I have been trying to figure out a way to explain what it is like for a child of a parent with Myositis. It hasn’t exactly been easy. We, as children, do not deal with the day-to-day struggles many times. In my case, my dad, who has IBM (Inclusion Body Myositis), has a wonderful caregiver in my step-mom. Luckily, she is a very analytical person. If something is no longer working for my dad’s day-to-day living, she will figure out a way to make things work. She is nuts-and-bolts, she is a number cruncher, and she is a fixer. Now, I am not saying that she is not a feeler, because she is, she is very loving, caring and honestly, my best friend. But, when something goes wrong, it is “How are we going to fix this?” not, “Oh, woe is me, what do we do now?” This is one of the things I love about her and I believe has been such a success in her caregiving for my dad.

Growing up as the only girl out of my siblings, my dad was my first love. There was no one that I put above him. He was larger than life.

I, on the other hand, am a feeler, sometimes a little too much. Am I a problem fixer, sure, but I tend to dwell on the emotions before rolling up my sleeves and diving in to fix a problem. This is where the title of this article comes in . . . “This is our life now….”

I live about an hour and a half away from my parents and I try to make it out to see them as much as I can with my work schedule and other day-to-day adult responsibilities. I don’t go to my parent’s with the intention of doing my laundry, but it sometimes happens because I get to spend time with them, which I enjoy so much. But, sometimes those visits can get into my feelings and honestly, can get depressing.

See, growing up as the only girl out of my siblings, my dad was my first love. There was no one that I put above him. He was larger than life. Really. I’m not kidding. My dad is six feet five inches. He spent his days off from work working in the yard, doing things around the house, the usual ‘dad’ stuff. He built things, he had a pilot’s license, he scuba dived, played golf, went fishing, took us on wonderful vacations, and worked a lot to make sure that we had everything we needed, maybe not always what we wanted, but we always had what we needed. We always had a wonderful Christmas, great holidays; I was very lucky as a child to have my parents.

See, what I had to learn is that . . . this is our life now.

Sometimes, as I sit there on my parent’s couch, in their beautiful home, I will look over at my dad sitting in his wheelchair and a wave of sadness will wash over me. I will watch him struggling to eat, even with his arm extension, I will watch him concentrate on lifting a spoon to his mouth, almost like a child learning to eat for the first time. I will watch him trying to fix something on his phone, the slow and steadiness of that small gesture . . . and that sadness sets in.

I go to their K.I.T meeting and events with them often, I go to the conferences when I can, go to veterans activities, maybe not as much as I would like, but I try to spend as much time with him as possible. These outings, as I watch my dad interacting with people, also make me sad sometimes. My parents always had an active social life. They had a lot of friends and my dad would be the life of the party, so to speak. But, things change. With my dad being in a wheelchair, not able to do the things that he was once able to do, friends can become fleeting. My dad is not able to go to the places that they once went and do the things that they once were able to do. So the invites start to die off. This doesn’t make their friends bad people, I know most of them and they are wonderful people, but it does take a lot of planning to do anything and go anywhere when you have a big power chair and a service dog. I do not fault these people at all, though it does make me sad. A lot of things make me sad. But, this is our life now . . . not only my dad’s life, not only my step-mom’s life, but my life, my children’s lives, my brothers, aunts, uncles, and the grandkids lives.

Thing is my parent’s don’t seem to let it affect them too much. I sometimes think that it affects me more than them because I knew my dad before. I remember the day that I realized that something was wrong. I remember crying. I still lived in Virginia, my parents in Florida. They came to visit my kids and me and we were staying at a hotel not too far from my home. The kids and I went over there to enjoy some time hanging out and swimming in the pool. Their room was on the second floor and I remember standing at the bottom of the stairs watching my dad struggle to get up them; the thing is that it was over 10 years ago. I watched my dad go from struggling to walk, to using a walker, to using a scooter and finally the wheelchair.

I had to retrain my brain to look past that chair, to look past the service dog, to look past the fact my dad can no longer tend to himself and just see my dad again; to see that man that I looked up to when growing up.

What do you do when your hero, the love of your life, the man that always picks you up when you fall, can no longer do those things? Well, trust me, they never stop, nothing will stop them from still being your hero. No matter what is going on in their lives, my parents are still there for me. I do not know what I would do without their support, their love, and their encouragement. When I feel like I just cannot go on, my dad is still there to pick me up, brush me off and tell me that he loves me and is proud of me.

See, what I had to learn is that . . . this is our life now. I realized that I was being sad for the man that I once knew, not the man that I am learning about all over again, and he is just as amazing. He and my step-mom still travel, they go to the theatre, they go to their veterans activities, they help others learn about their VA benefits, they help others with myositis learn that your life is not over with your diagnosis, that it is just beginning but in a different way. It is not a death sentence.

Watching them just go through day-to-day things, they are like a well-oiled machine . . . sometimes. There is usually some humor watching the chaos and whirlwind of activities that are involved in just getting out of the house to go anywhere, and it is usually a big production, especially when you add in a service dog, a grandkid and myself. My dad jokes he has a staff, but he really does and I think he likes that.

Now, instead of sitting back and watching my dad and letting that sadness fill me, I sit and quietly watch him out talking to people, laughing, telling his terrible stories that I have heard a hundred times over but will still continue to listen because they are his stories and I will tell them to my children, my grandchildren a hundred times over. I sit and I am proud.

I knew that they were active in certain things and I have always been proud of the way they have handled this life now, how much grace, how much perseverance they have. I love how they are always willing to help others with advice and assistance.

So, then I went to my first conference in Orlando. I was so humbled by the people I met, but the one thing that has always stuck out was the fact that these complete strangers, people that had never met my parents in person were telling me how my parents were an inspiration to them. How they read things, watched my parents, see that they are still travelling, active, helping and they are inspired to not let their disease stop their living. See, I look at my parents and they are…my parents. These people looked at my parents and saw…heroes. This was humbling to me. If they can be heroes to others, they can still be heroes to me.

But, it’s still not easy. It is hard having a parent that has myositis in any form. It is hard watching how they have had to live their life and now change. I haven’t had to stay strong for my parents, even though I try to be; they have stayed the rock in my life, even when everything in their lives was changing drastically. As children of a parent with this disease, we want to make everything better for them because that is what they did for us our whole lives. I would love to say that they have taken these changes in stride, but I know that there were times when they were stressed, wondering what they were going to do, how they were going to handle this and all the changes. But, they got through it. They adapted, all of us adapt. I may not be able to get a huge hug from my dad anymore, but I still get my hugs, I still get my kisses. I still love my dad, no matter what. At one time I would look at my dad and see…my dad in a wheelchair . . . (OMG, I just totally started crying) . . . I had to retrain my brain to look past that chair, to look past the service dog, to look past the fact my dad can no longer tend to himself and just see my dad again; to see that man that I looked up to when growing up. To see that man that was my first love. Just see my dad. I want everyone to just see my dad. To see the amazing man that he is, to see what a huge heart he has, his sense of humor, everything that for my whole life I have seen. The man that, the first day he was going to teach me how to drive came out of our garage wearing a football helmet. The man that taught me how to change a flat tire so I didn’t have to depend on a man to do it for me. The man, no matter how much I have screwed up in my life, that has always, no matter what, loved me unconditionally.

That is what we all want. You have to retrain yourself how you now see your parent. You have to look past those horrible things that make up their disease and just see your parent. Because, at the end of the day, they are still that same person and . . . this is your life now.

What do you do when your hero, the love of your life, the man that always picks you up when you fall, can no longer do those things?

Don’t feel sad for them, just keep feeling and showing them love because no matter what, that love never dies, myositis does not change the way you love your parent. It should not change the way you look at your parent. I had to learn that, sometimes the hard way. They don’t need you to make it all better because you can’t. You can’t make it all go away. All you can do is help them adapt to the changes, keep loving them and always keep seeing them as your hero because that is what they are, every minute of every hour of every day. Don’t let it make you sad, because like I said, I was feeling sad for the ‘old’ dad. He is still the same dad, just not able to do the physical things he once did.

So, this is your life now . . . Be supportive. Be loving. Be patient. Everything your parent has always been with you as you grew up. Enjoy your time with your parent. Keep laughing. When you look at them smile knowing that they are still the same person they have always been and that is never going to change. Don’t let them get down about their life now. Take them out, go for a walk, spend time just talking with them. Show them that this is not getting you down. Do your research, go to support meetings with them, go to the conference if you can, join as many support groups as you can.

Because, at the end of the day . . . This is your life now.

Author: H. Lesoine

Like it? Share with your friends!

Myositis Support

This is the official #MyositisLIFE account of Myositis Support and Understanding Association (MSU),  a patient-led, patient-centered, all-volunteer 501(c)(3) nonprofit organization founded by myositis patients for myositis patients and caregivers.

MSU is Empowering the Myositis Community through education, support, advocacy, clinical trial matching, financial assistance, and access to research. We are working to improve the day to day lives of myositis patients and their caregivers. Learn more about MSU and myositis by visiting our comprehensive myositis website at Understandingmyositis.org.

As a nonprofit organization, MSU relies on donations in order to provide crucial programs and services to the community. If you are able, make a donation of any amount today.

Tip: When shopping Amazon.com, add a "Smile" first and raise money for MSU at no cost to you. Visit Smile.Amazon.com and choose Myositis Support and Understanding as your nonprofit, or use this link: http://smile.amazon.com/ch/47-4570748.