I have spent countless hours on the internet researching ANS and its many fingers of offset sister diagnosiss' and although a form of progressive Dysautonomia is not cureable & hard to fully control, I find it very difficult for myself to feel as though I need to create a Bucket List. Yes its true I have all the most dangerous ailments of the syndrome that basically are the Grim Reapers dream list but to give into it as factual seems to me that I am giving up & that I am not willing to do.
First of all, I have my children to grow old with & enjoy their many accomplishments as they cross each milestone in their life. Being a mid-40's father with biological children ranging from just shy of 2 yr and oldest just shy of 19, then my lovely "adopted" daughters 18 & 21, the mere thought of not seeing the next big thing in each of their lives is just overwhelming to me. If I had to define Bucket List for me based on all my medical abnormalities, it would be a never ending and changing list of things needed to be accomplished. Yes I want to some day have dinner with the Manzo family, who wouldnt, thats truly one of those items that you put on a Bucket List if thats what it takes to help you reach the cemetary a completed soul. However, for this Jersey guy, seeing my youngest turn 2 in November, thats a goal, followed by her turning 3 the following year and so on. My son turning 7 was awesome, I was there and for his 8th, I plan on being as well. My oldest biological turning 19, well she lives in SC so wont be there for her birthday but I want to see her over the holidays if I am feeling well enough, another goal followed by the same the following year. My other two Angels, well got to be the proud dad seeing one get married, the oldest so the next venture, being a grandfather, this too I will be there. The 18 year old who has just turned 18 this past April, seeing her find her path in life will be a happy day for me and each year she stays on this path, I will be there to raise a toast.
I wont lie, I wake up sometimes in such bad physical condition that I can hardly walk the necessary 12 feet to my medication in the kitchen and on days like that I find myself just sitting on the couch all day long only using the bathroom or getting something to drink. I dont ever sit there feeling sorry for myself, or have a "why me" perspective, instead I took up a hobby, Twitter. I now follow some of my favorite people and tweet with them, comment to others or abuse the haters that cross the line with my favorites. Its all about making the best of your situation and never giving up.
I made a list when I was 16 of things I had to do prior to getting married and some of the things I cant write here because this is a family blog site but never the less, at 16 naming some of the items were relatively outrageous at the time and just seemed as though the list was going to be a complete joke rather than an actual premarriage contract. Well as fate would have it, I actually completed that list before I got married, the last two items were when I was 29 and both accomplished with the same lovely girl. What turned out as a joke one night between two alcohol induced teenagers, actually became a reality in my life. So after the completion of the list I realized that by setting your mind to something when you have a determined and driven personality, you need to carefully watch what you wish for. Hence the reason a Bucket List is never an option for me.
I have not put forth the fulll effort I truly want to as of yet in regards to St Jude Childrens Hospital. My inability to work, limited income & resources have me on a very low scale monthly donation regiment. I so badly want to make an epic donation, one that truly honors the memory of my first love, Katie who lost her battle with luekemia back in the late 70's. I also want to become involved with charities closer to my home base, Bergen County NJ. Tomorrows Childrens Fund & Project LadyBug are two that I hope to be a part of very soon. TCF was founded by several parents & one of those parents was a very close family friend of ours. He built a large wing onto Hackensack Hospital, had countless fund raiser with numerous high end celebrities and sadly, with all the money raised, all his resources, both him and his daughter lost their fight with cancer. You can have all the money in the world, without your health you are poor.
As for Project LadyBug, well its not only a Jersey based charity but its organized by two women I admire not only because of their continued class on TV but by their words of wisdom. Manzo sisters Dina & Caroline from Real Housewives of New Jersey, put forth their efforts to make a difference in the lives of children stricken with cancer. I had no idea this charity existed until I began to follow Dina on Twitter, she'll be forever idolized by me for making a difference with this charity as well as Caroline.
So you can see that I have too much going on currently to even consider the idea of a Bucket List. Dysautonomia may control me but it doesnt own me. Everyday I open my eyes is another day I beat ANS and its many capable ways of extinguishing life. I am a stubborn Italian/Irish, Bergen County native, born Aries guy who refuses to allow an annoying Central Nervous System malfunction to disturb my goals. I'll continue to make fun of it, make light of it, beat it. Thats what I do because I can!
In closing I want to just say that what brought this post on was a tweet I received about a girl who wanted to trend as one of her goals associated to her Bucket List. She was a 15 year old girl from the UK who has a terminal form of cancer. It really hit home for me to realize that a 15 year old girl has accepted her fate and has found the courage to fun with it and do what she needs to do in order to complete her lifes goals. As much as its extremely depressing because of her age, its also triumphant if it truly brings her peace. My prayers go out to her and her family. For a girl I never met, who lives an ocean apart I am pretty sure I'll never forget her trending attempts #alicesbucketlist. Thanks for reading
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