It's been a while and I'm not sure why. I do feel that I have things to say I just don't sit down and write them. But because this is supposed to be a bit of a timeline with how I am really doing I just wanted to do a quick, or maybe not so quick, update on my physical and mental condition.
So I've decided that the progress of my disease is very much like a plateau. For quite a while things can be quite stable and I don't notice any real progression. Then, all of a sudden, it's like I fall off that plateau and things get worse. I then stay that way for a while until the fall off of the current plateau. A lot of people have asked and so I may as well tell you that once I fall off that plateau, or feel an new level of weakness, I never regain that which is lost.
Lately, I have felt a fall off my plateau. Maybe if I was paying more attention I could figure out how long I have in between bouts of progressive weakness but it just seems to creep up on me. All of a sudden I think, "that is getting a lot harder" or "I used to be able to do that myself." And when you are just living life it takes a little bit to realize that something has changed.
So here's where I'm at physically. I have been noticing symptoms for 7 1/2 years now. At this point pretty well everything is hard! Haha! But really. Where do I start? I have been using a cane to walk for the past while. At first, it was more for peace of mind. I was scared of falling and for some reason I felt that the cane made that less likely. Although, I've found that to not be the case! Now, I would hardly want to walk anywhere, more than just around my house, without the cane. If there is the littlest bit of incline I will probably fall going up it. Even with the cane, the most I can walk is probably into a store like Wal-Mart. Without holding onto a cart for support I would not be able to walk past the front doors. To illustrate how weak I'm getting, just walking around my house takes me quite a while. To walk from one room to the next is slow. I can't really carry anything of substantial weight while I'm walking. Getting up off of a chair by myself is not at all ladylike. I fear that soon it will be impossible without help. There is one chair in my living room that is fairly easy for me to get off of right now. The couch and the other chair take so much effort and sometimes, depending on how the day has gone, it probably won't happen. It definitely makes it hard when you've finally sat down and all of a sudden one of your kids needs something, or the phone rings, or you want to change channels on the television but it's just out of reach. Hopefully you get the picture. So what does this mean for me?
I don't have a lot of motivation to even leave my house. Every step is hard and takes a lot of energy. I do have an electric wheelchair, which I'm so thankful for, but there's no such thing as just popping into a store anymore. It's quite the production! Every time I am invited anywhere I have to wonder what the accessibility will be like. I can do a couple of stairs but if they don't have a railing then there's no way. Some people's houses don't have railings!! Walking into the movies is not really an option anymore. I have to ride my wheelchair. Same goes for most restaurants. If I can park right at the door then I'm okay but normally the walk from the car to the table is bordering on too far. I don't want to clean my house. Picking something up that belongs in another room seems like an exhausting and daunting task. To summarize, it makes me feel lazy and anti-social. I do want to go out and I do want to have a clean house, but to do so means that by the end of the night I am exhausted.
My upper body is also weakening. I do fine if I'm really only using my biceps. I can open jars or lift things, strictly with my arms, but anything over my head is pretty much impossible. This means that my hair is probably never going to be in a cute braid anymore. I really like having my bangs pinned back on top of my head. The last time I went to do this, I had to support my left arm on the wall while I tried, in vain, to get it looking okay. If it doesn't look good the first time, it isn't going to happen. My left arm is much weaker than my right, which is interesting because I'm left handed. Do you know how much happens with your left arm?! Going through drive-thrus I have to make sure that I'm pulled right close so that when they hand me things, my arm can reach out. I can't even extend my left arm all the way out because it's too heavy to hold up. Drive thru ATMs are terrible! You have to use your left arm and have it extended for so long because of all the questions they ask and all of the buttons that you have to push! Not my favorite thing right now! So anything higher than my waist that I have to reach for or lift is a bit of a challenge.
One other thing, that was really significant for me, is that I need a pillow, or a blanket rolled up under the covers at the end of my bed. Anyone reading this will automatically think of my mom. For as long as I can remember she needed a pillow or something at the end of the bed. The reason, is that the covers are too heavy to be pushing on my feet. I don't have the muscles needed to pull my toes up towards my legs. So I have nothing fighting the pressure of the blankets. It bothers my ankles and my toes. I fought putting a pillow at the end of my bed for a long time. There was something psychological about it. I was now at the point where I was bad enough, like my mom was, that I needed to pillow there. It's hard to explain. It's not that I don't want to be like my mom, but I think it maybe symbolized the progression. Without physical things there, confirming the decline, I could pretend like everything was status quo. But all of a sudden, there are physical reminders. I love my mom, and my grandpa. There is a feeling of a club that only the three of us are members of. It would be nice if the other two members were here, on the earth, so that I could talk to them, but I do like to think that maybe they get to help me more than others because we have this connection. But because of this connection, there is a lot of comparison that I do with my mom. I look at myself using the electric wheelchair more often, or a cane so early, and the thoughts that go through my mind are that I'm progressing faster than mom did. I have thoughts like, "mom was still three years away from needing this" or "mom didn't need help with that until she was this age." It's hard not to compare. My mom's life was cut short. Because of this disease, she died. That is what I'm facing. I'm not scared of it. I'm not scared that it's progressing but the reminder is there every time I fall or every time I get up out of a chair. I know that a lot of people wonder, but are scared to ask, how I really feel about having the disease, with the possibility of a shortened life span but that's a whole other can of worms! I will talk about it. Not in this post, because it will probably take me a while to write, but if it was the other way around, I would be curious too. So I will share how I really feel about it. Until then, I am living with how I am today and am grateful for the things that I'm still able to do. One day, those things will be taken away too, but for today, I am grateful. And I am truly grateful for the lessons that I've learned along the way.
Tuesday, 4 March 2014
Monday, 13 January 2014
Before and After
I've been thinking a lot lately about life changing events that people have in their lives. For me, the most individual life changing event was the passing of my mom. It seems like life changes into two sections, before and after. It really has been like living two different lives. A lot of the people are still the same, but in one instant your life changes and it never returns to the previous normal. And the interesting part is that this event has had profound impact on your life but everything and everyone else is continuing on as if nothing ever happened.
I remember the day my mom passed away I wondered, shouldn't it a least be raining or something? Where are all of these people that are driving on the road going? Are they still going to work? Don't they know that something huge has happened? Why are stores still open? Why are people still going to the movies and doing things that they would have done on a normal day. For all of those people, it was a normal day. For me, it was the day that changed my life into before and after.
I feel, for me anyway, that there is a mourning that you go through for the person. You are going to miss that person so much. But there was also a surprising mourning that I had, and still have, to go through for the life that was before. Life will never return to the "normal" that I knew before. And lately, I've been thinking about letting go of that mourning.
I've become good friends with someone lately who has gone through major life changing challenges. I can't even describe the impact that this person's perseverance has had on my life. And I found it interesting, as this idea of before and after has been on my mind lately, that she would share an article on Facebook that discusses this exact idea. It is an article written by Elder Holland, a leader in my church. Here is one of my favorite quotes from this article:
"As a new year begins and we try to benefit from a proper view of what has gone before, I plead with you not to dwell on days now gone nor to yearn vainly for yesterdays, however good those yesterdays may have been. The past is to be learned from but not lived in. We look back to claim the embers from glowing experiences but not the ashes. And when we have learned what we need to learn and have brought with us the best that we have experienced, then we look ahead and remember that faith is always pointed toward the future. Faith always has to do with blessings and truths and events that will yet be efficacious in our lives."
I realize that I have fallen into the trap a bit of longing for the past. That life seemed so much easier. I also found myself mourning for other people as they went through "before and after" events, as I have started to refer to them. People around me who lost a parent, a spouse, a child, suffered through divorce, had parents going through divorce, debilitating sickness. I would mourn for how young some of these people were going through these events. I counted myself lucky to have lived in a naive view of the world with no hugely significant challenges for so long and these poor kids had to have that taken away so early. My heart ached for their before and after. I was also worried about what events the future would hold for me, or my children, that would once again change lives. It's no way to live.
This same friend of mine got up recently in sacrament meeting and shared that although she would love to have her husband back, she is grateful for going through what she has gone through. It was an amazing experience because that was the testimony that was in my heart that day. I am grateful for what I've gone through. I'm grateful for the person that I have become because of all of my trials. Honestly, I am not even close to perfect. I am not even close to the person I need to be. I miss my mom. I still shed tears that she is not with me. I still get angry and frustrated that my body doesn't work the way I would like it to. And I can say, that if there were a cure for my disease, I would jump up and down, but I am grateful for what these experiences have taught me. I am grateful to know that the best is yet to come!
I remember the day my mom passed away I wondered, shouldn't it a least be raining or something? Where are all of these people that are driving on the road going? Are they still going to work? Don't they know that something huge has happened? Why are stores still open? Why are people still going to the movies and doing things that they would have done on a normal day. For all of those people, it was a normal day. For me, it was the day that changed my life into before and after.
I feel, for me anyway, that there is a mourning that you go through for the person. You are going to miss that person so much. But there was also a surprising mourning that I had, and still have, to go through for the life that was before. Life will never return to the "normal" that I knew before. And lately, I've been thinking about letting go of that mourning.
I've become good friends with someone lately who has gone through major life changing challenges. I can't even describe the impact that this person's perseverance has had on my life. And I found it interesting, as this idea of before and after has been on my mind lately, that she would share an article on Facebook that discusses this exact idea. It is an article written by Elder Holland, a leader in my church. Here is one of my favorite quotes from this article:
"As a new year begins and we try to benefit from a proper view of what has gone before, I plead with you not to dwell on days now gone nor to yearn vainly for yesterdays, however good those yesterdays may have been. The past is to be learned from but not lived in. We look back to claim the embers from glowing experiences but not the ashes. And when we have learned what we need to learn and have brought with us the best that we have experienced, then we look ahead and remember that faith is always pointed toward the future. Faith always has to do with blessings and truths and events that will yet be efficacious in our lives."
I realize that I have fallen into the trap a bit of longing for the past. That life seemed so much easier. I also found myself mourning for other people as they went through "before and after" events, as I have started to refer to them. People around me who lost a parent, a spouse, a child, suffered through divorce, had parents going through divorce, debilitating sickness. I would mourn for how young some of these people were going through these events. I counted myself lucky to have lived in a naive view of the world with no hugely significant challenges for so long and these poor kids had to have that taken away so early. My heart ached for their before and after. I was also worried about what events the future would hold for me, or my children, that would once again change lives. It's no way to live.
This same friend of mine got up recently in sacrament meeting and shared that although she would love to have her husband back, she is grateful for going through what she has gone through. It was an amazing experience because that was the testimony that was in my heart that day. I am grateful for what I've gone through. I'm grateful for the person that I have become because of all of my trials. Honestly, I am not even close to perfect. I am not even close to the person I need to be. I miss my mom. I still shed tears that she is not with me. I still get angry and frustrated that my body doesn't work the way I would like it to. And I can say, that if there were a cure for my disease, I would jump up and down, but I am grateful for what these experiences have taught me. I am grateful to know that the best is yet to come!
Thursday, 12 December 2013
Vacation
It's been a little while. It's been long enough that I feel the pressure to write something even though I'm not sure what to write. I can say that it has been so long because of a fabulous trip that I took to Hawaii! It was heaven. It did preoccupy my thoughts for about two weeks as I had to get prepared and then go, and then come back and get back into life. But, it was fabulous! So as I thought about what I would want to share, it came down to me wanting to share how traveling and vacationing is for me, with muscular dystrophy. I want to show you how much this disease consumes my mind doing something that others may take for granted. This is not to make anyone feel guilty but is just to show the facts that this is how much I am reminded of this disease.
We stayed at the hotel at the airport the night before we flew out and this is where the holiday began. It actually began the moment we left our driveway because we were going without our kids. Anyone with kids knows that even going to the bathroom without anyone with you is a bit of a vacation in itself. So as excited as we were to get to Hawaii, we were, sadly, equally as thrilled to drive the two hours to Calgary without kids. Back to the hotel. We asked for a handicap accessible room, but since there were four of us staying in one room that wasn't an option. They don't have any rooms with two queen size beds that is handicap accessible. At this point, it is really not that big of a deal except for the bathroom. If a toilet is too low or there is no counter or bar to help me get up, there's no getting off that toilet. I can still get into most bathtub showers but there has to be a towel bar or something close that I can hold to steady myself as I heave my leg over the edge of the tub. Luckily, the bathroom worked out fine. Next comes the beds. I have to be on the left side of the bed because I mostly sleep on my left side and in order to be able to turn onto my left side I have to be able to use the side of the bed. I am not strong enough to roll over or to sit up on my own without grabbing on to something.
I want to pause here for one moment, because this is sounding really depressing and whiny. That is not what I'm wanting it to do. These obstacles are small. In between these struggles are amazing times with my husband and other family. I am just pointing these out mostly for history, to show what life was like for me at this point.
We woke early in the morning to catch our flight. We rented a wheelchair so that getting around would be possible. Traveling this time was made so much easier by having my sister, Natalie, and her husband Dave traveling with us. Natalie was able to push me in the wheelchair and the men wheeled our luggage through the airport. My first challenge doesn't usually come until security. I could just stay sitting and let them pat me down and do whatever they do when you can't go through the metal detectors, but until that is absolutely necessary I prefer to walk. So I walk through their metal detectors while the thought goes through my head, "pick up your feet. Pick up your feet. Pick up your feet." This is the last place that I would want to trip and fall. Security is over and we head to our gate. Because I'm in a wheelchair we get to pre-board. Because of new policy, one of their workers has to wheel me down to my gate. This was usually a woman who wasn't necessarily fit or young but for some reason that was safer than having Brad do it?? On top of that they insisted on wheeling me down backwards because of safety reasons. I can tell you that I would have much rathered my husband to push me down the walkway facing front, but I am grateful for their help.
When we make it down to the plane I get out of the wheelchair and walk to my seat, which often, for some reason, is at the back of the plane, while repeating my chant of "Pick up your feet. Pick up your feet." When we get to the row the next decision is where to sit. If I sit in the isle it will be easier at the end of the flight to get out, but there's a chance that someone will need to go to the bathroom during the flight and I would have to get up multiple times. So really, it's a toss up. And if it comes to me needing to go to the bathroom while on the airplane, I try to just hold it.
While in Hawaii we did such fabulous things and really enjoyed each other's company. My Aunt and Uncle offered their place for us to stay and it worked so great for me. It was so accessible and convenient. We shopped on Black Friday at WalMart. I will never ever do that again. I am not a fan of crowds or any kind of contention anyway and when you are stuck down at the height of everyone's waist lines it feels that much more claustrophobic. But we did some other great shopping, lounging, and eating. Oh the eating. Everything was really tasty.
Because I have such wonderful family our trip was a complete success. My sisters, brothers in law, and Brad pushed me or carried me everywhere that we went on that island. Without them, it wouldn't have been possible. Still, with all of their work, there are things that are no longer an option. Even though I enjoyed the site of it, I didn't actually touch the ocean. I couldn't get out and try boogie boarding or body surfing. I couldn't walk along the beach holding my husband's hand. I couldn't go down to the pool or for a walk at night unless someone would come and push me or help me in some way. So what it all comes down to, is that there is hardly an hour in a day where my limitations aren't highlighted in some way, but because of the people that I have in my life, those limitations are lessened. I don't think that Brad and I, alone, could have done this holiday quite as easily. I will forever be grateful to the family that I have that carry me, push me, or help lift me up, literally, and make my life so fabulous.
We stayed at the hotel at the airport the night before we flew out and this is where the holiday began. It actually began the moment we left our driveway because we were going without our kids. Anyone with kids knows that even going to the bathroom without anyone with you is a bit of a vacation in itself. So as excited as we were to get to Hawaii, we were, sadly, equally as thrilled to drive the two hours to Calgary without kids. Back to the hotel. We asked for a handicap accessible room, but since there were four of us staying in one room that wasn't an option. They don't have any rooms with two queen size beds that is handicap accessible. At this point, it is really not that big of a deal except for the bathroom. If a toilet is too low or there is no counter or bar to help me get up, there's no getting off that toilet. I can still get into most bathtub showers but there has to be a towel bar or something close that I can hold to steady myself as I heave my leg over the edge of the tub. Luckily, the bathroom worked out fine. Next comes the beds. I have to be on the left side of the bed because I mostly sleep on my left side and in order to be able to turn onto my left side I have to be able to use the side of the bed. I am not strong enough to roll over or to sit up on my own without grabbing on to something.
I want to pause here for one moment, because this is sounding really depressing and whiny. That is not what I'm wanting it to do. These obstacles are small. In between these struggles are amazing times with my husband and other family. I am just pointing these out mostly for history, to show what life was like for me at this point.
We woke early in the morning to catch our flight. We rented a wheelchair so that getting around would be possible. Traveling this time was made so much easier by having my sister, Natalie, and her husband Dave traveling with us. Natalie was able to push me in the wheelchair and the men wheeled our luggage through the airport. My first challenge doesn't usually come until security. I could just stay sitting and let them pat me down and do whatever they do when you can't go through the metal detectors, but until that is absolutely necessary I prefer to walk. So I walk through their metal detectors while the thought goes through my head, "pick up your feet. Pick up your feet. Pick up your feet." This is the last place that I would want to trip and fall. Security is over and we head to our gate. Because I'm in a wheelchair we get to pre-board. Because of new policy, one of their workers has to wheel me down to my gate. This was usually a woman who wasn't necessarily fit or young but for some reason that was safer than having Brad do it?? On top of that they insisted on wheeling me down backwards because of safety reasons. I can tell you that I would have much rathered my husband to push me down the walkway facing front, but I am grateful for their help.
When we make it down to the plane I get out of the wheelchair and walk to my seat, which often, for some reason, is at the back of the plane, while repeating my chant of "Pick up your feet. Pick up your feet." When we get to the row the next decision is where to sit. If I sit in the isle it will be easier at the end of the flight to get out, but there's a chance that someone will need to go to the bathroom during the flight and I would have to get up multiple times. So really, it's a toss up. And if it comes to me needing to go to the bathroom while on the airplane, I try to just hold it.
While in Hawaii we did such fabulous things and really enjoyed each other's company. My Aunt and Uncle offered their place for us to stay and it worked so great for me. It was so accessible and convenient. We shopped on Black Friday at WalMart. I will never ever do that again. I am not a fan of crowds or any kind of contention anyway and when you are stuck down at the height of everyone's waist lines it feels that much more claustrophobic. But we did some other great shopping, lounging, and eating. Oh the eating. Everything was really tasty.
Because I have such wonderful family our trip was a complete success. My sisters, brothers in law, and Brad pushed me or carried me everywhere that we went on that island. Without them, it wouldn't have been possible. Still, with all of their work, there are things that are no longer an option. Even though I enjoyed the site of it, I didn't actually touch the ocean. I couldn't get out and try boogie boarding or body surfing. I couldn't walk along the beach holding my husband's hand. I couldn't go down to the pool or for a walk at night unless someone would come and push me or help me in some way. So what it all comes down to, is that there is hardly an hour in a day where my limitations aren't highlighted in some way, but because of the people that I have in my life, those limitations are lessened. I don't think that Brad and I, alone, could have done this holiday quite as easily. I will forever be grateful to the family that I have that carry me, push me, or help lift me up, literally, and make my life so fabulous.
Wednesday, 20 November 2013
My struggle will be my Blessing
I promised that when I started this blog I would be real. I have never been one to love blogs that are all rainbows and perfection. I don't really know if people learn anything from them. When my kids read this in the future I want them to see the real me. I want them to know that it's okay to struggle with parenting. It's normal, at least I hope, to want to strangle your kids sometimes. Not everything that my kids do makes me smile and wish that I could have twenty more just to make my life that much more amazing. For some people, that may be the case, but for me, being a mom is hard work.
I have one child who pushes me to, and past, my limits. Olivia was an amazing baby. She was very content and happy. At 13 months old something clicked in her and she all of a sudden became my walking little challenge. I can remember how old she was when this change took place because I thought she must be teething. Little did I know that it was actually the sleeping monster that was waking up inside of her! Haha! But seriously. From that day forward, she has been hard for me to handle. As I said earlier, she often ran away. I've lost her, for real, about three times. Luckily nice strangers/police have found her. She spray painted my friend's very nice, white, Lexus SUV with bright pink spray paint. There is still evidence on our garbage can, the fire hydrant in front of our house and on the Stanford's license plate, if you look close. She ran back into the pool area when she was two. We were changing after we had finished swimming and she was no where to be found. She ran back to the pool, fully clothed and in her sheep skin winter coat and went down the slide and into the pool. I have often remarked that I have no idea where she came from. She is not my personality and she is not her dad's personality. She pushes us everyday. She says whatever she thinks, she is not shy in any way, she has more energy than I have ever seen in anyone, she loves to be the center of attention, she asks you to watch while she does something she knows she probably shouldn't do, and more. Most days, I honestly don't know how to handle her. Lots of people have said, "maybe she's getting it out of her system now and she's going to be the easiest teenager later?" Yeah right. Stay tuned for that update! Haha!
I do see the positives, for her, in how she is. She will never have a problem standing up for herself. She will not be pushed to do something that she doesn't want to do. Fear will never hold her back from trying anything. I was terribly shy as a child. Still, to this day, I don't like any form of confrontation and I still struggle with some social anxiety. It's not fun and she'll never have to deal with those feelings. But it's still a struggle.
As I've reflected over the past while of what I can do to handle her I've really prayed to know what to do. The answer that I've received is not what I can do for her while she's here on this earth but what she's going to do for me. It wasn't the answer that I thought. I was thinking that I had to change her somehow into a sweet, perfect, compliant little angel that girls are supposed to be, right? What I have learned is that she is going to teach me patience. I've never been a patient person. If there is something that I want to buy or some project that I want to do, I want to do it now! My lack of patience is something that I need to work on. And there is no way that her and I are both going to make it through this life, outside of prison, without me learning more patience. I am grateful to be pushed to have more patience. There is so much loveliness in patience. I yearn to be that person and I am grateful to have her so that I could see this weakness that I have and hopefully turn it into one of my greatest strengths. This idea of her teaching me patience is not my newest insight that I have had in why these certain spirits have been sent to me. That lesson I have been taught more recently and it has only happened because I have Muscular Dystrophy.
A couple of Sundays ago my girls and I were getting ready to leave church. Brad had taken Cooper home early as Cooper had a cough and had been up a lot in the night previous. It had snowed on Saturday night and so it was pretty slippery outside. Brad had been nervous about me being able to get to the van without falling and I told him that I would be fine. I came out of my classroom and headed for the door. My little Olivia looked at the stuff that I was holding and said, "Here, let me take your stuff." Then she looked at the snow outside and looked at me and she asked if she should hold my arm while we walk to the van. I asked her if maybe I could just hold onto her shoulder while we walked. Of course she said sure and we started walking to the van. Then I felt this little arm around my back and felt my little angel trying to hold me steady so I wouldn't fall. She really is my little angel and that is what has become evident to me on this Sunday walk to the car. She opened my door for me and made sure that my legs were in before she also closed it for me. I've reflected on this the past little while. It wasn't the first time that she's been so helpful. Her mind is running a million miles per hour and I can hardly get her to focus on anything but she seems to always know when I need help. She's always taking stuff from my arms and carrying it inside for me. I can't get her to take her own stuff inside from the van, but when it's something that I'm carrying I don't even have to ask. If I fall, she is the first to make sure that I'm okay and is trying to help me up. This has been the answer to my prayers of "what I am to learn/do with my Olivia." She is here for me. As much as I struggle with her right now, she is exactly what I need. She will always be there to help me get to my car. She is, and will be, willing to help me when I need it. She isn't shy, and she won't be when I need someone strong to do things that I won't be able to do. She will take care of her brother and sister and has the energy to be able to do that. Her heart is so full of giving and helping and that will be a major blessing. There is not challenge that she will shy away from.
Without this disease I maybe wouldn't need her help as much, but I also may not have been able to see all of her many strengths. I am grateful that my Heavenly Father opened my eyes to the blessing that I have been given amidst the struggles that I have.
I have one child who pushes me to, and past, my limits. Olivia was an amazing baby. She was very content and happy. At 13 months old something clicked in her and she all of a sudden became my walking little challenge. I can remember how old she was when this change took place because I thought she must be teething. Little did I know that it was actually the sleeping monster that was waking up inside of her! Haha! But seriously. From that day forward, she has been hard for me to handle. As I said earlier, she often ran away. I've lost her, for real, about three times. Luckily nice strangers/police have found her. She spray painted my friend's very nice, white, Lexus SUV with bright pink spray paint. There is still evidence on our garbage can, the fire hydrant in front of our house and on the Stanford's license plate, if you look close. She ran back into the pool area when she was two. We were changing after we had finished swimming and she was no where to be found. She ran back to the pool, fully clothed and in her sheep skin winter coat and went down the slide and into the pool. I have often remarked that I have no idea where she came from. She is not my personality and she is not her dad's personality. She pushes us everyday. She says whatever she thinks, she is not shy in any way, she has more energy than I have ever seen in anyone, she loves to be the center of attention, she asks you to watch while she does something she knows she probably shouldn't do, and more. Most days, I honestly don't know how to handle her. Lots of people have said, "maybe she's getting it out of her system now and she's going to be the easiest teenager later?" Yeah right. Stay tuned for that update! Haha!
I do see the positives, for her, in how she is. She will never have a problem standing up for herself. She will not be pushed to do something that she doesn't want to do. Fear will never hold her back from trying anything. I was terribly shy as a child. Still, to this day, I don't like any form of confrontation and I still struggle with some social anxiety. It's not fun and she'll never have to deal with those feelings. But it's still a struggle.
As I've reflected over the past while of what I can do to handle her I've really prayed to know what to do. The answer that I've received is not what I can do for her while she's here on this earth but what she's going to do for me. It wasn't the answer that I thought. I was thinking that I had to change her somehow into a sweet, perfect, compliant little angel that girls are supposed to be, right? What I have learned is that she is going to teach me patience. I've never been a patient person. If there is something that I want to buy or some project that I want to do, I want to do it now! My lack of patience is something that I need to work on. And there is no way that her and I are both going to make it through this life, outside of prison, without me learning more patience. I am grateful to be pushed to have more patience. There is so much loveliness in patience. I yearn to be that person and I am grateful to have her so that I could see this weakness that I have and hopefully turn it into one of my greatest strengths. This idea of her teaching me patience is not my newest insight that I have had in why these certain spirits have been sent to me. That lesson I have been taught more recently and it has only happened because I have Muscular Dystrophy.
A couple of Sundays ago my girls and I were getting ready to leave church. Brad had taken Cooper home early as Cooper had a cough and had been up a lot in the night previous. It had snowed on Saturday night and so it was pretty slippery outside. Brad had been nervous about me being able to get to the van without falling and I told him that I would be fine. I came out of my classroom and headed for the door. My little Olivia looked at the stuff that I was holding and said, "Here, let me take your stuff." Then she looked at the snow outside and looked at me and she asked if she should hold my arm while we walk to the van. I asked her if maybe I could just hold onto her shoulder while we walked. Of course she said sure and we started walking to the van. Then I felt this little arm around my back and felt my little angel trying to hold me steady so I wouldn't fall. She really is my little angel and that is what has become evident to me on this Sunday walk to the car. She opened my door for me and made sure that my legs were in before she also closed it for me. I've reflected on this the past little while. It wasn't the first time that she's been so helpful. Her mind is running a million miles per hour and I can hardly get her to focus on anything but she seems to always know when I need help. She's always taking stuff from my arms and carrying it inside for me. I can't get her to take her own stuff inside from the van, but when it's something that I'm carrying I don't even have to ask. If I fall, she is the first to make sure that I'm okay and is trying to help me up. This has been the answer to my prayers of "what I am to learn/do with my Olivia." She is here for me. As much as I struggle with her right now, she is exactly what I need. She will always be there to help me get to my car. She is, and will be, willing to help me when I need it. She isn't shy, and she won't be when I need someone strong to do things that I won't be able to do. She will take care of her brother and sister and has the energy to be able to do that. Her heart is so full of giving and helping and that will be a major blessing. There is not challenge that she will shy away from.
Without this disease I maybe wouldn't need her help as much, but I also may not have been able to see all of her many strengths. I am grateful that my Heavenly Father opened my eyes to the blessing that I have been given amidst the struggles that I have.
Wednesday, 13 November 2013
A perfect body
I had the opportunity to teach the Young Women in our ward a lesson on the Word of Wisdom this past Sunday. The Word of Wisdom is a principle of health that members of the Church of Jesus Christ of Latter Day Saints live by. Young Women's is where the female youth in our church gather to learn on Sundays and have one activity together a week.
So I was teaching this lesson and while I was doing so I was taught a huge lesson. We decide to put only good things into our body. We refrain from drinking coffee, tea, or alcohol. We don't use any form of tobacco products. We are told to eat good things, such as good grains, fruits and vegetables and to only eat meat sparingly. And we are told to do nothing in extremes. For the most part, I am fairly good at living by the Word of Wisdom. I am not tempted, except when my kids are driving me nuts, to consume alcohol or drugs, and I don't drink coffee or tea. I'm probably not as good as I should be about consuming the good things! I do like junk food and probably indulge a little too much, but I think I do pretty good. So I was teaching about the Word of Wisdom and of the blessings that we receive by choosing to live by it.
One of these blessings is that they "shall receive health in their navel and marrow to their bones" and "shall run and not be weary, and shall walk and not faint" (D&C 89:18,20). I thought about this promise for a bit. I definitely don't believe that I have this disease because I have not lived by the Word of Wisdom, but I definitely can't run or really walk that well anymore. There have been times when I have felt that I can't accomplish the things that I would like to with the body that I have been given. I have felt like I could be a better mom if I could go and do more with my kids, if I felt like I had more energy. I've felt like I could be a better wife if I didn't need to lay down sometimes and could have a spotless house instead. I could be a better friend and neighbor if I could help someone else with their cleaning, or cooking or could just go visit without having to worry about how I'm going to even get inside their house. So how am I going to be the person that I should be with the body that I have?
This is where I learned an amazing lesson that I've been thinking about for the past few days. In a talk given by Elder Boyd K. Packer on living the Word of Wisdom, he said, "The Word of Wisdom does not promise you perfect health, but it teaches how to keep the body you were born with in the best condition and your mind alert to delicate spiritual promptings." He also shared an experience that he had. "I remember a blessing I received when I was serving in the military. It included counsel that's good for every young person: "You have been given a body of such physical proportions and fitness as to enable your spirit to function through it. ...You should cherish this as a great heritage. Guard it and protect it. Take nothing into it that shall harm the organs thereof because it is sacred. It it the instrument of your mind and the foundation of your character." This experience that he shared has had an amazing impact on me.
The body that I have is perfect for what I am supposed to accomplish on this Earth. Anything that I am to learn or to become I can do in the body that I have been given. Even though this body has physical limitations, it will not stand in the way of the progress that I can make. I can be the mother that my Heavenly Father wants and expects me to be in this body. I can be the wife that my Heavenly Father expects me to be in this body. I can be the friend and neighbour that my Heavenly Father would have me to be in this body. He gave me this body. Why would he give me a body that would hold me back from being the person that he wants me to be? I don't believe that he would. I believe the person that he would like me to be I can become in this body. It may take me changing my perception of the ideal mother/wife/friend. But I do have an amazing example.
My mom had Muscular Dystrophy as well. On top of the Muscular Dystrophy she had chronic headaches and fibromyalgia. I remember very few days where my mom actually felt good. In fact, I'm pretty sure she never felt good, just better. Despite her health, I couldn't have asked for a better mom. My mom wasn't able to go out and do anything physical with me. This didn't make her feel like any less of an amazing mom. Her example to me of her ability to endure to the end was the legacy that she left behind for me and all of her children. She was close to the Lord and worried about everyone except herself. I hope to be exactly like her and know that I can do that in this perfect body that I've been given.
So I was teaching this lesson and while I was doing so I was taught a huge lesson. We decide to put only good things into our body. We refrain from drinking coffee, tea, or alcohol. We don't use any form of tobacco products. We are told to eat good things, such as good grains, fruits and vegetables and to only eat meat sparingly. And we are told to do nothing in extremes. For the most part, I am fairly good at living by the Word of Wisdom. I am not tempted, except when my kids are driving me nuts, to consume alcohol or drugs, and I don't drink coffee or tea. I'm probably not as good as I should be about consuming the good things! I do like junk food and probably indulge a little too much, but I think I do pretty good. So I was teaching about the Word of Wisdom and of the blessings that we receive by choosing to live by it.
One of these blessings is that they "shall receive health in their navel and marrow to their bones" and "shall run and not be weary, and shall walk and not faint" (D&C 89:18,20). I thought about this promise for a bit. I definitely don't believe that I have this disease because I have not lived by the Word of Wisdom, but I definitely can't run or really walk that well anymore. There have been times when I have felt that I can't accomplish the things that I would like to with the body that I have been given. I have felt like I could be a better mom if I could go and do more with my kids, if I felt like I had more energy. I've felt like I could be a better wife if I didn't need to lay down sometimes and could have a spotless house instead. I could be a better friend and neighbor if I could help someone else with their cleaning, or cooking or could just go visit without having to worry about how I'm going to even get inside their house. So how am I going to be the person that I should be with the body that I have?
This is where I learned an amazing lesson that I've been thinking about for the past few days. In a talk given by Elder Boyd K. Packer on living the Word of Wisdom, he said, "The Word of Wisdom does not promise you perfect health, but it teaches how to keep the body you were born with in the best condition and your mind alert to delicate spiritual promptings." He also shared an experience that he had. "I remember a blessing I received when I was serving in the military. It included counsel that's good for every young person: "You have been given a body of such physical proportions and fitness as to enable your spirit to function through it. ...You should cherish this as a great heritage. Guard it and protect it. Take nothing into it that shall harm the organs thereof because it is sacred. It it the instrument of your mind and the foundation of your character." This experience that he shared has had an amazing impact on me.
The body that I have is perfect for what I am supposed to accomplish on this Earth. Anything that I am to learn or to become I can do in the body that I have been given. Even though this body has physical limitations, it will not stand in the way of the progress that I can make. I can be the mother that my Heavenly Father wants and expects me to be in this body. I can be the wife that my Heavenly Father expects me to be in this body. I can be the friend and neighbour that my Heavenly Father would have me to be in this body. He gave me this body. Why would he give me a body that would hold me back from being the person that he wants me to be? I don't believe that he would. I believe the person that he would like me to be I can become in this body. It may take me changing my perception of the ideal mother/wife/friend. But I do have an amazing example.
My mom had Muscular Dystrophy as well. On top of the Muscular Dystrophy she had chronic headaches and fibromyalgia. I remember very few days where my mom actually felt good. In fact, I'm pretty sure she never felt good, just better. Despite her health, I couldn't have asked for a better mom. My mom wasn't able to go out and do anything physical with me. This didn't make her feel like any less of an amazing mom. Her example to me of her ability to endure to the end was the legacy that she left behind for me and all of her children. She was close to the Lord and worried about everyone except herself. I hope to be exactly like her and know that I can do that in this perfect body that I've been given.
Friday, 8 November 2013
No more monkeys jumping on the bed
One of the first hard changes that I had to make in my life, because of the Muscular dystrophy, was the size of my family. I always thought that I would have at least five kids. I grew up in a family of five kids and loved it! Here I was, with two children, and had to face the idea that I probably wouldn't be able to have as many kids as I initially thought. I was doing pretty good taking care of Brigette but knew that we would need to decide soon if we could have one more. Brad was very supported and said he was on board with whatever I could handle physically. I knew that he wanted a boy. He tried to deny it but finally, one day, I broke him! I told him that it was very possible that the third would be a girl too. He said that he loved his girls and would be perfectly happy if the next one was a girl as well.
At this point I had been going back and forth on whether or not I felt like I could do another baby. Brad felt like there was definitely one more and that we could do it. So when Brigette was only six months old we started trying for our number three. Luckily it didn't happen right away. Haha! Luckily, the Lord's timing is much better than mine. Looking back now, if I had gotten pregnant right away we would have had three children in three years. It really was a death wish! And even now, they ended up being three kids in three and a half years. Still, insane, in my opinion, but perfect for our family.
Baby number three ended up being a little boy. I'm not a patient person at all, so as soon as I could find out I did. I called my Dr.'s office and asked what the ultrasound report said. She took a minute to find it and said, "male." I had to repeat it to her to make sure that I heard her right. I was so excited! I called Brad at work, right away, and told him it was a boy! He started to cry. Yeah right he didn't care!
Cooper's pregnancy was not easy. It was made a thousand times more fun that two of my sisters were pregnant and we were all due within six weeks of each other! This didn't make my mom all that excited as she didn't know how we were going to handle three babies so close together. But amid all the excitement, I was struggling. I was tired, weak and had two little girls under three. Brigette was obviously still very needy and dependent and Olivia was as busy as ever. Being pregnant again made it clear that this was the last time that my body was going to be able to handle pregnancy.
That was something that was really hard for me to accept. There was even a time when Cooper was a baby where I thought maybe we could sneak one more baby in there. I really wanted just one more. There were a couple of months where we didn't prevent pregnancy from happening but again the Lord knew best. After a couple of months, I was so tired and worn out, and weakening, that I realized there was no way I could do it again. I did have to mourn the fact that my family was done and that that decision felt like it was made for me. I wanted to decide when I was done. I didn't want my body to decide when I was done. And it is still something that I think about on occasion. With having three children so close together I probably wouldn't have been ready for number four until now. Cooper is three and a half and the thought of having one or two more would be exciting. My girls would absolutely love a new baby in our house. But even though it's not going to happen I am extremely grateful for the family that I have. I was blessed to be able to have kids at all, and for that, I will forever be thankful. My kids drive me crazy and make me want to scream, but when I see them all laying in my bed together, or my girls walking to the bus together, I know that the craziness is worth it. And when I hold other people's babies and realize how very little I would be able to do for them, it confirms that my family is complete. When I had my babies I didn't need someone there helping me care for them. I could do it all myself. Well, with a lot of help from Brad! And if there were a cure tomorrow, I may think about having more, but for now I am excited to see my little people turning into bigger little people and becoming good friends, just like I am with my sisters and brother.
At this point I had been going back and forth on whether or not I felt like I could do another baby. Brad felt like there was definitely one more and that we could do it. So when Brigette was only six months old we started trying for our number three. Luckily it didn't happen right away. Haha! Luckily, the Lord's timing is much better than mine. Looking back now, if I had gotten pregnant right away we would have had three children in three years. It really was a death wish! And even now, they ended up being three kids in three and a half years. Still, insane, in my opinion, but perfect for our family.
Baby number three ended up being a little boy. I'm not a patient person at all, so as soon as I could find out I did. I called my Dr.'s office and asked what the ultrasound report said. She took a minute to find it and said, "male." I had to repeat it to her to make sure that I heard her right. I was so excited! I called Brad at work, right away, and told him it was a boy! He started to cry. Yeah right he didn't care!
Cooper's pregnancy was not easy. It was made a thousand times more fun that two of my sisters were pregnant and we were all due within six weeks of each other! This didn't make my mom all that excited as she didn't know how we were going to handle three babies so close together. But amid all the excitement, I was struggling. I was tired, weak and had two little girls under three. Brigette was obviously still very needy and dependent and Olivia was as busy as ever. Being pregnant again made it clear that this was the last time that my body was going to be able to handle pregnancy.
That was something that was really hard for me to accept. There was even a time when Cooper was a baby where I thought maybe we could sneak one more baby in there. I really wanted just one more. There were a couple of months where we didn't prevent pregnancy from happening but again the Lord knew best. After a couple of months, I was so tired and worn out, and weakening, that I realized there was no way I could do it again. I did have to mourn the fact that my family was done and that that decision felt like it was made for me. I wanted to decide when I was done. I didn't want my body to decide when I was done. And it is still something that I think about on occasion. With having three children so close together I probably wouldn't have been ready for number four until now. Cooper is three and a half and the thought of having one or two more would be exciting. My girls would absolutely love a new baby in our house. But even though it's not going to happen I am extremely grateful for the family that I have. I was blessed to be able to have kids at all, and for that, I will forever be thankful. My kids drive me crazy and make me want to scream, but when I see them all laying in my bed together, or my girls walking to the bus together, I know that the craziness is worth it. And when I hold other people's babies and realize how very little I would be able to do for them, it confirms that my family is complete. When I had my babies I didn't need someone there helping me care for them. I could do it all myself. Well, with a lot of help from Brad! And if there were a cure tomorrow, I may think about having more, but for now I am excited to see my little people turning into bigger little people and becoming good friends, just like I am with my sisters and brother.
Sunday, 3 November 2013
The greatest blessing
For two years I was able to hide my muscular dystrophy. Looking back now I'm not exactly sure why I didn't tell people from the start. Maybe I was in denial. I'm really not sure.
I went through pregnancy with my second child without anyone knowing. You can definitely hide how slow you're starting to move when you are nine months pregnant. I remember one of the first falls that I ever had. Olivia, my first daughter was a handful right from when she turned 13 months old and it has never left. I remember for a fact that it was 13 months because I assumed she was teething. We are still waiting for that tooth to come through. A huge concern with Olivia was what a runner she was. As soon as I let go of her hand, off she would go. Again, I was pregnant and starting to feel the weakness in my legs. This was not the best time for me. I'll give you a few examples. As I look back now, I laugh, but at the time mostly I cried. We would pull up to our house and if for some reason I was not able to hold on to her hand, off she would run. She would take off down the block. So here I am, pregnant and weak and I can only almost keep up to her. For the most part I wasn't able to catch her. So I would follow her all the way around the block until she would get distracted by something, and stop, or until we were all the way around and back to our house, where most of the time she would climb the stairs and go inside. To outsiders I'm sure it just looked like we were taking a walk around the block. Another time I was at Costco with my mom, who was riding in her wheelchair. We stopped to eat before we left the store. As soon as Olivia was done she hopped off of the bench and took off towards the door. I started to hurry after her leaving my mom and all of our groceries behind. My mom decided that she might be faster on her electric wheelchair than I was walking so she followed and soon had me passed. Even at full speed, my mom didn't catch that little stinker until she had run all the way to the end of the Costco parking lot.
These were the kind of scenarios that I was dealing with at the time of one of my first falls. I'm sure I had probably fallen before, but this is a very distinct memory that I have. I had been somewhere with my mom, my Aunt Paula, and Olivia. They were dropping us off at home and Olivia managed to escape first. Off she started running down the middle of the road. Again, I started to take off after her. I didn't get very far before I tripped on the clog that I was wearing and fell in the middle of the road. I remember just starting to cry. I learned two things from my fall that day. The first thing that I learned is that even if I am not hurt, when I fall, I will cry. Part of that is from frustration. Part of it may be because it never feels very good. But I think that one of the biggest reasons is that it is just the way my body responds. When you are not expecting something to happen and you fall I think my body is filled quickly with adrenaline. One of the ways that my body reacts to that situation is crying. The second thing that I was witness to is how sweet and kind my little Olivia is. As soon as I fell, that little 20 month old girl stopped in her tracks. She turned around and saw me on the ground and immediately got tears in her eyes and started walking back to me to make sure that I was okay. And still to this day, as much as some days I want to sell her on ebay, she is so helpful and worried about her mom.
I've learned so many things as I've gone through my struggles with this disease and I will share more of them as I continue to document my journey. This fall, was one of the first times that I felt that people may start to notice that something may be off. Other things were getting harder as well. Stairs were taking me a bit more time. As much as I tried to hurry up them and act like everything was fine, I was definitely slowing down. I also couldn't get up from chairs quite as easily. I waited for a few months after having Brigette. Like I said, I don't know why I waited so long. I have the best family and friends that I could ever ask for. As word started to go around that I suspected that I had muscular dystrophy, I was overwhelmed with love and support around me. I had two siblings on missions at the time. I still have the letters saved that they wrote me when they found out. The love that I share with my family is indescribable. The words of support that I received from them touched my heart so much. The love that I have felt from people around me as I've lived with muscular dystrophy is the single greatest blessing that has come from this disease and for that I will always be grateful.
I went through pregnancy with my second child without anyone knowing. You can definitely hide how slow you're starting to move when you are nine months pregnant. I remember one of the first falls that I ever had. Olivia, my first daughter was a handful right from when she turned 13 months old and it has never left. I remember for a fact that it was 13 months because I assumed she was teething. We are still waiting for that tooth to come through. A huge concern with Olivia was what a runner she was. As soon as I let go of her hand, off she would go. Again, I was pregnant and starting to feel the weakness in my legs. This was not the best time for me. I'll give you a few examples. As I look back now, I laugh, but at the time mostly I cried. We would pull up to our house and if for some reason I was not able to hold on to her hand, off she would run. She would take off down the block. So here I am, pregnant and weak and I can only almost keep up to her. For the most part I wasn't able to catch her. So I would follow her all the way around the block until she would get distracted by something, and stop, or until we were all the way around and back to our house, where most of the time she would climb the stairs and go inside. To outsiders I'm sure it just looked like we were taking a walk around the block. Another time I was at Costco with my mom, who was riding in her wheelchair. We stopped to eat before we left the store. As soon as Olivia was done she hopped off of the bench and took off towards the door. I started to hurry after her leaving my mom and all of our groceries behind. My mom decided that she might be faster on her electric wheelchair than I was walking so she followed and soon had me passed. Even at full speed, my mom didn't catch that little stinker until she had run all the way to the end of the Costco parking lot.
These were the kind of scenarios that I was dealing with at the time of one of my first falls. I'm sure I had probably fallen before, but this is a very distinct memory that I have. I had been somewhere with my mom, my Aunt Paula, and Olivia. They were dropping us off at home and Olivia managed to escape first. Off she started running down the middle of the road. Again, I started to take off after her. I didn't get very far before I tripped on the clog that I was wearing and fell in the middle of the road. I remember just starting to cry. I learned two things from my fall that day. The first thing that I learned is that even if I am not hurt, when I fall, I will cry. Part of that is from frustration. Part of it may be because it never feels very good. But I think that one of the biggest reasons is that it is just the way my body responds. When you are not expecting something to happen and you fall I think my body is filled quickly with adrenaline. One of the ways that my body reacts to that situation is crying. The second thing that I was witness to is how sweet and kind my little Olivia is. As soon as I fell, that little 20 month old girl stopped in her tracks. She turned around and saw me on the ground and immediately got tears in her eyes and started walking back to me to make sure that I was okay. And still to this day, as much as some days I want to sell her on ebay, she is so helpful and worried about her mom.
I've learned so many things as I've gone through my struggles with this disease and I will share more of them as I continue to document my journey. This fall, was one of the first times that I felt that people may start to notice that something may be off. Other things were getting harder as well. Stairs were taking me a bit more time. As much as I tried to hurry up them and act like everything was fine, I was definitely slowing down. I also couldn't get up from chairs quite as easily. I waited for a few months after having Brigette. Like I said, I don't know why I waited so long. I have the best family and friends that I could ever ask for. As word started to go around that I suspected that I had muscular dystrophy, I was overwhelmed with love and support around me. I had two siblings on missions at the time. I still have the letters saved that they wrote me when they found out. The love that I share with my family is indescribable. The words of support that I received from them touched my heart so much. The love that I have felt from people around me as I've lived with muscular dystrophy is the single greatest blessing that has come from this disease and for that I will always be grateful.
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