Parental Guilt And Questioning Oneself

Since I have gotten my diagnosis of MD, all the challenges and difficulties I have faced all my life, are now explained by this diagnosis. The puzzle pieces have been put together. With that being said there has been a lot of reflection, especially among my family. One of the things that they have said to  me since the diagnosis is that looking back now, they feel that they should have noticed the signs more, and feel as though they may have let me down. I constantly tell them that is not true, but being parents I can understand why they feel that way. Parents and grandparents, feel they have the responsibility to notice signs when their child is struggling and having difficulties, and when they don't it brings up a lot of feelings in emotionsu. My family had no way of knowing that my walking difficulties, challenges with various activities were the signs of this devastating condition known as MD. They start to feel like and ask themselves, by doing this or that did we make the problem worse, would I not have all the difficulties I do right now. The answer is no, but as parents and grandparents their job is to protect me and keep me safe and healthy. And when your child or grandchild is living with a disability and has faced challenges since they were very young, and continues to face them, its hard not to feel as though you did or didn't do something. My family did everything they could to find out why I experienced the challenges I faced, they were and are today on top of it. Its natural to feel guilt or question oneself when a family member or a loved one is going through a difficult situation, moreso if you are a parent or grandparent. As time goes bye those thoughts and feelings that they have will come and go. When a parent or family members starts to think that way, its important to remember that it is a natural feeling to have. I know that my family feels this way at times because they love and care about me so much. I know that they did everything they could, and I tell them that and reassure them. By letting them know that I don't blame them in any way, helps to ease those feelings of guilt and allows them to not question themselves. 

My Strength Is My Shield

In my previous post, I talked about strength, physical, mental, and spiritual, and how having mental and spiritual strength allows people to handle situations that arise much easier than if one doesn't have it. Not only does mental and spiritual strength help one deal with situations, but it also serves as a shield. When I was growing up, before I knew I had MD, I was normal in many ways, but I was also different in other ways. I was the kid that got picked last for teams, the one that walked a bit weirdly, the one that would rather sit and read a book or color instead of playing on the playscape, the one that would trip and fall and known as "clumsy one." As a result, it made activities and certain situations difficult for me especially because of the comments that kids and even adults were made. I remember when kids, especially boys, would tell me to get my butt out of their face when I would get up on the floor. They would ask me why I broke so many bones, why I walked a bit differently than they did, why couldn't I run like they did and as fast as they could, they would call me lazy, and teachers would yell at me to run faster. I was asked to leave various activities such as gymnastics, karate, dance, and had to stop other activities because of my clumsiness. Things like this could really make a person feel like they aren't good enough or strong enough or even make them feel rejected, but for me it was what helped me to become strong, and toughen up. These experiences helped me to develop the shield of strength I have today. I could of let it upset me and make me feel as though I wasn't good enough, but instead God used those experiences and made them into a shield, just like Captain America's. Not only do I have my shield of strength, but I also have God and my faith as a shield. I am reminded that God is my shield in in Psalm 28:7 "The Lord is my strength and My shield." Having a progressive disorder like Muscular Dystrophy is very challenging, and its easy to let it get you down and feel as though you don't have the strength to deal with it. Even though I didn't know that I had MD when I was younger, God helped me to use those experiences to create my shield of strength, so that I wouldn't let difficult experiences, like dealing with my progression, get me down. When we find ourselves going through challenges, or dealing with rejection and negativity, we have two choices, we can let it get us down or we can let it strengthen us. If we let it strengthen us, we can then use that strength as a shield to deal with whatever comes our way.

Strength

When we are little we are taught that strength is physical, but it isn't until we are older, or until we experience certain circumstances, that we learn that strength is also mental and spiritual. I have never been strong physically, I was never the fastest kid, and I was the one who wasn't good at sports.
even though I wasn't strong physically, I learned that I was strong in other ways. Because I have always had things be more challenging for me physically, it has toughened me up in way. It helped me to realize that physical strength is not nearly as important as how strong I am mentally and spiritually. When you have a progressive disorder like Muscular Dystrophy, and you get weaker over time and you start to lose your ability to do things you have to find your inner strength just to deal with it. Yes, physical strength is important, but if you don't have the mental strength to deal with a situation, it makes it much harder to deal with. Since I have learned to tap into my mental strength, and my spiritual strength, it makes losing my physical strength easier to deal with. Even though, I have always had difficulty with physical strength, and things were always harder for me physically and that has increased over time, I was able to tap into my other sources of strength much earlier in life than most. When people ask me how I have the strength to deal with all of this I refer them to Philippians 4:13, which says, "I can do all things through Him who gives me strength." This means that my strength to do deal with what I am going through each day doesn't come from my physical ability, it comes from God. God is what gives me the strength to get up each day, God gives me the strength to do my chest therapy and to hook up to my feeding up. It's because of God I have always, ever since I was little, had the strength to enjoy life despite the challenges I have had and continue to have. Just because I am not strong physically, it doesn't mean I don't have strength.

Being Thankful

When you have a disorder like MD and you are constantly getting weaker and having more difficulty with just daily tasks and there is nothing you can do about it, you find it difficult at times to be thankful. You think, how can I be thankful that I can't eat, how can I be thankful that I need help dressing and bathing, how can I be thankful that I have respiratory problems, how can I be thankful that I have to use a wheelchair? A lot of people that I come in contact with are surprised to hear me talk about how thankful I am and how blessed I am. They think, how can you be thankful and be blessed when you deal with such challenging circumstances on a daily basis. At first, you can understand why some people think that. The truth is, I have so much more to be thankful for than to not be thankful. I am thankful to have a family that loves and cares for me, and will do anything for me. I am thankful to have a home filled with love and laughter. I am thankful to have friends who see me as a person, not as someone with a disability, and who make me laugh and are always there for me. I am thankful to have a church community that loves me and my family and will help if and when we needed. I am thankful to have group of doctors and nurses who work hard to ensure that have the best quality of life possible. I am thankful and blessed to have health insurance so I can get the medicine and medical equipment that not only keep me alive but allow me to get out of the house and go to church and be with my friends. I am thankful to have my faith in God which helps me to stay mentally and spiritually strong through all thatI have been through. During the November, everyone thinks more about all that they are thankful for since it is the month of Thanksgiving, and you will see what I am thankful for each day on Facebook. While I think that is great, we shouldn't just be thinking about what we are thankful for in November, but all year around. By thinking about what I am thankful for all year around, it helps me to stay grounded in a way because I don't get into the poor me mindset saying there is nothing good in my life. On the rare occasion I find it difficult to be thankful about things I think of 1 Thessalonians 5:18 "...give thanks in all circumstances; for this is God's will for You in Christ Jesus." This verse helps me to remember that no matter what is going on in life, God wants us to be thankful. We can always find something to be thankful for, and its important that we should. By being thankful in every circumstance, we are not only honoring God but we are remembering that even amidst the toughest times in life, there are always blessings and a bright spot that we can be thankful for.

Halloween

Halloween is always a fun time of year, its the time of year that lets you know that fall is here and kicks off the start of the holiday season. Going to parties, wearing fun costumes, trick or treating, and eating candy are all fun parts of the holiday. I have memories of dressing up in princess costumes, and even a go go dancer with my god sisters and going trick or treating, and coming home and eating our candy, and if Halloween fell on a weekend we would sometimes get to have a sleepover. These were definitely fond memories. Having disability or illness like Muscular Dystrophy, that effects your mobility and other aspects of your life can make holidays, such as Halloween a challenge. When I was little, I loved the idea of going trick or treating, dressing up, hanging out with my god sisters, and eating candy but the actual walking when trick or treating was hard for me. By the time I would get to the 6th or 7th house, I would complain my legs hurt and were tired and I wanted to go home. Despite being uncomfortable I focused on the other fun aspects of it. When I lost my ability to swallow, Halloween became harder because I couldn't eat and enjoy the candy that was at the parties, and that we had for the trick or treaters. As my mobility has become more diminished and I have to have help with dressing,  being hooked up the pump and backpack, being in my power chair, and now having my leg braces I felt I couldn't wear and dress up in great costumes. I have learned that just because I can't eat candy, just because I have a feeding pump in a backpack, just because I have leg braces, just because I am in a power chair doesn't mean I can't enjoy the holiday. I can find a way to incorporate my chair into a costume (something I have seen others in chairs do and am planning to do next year), I can wear my fun crazy colored wigs, and glow in the dark necklaces and bracelets. Just because I can't eat, and am in a wheelchair and have mobility issues doesn't mean I can't enjoy this fun night, I just enjoy it a little bit differently. Having a disability or an illness, can make it harder to enjoy holidays such as Halloween, but it doesn't mean they can't be enjoyed, we just enjoy them differently. Having fun and enjoying parties, holidays, and events is what we all want and strive for, especially those of us with physical challenges. In the end we do get to achieve that, even if it is a little bit different. As I reflect on my childhood Halloween experiences I am reminded of one of my favorite verses, Ecclesiastes 3:1 “There is a time for everything, and a season for every activity under the heavens:...” and no matter what, your never to old to have fun with Halloween whether your 24 or 104.

Muscular Dystrophy....Not Just For Boys Anymore

      


I know I haven't blogged in quite awhile but there was a lot up in the air, and now its not. I recently learned that I have Muscular Dystrophy (MD), which is a progressive genetic disorder that causes the skeletal muscles to get weaker over time, including the muscles that aid in breathing, for which there is no cure or treatment. It was found thanks to genetic testing by a neuromuscular specialist who runs an MD clinic. As one can imagine this was so shocking for me and my family, but we were relieved to have a diagnosis. This diagnosis explains everything that I have gone through since I was a young child, and the symptoms fit me perfectly. My picture should be next to the description.  As a result of this new diagnosis we learned that the other diagnoses were not correct, and I had powerful chemo and immunosuppression drugs I didn't need. The question is how did a diagnosis like this get missed for so long? The simple answer is that I am a girl. Most of the people who have Muscular Dystrophy are boys, and for that reason its not something that doctor's think of off hand. Another reason is because I wasn't floppy. When doctors think about or diagnose MD in young girls it is because they're floppy, but that is not always the case. We now know that I had signs of MD ever since I was little, but at the time we didn't know that they were a sign of this serious condition. Ever since I was little I was a bit different than the other kids, but not so different that it made us think of MD. I crawled differently, walked later than most and walked differently, had difficulties with running and being physically active, fell a lot and broke a lot of bones. My family took me to doctors but they all said it was because I was tall, or clumsy. The thought of MD never crossed anyones mind, but these were all signs and symptoms. The back, joint pain, and swelling were all connected to the MD because of the odd way I walked and the bowing of my legs from the weak muscles due to the MD. The doctors thought I had a rheumatological problem, because they occur more in females. A rheumatology problem was more likely than MD. Even then, the doctors never agreed that it was a rheumatology problem because the symptoms never fit and I had no response to the medications. It wasn't until I started developing the respiratory problems I had that the thought of MD or a genetic neuromuscular disorder occurred. This was a complete shocked. After meeting with the neuromuscular doctor, I was told that it wasn't an inflammatory/autoimmune problem, and that a genetic cause was likely. After testing it was confirmed. Now that we have an accurate diagnosis, it is helpful to the doctors and my family to ensure I have the best quality of life as possible. After my diagnosis, that my story is not that uncommon for girls who have MD or other genetic neuromuscular disorders. Many of them got a delay in diagnosis, or were diagnosed with a inflammatory or autoimmune disorder, and it was only when they failed the treatment that the thought of a genetic neuromuscular disorder is brought up. The doctors have said if I had been a boy, I would have been tested for MD. I am often asked what would have been done differently, besides taking all the chemo and immunosuppressive drugs. Yes we would of done things differently, but there is no point in looking back, only looking forward. Now that we have an accurate diagnosis, the important thing is make sure I have the necessary equipment, keeping me as free from infections as possible, and dealing with the changes as the disease progresses and ensuring I have the best quality of life.