Update

Tuesday was a really great day, out of nowhere Tuesday morning his site started to heal. Except, I told no one because that doesn't mean anything in terms of him getting better. His condition can take a turn for the worst in the next second. The only thing it serves as is a lifter for everyone's smile knowing he's not in pain with a dry dressing. The secretions aren't on his skin eating it away. However that night, things took a turn for the worst....exactly like I said they could.

The week spiraled downward from there but we are managing. Last night Jacob woke up crying which he never does...found out his dressing was completely soaked with gastric secretions, eating away at his skin. He was in a great deal of pain. Today, our nurse changed the dressing and it had soaked through everything. He has a bag that is now connected to his GJ tube draining additional secretions and it still cannot drain them all. We are yet again in waiting mode. But Jacob is in tough shape right now. Mom took him back to the hospital this morning....we are all just hoping he doesn't get admitted. It doesn't make a difference where he's at, the hospital cannot do anything more than we are.

Pushing on through

I've tried to write this blog post for a while but I always find myself deleting it. This is not some cheerful, wonderful realization I've had. I'm not a happy go-lucky girl right at the moment. I don't want you to get the impression that I'm waking up with a smile on face and living every day to the fullest like life is perfect. There are things that I'm being led to do by God and I'm anything but pleased with the way he's showing me. But I do not run the world, I do not have any answers. "All I can do is be obedient." (This Is Our Time). 

A new wave of devastation and darkness has bestowed itself upon this family. Every day has its new set of challenges to overcome but at the end of the day, it all comes down to loving everyone to our full capacity. The last few nights have been lonely and dark; full of tears. It is not a cry that I can sit on my bed and just pour my heart out with. It is out of anger, hurt, tragedy, and frustration. It is a full body experience; muscles tense, arms thrown at the floor or wall and still being left with a feeling of helplessness. It is like the feeling you get when you need to stretch and then when you do stretch, it feels good because you were able to release. That is me and crying. The only difference is that the feeling doesn't go away no matter how many times I release.

This is not a path I wish anyone to walk, I wish this wasn't happening. I find myself waking up for today. I don't even bother to think about tomorrow anymore. This horrible, tragic, experience has changed how I view the entire world around me. I can't go on Facebook anymore and look at a picture as if it were just a picture of a person. It is a human life; a living soul; a creation of God's; impacting the world one little breath at a time. The constant stress I've let succumb me throughout my years to the point of mental breakdown is not only ridiculous but it's also nothing compared to what suffering this little boy has been through.

I don't dare complain about the amount of homework I have, a job I don't want to go to, a boy that broke my heart, the annoyance of an asthma attack...I'm so grateful and blessed that God gave me another day. There are other people out there suffering more than I can imagine, one being my brother. I've spent so much time complaining and struggling this year with homesickness and I've only recently realized that the reason I wanted to transfer back home was because of Jacob. One, because it's been a roller coaster all year with the state of his health and also because I think somehow in my self conscious I had this idea that if I were closer to home and could relieve my parents of some of their duties they would be better apt to take care of Jacob. But they nor I can save him. Me moving back is not going to save my baby brother; his site is out of our control, apparently it always has been.

Last night, I felt a strong pull to run into the arms of Jesus, I so desperately wanted to. But, at the same time I didn't because I'm mad. I'm mad that God is allowing my brother to go through this. I was honestly beginning to wonder if he was listening. Such bull for me to even dare  question him. I turned my head away from God and he was still there with open arms and love. How do I know that do you ask? Well,  I was led to watch a movie last night, This Is Our Time and part of me wishes I didn't because my mind sped to the worst outcome for Jacob. However, it was absolutely perfect. I felt that God was speaking through this movie...everything that was said and explained...I honestly thought God and I were sitting in a room together and he was telling me all of of this to my face. It focused on the reason for God's people on Earth. Some accomplish what they are supposed to do earlier than others and are called home sooner. Some have a much clearer path than others and some people, it takes them their whole lives to accomplish all that needs to be done. Although, in some respects, what I just wrote is not correct. The movie was emphasizing that it is not about what you're meant to do for God but it's all about WHO you are supposed to be for him....

I'm here writing this because I want to say something. My brother is taken care of. God has not let him go and never will...Jacob is in the best hands imaginable. So although I may carry on about how sad I am and that I don't like what's happening, it's not my choice. You have to learn to praise God like you would when life is good. That overwhelming feeling of peace and love you feel is always there. Praying because you have to and because you want to hold two different meanings. It's easy to write about how blessed you are when life is going well, I see it all of the time on Facebook and Twitter, I myself do it, even on this blog. It's much harder to write about the glory of God when something is not going your way. That being said, I'm trying my hardest to make the best of what I have and every day is a struggle. But I do it not only because it's the right thing to do but because I really want to.

God be my strength, I have none

I hesitated posting this so soon for many reasons but as you will soon understand I can't take the time to update everyone individually. Thank you all for your constant prayers, you have given my family and I extra time with Jacob. As I've mentioned, my brother's gastric secretions are leaking through. His surgery didn't work. When he was in surgery they found scar tissue and granulations inside which means the gastric secretions are eating away his insides. I've kept the hope for so long but I've been beaten down. My loving brother; my world; my hero; one of my greatest blessings; he's not doing well.

If you think I typed that without crying you're dead wrong. I'm working on it though, I need to move on beyond the tears and be there for him. I may not get there tomorrow or the day after, but mom assures me it will happen. She says I'm already "clawing my way out" whatever that's supposed to mean. The point is, that this is not about me or anyone else. This is solely about Jacob. The main focus is making the most of the time he has remaining. There's a thing him and I do and it's called green hands...you say "hand" (hold your hand up), say "green hands" (hold both your hands up), and then yell "yayyyyy!" He goes absolutely ballistic with laughter! It's so dumb and my family makes fun of me for it but I will do it 6 million more times if it makes him smile.There are so many random, special things we all do to make him laugh and they have all become very significant.  Significant in that they are taking on a different meaning. I'm not quite sure how to explain it.

In addition, he's not been one to enjoy being held and it's all he wants now. My family is to the point where his happiness and showing him he's loved are the most important elements in his life. We aren't going to stress about his site and what we cannot change. We know the final outcome; we don't have to know the reason or even understand it; we just need to make the best of what we have. So, we're taking a family vacation to Disney this summer....Jacob absolutely adores Mickey Mouse. He's never been on a plane before and I'm so excited for him! We are going to give this child the absolute best time we can.

For the past two weeks it seems as if every movie on TV has been about a young boy who has a terminal illness and his family is coping with knowing they are going to lose him. No joke. Literally every time I go to watch something it's about coping with the loss of a child. Then when Pandora starts playing nothing but songs about finding strength in God after loss...I'm putting the pieces together now and coming back to reality. I've been in fantasy land thinking my brother was going to survive this. Every day counts, even today, and you know why? He has a respiratory infection right now. I had a very stressful day yesterday working with my dad to keep him stabilized. His oxygen saturation wasn't holding and his heart rate was anywhere from 150-170 which is really not good. Today his heart rate isn't much better. He's on an antibiotic and it's not working. But we are all done fighting. We are losing this child and there's not a damn thing we can do about it. With that said, I've asked for you to pray for his life but now I'm asking if you could please pray hat God can give him peace with the time he has left on Earth. I can't even begin to imagine what having your insides burned by gastric secretions must feel like. Think about what heartburn feels like and multiply that by thousands. It's evident he's in a lot of pain.

I'm sick to my stomach; I haven't any idea how to cope with this. I try so hard no to cry when looking at Jacob but it is indeed a great challenge. If you've been following my posts you know that I had hope. I put my trust in God and I was very optimistic. I wasn't going to let this weigh me down. I've told all of you to trust God and keep hope in your heart... try your very best. I'm trying so hard to accept God will make this okay for everyone. Right now, there is not a single Christian song or bible verse that is going to make this okay. So for all of you, God loves you. He's there for you. He's here for my family too but we are not to the point where we can reach out to him yet. I have not told you how this whole issue came to be. Some day, I will tell you how Jacob's site became so severe. Then you will understand why I'm questioning God. It was a pure act of evil that did this. That's all I can say. So as a last, heart felt request, live your life in the moment. Thrive where you are now and love the most you can. I care about everyone reading this even though I may not know you, your life is extremely precious and you're a son/daughter of God.

After Surgery

Jacob started leaking gastric secretions this morning. His sutures are in place but the gastric secretions are eating away at the skin again. With that said, it won't take much time for the secretions to eat away at the sutures. Plan B, like I talked about in my last post is not as effective as this surgery was supposed to be. I'm not here to complain or tell you how difficult this is. I'm only here to update.....we are right back to where we were in the beginning again.

~Hold your loved ones tight, thank God for another day with them, and enjoy your day~

Coming Out Saved

Dear God,

Thank you for saving my baby brother. Words do not hold enough meaning for the amount of thankfulness I hold in my heart for you saving him. You have been with my family through this entire journey; You have stuck through the lack of faith people lost during this journey and never left our sides. Those lonely nights while I was at school knowing what was awaiting me back home you stuck by me. I considered you my best friend and my God then and consider you my best friend and my God now and forever. You have given this family such great gifts even if they involve highly stressful years. The peace you give me is overwhelming but in the best way. I see it now, I see how everything led up to this point...my God you have a reason for everything, I think every one of your children should know that. Not just hear it but truly understand it; embrace it. There were many lessons to be learned from this journey and I'm thankful for every single one of them. I feel that my family is blessed after seeing your work first hand.

 Miracles, they are a beautiful thing and one of the greatest blessing you can give us. Our journey is far from over, I realize that but we are through one of the biggest hurdles that impacted his life. I'm running to you now because things are looking up but I would also run to you if things turned out differntly. I so badly what to scream to the world how you save and that your love is everywhere. I suppose that's why I'm writing this on the blog and not just telling you from my heart....so that all of the people who have been reading this blog, in their tough times can go to you for strength and know you will never abandon them; that when they think they have lost everything, you are there waiting with arms wide open, to offer them your love. I have experienced it, it is amazing and glorious. You can make a person feel safe, comforted, hopeful, and loved during the darkest of times in their life. Thank you for never leaving me or the ones I love....

I want to start out by offering everyone who has been praying for my brother a HUGE thank you! <3 You have no idea the power of prayer and your prayers saved my little brother. I cannot thank you enough, truly you have absolutely no idea how much this means to me and my family. Whether I know you or not, I am forever grateful for your support and prayers. This has been a very long journey....seven months to be exact. It is far from over but we are over one of the biggest hurdles. We need these sutures to hold for about 30 days; it's difficult getting them to hold for even two weeks but his doctors are hopeful. 

Does that mean everyday we will have about a five minute anxiety attack every time the dressing is changed to check for leakage and loose sutures? Absolutely. If the sutures don't hold then we go to plan B. There was no plan B until he entered the hospital yesterday, they hadn't thought of it until yesterday. We would all prefer if it didn't come down to that plan though because it's about as difficult as the surgical process and twice if not tripple the healing time.  But the major celebration (I choose to call it that) is that the fears I have been expressing in past blogs are no longer a major issue. I suppose it could still happen but it's slim...I will continue to pray (just in case). 

The Day Before Surgery Part Two

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

The day before surgery

As you can imagine it is very high anxiety and stress in this household today. The sutures that were just put in aren't holding (huge shocker). So surgery is our very last hope. I was talking to Jacob's nurse who is a strong believer in God and I was expressing my concern about the road we're headed down with him. I was saying that I hope God's plan is not to take Jacob away from us on Earth and she mumbled "yeah" you know like when you can't say much or you don't know what to say? Forgive me for being sensitive about this subject and that I'd pick up on that but it's true. Jacob's surgeon and our day nurse plus our family are all very concerned, I can measure the amount of hope and confidence they have in the success of this surgery in a shot glass. It is that bad. I'm not saying I'm not nervous, heck my stomach is in knots right now and I can't sit still. But I believe and trust in God. I'm not saying my faith is perfect, it's far from it but for some strange reason I seem to be the only one who is depending on God. That doesn't make me special or some shining star type person. I'm just as scared as everyone else but God has this, he's not going to let anyone fall. The feeling of hope and trust I have in God is infinite, there is no limit and I don't feel that everyone feels that way. I'm getting pulled in the wrong direction by many; my mom's friend's five year old son was just diagnosed with stage 4 bone cancer last week. Another one of my mom's friends daughter's three month old baby has a mass in her lungs; she goes to surgery in August to find out if it is cancerous or not. There is tragedy and loss everywhere and because of it my mom is beginning to question whether there is a God "walking the Earth." My mom's friends daughter who has the baby with a mass in her lungs stopped going to church because of what has happened. Seriously, what is happening to the world? When times are tough you do not run away from the Lord but you run towards him. Life at home right now is extremely stressful for everyone, it is not what I had in mind for summer vacation. Most days I don't bother to put makeup on because I know I will just wash it off with my tears. But in spite of what has occurred I will not run from God. He is my comfort/my rock through it all. People all around me are dropping their faith because something bad happened and I feel right in the middle of it. It's like the devil is screaming in my ear through other people that God is not there to help or that he won't help but I keep telling myself that it is all a lie.

Today is a blessing

I can't not post, this is my only release besides praying. So with that said, I'm still going to update this blog. With every illness comes its good and its bad days. Today was a better day than the last week has been. It was nice because our family finally got to breathe. Although it may not last long, we take what we can get. He went back to the hospital today with his site being as awful as it is and put yet again, new sutures in. In addition as a last-ditch effort, they are going to go forward with surgery next week. I guess what my mom called it was "revising" his stoma. In other words, instead of creating a new one which would cause massive complications, they are going to try and reshape or reposition his. For me, this is my answered prayer, I'm holding on to everything with this surgery next week and enjoying that fact that there is hope left. If the surgery doesn't work then that really is it and my brother will be earning his wings....I don't think we have a year though.

His body is already showing signs from the severity of the condition of his stoma. A good heart rate for him to have when awake is anywhere from 100-120. When he is asleep, generally we look for anywhere between 60 and 95 (it depends on if he's in a deep sleep or not). Well this is something new but he just started to have an elevated heart rate- 130 or 140; you would think those interval changes wouldn't be that big of a deal but for him it is, an elevated heart rate tells us that his body is under stress somewhere, whether it be an infection or dehydration. Any way you look at it, it's not good. They are pumping a large amount of fluids in through his stomach, not even his feeding tube anymore to try and rehydrate him. He's on antibiotics for who knows what...I assume the chance for infection with a hole in your stomach is extremely high. He's also on medication to decrease the acidity of his secretions so that if they leak out, they don't do as much damage (at least that's the hope).  He's exhausted and not very smiley today; his urine output is low and it's very concentrated; all a result from the dehydration I'm sure. He's not getting a proper amount of feeding and water because they are all leaking out of the stoma. It's a struggle to maintain his weight which is why he is so thin. This is the point we were at in the beginning,  he became so dehydrated he was admitted to the hospital. That's when they discovered the problem with his mic-key button and replaced it with a GJ tube. 

 I realize this is more factual information than usual but these are things that make a difference every day. When he gets a breathing treatment you expect his heart rate to increase a little bit because that's the side effect for respiratory steroids. However, 120-130 is okay but 151 is definitely not okay...that's actually reaching a danger zone. A heart rate that high is one you want to get control of quickly because they body is really struggling. In fact, after I finish this I'll probably go and check to see if its decreased. Jacob isn't the same little boy he was even compared to yesterday. His activity has significantly decreased and he cries when he has to sit up. All he wants to do is lay in bed which is a sign that something is VERY wrong. He's usually constantly trying to roll around his bed or sit up, he scoots himself to the opposite side of the bed and tangles all of his wires, making alarms sound from the signal being cut off. But today he would lay in one place. If he moved, it was to roll to the other side.

Evidently things continue to worsen, we are on a constant spiral downward. I had a major breakdown last night~ thought back to when I was in high school and Jacob would be on the floor rolling around. Any concerns we had back then were respiratory and I thought I was going to lose him back then, I had no idea that I would be blessed with another year with him. But here we are, looking at losing him as a very strong possibility. The doctors can't even look us in the eye anymore and react with that dreaded silent gasp when they look at his site. It amazes me that a year ago today he wasn't in a brace and we were probably enjoying a normal day. I was looking forward to college orientation and my birthday without a single thought about loss. I was so focused on the future but today, a year later,  my family takes every hour as it comes. We expect nothing and plan very little. That's all we can do, as things continue to get worse, we are learning to enjoy every moment whether good or bad because it's a moment we have with him.

 I cannot sugar coat this. I've been doing that. Maybe I'm writing this to convince myself that this is a life threatening condition, maybe I'm not just venting it out. You just look at him and think there's no way he can leave us on this Earth but then you look at his dressing with all the secretions soaking through or his lack of energy and you're quickly brought back to reality. I pray everyday and someday soon I hope to update this with some positive news. For the time being though, this blog serves as an outlet for me. If horseback riding weren't so expensive that's what I'd be doing instead to organize my thoughts. 

For every raindrop in the sky represents a tear fallen for the innocent

I probably won't be posting as much anymore, it doesn't look like things are going to change and I see no point in stating the obvious.  Today is a little brighter only because I decided to make it a little brighter. In fact, Jacob's site is absolutely worse today, I think this is the worst it's ever been. I don't like to think about it but it looks like this little boy may be earning his wings soon. At most, he has roughly a year left with us. The gastric secretions are eating away his skin, soon they will affect tissues much deeper. You can see his ribs- see them expand and release with every breath he takes. His arms which used to be squishy, are thin; every curve to his arms is visible. He looks at you like he knows what's going to happen. I can't even finish this sentence without crying. I always prayed that Jacob would make it to adulthood but it doesn't seem like that's what God has planned. He needs a miracle, without it he won't make it. If there was a way to showcase my anger and devastation right now through this post I would, but I cannot, so as calm as this post may seem, I am feeling the complete opposite. For every raindrop that has fallen out of the sky today, each one represents the tears we have all shed for Jacob. Life sucks, shit happens, tragedies occur, and this is one of them.

 I understand the temptation of wanting to stop praying when you get a bad result, but isn't that what strengthens us? I refuse to believe he's left us here, if anything he has his hands on our shoulders. I know God loves us, I know he loves Jacob and he won't let the suffering last long, whether that means a miracle or Heaven. There's much comfort in knowing God is taking care of him.

I'll leave this blog with a positive thought~ Jacob has three rosaries on his crib and he's been playing with them. He's never touched them before, I doubt he knew they were there. But he holds them tight now, keeping them close. I feel more at peace at this moment, like God is standing over me while writing this but in some ways, I don't want to, because I don't want to accept that it's more than likely I'll lose my baby brother. Then again, I know whatever happens is all in God's plan and he will get us through everything. For now all I can do is continue to pray and enjoy the precious moments left with Jacob. That doesn't mean I won't cry, my heart will forever ache for this child but it does no good for me to mope around. We need to give Jacob the most love and happiness we can for the time he has remaining. As difficult as it all seems, we need to put our stress, anxiety, and fear of the unknown behind us. It doesn't make a difference how cruel we think this is, it's what happened and there's nothing any human can do about it.

I still hold hope in my heart that God will save my brother, that his suffering is for a greater cause; out of nowhere his site will begin to heal....  And with that, I took over the Novena because mom won't say it anymore. I know God hears our prayers...I feel it in my heart and soul. I'm still petrified but God has given me comfort, I think I'm the only one in my family who feels his comfort right now and I'd like to find a way to spread it to the rest of my family. A word of advice~ never take an ordinary day for granted. Those are where the best memories are kept.

Where are you God?

This blog is the only thing giving me some piece of mind. There isn't anyone I can talk to about it, nobody can fully understand the situation at hand. I mean, there's not much for people to say, things are at an all time low. I saw Jacob's site today...it looked awful. I'm sick with fear; it feels like someone just took a monkey wrench stabbed it in my stomach and just keeps turning it. My appetite is completely gone, I have no interest in eating. Everything looks revolting. It's not because I'm disgusted by his site, it's because I'm disgusted by the cause for all this.

Today was tougher than yesterday....today just plain old sucks. Jacob was in my care this morning because our nurse called out and mom had to do some other things. That's no big deal, I thought I was doing well making sure he didn't twist and keeping him busy. Yet doing it in a way that wouldn't be cause for any ripped stitches. But the final test was when mom went to change his dressing. Those few seconds before all the bandages and splints are taken off/unraveled are the most stressful moments of the day. Today I felt let down, I'm not to the point where my mom is, feeling abandoned by God but I don't understand regardless of our efforts nothing works. It's not even a little opening anymore, it's a gaping hole in his stomach, several layers deep. We aren't talking about a little opening, we're talking about a hole so large that you can look down and see the tissue lining of organs. I had no idea it was this bad, I really didnt. I want to scream, I've cried already- tears don't seem to be working. Does God not see how much agony this child is in? He couldn't just heal this damn thing and let us all live somewhat of a happily ever after with Jacob? I'm horrified, screw summer and screw school none of that matters right now. I screwed up freshman year anyways. There isn't much I care about these days, nobody wants to look at the bright side, there is no bright side to what happened. God hasn't left us or Jacob, but I'm caught between not knowing who to follow; people around me or myself.

Evil has many forms

If you've had a really great day today I suggest you don't read this post right now. This is anything but optimistic, I don't think my writing can get any darker. I've been home for five days now, I'm emotionally drained and physically is not far behind. I try my best to be a source of hope and faith, find the positives of every situation but not tonight, no. I haven't got a smile to offer the world, my face is dull. I tried to watch a movie tonight to get a laugh out of me but I wound up turning it off. I couldn't sit through it because I don't wish for life to go on during this time. My world is essentially standing still and that's just the way I like it because it gives me more time with Jacob. I cannot sit here and enjoy my own company when I know others around me are suffering.

I suppose this is a good time to offer up the back story to what may just cost my brother his life. It all started in October when Jacob got a new night nurse to take care of him. I was at school so I didn't get to meet this nurse until Thanksgiving so I cannot conjure up a proper description of this person, I really didn't know them at all. Well when this whole ordeal with his stoma happened it was okay, doctors were able to get it to starrt to close up and we thought we were on the road to recovery. Come to find out, that mysteriously one morning after the night nurse's shift he was bleeding; his dressing around his site was almost fully coated in blood. Jacob had his site sutured up and again it was a waiting game. Soon after when things started to look better, the stitches came out again. But this time it was much worse. Not only was their blood again but gastric juices were leaking out. In your stomach you have digestive enzymes and they require a low pH to breakdown macromolecules. Also, proteins begin their initial digestion in the stomach so a low pH is essential for denaturing (unraveling) a protein. Figure a neutral pH is 7 so 2 is extremely acidic. With all considered, the acidity of the gastric juices started to eat Jacob's skin alive, it just burned right through it. Horrific right? Now you know why my baby brother who had every chance of living may not anymore. His stoma has been torn beyond repair and unless it's in God's plan for a miracle......I'm not sure.

I thought today was a better day, my mom changed the dressing around the site and it was completely dry which means no feeding or gastric secretions had leaked out. That would indicate that the site is trying to heal and close. However, something changed later in the day. I didn't ask questions because I see no point in it anymore, it's not hard to put two and two together with Jacob. His site opened again....the stitches that had been holding so nicely today just out of nowhere started to losen. In some respects, it's equivalent to getting a rejection letter from your top college and then reapplying and getting another rejection letter. No matter how hard you try, that top school won't accept you; no matter how hard me, my parents, and the medical team try, we cannot get Jacob's stoma to heal.

My parents are.....not the same anymore. They're quiet and don't say much. They're emotionally, physically, and spiritually exhausted. My mom said tonight 'Hope is everything. When a person loses hope they have lost all essence in life. I've lost hope and your dad is not far behind.' She's beginning to question God and if he cares about Jacob. She's just having a really tough time because this boy has already been through so much, everything that could've happened to him medically happened. Her heart is broken and she's really concerning me. She tells me she doesn't know how to survive a broken heart and I have no idea how to take that. Some days are better than others but there's not one day where the stoma isn't a disappointment. In addition Jacob feels absolutely everything. He's on pain medication around the clock and you know when he's due for it because he will just start crying and he NEVER cries.

These past five days have been really hard for me and everyone. I don't care that he's only four years old he is my best friend. The minute I walk by his crib or come to say hi he lights up. I think that smile of his is one of the most beautiful things on this Earth. I could sing the ABC's all day every day for him if it keeps him smiling. I would do anything for him (as would my parents) and the one thing we all want to do for him, we cannot. I know I say that all children deserve a life with a loving family and they absolutely do, there's no question about it. But I never said it was easy and this is far from easy. This feeling of helplessness can take everything from you, it shows you that you really don't have control and that life isn't fair. But that there's nothing you can do but live through it. I'll say this though, Charlotte was a blessing this year, it's the place that's given me my foundation for my faith. That's the only thing keeping my head above water.  I trust God, I don't have to like what he's doing but I trust him.

.With that said, my birthday is next Sunday, all I want is for Jacob to be healed. That's all I'm asking, I was going to go get tested to be a donor for bone marrow (that's what I really wanted) but i'll skip that. Just please help my baby brother.

In need of a miracle.

I don't know how to start this blog post, I'm extremely frustrated with everything right now. Jacob's stoma is not holding. We have been dealing with this for six months now and nothing is working, absolutely nothing. There are no options left, we have tried everything and anything. My parents have been nothing but remarkable people throughout this entire ordeal. They stay up all night just so every twenty minutes they can force fluids in him in hopes that some will make it into his stomach. We are all working so hard. The feedings you stick in can just pour right back out because the stoma is not closing. He's run out of options; his only option is being admitted into the hospital. A lot of good that will do. They can't do anything that we are not doing. If this stupid stoma won't close, there is nothing anybody else can do unless, there is some type of research out there that we haven't heard of. I've spent countless hours researching any type of a cure or strategy to help him but no such thing exists. Every problem documented that I've seen is helped through methods we have already tried. I'm overwhelmed and confused, my family and I are on pins and needles right now. My mom started saying a Novena that you have to say once every hour for nine hours every day. We are absolutely 100% desperate for a miracle. I can't write the whole story out right now, I need to go say a rosary or maybe ten rosaries....it just helped to vent a little of my worry. Seeing what he goes through kills me; you might as well stab me, nothing can be more painful than seeing my brother go through what he is. Yet, he's nothing but smiles no matter what happens on any given day. He won't complain, he takes everything in stride as if it were a pure blessing from God. I don't have any other way to describe it. I love him so much and just want him to be okay, I want his stoma to close so he can go back to being the four year old he was meant to be.

Where are you in life at this very second?

And we know that in all things God works for the good of those who love him, who have been called according to his purpose ~Romans 8:28
200 people almost lost their lives today. That's mothers and fathers, sisters and brothers, daughters and sons, people of God. That's 200 precious souls that would've been turned to ash just like that. What if you were one of those people? The fact that me and 199 other people didn't die tonight is indeed a miracle. By no means am I bragging, I'm stating the fact of what could have been a fatal scenario.

The scenario that has really pushed me over the edge happend tonight. On my last flight home; with the other 199 passengers. It's hard not to think about it, but I wouldn't be here typing this tonight. I'd be buried with everyone else under the rubble of a crashed plane....but here I am and all of those passengers home safe or, wherever they were headed. The point is, is that they are safe and alive. That wasn't going to be the case tonight and I cannot get over that fact. In mid air our plane caught on fire, one of the engines blew. I knew something wasn't right by the way the plane was moving and how it sounded but I didn't think too much of it. As soon as we landed we were swarmed with fire trucks. I couldn't see the actual truck because of all the smoke but I saw all of the flashing lights coming towards us. No, I'm not stuck in the "what if" "past life" thoughts I'm stuck in thinking about that I would not have been satisfied if I died tonight. There is a whole big world out there, even Charlotte alone and I have not completed God's mission, I don't think I'm anywhere close to finishing any of his work he's called upon me to do. In addition, living everyday with God in mind. Not so much with thinking about him but every action I do; doing it for the love of God; allowing Jesus to shine through my body; the temple of the Holy Spirit.  So with that said, how was I so incredibly blessed to witness our savior coming to 200 people's rescue tonight?

The fact of the matter is every single day is a blessing. Everyone hears it, that every day is a gift but until you're put into a situation where you may lose that gift, you don't know what all you've lost. It's really about the saying "you don't know what you've lost until it's gone." But in the case of our lives, it will be too late once we lose that life. So I'm here tonight and every day after, living it as a gift from God and I'm telling all of you to do the same. Also, I've linked a song below that I would like you all to listen to. It sums up everything I'm explaining in a nut shell. I find more meaning in music then what people tell me sometimes so if that's the case....listen to it!

I say the rosary every day, even if I can only do one decade at a time over the course of 24 hours, I say as much as I can. It's my protection, saves other souls, and blesses me beyond words I can explain. God's works are not explainable, it's something you need to experience for yourself to truly understand the power of his love and glory. I'd be lost without it and I find it as my comfort; being far from home I would sit in my dorm room and pray the rosary for hours. You just know God's presence is there; it's overwhelming and in the best way possible. I'm tearing up just thinking about it.

Oh, and you know what? I said my rosary today. I was waiting for my friend to wake up and take me to the airport so while I waited I started it. Then on my flight out of Charlotte I tried to finish it. Do I think the rosary had a part in lives being saved tonight? Absolutely. And who's to say that I'm the only one saying prayers? I'm sure there are many other people on that flight who prayed or had others praying. Most of the plane didn't even know we were on fire, I didn't know until we finally landed but it's still crazy to think about. That's what I want you all to think about tonight, not about me and the almost plane crash but your individual lives. If something were to happen would you really be happy? Do you wake up in the morning happy with your decisions? Do you feel God's love in your life or are you trying to provide your own love and happiness? Not every day will be a good day but it is nothing you cannot turn around with the help of God. Your souls will be much lighter and brighter if you allow God to shine through them. How do you do that you ask? Pray and don't stop. You can ask God any question you want and you will get an answer. Don't lose hope and don't give up, I'm praying for all of you.