I'm pretty devastated that the show Parenthood is over. I love how they show what life is actually like, highs and lows. I also love how the producers fulfilled all my dreams with the season finale. There is one moment though in the season finale that pulled at my heart strings the most. With tears in his eyes, Zeek asks his daughter if he's been a good dad and her response " the very best"
Now this post isn't going to get into how I lost my dad 7 years ago, I'll save that for another time. A time when I feel like crying all day because I miss him. This post is about a moment with him that changed my perspective on MS, and though I didn't always want to hear what he had to say,he was to me the very best.
Now lets take a walk down memory lane......In 2008 my high school was having a mother daughter banquet. Daughters and their moms went to dinner and a fashion show at the high school that was put on by the student body. Girls and their moms walked in together and got handed flowers by an escort. At this time in my life my mom had a cane and was walking pretty well. Being young and naïve, I was nervous about how other people would see us and look at us. I was just 18 and felt like people were going to have this idea of who we were all because she was walking with a cane. Through some not so nice verbal words, I somehow told my parent's that I wasn't sure if I wanted to go. My dad flipped and then and told me "don't be embarrassed ". He told me instead to be proud of her and help her. I remember these words like it was yesterday because that's when I first started to see things differently and try to be a better person.
Since 2008 my mom has gone through a lot. She retired from a job she loved after worked there for over 20 years. She most recently got a Baclofen pump put into her body to release Baclofen to help with her spasticity in her leg. She now uses a walker to move around the house and a wheelchair when we go out. She is neighborhood watch for her neighborhood, riding up and down the street in her electric wheelchair and letting the kids hop on for a ride. Most importantly though, she is happy. Despite the curve balls, she is the mom I remember.
After losing my dad our lives turned upside down. The people my mom cared for suddenly become the people who were caring for her. We became the caretakers, and it was not easy. Suddenly the little boy she carried would carry her and her little girl who's hair she brushed would brush hers. None of wanted to become a nurse, but we all did. When my brother was little my mom would read " I love you forever" to him, I don't think any of us anticipated it would become our lives.
As a kid, you always want to be someone you're not. Whether it be a superhero or Disney princess there is always something you want to be. When I was little I heard all about the Kennedy's. All about how their life was beautiful but was also so tragic. Yet, I still wanted to become them. I found beauty through their tragedy, I saw Jackie stand up tall in photos when she bid farewell to her husband, I watched Caroline stand alone when she was left alone without her brother.
Telling my brother that I had MS, was the hardest person to tell. A month after he was born my mom broke her wrist and I helped take care of him. I say this because I believe that since then he was bound to my heart like an old velveteen rabbit. Now here I was afraid that he was going to now have to take care of me but in reality he always had. He stood up for me when I was getting yelled at and always had my back. But suddenly, when I told him about me and my MS he told me, "we're just like the Kennedy's" And I laughed.
Oh dad would be so proud to see that we've become a new version of the Kennedy family. A family that despite tragedy still put on a happy face. MS is all about putting on a happy face. Sometimes the pain is in my legs and I feel like I have a golf club stuck inside. ALL the time I have pins and needles in my left hand, and there are other times when this disease makes me feel like I'm hung-over and drunk all at the same time. I hate giving myself injections of Copaxone every night, but I do it because when push comes to shove, I am going to push the crap out of his girl MS.
When I got diagnosed my mom told me I couldn't do everything anymore. She told close friends and they offered to help, but didn't just say "let me know if you need anything" instead they offered to grocery shop, or bring her to a Dr. appt. These offerings have been the most gracious. I thought asking for help would be embarrassing but it wasn't. Suddenly I became proud.
I'm proud to walk with someone in a wheelchair, someone who has a cane, hold the door open and then give a smile. I'm proud to come from a family that smiles through tragedy. Where there is a will, there is a way.
Letter from the editor: Thank you to the friends that turned into family. Without you and your help I don't think we ever would have realized what life was all about.
XOXO
B
Saturday, January 31, 2015
Friday, January 30, 2015
What if I got the same disease that made me who I am today... Well I did.
A lot has happened since my last blog post. For instance I got diagnosed with MS. That's right in case you've been living under a rock / care to ignore my posts on facebook and instagram. I was diagnosed with Multiple Sclerosis (MS) on August 24th 2014. After a while people stop asking how you are, stop really seeing how you're doing and don't bother to check in. Just like everything in life, things only last so long. It's not because people don't care, it's just everyone has their own crap. This crap, (MS) is mine, so here goes my story.
I've been familiar with this disease since I was in high school because my mom has it too. Lucky us! But really, you the reader are the lucky one. I am about to enlighten you all with my life. How it isto live with someone who has MS, and now how it is to live with MS.
"Well lets, start at the very beginning, a very good place to start" I went to bed one night in August and woke up in the morning and was completely nauseous I couldn't see well and didn't really know what was happening. After much debate whether I was crying for attention ( per TK) or I was hungover ( also TK) I lay on the bathroom floor and begged TK to take me to the ER, well aware that this visit would be longer than I anticipated.
Before I left for my long hot journey through the Callahan Tunnel, I changed out of my Guinness
t -shirt and into a Jimmy Fund shirt to seek immediate entrance because lets face it, I was hopefully that The Jimmy Fund shirt would move me along (especially at a hospital). And it worked.
I sat in the waiting room for 30 seconds and was immediately moved along. I sat in a wheelchair and got pushed around and told every Dr. I met how my mom had MS and I thought that's what I had. My hands had pins and needles in them and so did my feet and they were not going away. Before I knew it, I was awaiting an MRI, 2 hours later I was out and being moved up to the neurology floor. * This is where I will tell you about my high praise for MGH, and all the people I know that work there or work in any hospital for that matter you are a gift from god. THANK YOU
After arriving to my room, and getting "comfortable" TK left to make some calls. This is when the Dr, came in and told me I had Multiple Sclerosis, while I was ALONE. Lovely, that he waited until I was by myself, don't you think.* This actually wasn't so bad, as the last thing I needed was to comfort someone else
I ended up staying overnight at MGH for three nights. I had friends come by and help my look more like a pirate bringing me an eye patch and hat, braiding my hair, delivering Helluva Good and Cape Cod Potato Chips to remind me of college, and who could forget my 7 month pregnant MOH wheeling my mom up to see me. I saw a lot in those few days, I saw the beginning of my future and what good people had in them. Now 6 months later, here I am no eye patch and hopefully no new lesions on my brain.
I can't tell you in one blog post what Ive been doing for the past 6 months, what medicine I'm on, how sometimes I'm scared, how it is to be on the other side of the fence, or fearful I am that I will have another attack next August. I'll have to fill you all in one post at a time.
You cant have everything all at once right, I mean that wouldn't keep you interested
In the meantime you can click here
http://www.nationalmssociety.org/What-is-MS
and of course here http://www.nationalmssociety.org/Donate
Letter from the Editor: A very special thank you to all my friends and family who have made this part of my life story so special just by being a part of it. I would also like to say THANK YOU to Princess Jasmine. When we were young, you would come to my house every weekend, without fail every time you walked into my house my mom would tell you how nice you looked. Thank you for always telling me the nice things your mom says about me and for encouraging me to write about this. My hope is that someone affected by MS in any way, shape or form can find some peace through my words.
XOXO
B
I've been familiar with this disease since I was in high school because my mom has it too. Lucky us! But really, you the reader are the lucky one. I am about to enlighten you all with my life. How it isto live with someone who has MS, and now how it is to live with MS.
"Well lets, start at the very beginning, a very good place to start" I went to bed one night in August and woke up in the morning and was completely nauseous I couldn't see well and didn't really know what was happening. After much debate whether I was crying for attention ( per TK) or I was hungover ( also TK) I lay on the bathroom floor and begged TK to take me to the ER, well aware that this visit would be longer than I anticipated.
Before I left for my long hot journey through the Callahan Tunnel, I changed out of my Guinness
t -shirt and into a Jimmy Fund shirt to seek immediate entrance because lets face it, I was hopefully that The Jimmy Fund shirt would move me along (especially at a hospital). And it worked.
I sat in the waiting room for 30 seconds and was immediately moved along. I sat in a wheelchair and got pushed around and told every Dr. I met how my mom had MS and I thought that's what I had. My hands had pins and needles in them and so did my feet and they were not going away. Before I knew it, I was awaiting an MRI, 2 hours later I was out and being moved up to the neurology floor. * This is where I will tell you about my high praise for MGH, and all the people I know that work there or work in any hospital for that matter you are a gift from god. THANK YOU
After arriving to my room, and getting "comfortable" TK left to make some calls. This is when the Dr, came in and told me I had Multiple Sclerosis, while I was ALONE. Lovely, that he waited until I was by myself, don't you think.* This actually wasn't so bad, as the last thing I needed was to comfort someone else
I ended up staying overnight at MGH for three nights. I had friends come by and help my look more like a pirate bringing me an eye patch and hat, braiding my hair, delivering Helluva Good and Cape Cod Potato Chips to remind me of college, and who could forget my 7 month pregnant MOH wheeling my mom up to see me. I saw a lot in those few days, I saw the beginning of my future and what good people had in them. Now 6 months later, here I am no eye patch and hopefully no new lesions on my brain.
I can't tell you in one blog post what Ive been doing for the past 6 months, what medicine I'm on, how sometimes I'm scared, how it is to be on the other side of the fence, or fearful I am that I will have another attack next August. I'll have to fill you all in one post at a time.
You cant have everything all at once right, I mean that wouldn't keep you interested
In the meantime you can click here
http://www.nationalmssociety.org/What-is-MS
and of course here http://www.nationalmssociety.org/Donate
Letter from the Editor: A very special thank you to all my friends and family who have made this part of my life story so special just by being a part of it. I would also like to say THANK YOU to Princess Jasmine. When we were young, you would come to my house every weekend, without fail every time you walked into my house my mom would tell you how nice you looked. Thank you for always telling me the nice things your mom says about me and for encouraging me to write about this. My hope is that someone affected by MS in any way, shape or form can find some peace through my words.
XOXO
B
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