Five years later and that is how I feel: the more things change, the more they stay the same.
Tomorrow will be my Five Year Brainiversary. I read back to the first few blogs I wrote and man, Bon Jovi knew a bit of what he was talking about.
Change:
Mama. The biggest change. My LEAST favorite change. She passed away August 12th of this past year. She lived a life of happiness, passion, kindness, honesty and loyalty. She was by far the strongest woman to walk this earth, dealing with any and all hardships with grace. We miss her eye rolls, silly giggle when she thought she was funny, her playing on her iPad at night while Daddy has sports on, her honest opinion on things, her tough love and her commitment to her friendships and family. When I had my surgery, my mama bathed me, picked my scabs, dealt with my pain and tears. She went to every appointment, even in a wheelchair! She was my best friend, my rock.
Same:
Mama. We don't go a day without laughing at something Mama said, reacting to things that happen the way we know Mama would want us to, laugh at ourselves when we say something funny, or try to look at the positive of things like she always did. We say "It is what it is" ... often. We feel her presence in every family occasion, all the silly moment with the girlies, and I can hear her voice when I am becoming negative about something. She is still our rock. Just a rock in heaven...or okay, I guess she can be an angel now.
Change:
Love. MY FAVORITE CHANGE! I have met the love of my life. The one that laughs at my silliness, rolls his eyes at my ridiculousness, loves my crazy and my family's crazy, he loves my laughs and wipes my tears (more than he ever bargained for). He stuck by me through the hardest time of my life. Not only did he stick by me but he fell in love with me through the hardest time. I think it was some famous person, Marilyn Monroe or someone? who said "If you don't like me at my worst, you sure as hell don't deserve me at my best." I may have added the curse word or confused some of the saying (I do that a lot), but I think Matt deserves the best of me from this point forward. He is everything I could have imagined and more. I am the luckiest girl that he picked me. I thank God daily for sending me my most favorite blessing at exactly the right time. He really does know what He is doing.
Same:
Love. I still love pickles, chips, giraffes, Pittsburgh Sports, Hunter Pence, the beach, and life. Okay, this one was a stretch. I read back to my praying for a man to want me for all of who I am, and I just ... I just am so lucky. Have I mentioned that yet?
Change:
Chiari. The tingling and weakness in my left side has subsided. I have begun taking anxiety medication as well as B12. Both have seemed to support the decrease in the tingling. My "Woody Arm" has shown up much less and I am no longer seeing the neurologist regularly, as I feel pretty comfortable more often than not.
Same:
Chiari: I still have headaches. Just last week I was down for a full 36 hours. I have had a nasty cough, so I am assuming that is what triggered it at some point. I still wear an ice pack often, I would say on average at least once a week. I still rely on Advil to take the edge off. I still worry when I feel the weakness in my left arm or when I gag when I brush my teeth. I still thank God for the surgery, the doctors, the success I had. I look back at my fears and the pain I had. I am so thankful for the push to have the surgery. As I say in almost every blog, I think I still get headaches so I remember how bad it once was...
Change:
Same:
Chiari: I still have headaches. Just last week I was down for a full 36 hours. I have had a nasty cough, so I am assuming that is what triggered it at some point. I still wear an ice pack often, I would say on average at least once a week. I still rely on Advil to take the edge off. I still worry when I feel the weakness in my left arm or when I gag when I brush my teeth. I still thank God for the surgery, the doctors, the success I had. I look back at my fears and the pain I had. I am so thankful for the push to have the surgery. As I say in almost every blog, I think I still get headaches so I remember how bad it once was...
Change:
The Three of Us (siblings): Mama is not here. That is the biggest change, even with them. She is not here to support Daddy when things get rough. She's not here to tell Jackson to relax and walk away when he gets loud and angry, tell him to stop impulsively spending money, to stop making her laugh when she's mad at him. She is not here to tell Maggie to save her money a certain way, question where she is, practice tough love when needed. She is not here to help me buy a wedding dress, wedding plan, organize all the crap Matt and I have in our house. We are all dealing with things daily that we wish our Mama was here to help us with, and we have to find a new way to deal with it. Some may say we were all TOO dependent on our Mama girl, but I think it is fair to say we were just blessed to have that kind of relationship with our Mama.
Same:
The Three of Us (siblings): We are the same. I am here for everyone as much as I can. Chat with Jackson a couple times a week, have dinner with him and Dad pretty often. Maggie is still struggling with her demons of addiction and as hard as it is, I have still tried to practice the tough love that my Mama has taught me over the years. I feel like the three of us have a special bond. We have been through literal hell and back. As per our usual ways, Jackson and I communicate pretty well. We have found a peaceful place where we can really talk about our grief, laugh about our memories, and discuss our fears. I can only speak for myself, that I still hope Mag can join us some day in this happy bond. We love her more than words can describe. But, as it has been for the last ten years, we love her, not her addiction. Five years ago when I went in for my Chiari brain decompression surgery, my sister was at a rehab in Florida. Today, I dropped her off at the airport, for her to once again go to a rehab in Florida. As I was five years ago, I am still hopeful she will find her purpose, her peace, and her faith in the world. Feeling all the same.
Change:
Daddy. He is skinnier than he's been in years, he joined a golf club he always said he would, he eats left overs that he never would and now he has to say that I am engaged. He never thought he'd see the day! He has to make decisions about the three of us, alone. He has to grocery shop and cook for himself (and Mag and Jax depending on who is home). He has to text me (back) each morning and every night before bed. He has to go out to dinner with me often, spend time with my boyfriend, and answer my calls every day after school. He has become my Dada (mix of Dad and Mama - I promise I don't call him that!) I have always loved and admired the man my dad was, but I never appreciated him more than I have in the last six months. Although my guy is no handy-man like my daddy, he shows the same examples of love, strength and commitment that Daddy always has. As I watched my dad these past six month, I have determined those are the most important qualities I need in a man ... again, how did I get so lucky to not only get a Dad who showed me that worth, but now found a guy who exemplifies that worth.
Same:
The Three of Us (siblings): We are the same. I am here for everyone as much as I can. Chat with Jackson a couple times a week, have dinner with him and Dad pretty often. Maggie is still struggling with her demons of addiction and as hard as it is, I have still tried to practice the tough love that my Mama has taught me over the years. I feel like the three of us have a special bond. We have been through literal hell and back. As per our usual ways, Jackson and I communicate pretty well. We have found a peaceful place where we can really talk about our grief, laugh about our memories, and discuss our fears. I can only speak for myself, that I still hope Mag can join us some day in this happy bond. We love her more than words can describe. But, as it has been for the last ten years, we love her, not her addiction. Five years ago when I went in for my Chiari brain decompression surgery, my sister was at a rehab in Florida. Today, I dropped her off at the airport, for her to once again go to a rehab in Florida. As I was five years ago, I am still hopeful she will find her purpose, her peace, and her faith in the world. Feeling all the same.
Change:
Daddy. He is skinnier than he's been in years, he joined a golf club he always said he would, he eats left overs that he never would and now he has to say that I am engaged. He never thought he'd see the day! He has to make decisions about the three of us, alone. He has to grocery shop and cook for himself (and Mag and Jax depending on who is home). He has to text me (back) each morning and every night before bed. He has to go out to dinner with me often, spend time with my boyfriend, and answer my calls every day after school. He has become my Dada (mix of Dad and Mama - I promise I don't call him that!) I have always loved and admired the man my dad was, but I never appreciated him more than I have in the last six months. Although my guy is no handy-man like my daddy, he shows the same examples of love, strength and commitment that Daddy always has. As I watched my dad these past six month, I have determined those are the most important qualities I need in a man ... again, how did I get so lucky to not only get a Dad who showed me that worth, but now found a guy who exemplifies that worth.
Same:
Daddy. My dad is my best friend. I can count on his black and yellow hearts daily, his answering of a phone call always (or I panic), his maintenance, and his telling me to quit worrying "its okay"-ness". I can always count on him. No. Matter. What. He will literally bend over backwards for his family and that has never changed. He is smiley, thinks I am so funny, and although we don't always see eye to eye on certain things in the world, he is still my number one fan. I have always loved him mostest and I will always say that Maggie, Jackson and I are the luckiest kids in the world to have grown up with a man who has shown us the meaning of family and love.
I am rereading this and realizing this is kind of a boring post. I needed to organize my thoughts and I think this helped me a bit. So for all of those that don't know me as well and were hoping for more Chiari, I apologize. For those of you that do know me, and know the circumstances of life these days, I apologize for the blah-ness.
I want it to be known that I still LOVE work. I feel like I haven't been the best I can be the past six months as life has taken a toll on me, however I still look forward to going each day. Matt jokes about moving occasionally and I always look at him wide-eyed and say "NO! I can't leave my job!" ...and I mean it. I am so lucky to work with the support system I do. They make me laugh daily, allow me to cry, whine and complain when I need, and turn my mood around no matter what.
I am once again running a 5k at the end of March, something I would never have guessed I could do 5 years ago.
I am planning a wedding, something I would never have guessed I would do 5 years ago.
I am able to open the windows in my house, something I would have never guessed I should do 5 years ago.
5 years ago, I had Chiari Brain Decompression Surgery. Since then, EVERYTHING has changed. Since then, so many things feel exactly the same. How is that even possible?
As always, I am thankful, I am blessed, and overall I am truly happy. How in the world, after all this change, despite all the things that feel the same, did I get so lucky to always feel that "Life Is Good"?
