I will always love you for better or worse, in sickness and in health for as long as we both shall live, these vows were exchange on our wedding day and they are tested every day.
So far you have heard my story in my words, now you get to hear it from my husband’s side. As it’s not only me that’s haunted by my illness and who must live with it. After 10 years together and the fact we celebrated our 4th wedding anniversary in May it only felt right that now you get to hear my husband’s side, The PJ edition. We both sat down to type this up for my blog and I must admit it wasn’t an easy write as we were both trying to protect one another feelings, but to keep this blog as authentic as real as possible we were as truthful as we could be with our feelings. There definitely was a few tears shed by me along the way as I had to listen to my husband speak about his experience of living with a me the wife who is ill. PJ’s side of living his life with a wife who has Muscular Dystrophy!
When I first met Siobhan she was sitting at the bar with some family and friends and of course I immediately spotted her. As we got chatting, I was taken in by her and curious to find out more, so I kept going back to the bar to order drinks just so I had an excuse to speak to her. Siobhan sat at the bar with the cheekiest smirk on her face, with a smart-ass mouth and a sparkle in her eyes that I knew straight away this woman would be fun, so I made it my mission that night to try win her over. The fact she wouldn’t even let me buy her a drink in the beginning was probably what attracted her to me even more. Siobhan only agreed to a drink if she could buy round for round as she said that way at the end of the night, she didn’t owe me anything. Siobhan insisted that if she was able to drink it, she could buy it as well. The more I spoke to her that night the more she impressed me and left me wanting to know more.
Well, the challenge was accepted and now years later I get to call her, my wife. Being with Siobhan was a whirlwind romance within a couple of months of meeting one another we were living together in Canada. A year later she got Breast Cancer. The hardest thing to watch was when the cancer came back for the second time, as that really broke her and was hard for her to accept, she had to go fight it again. I honestly thought then that I’d lose her. Even back then she showed her strength, and she told me to walk away, when she got the news, that it wasn’t what I signed up for when we first started going out together. When I refused only then did, she let me in to help her fight it. I did struggle with her illness and at times the fear of losing her did scare me. It was a crazy couple of years with the cancer diagnosis and all the treatments, that I didn’t really think about the muscular dystrophy that she had previously told me about, as we said we would fight one battle at a time. Siobhan from day one never hid the fact she wasn’t well that she had Muscular Dystrophy. In the beginning apart from the scars on her legs and a limp that appeared when she was tired, you’d never off known she was sick. We just never imagined her getting Breast cancer and having to fight it twice at such a young age on top of her Muscular dystrophy diagnosis.
The hardest thing watching someone you love fight illness is seeing them in pain and trying to stay strong for both of us. Siobhan is small in stature but she’s feisty and one of the most stubborn women I have ever met and is very good at hiding and pretending she’s ok. The only time she’ll really drop her guard is after a few drinks as it is harder for her to control her emotions, only then you get to see the true vulnerable version of her. I know she cries in the shower, even though sometimes she tries to blame that shampoo got in her eyes, and I hear her awake in the middle of night journaling her thoughts as she thinks about what our future will be. Sometimes I do bear the brunt of her frustrations especially when she’s having a bad day, but I know she loves me and it’s not the real Siobhan talking it’s the frustrated version of her that’s struggling with the pain, who is trying to come to terms with the fact her body is letting her down more and more every day. Siobhan is an over thinker; she over analyses everything and is now so used to bad things happening to her she automatically now thinks and expects the worst.
Everything I do is for Siobhan. I work hard to provide for us both to ensure she wants for nothing. I love nothing more than putting a smile on her face and making her laugh. I also am here to wipe away her tears and hold her tight when she needs it. I can’t tell her everything will be ok, but what I can do is tell her is that I’m by her side and we will face the future together as husband and wife. So far, we have been lucky and not every day is a bad day and Siobhan still has a good quality of life, it’s just not that of a regular healthy and fit 41-year-old. We both know
how lucky we are to be able to still go away on holidays and see the world together.
We recently went on holidays to Norway, but now we know and are accepting that our travel situation is different. It’s at a slower pace with less activities as we must be careful about not tiring her out and to make sure everywhere we go has good accessibility. I also am very aware that Siobhan sometimes can get upset and frustrated at not being able to do certain things anymore as her body simply won’t allow her to do it. It’s the simple things you and I do that we take for granted daily without even thinking about like steps, stairs that she now must put extreme effort into for her body to response to her demands. I know she feels guilty about me having to make sacrifices and she hates to think she’s preventing me from doing stuff. I am more than happy to be with her and once I get a couple rounds of golf in at the weekend then I am happy, golf is my outlet its my break away from what is our reality. Siobhan insists I go out and get this time to myself to go out with the lads to just I suppose unwind and destress. We have learnt its all about compromise and giving one another space to breath and accept what is happening. I don’t think either of us will ever fully accept the difficult hand Siobhan has been dealt in terms of her health as sometimes you’d wonder why someone must suffer so much in this life. To have to deal with one illness after another with no let up, honestly sometimes I just look at her in awe and wonder how she does it and keeps going.
To people on the outside looking in it may seem like living with and caring for Siobhan is hard work but honestly you couldn’t find a more genuine kind-hearted and caring person providing she likes you because if she doesn’t, she won’t pretend. Siobhan’s slogan has always been I have enough real friends, that I don’t feel the need to entertain fake ones and waste her energy or time on them. This is one of the reasons I love her so much she is genuine what you see is what you get, sometimes it can be more then what people can handle but at least you will always know where you stand with her. I heard a friend recently describe her as a Cactus and we both laughed when we heard Ruairi say that she is “prickly on the outside and soft on the inside” and it’s probably the best description to date that I have heard to describe her.
What are my worries?
I do worry about our future, it’s hard not to. Our grief is ongoing, we are confused by our future. I know daily she is in some sort of physical pain and there is nothing I can do to help her. I face the possibility of maybe one day having to give up work to look after her and I do worry about the financial strain that may cause. Siobhan is super protective of me, her family and friends so I also do worry about how much of the load she chooses to carry by herself. Siobhan has a tough exterior, but I know how vulnerable she can be on the bad days, and these are the days that are the hardest as I feel helpless. At present all my energy is going into planning how we will remodel our home. It needs to be made wheelchair accessible and be ready for her when that time comes. I have now learnt to take each day as it comes and try not to think beyond that as she’s my whole world. We both have struggled privately and done and said things we regret but we have moved on forgiven one another for our mistakes and made peace for what has happen in the past as no one is perfect, and life is hard, and it has its challenges.
Now, it’s about enjoying our life together, making memories, continuing to travel and work together for as long as she is able. It’s just me and her against the world, we are a team and I’m proud to call her my wife as she is my biggest supporter and always has my back hence why I continue and will always have hers.
Patrick McBarron – The Husband
Until next time,
Siobhan Malone McBarron xo