disabled child, never considering that we would make arrangements to ensure he could go and enjoy himself safely. So each weekend and every school holiday is spent watching his brother and sisters go to parties or sleepovers. He waves them off at the door, with a fake smile plastered on his face, and then goes back to playing on his iPad. Alone. The loneliness is his new normal. The isolation is his new normal. And it’s a screwed up “new normal” to have. He’s going through something that no one else could even imagine, and he doesn’t even have friends to help him through it. He’s all alone. He has us, but at 11 years of age you want your mates. You want friends. How, as a parent, can we accept that this is his new normal? No one ever told us it would be like this. No one ever told us he would be so lonely.

In light of his loneliness, we make an effort to get out each weekend. We try to do something special, but it’s always limited to going to lunch somewhere. We can’t go hiking, or to the beach, or camping (although that has more to do with his father snoring!) We can’t play rugby or cricket with him, or shoot hoops. We can’t go for long walks unless he gets pushed in his chair. And I can tell you, he doesn’t like being pushed around. We can’t go to putt-putt golf because his chair doesn’t fit around the course, plus he gets too exhausted. He can’t ride a horse as he doesn’t have the strength to hold himself up. We go on long drives, and we can take him to museums and movies, but with 4 children the expense mounts up. He can’t go outside and play after school, the way other kids do. He has two best friends in life – his iPad and his Bobby the Bear (he’s had since he was born). But they don’t talk to him, they don’t make him laugh, they don’t listen to his fears and tell him everything will be okay. It’s a one-sided relationship he has with them. He needs more. But we can’t give him more, because this is his life. Welcome to our new normal.

I have always said, you only know what you know. YOU ONLY KNOW WHAT YOU KNOW. In other words, you only know that the happiest moment in your life was the moment you were happiest up to that point. There might be moments in the future that will make you even happier than how you have felt up till now. The same goes for pain. Unless you’ve experienced childbirth or a broken bone (or worse), you have no idea of how physically painful things can be. If the most pain you’ve ever experienced is a grazed knee, then childbirth will seem excruciating. But you honestly can’t imagine how painful it will be until you go through it yourself. The same goes for emotional pain. A breakup with someone you love can be painful, more painful that other disappointments you might have experienced up to that point. But watching a child die, and learning to live life without them, that’s probably the most painful thing any parent will ever experience. I haven’t lost a child, so I can’t truly fathom how overwhelming or debilitating that sort of pain can be. But I know I will experience it one day. And I know it will be way too soon. All I know, at this point in my life, is that watching my child’s body slowly “die” is the most excruciatingly painful thing I have ever had to go through. Nothing I went through previously even comes close (except for perhaps the haze that followed after his diagnosis). My child is dying. Slowly. And I can do nothing but make him as comfortable as possible and watch it happen. We still have many happy moments, we have moments full of joy, but those moments are always tinged with THAT knowledge. Nothing will every be as joyful, or as happy, as those that we experienced before those fateful words came out of that doctor’s mouth.

Duchenne will continue to progress, his body will continue to deteriorate. Who knows what our next “new normal” will be? All I know is this – his arms are going and he will go off his feet for good. We will require hoists to move him, change him, shower him, toilet him. He will be like a 120+ pound baby, a baby that needs to be fed and cleaned and entertained. A baby who needs to be turned numerous times each night just to stay comfortable. The thought of each of these fills me with fear, because I know that the adjustment period will be excruciatingly difficult. He’s not one of these boys that is happy just being. He gets angry with us, he screams at us, he cries, he lashes out, he hits. He’s trying to come to terms with what is happening, and he’s struggling. We find it hard, but he seems to be finding it even more difficult. I mean, seriously, who can blame him? Why should he have to accept this as his new normal? When he’d rather be doing what every other kid at school is doing.

One day, he will no longer be here with us. And we will be forced to accept that as our new normal. And that will make all those other “new normals” that I have had to deal with an absolute walk in the park. That’s a “normal” that no parent should ever have to come to terms with.

Because it’s just not normal. IT’S NOT FUCKING NORMAL.

  • Connie - Thank you for sharing. May his story, and your story, help others! Sounds like your son is blessed to have a mom like you! Please say “Hi!” to him from Minnesota, in the USA. I hope the best for him and your family. 🙂ReplyCancel

  • Anon - My son has Duchenne too. It’s awful. No better word to describe it. Just awful.ReplyCancel

  • Robin - This just breaks my heart! I think about you and your family often. I know there is nothing I can say, but just know that you are in my thoughts.ReplyCancel

  • Jeannette - Thank you for writing this. It is so true, and the story of every parent who has a boy with Duchenne. Our son is 27 years old now. One year ago he got his trachea tube. He’s doing well, but life is so difficult. And so sad, although we try to enjoy life as much as possible, there is always, always that dark cloud. So many painful things happened, like you mentioned that your child isn’t invited anymore…can’t help himself at the toilet…a.s.o. so many “milestones”…when he couldn’t ride his bike anymore…heartbreaking moments, all etched in my heart and soul.Thank you for writing this. Hope lots of people read it.ReplyCancel

  • Anonymous - So depressing, remember your son has dmd not you !!
    Find him things he can do, forget what he can’t and let him live the life he’s been given successfully and happily…ReplyCancel

  • Kara - Sometimes I just can’t “feel” anymore. When that happens, I know I’m in the pretend world. In pretend reality, I don’t have to think about the progression of this horrible disease. I can act like our life now is what our life will be. Except that it won’t. Sometimes I don’t have the feelings. Other times I don’t have the words. Thank you for sharing your words. I hope you don’t mind; I’m going to link to this post on my blog/fb page.ReplyCancel

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