I'm writing two posts tonight because I need the added support. Writing is all I want to do, it is the only way to carry out my emotions for everything that is happening around me; and it gives me the tears that are falling from my face an explanation. I feel like such a burden to the people around me and I do not wish to put these troubles on them. I've shut out many of my friends because I do not know how to juggle both them and family, I also cannot relate to them. Everything with Jacob has just taken a huge toll on everyone emotionally and physically. Those movies that they show where families are staying strong together and smiling is honestly in my mind utter bullshit. Tonight, the night before surgery we are all very distant. This house is extremely tense right now and far from smiling. I so badly want to bring this family together and be united as a symbol of hope...as difficult as that may be. But we are all petrified of losing this little boy. Think about it, if the sutures aren't holding now, what makes you think the same sutures they are putting in during surgery tomorrow will hold?
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I went to my other brother's elementary school concert tonight and in the orchestra there was a little boy who looked exactly like Jacob, an older version of course. I cannot describe it but my entire mind went blank. Suddenly it wasn't about what song they were playing or how I thought they sounded. I just thought about this little boy who looked like my brother and tried to keep myself from crying. I want so badly for that to be Jacob, I want him to grow up to be able to be sitting in that exact seat. Your life, hopes, dreams, and values are really put in perspective when you're dealing with a fatal condition of someone you love. Your dreams to travel the world and help others is set aside, it's not forgotten but it's not the main focus. You stop looking to the future and thank God for the moment you are in right now. The little things that children do to tick us off or make us proud is worth more than a silly trip to Los Angeles or London because the world is nothing without the people you love. It makes every day something worth smiling about. When one of my other brothers does something as simple as coloring in the lines or giving me something without a fight when I ask, it's probably one of the most rewarding experiences of my existence. Seeing them thrive and reach different milestones has so much more worth than it ever has. Of course I've always been proud of my brothers but this is a whole new perspective. Knowing that Jacob may not ever reach these milestones is extremely difficult to grasp because it's a definite possibility. That's why the most insignificant things carry on deeper meaning now. When you see children learn their ABC's or have their first school concert it's almost....magical. A little life who has accomplished such a task; something they will hold on to for the rest of their lives; an important skill; a milestone marking a goal reached....life is beautiful.
In addition, seeing te oldest of the boys in concert tonight....they had a song where they had to use their hands in choreography and my brother couldn't do it because he had to hold on to his canes. The first thought that entered my mind was I wonder if he feels bad that he cannot participate. I honestly felt heart broken for him because he was the only one who wasn't doing it. Is that bad for me to say? I feel like an awful sister for thinking that but I'm so proud of him anyways. It's things like this that we don't think about; Jacob may survive but the struggles he will face for the rest of his life are more than most of us will have in our lifetime. He can't walk, he can't eat on his own, he doesn't breathe completely on his own yet...the list goes on. As much as I'm describing, I will never stop believing in him though; if anyone can defy the odds it's Jacob. Gosh I love him so much. But as his sister and this goes for all of my brothers, there are things they cannot do or do in a different way that is noticeable to the outside world. I don't know what it's like not to be able to walk. Or not be able to communicate with others unless through sign language and have to depend on others all of the time. These children go through so much; I will never understand what they face everyday of their lives. I just want so much for them and never want to see them upset or their self esteems plumet; it breaks my heart to see it as their sister. I'd do anything for them but I cannot walk their path for them....the one thing that may help them the most I cannot do.
One thing at a time though right? The main focus is Jacob, I'm so nervous and scared, my stomach is in knots and continues to get tighter. It's not just about if the surgery will be a success or not but will he wake up from surgery tomorrow? There are many unknowns and worries, sure you may argue some are pointless but as far as I'm concerned everything counts. I'm petrified for the outcome, I do say God will take care of everything and I know he will, I feel him by me now but I'm still scared. Things will be okay in the end but it doesn't mean they will be okay every single moment. I'm just...scared. Simple as that, I cannot say anymore but scared. I feel God's peace at this very moment which tones the worry down but I'm literally on my own with this one. And I just want to say, it's really quite difficult to be strong. I fail at it many times but there is no room for failure in anything with this situation. And now I'm at a loss for words, I don't think there is anything more I can say without repeating myself. If you read this, as long as it is, please pray for my brother. Thank you<3
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