Tuesday, 21 February 2017

Paralysis: 2 years later

I'm going to start off this post with a bit of a disclaimer. It's raw, emotional, and difficult. It's about paralysis and how I have been coping. It's a struggle to portray my thoughts coherently so please bear with me. 


Coping with paralysis: 2 years later by Welcome to Mommyhood #paralysis #wheelchair

On March 15, it will be two years. Two years since I walked. Since I was able to run and play with my son. I've been grieving that a lot lately. The day before I was injured, my husband and I took our then two and a half year old son on a walk with one of his outdoor cars, the kind you can sit on. 

We took turns pushing him, and even though it was such an uncomfortable position to kneel down, I remember, we just had such a beautiful time together. It's a memory I'll always cherish because it was the last time I was able to run with him. The last time I could kneel down to his level so easily. 

It's all those future moments like that that we could have had that I am the most angry about. That I struggle with the most. I will never be able to go down a slide with Natasha like I was able to do with Yvann. My injury didn't just change my life, but it forever altered the lives of my children. 

I feel like I robbed my children of something simply by being their mother. That's a crushing feeling to to deal with. That grief for the type of mother I thought I would be, the type of mother I wish so desperately I could be. I wish I could say, it's been two years, I've coped, I've adjusted, but there are still difficult days where the grief and frustration surface again. 

To be honest, most days are good. There are many days where I don't think about it. I don't think about the changes that have taken place in my body, I don't compare myself to other parents, to other people. 

And then there are the other days. The days that feel like my world is shattering all over again. A few days ago, I felt a low I haven't felt in a very long time. Perhaps because of my pregnancy, and adjusting to life with a newborn, I haven't had much time to think about me. Until I did. And it was awful with tears and anger and screaming all directed at my husband just because he happened to be in the room with me. I guess those days, even though they are few still happen. Maybe two years isn't really all that long. It's just hard sometimes. 

I still struggle. I want to be able to say that paralysis doesn't impact my life so much, but I write these types of posts because I needed them. I still do, and it's hard to find. 

I want to be honest. In case someone you know is going through this, maybe you can have some insight (everyone has a different experience, of course), or in case you are dealing with something similar. I'm also writing it for me because I need the reflection. 


Coping with paralysis 


It has been two years. In these two years, I have forgotten what it feels like to walk. I can't imagine or fathom anymore what it felt like to move my legs. I can't remember a day without pain either really. It stays, but I've become used to it. It's like a thousand needles stabbing at my legs all day. Ironically, pain is one of the few sensations I still have in my legs. It reminds me they are still there though, so I suppose that's a positive. 

There's always medications, of course. However, I'm nursing baby Natasha and many wouldn't be safe for pregnancy or nursing. I was prescribed something very strong before, but the medications left me feeling drunk and that's not an option with little children at home. It's also not the way I want to live my life - in a drunk state, barely able to string together a coherent sentence. 

So I accept the pain and try to bite through it. I try to rest when I can, but the best way I know to deal with it is to distract myself with all of the beautiful things I do have in my life. I keep myself busy all day with my children, with household tasks when I can do them, with this blog. 

One of my biggest challenges has been losing the safety I feel in being able to go places because they are not made accessible for a wheelchair. I like to be independent and do everything I need or want to do easily. Our home is the only place I can do that. It is a sanctuary for me. Everything here is set up for ease of use for me. My husband is brilliant and has designed our home in a way so that I can function in it with our children. 
Coping with paralysis: 2 years later by Welcome to Mommyhood #paralysis #wheelchair

The kitchen is low, the washing machine is at my level, the outlets are all placed at my height (meaning Natasha cannot reach them when she starts crawling/walking), the hallways are wide enough for me to pass, and everything I need is placed low. Even our bathrooms have two sinks - one for my husband and one for the kids and me. 

That's a nice consequence of my injury - our house needs to be modified so everything is low for me. That also means it is low for the children, which fits with our love of Montessori and encouraging independence in the children, such as a low sink that they can reach easier. Our house is still being renovated though, so we aren't quite done with everything, but once it is finished, I will show you a house tour. 

These modifications have been so important for me. The ability to function so easily in my home is one of the reasons I have been coping so well on most days. I have been able to carry out simple tasks like cooking and doing laundry because everything is accessible for me. We have a lovely ramp leading up to our front door that I can use with ease. Our toilets are the exact height of my wheelchair. 

With our home set up in this way, I can feel confident again, feel like a wife and a mother. I feel like I have a purpose and can contribute to my home because I can manage it and take care of daily tasks with relative ease. When I was first in the hospital, recovering, and home, I was unable to care for myself or my family. 

Coping with paralysis: 2 years later by Welcome to Mommyhood #paralysis #wheelchair
I suppose here is where I can offer a little bit of advice if you know someone who is struggling with a health problem. It is so important to ask. I wrote about this a bit in a post about respecting our children and the importance of being able to struggle through a task. Ask before helping them with a task even if it seems like they are struggling through it. Ask if there is something you can do to help. 

Even though I have learned to adjust to using my wheelchair, to function from it, I still find that other people feel that it is okay to take over tasks for me. I find that unacceptable. Even if others are well intentioned, there really is no circumstance where I will find it appropriate for someone to push my wheelchair without asking me if I am okay with it. And almost always I will ask for others not to push me. My wheelchair replaced my legs in it's functionality, it represents a part of my body and I don't like people just touching it, or just moving me like a piece of furniture. It may not be the intention, but that's definitely a feeling that is conveyed if I am moved without consent. 

I will never find it appropriate for someone to take over a task I am completing with my child for me. For instance, if I am helping my son get his shoes on, I do not need nor want for someone to come over to help him for me, even if it is easier for someone else to do. That's fine. My child and I will figure it out together. I need to feel capable by doing these things myself and I need my child to see me as such, as well. 

I'm using I in these cases because I don't know what other people feel in these circumstances, but for me, I desperately cling on to my independence. I need to feel competent and when other people take over for me, that's degrading. Luckily, this does not happen very often, and a kind reminder will end the interference. 

All in all, the past two years have been a whirlwind. The first year, I struggled with the consequences and physically recovering from my injury. The second year? It flew by! I had just found out I was pregnant at the one year mark and was so overjoyed and so distracted, I didn't give it too much thought. I think that is one of the reasons why I am struggling more with it now. 

Aside from the emotional difficulties, there are physical challenges I face daily. I don't mind those so much, I can deal with them. I'm a very goal oriented, task oriented person. If I need to figure out how to do something, I am quite good at figuring out how to do it. That's how I try to think about life now - how can I do what I want to do. It's been a very effective coping strategy. Otherwise, I fear I would have been so limited and overwhelmed by everything that I can no longer do. Instead, my husband and I figured out how I could do them.  

The emotional recovery has been more crushing. I'm not really sure how to deal with it other than keeping myself busy and thinking about the positive aspects of my life. The thing is, this injury has forever changed how I see myself, not just as a mother but as a woman. I struggle to feel beautiful. It's just hard sometimes. 

I don't really like to talk about it with too many people. I don't want the pity. I like to feel strong. I like to feel like I can take on the day. 

In spite of the challenges I face, I really can't say that I have all that much to complain about in life at this point. There are emotional hurdles and physical hurdles, of course, but my injury has taught me to appreciate the beauty of what I do have. 

My body, as broken as it is, still managed to grow and birth a healthy baby after becoming so badly damaged. I have two beautiful children, a loving husband who wipes away my tears, supports me and patiently helps me to accomplish the things I want or need to achieve, and we have a lovely home. Those things are all already so much more than what other people have, and I know now more than ever not to take them for granted. 

Coping with paralysis: 2 years later by Welcome to Mommyhood #paralysis #wheelchair

Family and the moments we have with them are precious. When I was injured, my life was changed forever, and I know that my injury could have been far more severe. I know not to take my life for granted, and I know I need to appreciate the people in it, as well. You never know what tomorrow will bring, and what is more important than our families? Then enjoying the time we have with people that we love? And trying to find the joy in every day? 

These days, I am trying to get pleasure from simple tasks. I like to cook and I am happy when I can do that. Today, my son helped me to cook dinner. He cut up all of the mushrooms, unevenly and perfectly. We turned on the radio and he started humming along as he chopped. Being able to experience those moments reminds me how perfect my life really is, even if my legs don't function as they should, even with the pain. I didn't need my legs to teach my son how to cook a delicious home cooked meal.  
The struggles I face will be with me for the rest of my life, I know that. However, there are beautiful moments that make it better. While it's hard to say that I have truly managed to work through everything, I am coping. 

I am able to hold on to the moments that are more important than being able to walk, moments such as when my four year old runs up to me and whispers in my ear that he loves me. Moments when my baby looks at me and smiles. Moments when my husband surprises with a bouquet of roses. When we all cuddle up on the couch for a netflix session with popcorn and warm blankets. In those precious times, whether my legs work or not doesn't matter. What matters is that I can see beyond my injury and enjoy the things I love. 

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Today, I am linking up at:  A little bird told me, Preschool and kindergarten community, Tot school Gathering PlaceThe Thoughtful SpotLove to Learn LinkyThe Mommy Club Resources and SolutionsLink and Learn, TGIFHip Homeschool MomsPractical Mondays