Someone Is Looking Out For Him

My family and I are pretty sure AJ sees his angels….

He will smile in your direction but he won't be looking directly at you sometimes. He may look above you, next to you, or in the complete opposite direction. But his eyes are totally fixed in that particular space and he will just sit/lay there smiling. Tonight, he was laying in bed and I was standing over him readjusting one of his tubes. He pointed up and then smiled angelically. Obviously I saw noting but he kept his gaze there for a few moments before looking back at us. It is such a fascinating moment but questioning at the same time…he cannot point up yet haha. Too soon. 

With that, Jacob's surgery went well. Those of you on Facebook know that he was able to come home the same day; as he was originally scheduled to spend some time in the hospital. And having him home has been absolutely wonderful! But we have run into a bit of a problem, which we knew was certainly a major risk. Jacob is sick. Since he cannot have any floor time we can only sit him up in his high chair, wheelchair, or in bed. We can hold him but we cannot let him move around. That being said, the risk for pneumonia in any scenario involving an extended period of time on bed rest, is almost absolute. 

In Jacob's case, a change in his heart rate is our usual indication of illness. That's not saying that a change in heart rate automatically suggests he's sick. But if breathing treatments and pain medications fail to bring it down then chances are he's fighting something off. His higher heart rate when sick is his heart compensating for the increase need for oxygen. You know, when people have trouble breathing their heart rate increases to pump blood (enriched with oxygen) more efficiently. To help him, he was put back on the BiPAP machine, which is nothing but positive pressure being pushed into his lungs. His HR on the BiPAP is 107-126 compared to off BiPAP where it's 145-155. 

Not exactly the direction we wanted to go in but we all knew it was inevitable. At some point, something had to give. Other than that, his dressing looks good. From what I understand, several layers were stitched closed and now he has steri strips on the surface of the closed hole (sounds so good to say that!) One of them already started to lift and that's not so great because that shouldn't be happening yet. Certainly not a horrible thing but not something we want happening at all this close to the surgery he just had. Nonetheless, all seems to be well with his site. Now we just need him to get better. 

Finding faith again and preparing for brother's surgery tomorrow

I wanted to blog tonight as it's the night before my brother's surgery. It's a bit like Christmas Eve because it's full of anticipation, excitement, and peace. The surgery may not work but it also might work. There are many possibilities but tonight, I can focus my heart on the successful possibility. I have no idea what tomorrow holds and I am very nervous. However, I know that God will take care of this.

This is my journey. My mom says that Jacob was put in our life to show us how to do our walk in life. So all who have been reading this, have been following me since my first blog. Although this has been a year long battle with my brother, I didn't start blogging about it until 3 months after. Nonetheless, a year ago from today, I was only at the stage of questioning the events. Evidently I still question, but the difference is that I have no expectancy for an answer. Questioning is a natural response for all of us, it is how one learns. But it is not always paired with an answer. At least, not right away.

Through this past year, I have learned many life lessons. We are not talking about just one or two no, we are talking about 10 or more. With that, I have received answers to questions; not necessarily the ones that I put on top priority but they were certainly necessary. One of them was about a guy I was in love with.  Some may argue that there is no "was" and that it is always "is." And you're absolutely right, I am and always will be in love with this guy. However, not in the same way. The reason I'm mentioning this is because this burning question distracted me from what I knew truly mattered.

I used to ask myself "Why did I still feel this way" and "Was anything going to happen?"

God's answer: My love for him was pure and true. His was not; you can obviously say "I love you" and not mean it. And he didn't mean it. That's the big hump I had to get over, I loved him, he didn't love me and that was okay. He was put in my life not only as a lesson but to help me through some very rough times last year. He introduced me to the bible and brought me to a church that still today, I hold very near and dear to my heart.

It's pathetic and sad but all that my brother taught me over the summer was lost when I focused on this guy. It was by no means the guy's fault, it was how "emotionally invested" I was. I got caught up in trying to develop a friendship that would never work. I wasted an entire semester on someone who was only passing through in my life.

I know this doesn't apply to anyone in particular but maybe the situation is somewhat relatable. I see so many Facebook statuses and tweets about finding "the one." Guys don't really do this but girls, we are all guilty. We post statuses about wanting that special someone to cuddle with, watch movies with, go out to the city with, and be there to help us through life's toughest trials. We are all asking for someone to be there in the good and bad times. Though in reality, we have already been given someone….GOD!!!!

~Will He leave you? No.
~Does He cheat on you? NEVER.
~ Does He answer when you call? Yes.
~Can you trust him? Yes.
~Does He LOVE you? Forever and always.

I know you can't cuddle with him but he can give you graces that are more valuable and entwined with His love…maybe he's not exactly watching movies with you, but he is actually with you. The point is, God is always there and He never leaves. If we would stop focusing on temporary matters, happiness could come more freely and from the right source~ Heaven sent.

As serious as everything has gotten with my brother and the inconsistency of each day, I've been taught one very important lesson. Nothing matters more than God and my family. God was the one who gave me my family so, that's how that works. Without God, I wouldn't be here and I wouldn't have the love from Him to realize what He has given me. I'm nineteen, almost twenty and it's taken me that long to realize how important family is.

 The reason I am writing about this, is because it took this journey to learn what matters most in my life, what I'm living for, and how I need to live each day. With that said, I cannot possibly write out everything that has changed in my life. That would be too long and besides, I feel that that is something between me and God. That's my personal life and it's best that you analyze your own.

When you take apart your life, you'll find that the less important details fade away and only the strong and consistent details stay. When something important to you is in danger of leaving, you begin to do some serious prioritizing of your life. That's what I did when I learned how life threatening Jacob's condition was. Suddenly, that guy that you have always liked fades away, the want for new clothes is no longer mentioned, friend time becomes less as you work to spend more time with family, and your faith, it begins to develop an iron (only because I think that's a strong material) guardian around it. Above all things, that becomes the center of life. And to be honest, when you realize how truly survivable life is without all of this extra stuff, it is a gift that can never be returned.

I am stressed to the point where I think my body could shut down from all that is happening around me. I look at other 19 year olds and realize how ridiculously different my life is. But I am more HAPPY than I've ever been in my life! Allowing God into my life is what gives me that irreplaceable joy and content feeling in my soul…any day and any time; good or bad; scared or content; relaxed or enraged. I don't always do the right thing and I don't always understand God's purpose (like with Jacob's battle) but the one thing I do understand is His love.

I am tearing up because I know I'm going to be okay; my family is going to be okay. That blog about "Thanking God" well here's the other half…I have been selfish and allowed my pride to overtake everything. What I wanted was this guy and that's not what God had planned. I wanted this job over the holiday season but God brought me home instead. I want my brother to live a long life and to walk on his own. God has never failed me in doing what's best. I think I know best but I do not. I'm a little human who gets myself into troubles that I cannot get out of alone.

In truth, I have been delaying this post because I was mainly trying to get to a better place with my faith. I knew I wasn't where I needed to be and tonight felt like the night that everything started to make sense again. For the first time in a long time, I felt like I did over the summer; allowing God back into my heart fully; not when I wanted or needed him. But because I simply just love him, and want him to be there.

I want this surgery to work tomorrow~ this be it, the end of the fight. Those of you reading this, many of you think the same. But I know very well by now that there is a possibility it won't work. We don't aim to give my brother a quantity-full life. We aim to give him a quality life. I know some of you reading this are going to tell me to have hope and faith that it will work out wonderful. But you need to understand that we need to prepare our hearts for the worst. I am not lessening my expectations but I am keeping an open mind…for the good and bad. When the days become so inconsistent, you need something consistent to hold on to. I hold on to God knowing and believing whatever happens tomorrow and the days to come is how it's supposed to be. That's not wrong.

I have been so darn focused on things that really don't matter that I've lost sight of all that matters (again, I am not explaining all; refer to my beginning blogs). But tonight, I feel strong; all that I care, whether I'm saddened or overjoyed, is I want my faith and hope to hold strong. I know I've mentioned before that things are done as a last resort but I really mean it this time. This is the absolute last thing we can try. There is nothing that anyone else can try that hasn't already been done. If any other options are brought to the table, it's purely another God given miracle.

Back to the hospital~ praying for no admittance

Another day, another let down. Today started out great, normal day running around the house doing things for mom. But the dreaded tone I try so hard to forget crowded my every thought. Nothing else in the world matters at this point except what I feared happening. You could hear the nurse downstairs with great dread and sorrow, repeatedly say "oh no" and "this isn't good." After hearing that about 3 times and the frustrated sighs I ran downstairs only to find Jacob's shirt completely soaked. That only means one thing~ his site is leaking. It's like those shows "ER" and "Grey's Anatomy." Envision the surgical scenes where the doctors are piling gauze on an open wound when operating. That's about what this looks like; you just see the gastric secretions pouring out. There are a pile of paper towels or baby wipes (really whatever you can get your hands on) and you just keep adding more to his site. It drains so fast and so much that it can be difficult to get it to stop.

Today is just too much for me so when all of this was happening, I ran upstairs. I couldn't take it. My mom had called in to check on how things were going today and the moment I had to tell her about my brother's site is a melancholy memory that I will never forget. It's almost immediately that the moods change; mom could tell my voice was quiet and sad. The moment I told her, her tone changed too. This has been a year long battle with Jacob. Everything we try just abruptly fails. No doctor, surgeon, nurse, or any human we've been in contact with thus far has ever heard of such a thing. You cannot treat this by the books, it requires out of the box, invasive, creative, problem solving. Little Jacob's life depends on it.

I just don't understand. I say that a lot because it's true. I really don't know why any of this is the way it is. Just yesterday we were a happy family, we had Jacob playing and without his oxygen, because he can breathe on his own now and it was a fun day. He had done the most moving he's done since before Thanksgiving when his stomach hurt so bad and yesterday everything was looking up. But apparently, those days are just not meant to last. They are taken from right under your feet, leaving you on the ground.

Tell me, what am I supposed to have hope for? Doctors have tried everything they've been able to think of. They are repeating past procedures that didn't work in the beginning but they're just so desperate that they will try anything at this point. If Jacob were just a few years older we may have been able to have the upper hand. If a lot of things were different, we could have this healed by now. But that's not how God has laid it out and that's not the way things are going.

For the first time ever, I will have no Christmas gifts under the tree this year. The only ones who get presents are my three younger brothers. And you know what? There isn't any materialistic, technologically advanced, thing that I want more than having my brother home for Christmas. Our biggest challenge is not that we cannot afford gifts but that we are trying to keep Jacob out of the hospital. The Christmas lights, decorations, and the tree are all very nice but they don't mean nearly as much as family does. Their value is hidden when loved ones are ill. Though I think I'm making one of the biggest requests for this year. And that's that my all of my brothers and my parents are home for Christmas. I don't want there to be any sight of stress or worry about Jacob's site. One day, is all I ask. It's not realistic to ask for a whole week so I'm just asking for Christmas…Christmas Eve would be wonderful too….but I understand if that doesn't happen.

Another Visit to the ER

It is said that you should spend part of the morning praying. It is quality time with God, for He is the only one who knows what the day holds for you. If I had known all that was going to happen today I would've hid under blankets and stayed there. What happened today was the cherry on top of the stressful sundae. I know, I'm sure that sounds totally lame but that's all I've got.

I walked downstairs at noon only to see that Jacob's nj tube was out further than it should be. It had dislodged and we didn't know how or why. Well, actually the nj tube is held by a specific kind of tape (the name escapes me). And it sucks, this tape doesn't hold anything down. It only holds down when it doesn't get wet. But the tube is placed so it is in between his upper lip and nose, so that's inevitable.

The big, crappy, part of the day is that the tube wasn't in the jejunum anymore. We noticed Jacob's tube feeding coming out of his open feeding site. That means, the tube was in the stomach and not his small intestine. The nj tube was put in Thursday. It is only Saturday.

My dad and I took Jacob to the hospital to get the tube placed back in. Recall in one of my previous blogs I said that Jacob hates this particular procedure and just cries. As soon as we got to Radiology and entered the x ray room he started crying and he wouldn't stop. He knew exactly what hell he was about to go through and he couldn't do a thing about it. What the doctor did was since the tube was already in his stomach he didn't want to pull it out and put a new one in. So he took a thin wire and put it through the tube. That enables the doctor to control the movement and direction of the tube by making it more rigid. Keep in mind though, it's not simple. Jacob has Prune Belly Syndrome so his anatomy is different (so they say).

I stood by Jacob's head and saw the doctor push the tube far up his nose and then pull it out and push it in and pull it back out. He had to have done this 50 times or so and every time Jacob became more and more upset (with good reason might I add). You can do a lot to me; break my heart, belittle me, punch me in the stomach 20 times, stick a needle in my neck, but watching my brother go through this misery is the worst thing I have ever experienced. Nothing~ no stomach pain, asthma attack, or biopsy will ever compare to what I saw today. In addition, this x ray machine is connected to a computer monitor and that brings up instant pictures of Jacob's abdomen. It makes a beeping noise after every picture taken. I watched the screen after every beep for several minutes and you could see the tube moving. The best way to describe it, is when you try to thread a needle. If the end is frayed and you try to push it through, it bends upwards and doesn't go through. That's what I saw on the x ray. The doctor would push the tube in and then when he tried to get it in the jejunum, it would just bend around another part of the small intestine.

It got to the point where the doctor said he wasn't sure he could do much better than what he got. He said that that's not where he wanted the tube and he wasn't sure it would hold but, he didn't think he'd be able to move the tube where he really wanted it. At that point I did something I was taught not to do; beg to God. I prayed over and over and over again. I didn't look away from Jacob because I didn't want to be a coward, he doesn't need cowards in his life. He's the strongest warrior I know. So I just kept asking God to please help him. But Jacob's cries were getting louder, his frustrations were increasing, and I kept seeing that tube being pushed in and pulled out. I didn't think about it not working; I kept thinking I know God is here, I know he's going to make this right. And sure enough, a few moments later the doctor said he got it; he got the nj tube placed better than ever before. By that I mean, this is the doctor who usually places Jacob's nj tubes (he did it last Thursday) so out of every time this was the best. Then, after it was in and they taped it, Jacob stopped crying. He literally calmed right down like nothing had happened a few minutes ago.

The hardest part of today was the moment we were all saying "sorry" to Jacob. What the hell does sorry do? Sorry you have to go through this….sorry you're in pain….I can say sorry all I want but I can't stop what has to be done and I can't stop the pain. The nurses can make as many sad faces as they want because they feel bad but they and I aren't going through this. Faces and words don't change anything. Jacob and I have a new thing where when I sing him a song, he pats my hand continuously. I tried that in Radiology and it worked for about 2 seconds. I even got the rest of the radiology team to sing "Jingle Bells" with me but Jacob didn't care. And why should he? He didn't ask for this tube to be dislodged; he didn't ask for his feeding site not to heal; he hasn't asked for any of this.

Medical update: things are getting serious

I was talking with Jacob's nurse today and wanted to post this. Just to let everyone know how serious this has become.

The nj tube that he has placed will last about 10-14 days before it plugs. So his next one is due right around Christmas. Apparently Jacob's pyloric sphincter is not formed correctly so what would be a quick 10-15 minute procedure now becomes a 45 minute painful procedure. The site on his stomach looks absolutely horrific. I was around when the nurse changed it today; it had been dry all day and Jacob had been on his stomach for 2 flopping minutes in his crib and it just poured out. I saw it flowing out of his site faster than the nurse and I could get gauze to cover it. The good news is, it's not tube feeding leaking so he is still gaining weight. The bad news is that it is stomach acid leaking. And it is burning his skin off.

The nurse told me today that when Jacob was with the surgeon yesterday, the surgeon threw her hands up in the air and said 'If this doesn't work, I don't know what else we can do. I just don't know, I'm running out of ideas.' The surgeon is apparently going to present this at her meeting for difficult cases to see if anyone has seen anything like this. So far, we have not come across a doctor who has. Jacob cannot be the only one in the world who is having this problem!

There is one option they might try and it's taking the nj tube out and putting a j tube in his jejunum. Then, no food will go anywhere but the intestine. That will allow them to sew up the hole where the g tube was and hope that it stays closed.

You know, when you have people telling you they just don't know anymore and they keep repeating that they don't know, it gets really tough. It's getting really difficult because there is an obvious affect on Jacob. He's tired. It's procedure after procedure, surgery after surgery, and his surgeon is running out of ideas for the first time.

Dear God, Can this family have a Christmas miracle?

It seems like a year ago today we were here. Though we couldn't have known that we were going to have another year with Jacob. It's been a tough one; many moments where we thought we were really going to lose this little guy, but he's still here. Unfortunately, he had a really rough day yesterday. From my understanding, the doctors said they weren't going to put another nj tube in. And yet yesterday he went into the hospital to have one placed. In addition, the hole on his stomach is so big that they went and removed his g tube. So, the only tube he has is the nj; that's how he gets his fluids, food, and medications. Nothing goes straight into his stomach anymore.

The placement of the nj tube is not a pleasant procedure and Jacob never complains about anything being done except this. They don't sedate him so he feels just about everything. Of course they lubricate the tube pushing it through the nose, down the esophagus, and into the stomach. But he can still feel it. In truth it doesn't matter how much lubricant is on that tube, I'm sure it still hurts because he acts like it does. 

With that considered, I feel like these blog posts are never anything of real information. It's all trial and error. There's nothing new being done; it's the old strategies that are being combined in different ways, that's all. It's not good when your doctor has to back track. Which is exactly what Jacob's are doing. He has new doctors in addition to the old; specialists from a variety of fields and they all have their ideas. Then when they don't work they back track to what our original surgeon did in the beginning. I guess we are a little further along because they actually removed the g tube this time. It's less tension on the hole so hopefully it will close. 

Evidently, I haven't figured out how to make any sense of this yet. I have many mixed emotions and I don't want there to be anymore confusion than there already is. This isn't my fight, I don't have nearly the amount of strength my brother does. But I am struggling, emotionally. I don't think there's anyway to keep that from sounding selfish. In theory though, emotions come through in writing. I don't know the reason for any of this; I don't know how much longer he has to endure this crap; I'm scared to think about what the truth of it being over really means, life on Earth or life in Heaven. I had all of these long term commitments out in Charlotte this month. That would've meant that I came home Christmas Eve and Christmas then flew back a day or two after. That's all I was able to get. But out of nowhere all of those plans fell through, no notice, no explanation, just nothing. This happened right around Thanksgiving and that was the weekend I found out Jacob wasn't doing so well. I am a firm believer in everything happens for a reason. I just don't like to think about *this* reason. 

But in reality, this isn't about me. I mean what I say, I want my brother to stop suffering in whatever way God has planned. I'd like to think he gets to stay on Earth but I don't know. Then again, we were here in almost the exact same situation last year and we were blessed with an additional year we weren't' sure we had with him. Right now I have the "I don't know" mentality and that's not what I want. I want to have hope in that he's going to stay here. Not hope that his suffering will end soon and that be it. Truth is, I don't which one is right. Is it selfish of me to think that way? Or should I believe God will make it so he can live a full, long life? I have absolutely no idea. Or, is it totally wrong for me to even bring up the what if's? I know today is all that counts and here I am writing about the maybes. But to be honest, the more set backs we have with his feeding site, the harder it becomes to believe it's going to get better. I don't know if you call that losing hope. I don't think so. I have hope God is going to take care of my brother, I just don't know how. With that said, when you are in this spot, your mind wanders and you can't help it. 

~I know people have it worse, much worse. I should rejoice that he's here. But that doesn't make anything less stressful. Hopefully next time I write, I have some hope and positivity to contribute. For now, I'm just looking for that Christmas star in the sky. 

Does stress mean weakness?

I know I said I was going to continue with my "Thanking God" post but tonight I want to write about something else. This whole blog is really centered around my brother and this particular issue is really bothering me.

School is done for me for about a month so I'm flying back home on Thursday….
This Thanksgiving Jacob was in the hospital; even if it was only a day, a day is still time. Last September is when this whole thing began and by Thanksgiving of 2012 things really started to take a turn for the worst. The day I flew home for Christmas break last year, he was rushed to the hospital. Those entire two weeks leading up to Christmas he was in and out of there.

Can you blame me for not being a little nervous about what's going to happen? I know your response would be to trust God and well, I do. I trust that he's going to get us through anything that comes our way. Since things aren't' always okay with Jacob's health, I don't think about it in terms like that because often times hopes are let down. Trusting he will be okay and nothing will be wrong….let's just say the odds aren't in our favor. Trusting that no matter what happens God will make everything and everyone okay in His way is more like it. I know that sounds like I'm doubting His power and I'm most certainly not. It's just when you wake up almost every morning and you continue to get bad news, you stop looking for a cure for that specific issue because it's much bigger than that. You have to start looking for the overall cure~ whether it be in body or mind. That's what we (my family) do. As much as we'd like to believe Jacob's site will heal, we really can't say we know. The reopening shouldn't have happened and yet again doctors/surgeons are baffled. If that can happen then anything can happen.

Maybe this is me being too dramatic. Perhaps I'm winding down to a point where everything and anything that has been on my mind is floating to the surface. I truly don't know. I see all of these children who have the exact same issues as Jacob and they are passing away….it scares me.

Though on another note, over Thanksgiving break I was able to see the change in my family's faith. It's grown significantly and you can feel it. God is just about the center of every conversation we have. We depend on him indefinitely. I don't believe that we didn't before but I think that it's more pronounced now.

I do feel better after writing this; feeling God's graces wrapped around me. If I can feel his love after seeing the monster I had become then I know he will be by my side through whatever happens or already has happened. An added thought, I recently thought about the person I had become over the last month(s) and it terrified me. I couldn't help but feel weary about who this person sleeping in my bed and walking around my apartment was because it couldn't have been me. But indeed, it was me. A sinister, sinful, lost soul. And after all of that God still helped me and put me back on track. He let me wake up the next day and try again. That's not something to take for granted. Not at all. So maybe that's how I need to treat the unknowns of Jacob. As far as I know, he's doing extraordinary. I could be totally wrong but I wouldn't know. It's something to be dealt with only when I do know. In other words, I shouldn't cloud empty, ready to expand thoughts with my unknown worries. God has got this.

Faith, a beautiful thing it is. A beautiful, delicate, never failing, thing it is…..

Thanking God

It's midnight and I have a Psychology final tomorrow morning. But I cannot hold it in anymore! I am joyous tonight for God has saved me! I have been quite worried about the state of my soul lately….
Overall I've just felt less drive in life, confusion about everything, pride overtaking, and my vulnerabilities overpowering my spirit. Maybe that doesn't sound so bad to some but sitting in church earlier, I realized I have been a bad girl.

Lately, I haven't felt God's graces to the degree I usually do. It's been unusually less present. Now before everyone gets in a tizzy, it is not that God's graces weren't there. I believe they always are it's just a matter of if we let them in or not. With my pride overtaking my being well, it blocked out God. How horrific! Really, sitting here and admitting this is pretty brutal. The one who gives me unconditional love, takes care of me every moment of every day, helps the ones I love, promises me a place in His kingdom. How could I ever let such an abomination occur? Don't spit out that "you're human" crap because that's not an excuse ever. This is not a lesson I needed to learn because I should've already learned it. I had every cue that I was going against God's wishes and I did it anyways because it was what I wanted. There's the problem….there are too many "I's" in that sentence. It's not about ME it's about HIM. I really realized it last week. When I had been without His graces for a good few weeks and then one morning, I was sitting in one of the buildings at my college and was reading "Darwin Arkwright" for my Children's Literature class and I felt an overwhelming feeling of His love and grace. I really wanted to cry it seemed it had been so long. But it wasn't so random because I had learned something that morning (or processed it I should say). Being a Psychology major can be a great challenge. Not as much as other life struggles but nonetheless it can make or break you. There are many psychological disorders that I believe are complete bullshit and that it's a matter of having Jesus in your life. Well, after reading about all of these disorders it was easy to get caught up in the factual information. I started to believe everything I read and I fell victim to false beliefs.

The problem with any science is that it removes God from the equation completely; you are looking for an explanation you can prove, not one you say you 'just know.'
So it was at that very moment that I realized my purpose in life. It's not to help children, it is not to get married, or travel the world. It has nothing to do with any of my ambitions. The only desire that really matters to me is that my only purpose be to live for God. Everything else will fall into place exactly as He wants it to.

Truthfully, I cannot think of a time where God's plans were worse than mine. Sure, maybe they were harder to achieve but they worked out in the very best way. It was in the moment of being without God's graces (from blocking them out) and then opening up to receive them again that I realized I have nothing if I don't have God. Those were some dark, spiritually restless, and petrifying times. I had no idea what was happening to me. I knew if I pressed on and prayed that I'd find my way back but what was key is what I had done to wind up where I was.

I'll continue the rest of this post when my finals finish…….

Prayer Request

What is life? It's not an emotion, you can't touch it but you can experience it.

Is there any one word that defines the capacity of experience?

You can't put a limit on experience. Nor can you put a limit on your life. I don't care if an experience lasts for only a few minutes, the initial feelings it brought to you, the thoughts that flooded your mind, and the influence it had on that moment and your life are endless.

Jacob's feeding site is breaking down again. My parents didn't tell me until I came home Wednesday and I'm grateful because if they told me while away at school I would've had a breakdown for sure. It's a weakness that I certainly have to work on….but anyways, it's leaking a significant amount. I knew something was wrong when I looked at the pictures my mom sent me of him at his "Feast Day" at school. He had the binder on which has been off since he had the nj tube placed. Once that was removed, he had the bolus feedings and it was still off. I was also on the phone with my mom and I overheard in the background my dad in anguish saying "it's wet, It's soaking wet!" But today confirmed my fears and put my doubts to rest.

Jacob is not only leaking again but he's losing weight. He recently went back to his specialist who changed his feedings completely to compensate for the loss of protein (they were having a lot of trouble keeping his protein levels up.) I think about 2 weeks ago, he went back in to see his surgeon and wound up having to have sutures placed again. They have never worked before so why would they work now? All of the progress made; the healing of his site; it's deteriorating. And since his site is getting bigger and not smaller, they have placed the nj tube back in. It's not a painless procedure might I add...

It's times like these where I think about the moments where I was lazy or complained too much. Not wanting to drive to get groceries or having a professor testing us on material we haven't learned; all small "problems" if you look at the big picture. But if I'm being totally honest, they are not problems at all. As long as I do my best and put my trust in God, he gets me through anything and everything so school really shouldn't be that stressful, because it always works out in the end. I guess a small part of me confesses these things in hopes that it would change the outcome/reality with my brother. But realistically, I know it won't.

So with all said, he's not doing so well. Things could be worse but things could definitely be better. It's been a sad day. And we don't know what to expect next. Any prayers would be greatly appreciated. I'm not sure what God's plan is here….this little boy's struggle seems endless.

The Wannabe Facebook Status

This past weekend I've been really down in the dumps. Sure, I've had my moments of pure happiness only given to me by the grace of God but somehow I still allowed myself to feel sad. Homesickness has definitely been the biggest struggle and today it slammed me. I didn't cry (almost) but I woke up sad with a heavy, lonesome feeling. Not even the Disney Parade soundtrack cheered me up (okay I lied, Disney helped a little.)

In addition, I've had some financial struggles affording groceries; turkey slices and cheese slices is what I've been living on for the past 2 weeks. I mean, it's food so no complaints here! But I ran out of them today and I felt the physical effects of not eating. I didn't know what I'd be able to afford~ I figured more turkey and cheese slices plus maybe a frozen meal. I just needed to eat and that was all I knew. 

So on the way to Target  K-LOVE Radio was playing and at first they were talking about a man who had a deadly form of brain cancer and how he learned family was the most important thing in this life (besides God.) He said something along the lines that 'If things go well, I got to spend more time with my daughter. If things go bad I got to spend more time with my daughter." I almost lost it at that point because I am far away from my family and I understand how important they truly are. But then they mentioned this bible verse: "I have learned the secret to being content in any and every situation, whether well fed or hungry, whether living in plenty or living in want. I can do everything through him who gives me strength." ~Philippians 4:12

Not only did God give me some much needed strength to push on through but he helped me realize that I need to be content because it is all going to be okay; God loves me and that's absolutely enough. In addition, He helped me out food wise~ there was a big sale on most gluten-free products at the store today.  

Transition to adulthood

I encourage a happy life and stress the importance of family, yet here I am far away from my family. I'm feeling down tonight..well really it's been the last few days. I had a job interview this past week which got me thinking I should apply to more jobs. I just felt like God was telling me I should keep trying. I know my dreams, desires, and ambitions.

God also has instilled great confidence in me that I am on the right path (for now). That being said, the main source for my sadness is I can't have a job here in Charlotte and still go home to my family for the holidays. The more opportunities God puts in from of me, the more I have to tell my family I won't be coming…..

It just broke me because I had a very serious conversation on the pone with my parents about this. My mom was sad and she doesn't get sad that often, she's always the one telling me to get over myself (with good reason) but not this time. Both my parents told me to "do what I have to do." Well, what does that mean? It's being said in a quiet, melancholy tone so do I skip the job and go home? Or, do I actually do what I have to do? I'm telling you, this adult life is a great challenge.

I know God is going to take care of it all and there should be nothing to worry about. But indeed one of my flaws, I am worried. I've never spent a holiday alone. I don't even like being in Disney alone! Spending Christmas and Thanksgiving without the ones who mean the world to me? They aren't going to be around forever….

It's almost confirmed that I won't be going home for the summer and if I'm actually working, I won't be home for Spring Break or Easter either. This sounds like a bunch of guilt and regret seeping through the seams of a tied up heart. Yes to guilt but not to regret. If I tell the ones close to me in Charlotte, I know many will interpret it as in I want out of Charlotte. And that is absolutely not the case. I just happen to be in the part of the country where family is above all else; they actually have family day on Sunday. You eat big meals together and see extended family….what is that? It's new to me. The significance of all of this is simply just that the more involved I get in life down in Charlotte, the less time I get to spend at home. Is that really how it's supposed to be? God teaches me the importance of loved ones and how to live in the moment yet, I am not to be with them for very long? I don't understand. In fact, this entire blog post is a nightly prayer for me.

My family and friends are alive and well so what have I to complain about? I keep telling myself everything is going to work out just beautifully, as it always does with God at the center of it. But I cannot hold it in anymore, I'm still nervous.

It's all good

THIS IS THE LIFE! For the first time in many months, my biggest concern is school. I cannot even begin to explain how blessedly awesome that is! All of my brothers are stable and doing well. Usually we only get a week of that but it's been two weeks going on three! I'm grateful for every extra day God gives us with this new found freedom. I truly forgot what it feels like to have everyone in good health. You really cannot put a price on that.

That being said, Jacob was breathing on his own (without machines) on Sunday, my other brother with the infected lip is in school and absolutely thriving. My parents thought that his lip was going to give us serious trouble again but it seems to be holding for now. To continue with the good news, Jacob has started bollis feeding again! I'll try to explain as best as I can….

His nj tube had clogged and they went and removed it because the feeds he was getting through his g tube in his stomach (by machine) were staying in and there were no signs of leaks. After the nj tube was removed he started receiving the bollis. Basically it is just a giant plastic syringe that you put the feedings through. The syringe connects to a port opening in the g tube and voilà! Jacob receives his fluids, medications, and feedings. According to my parents he is much happier this way ( I think I would be to). The reason being, he is being fed all at once like most people are. With the routine machine feedings, he continuously receives a set rate of tube feeding over the course of 24 hours. His rate on the machine was 80. After his stay in the hospital they increased it to 95. Now, he doesn't even use the machine!

This truly feels like a fantasy to me. I was grateful and blessed (I still am) for the blessings given to me in hard times but now there's no thought of hospitalizations, surgeries, or doctors. It is the greatest feeling! My parents aren't juggling going back and forth between the hospital, work, and home. They can be with each other without having to separate and it's just too wonderful for words. I recognize that this may all be temporary but I'm enjoying it while it lasts.

I felt joy within me throughout the rough times in the previous year so I ask myself what's different now in good times? And in truth, I don't have an answer. God is constant, He has been there through everything, He's been here through the good and the bad times. In essence, whether you feel you're in a good or bad place, every moment depends on what you make it. The grace God offers you in bad times doesn't change in good times because He is always by your side; that will never change. So, the moment is really all up to you…it is whatever you want to make of it.

There's no real answer

It's been a while I know---

You can choose to live life depressed about the circumstances dealt out to you. Or you can be happy for what has been given to you and choose to bask in the glory of God's blessings. 

A week ago I willingly chose to be upset; I walked around campus late that night, in tears, out of fear and frustration. Things were like a water balloon; the world's circumstances can only "squeeze me" so much. The more hands involved in squeezing that balloon, the more likely it will pop. The more challenges dealt out to me, the harder it gets to relax and cope without exploding myself. I know this isn't about me but I can't deny that I feel affected by my brothers illnesses as much as everyone back at home. I've hesitated saying that because I don't want sympathy or empathy from that. I just want people to understand that I still have to work on my strength.

I'll start with Jacob first: He is doing well....for the first time in a while. His feeding site looks remarkable compared to what it has been; it is almost completely healed. His NJ tube did clog and my parents have begun feeding him through his g tube. So far, that seems to be working; no signs of leakage or damage to the skin. There's no guarantee it will stay that way because before I came home it had actually gotten worse again. But so far, he seems to being doing well.

My other brother: The hardest part for me is that I flew home two weeks ago for fall break and saw him....he was at white as a corpse, not super energetic, and not eating well. Anyways, I woke up that following Sunday I returned to school and had this gut-wrenching feeling in the pit of my stomach. I know my stomach pains....this didn't hurt like it was sick, it hurt like something bad was about to happen or was happening. My first reaction is always to check on family because nine times out of ten, that's the cause for it. But when I first texted my mom she said everyone was doing great. Then I thought it must be on my end; my abusive ex from high school trying to get in contact with me, a new, poisoness friendship, an illness I have....you get the idea. However, I called my mom that night for another reason and then the truth came out. My brother's lip is getting worse, the infection was never cured and he will wind up back in the hospital soon.

I think the most important revolution I've arrived at, is every time something happens like this, I spend less and less time sulking. The reason I say this is because I'm not perfect at moving on. I'm finding that every time someone proceeds to tell me that I'm strong and they don't know how I do it....being far away with all this going on; I'm reminded of what I actually am doing. Of course I think about it on my own and do struggle. But I tend to let it get to me even more so, when others tell me it. In a way, it brings the negative feelings back to the surface. Evidently people are not purposely doing this. I understand completely what they are trying to say but it's still hard. I find myself when trying to update people on the current situation that I still fight not to break down into tears. There's really no conclusion to this particular blog post. I am in the process of writing it; writing it in a sense that I'm presently working on getting my feelings completely in check.

Writing is my way to analyze and organize my life; I've gone through a lot of self discovery through the last few weeks. Too much to really blog about. In truth, I've been working on trying to put life's circumstances in a box, tie it up in a bow and place it (mentally) on a shelf. That way I could focus on the life in front of me. You see, it doesn't matter where I am in the world, what happens with my brothers would happen even if I were on the other side of the world. Distance isn't the main issue. It's the reason behind it all. Why my family? Why now? Why is it that my family has one week at best where hospitalization is not a factor? I don't know, I don't think I'll ever know. I've got to stop trying to understand why and start asking how. How do I balance this? How can I strengthen my relationship with God through this? And how can I help my family at home?

Nowhere but up

Alright so I have some tough news. The procedure Jacob went through and was in the hospital for was not successful. It looked like it was really healing and that we were in the clear but that doesn't seem to be the case. According to my mom, 'his site looks good one day and bad the next.' For every bad day, it's a setback. He may have good days but the damage done on the bad days will overtake the good days. I'm not going to get emotional about this, it takes a lot of energy to do that and I need to focus my energy elsewhere.

God is going to carry through whatever he has planned for my brother. It can be frustrating, upsetting, and confusing all in this moment but God has never let us down and never will. He will take care of both my brother and my family. So where do we go from here? Nowhere but up. Interpret it how you will. I don't want to say that my baby brother may earn his wings this way. Putting a limit on him is not right. So I'm leaving that one up to God. With all considered, one thing needs to be remembered. When you embrace God's love you truly can go nowhere but up. For my lack of words tonight, I feel this song best conveys what I'm attempting to say. No matter the situation at hand, knowing God is by your side and His love for you is unmeasurable, should put a smile in your eyes, as you do for God.

Love at first sight

Love....such a beautiful thing it is. I think as humans we sometimes forget it's all around us. It is not just categorized by a significant other, it is the life we've been given and the people we have (romantically or not). The experiences we are blessed with, the things we can do, learning what our passions, strengths, and even flaws are. That is the beauty of the soul, to be perceptive of ourselves; our imperfections that make us who we are as individuals. Put another way, we are that person that God personally chose to walk the Earth. Though, remember that's not be confused with our sin. That is not beautiful.

I'm feeling inspired tonight, partly because of this movie I watched but also because I have been "struggling" with this thought of love. In grade school there's an endless pressure to be in a relationship. Nobody ever told me that it would continue in college but be even more intense. Especially down south; everyone marries a lot younger down here. It's acceptable to be engaged at 23 and married by 24. I'm not used to that, not by any means. However, the south has altered my values a bit. Up north, I thought it was "cool" to date a lot of people. Not so much anymore....I'd rather date a few guys that I really like and find the one then date every guy and their brother just to find the one. I'm no different than other girls, everyone wants to find their soulmate and they don't want to have to look for very long.

My point of all of this jibber jabber is that there is an entire world out there. We are choosing to view it out of the smallest lens available to us. When I mention how I'm focused on love (specifically a significant other) I'm not really seeing, I'm looking. Here's another term for you....this one is from my beloved Psychology class; inattentional blindness. Your brain has a difficult time processing visual and auditory information at the same time. That is where "attention" comes into play. You may be looking at someone but are not focused, or paying attention to what they are saying to you. That's a lot like life from my own personal perspective. We are looking but we aren't really seeing. Sure, I'm going through the days living life but I'm looking at couples, cuddling, the date nights....what I don't have. That's the visual information. The life I am living, what God has put around me has taken a back seat. It is the auditory information that isn't being processed.

I know you don't care what I think, I'm one person. So look at it in a general sense. When tragedy strikes, you begin to reflect on what happened in the moments leading up to that particular event. You don't want to reflect on wasted thoughts. Wasted, in a sense that they were really insignificant all along, you just didn't pay attention. There was something else whether it be an experience or emotion that became your main focus which was always temporary.

So as I final thought and/or request, what you have been given is all you have so enjoy what has been given and patiently wait for the Lord to answer the unseen desires of your heart. There are others around you who love you and that should be just as meaningful. That is why you need to get to know the world around you because there is a lot to it. Literally every day I am shown one of my many blessings. They are blessings that I always had from God but never took to the time to notice. Right there----> He loves you. God. Remember that.

This could be it

Jacob was admitted to the hospital Wednesday and will be there for about two weeks. Possibly one week depending on how well he does. But not to worry! It is the answer to our prayers that he's there, because the surgeons have removed his gj tube. In simple terms, his feeding site that has been such an issues for 11 months is hopefully coming to an end. With the removal of the gj tube, they are taking the tube out of the jejunum. This will allow the stoma (big hole) to close without fear of any leakage. So far, his site has been dry since the tube has been removed. There are no dressings, foam, or binders on him...for once, it's just his shirt on his back covering the hole.

~~~Now of course he still has to obtain nutrients, so they have put an nj tube in:

This tube is placed through the nose and down into the stomach. There is another tube (the g tube) which is placed in the jejunum as a "guideline" for how small they want the hole to heal up to. Evidently they will place another tube in when the hole begins to close but they need it to stay a certain size in order to get the new tube in.

This is more than a new tube placement though...for Jacob, this is his childhood back. He will be able to play on the floor like he loves to do, he can go to school without his massive binder attached, and go back to breathing without his oxygen on every minute, of everyday. Those mucus plugs that I would write about, stopping his breathing will not be as common of a problem (or shouldn't be).

But there is a challenge to this....what Jacob is going through right now. This is his battle, nobody can do this for him. We will never understand what it's like to lay in a hospital bed for two weeks knowing you cannot get up. School is his favorite place to be (most days). And for someone who enjoys school so much, he certainly misses a lot of it. I pray to God that he doesn't feel much pain from this procedure that has been done and that perhaps the time will pass by quickly. I should also add, the risk for a respiratory infection is almost absolute. The hospital he is at, does not provide the best respiratory care. Every time he is there we have a problem getting his breathing treatments on time. No treatments/medications = sick baby. But again, I'm trusting God to take care of him. 

He's been through so much and is continuing to go through more but this might actually be the end to his battle, for real now. To have Jacob's stomach healed is not only a miracle but my favorite saying: a divine blessing. This is worth every Christmas, birthday, and any present I could ever receive from anyone for the rest of my life. The joy in my heart and soul that my brother can live on from this life threatening killer, is beyond words for me. It's been a roller coaster with procedures failing and working, then failing again. But of course the question will be asked...what if it doesn't work? Well my friends, we will deal with that when the time comes. I write this blog tonight celebrating yet another chance for my brother.

This blog has been viewed all over the world and to everyone who has ever had my family in their thoughts and/or prayers, I want to thank you. I want you to know that whatever you did means more to me then you will ever understand. I do not have to know you to value your support and prayers. You all have gotten my family and I through some rough times. I am not here today writing this post without the help of you all and your faith. 

Critical

Everything I said yesterday except for the last paragraph and trusting God is....bullshit. My brother isn't responding to treatment. They are keeping him in the hospital longer and doubling his dose of antibiotics. They are not pleased with what his cut looks like today. I'm at my lowest point, the oldest of the three boys is an absolute, emotional wreck. I skipped one of my classes today because I couldn't stop crying. These stupid, pointless Facebook statuses complaining about homework, relationships, and sports piss me off. If my brother survives this, I don't think I could post another status about pointless crap. I've done it lately and I don't plan on doing it again.

I didn't think life could be anymore pronounced than it has been but apparently I was wrong. As in, I have a guy I'm hopelessly in love with. But none of that matters. If it's not going anywhere I don't care about wishful thinking. I got caught up like college girls do on a boy and I'm totally regretting it.

 So back to my brother.....today is a really hard day. Not one part of me is optimistic. And being alone right now is my worst enemy. I cannot post this blog with words of encouragement at the end like I always do. Today it's your day to offer some encouragement, not necessarily to me but towards your own lives.

Tables turned

I wasn't going to write this but sleep isn't happening tonight. This blog is centered around Jacob's hospitalizations and fight for life but yesterday the tables turned. For once in all of Jacob's existence, one of his other family members was critically ill and he was fairly healthy. The second oldest of the three was rushed to the hospital yesterday morning for an infected cut on his face. My parents had been working with it all week. He was taken to the doctor on Tuesday but they wouldn't give him an antibiotic. Friday, he went back to the doctor because his lip was so swollen he couldn't get any food or drink down. He was then given an antibiotic but by that time the infection had spread. Sunday morning it was a life or death situation. I got the call as the nurses were prepping him for surgery. It's one thing to get a call saying he's in the emergency room. But saying he's in the emergency room and being prepped for surgery, all in the same sentence is a lot to take in. Now by no means am I the victim here, I'm just telling you that's what was running through my mind.

So of course everyone is a mess while we wait for him to get out of surgery and when he finally does my parents were told something startling. Apparently there are two triangles on the face. These "triangles" are the sites on the face where infection can get up to the brain. Essentially, it is a miracle that he is here with us tonight. Children who have infected cuts where he does usually would have had the infection spread to the brain already. But the surgeons got to it just in time. This wasn't a surgery that could have been important, it was important. He wouldn't be alive without it.... holy shit that was a heavy sentence.

It amazes me (not in a good way) that I still get the shock of 'I might lose my brother.' Regardless of which person it is, I should get it by now that life for anyone is never a guarantee. I'll say this though, my trust in God is certainly at an all time high. I'm not saying it can't be stronger because of course that's not true. But from the second I was told my brother was in surgery to the second I got the call that he was awake I knew God was going to take care of him. There was no asking him, it was knowing he was going to help him in whatever way was His will.

So please, whether this is your first time reading this blog or your 43rd time I ask that you hug your loved ones and tell them you love them. Set aside petty arguments and spread happiness, not rage. Don't assume the people you love/care about will be here tomorrow; just because you care about them and nothing happens to you doesn't mean it can't and won't. Just last night I was looking through old photos and videos on my phone of all of my brothers. I had no idea that I'd be told the "healthy one" might not make it the next day. Truly appreciate who and what you have, thank God for his gift of life, and love like it's someone's last day.

For every angel there is a demon

I'm scared. I'm overwhelmed with what is happening. How something so small can spiral into something so large. The fact that I allow jealousy, one of the seven deadly sins to fuel my rage towards an insignificant problem. I have allowed rage and confusion to make me vulnerable to the devil's deceptive ways. I'm in a dark place today, fear is all around. I feel clouded by the evil surrounding me...I know God is there but I haven't figured out how to clear the fog. Sure, I'm a book behind in one of my classes. I could be what every person refers to me as a "studious" person, but it wouldn't do much good today. My rage and vulnerability has put me into a place where I rarely go. In the darkest of times (like now) I clutch my rosary in the palm of my hand and do not let go. Just having it in my pocket gives me a sense of relief.

Now let me give you an introduction to what has aggravated my emotions to a higher, more denounced level. When calamity strikes your first reaction should be to seek God. For he is your saviour and will never leave you. God is the one who will give you peace in the middle of your raging storm. So when you feel his unconditional, embracing love you need to know that no matter what happens God will be there. That's the thought I had running through my mind all weekend. But then I received a phone call. It was from a victim if you will, who had been subject to something very evil. All I had to hear was 'If anyone wants to adopt a medically complex child I will tell them no. It's not worth it." That's all I had to flipping hear to send me off the deep end. Honestly, in my heart I don't believe that the person who said this really said it.

Let me clarify: In stressful times are ability to reason and filter so to speak, what we say is hindered. If any part of us is hurting, that serves as a weak point. That weak point is evil's open door. When we try to solve a problem by ourselves without seeking God we find ourselves in the pit of despair. It's not that God won't rescue us, of course He will....if we are willing to be. So when you're upset you are upset with God; naturally at some point everyone is. That's where our lack of judgment and filtering comes into play. It's us at a worn down and torn about state. We have been exercised of all our recourses that we think we have. Sometimes for some people (not all) God can take a back seat. With that said, I know this person is overly stressed. Even if it was just for that statement, evil had the upper hand. Just as it is trying to gain with me.

But that still doesn't justify what was said. To know that they are at such a vulnerable state that their lips can purse such words is terrifying. I didn't know this bothered me so much. But last night when I was laying in bed, I felt extremely unsettled. When the world around me is bothering me to the point where I cannot focus on what is important like, God, family, and the fate of my soul, that usually tells me that I need to go pray a rosary. And that is exactly what I did last night. But everything was different, getting through a rosary became a major challenge. At first I felt safe, I felt God's presence but then I felt a weary, sinister type atmosphere which provided the opposite of comfort. Hopefully it's evident where I'm going with What and Who that was so I'm not going to elaborate. I don't get that all of the time, I get that when pure evil is near. The situation that occurred on Friday is evil. The thoughts and stress it causes for the ones I love is also a source of depravity.

You can count on after I post this blog that I will be sitting in my apartment saying the rosary continuously. That for me, is my defense. Of course it's not my only one but it is the one most personal to me as an individual. I find that the rosary is how me and God connect; more so, than just talking to him. So with that, I have no doubt in my mind that God is right here next to me. It's said if you offer your suffering/fear up for the souls in Purgatory, you will save souls.

~~~~~~~~~

Heard this a few minutes ago doing homework....I thought it was a perfect addition to this post:

A spiral downward

I want people to understand something and I feel that it needs to be clarified before I go even further. At the moment, it is difficult to continue to update about Jacob. Last Saturday his condition took a turn for the worst and is continuing to spiral downward. It is not a lack of communication it is simply that I haven't "conquered" the reality yet. Some may argue that that is not possible. But truly it is, it's fundamental to the quality of your days. When I find myself  worrying more about the future than enjoying right now, I know I'm not where I need to be. All it takes is a phone call from home, or for my mind to wander for me to tear up. And that cannot happen, I'm telling you it just can't.

I need to be able to get to the point where I accept what is, and make the best of what I have in that moment. Forget the school work, the stress of adulthood, the jealous people....I can handle that. I cannot handle this life/death deal quite yet. I guess in some ways I'm not supposed to, I'm all the way in North Carolina and I am no use to my family here. My greatest support for them is praying. I just keep telling myself that God has brought me back here for a reason. He's taking care of my family back home so I need to trust him and continue his work elsewhere. He doesn't need me to be at home, he needs me to be here.

With that said, there is absolutely no way that I would have been able to come back to school and carry on a "normal" life without God's strength. The one who is there for me during the lonely nights is God. And with that, I have a millimeter more of hope and strength than I did Monday. I'm holding on to that with dear life. It's not possible to come out on the other side; a better person; closer to loving like Jesus does without Him. I mean, He is the source of all of our happiness. That's my positive thought for the day. It's short and sweet; indeed things are hard again but they won't stay like this forever.

Bad news

I said that no news would be good news, so this news is not good news. I got a call from mom today about Jacob. We were doing so well with his site and the surgeons were so pleased that they were planning to put the mic-key button back in! In order for that to happen he needed to 'do well' for lack of a better term, with having his current tube clamped off. Every night for 4-6 hours he needed to tolerate the blocked access to the farrell valve bag. This would insure that his wound was healed enough to stop the flow of gastric secretions. However, I received the news today that doing that has put him right back to where we were at the beginning of the summer. My mom is having a difficult time stopping the secretions from reaching his skin...they are soaking through his dressing, the pad over his dressing, the sponge on that, the receiving blanket on top of that, and finally through his shirt. The last time this happened he went into surgery and they found that the secretions had reached the internal tissues. I'm kind of lost at this point; first day back to school, which is a break for me and I get this news. I'm not sure how to think right now but I can't help but wonder if my baby brother is ever going to get better. God has put us on a roller coaster for sure this summer; my family and I have expanded our faith and wisdom in more ways than I ever thought was possible. I live life in a new light and treasure every day. Yet through all of that, there is still a struggle. I'm nineteen, I don't have all of the answers, if any. My faith is concrete but I still deviate from the right path; I still question why Jacob isn't better yet.

Short and sweet

For the past two days Jacob's secretions have been less thick. I honestly think it is the weirdest thing. We haven't changed his feedings, what he gets, and what we do. It is all the same but for some reason his secretions aren't as thick and dangerous. In part it may have to do with his trilogy (the ventilator) he's on at night but that still doesn't account for all of it. At least, I don't believe so. He's also not as unstable as he has been. When he throws a plug it only takes one cycle of the cough-assist (5 inhales and 5 exhales) to bring it up. Or, a little bit of suctioning. I thought he was getting in trouble last night but his heart rate didn't climb as fast and his oxygen saturation was steady at 100. He definitely had a lot of junk in his lungs but he responded more positively to it than oppose to Sunday. With that said, that doesn't mean that we can treat these plugs as less of a rush per say, but in essence we do have more time to act and it's also not as hard on his body.

As far as his site goes, there are no plans to do anything at this time. We have both surgeons conversing on what is best for the child and evidently they haven't come to a decision yet. The dressings have been wet but a new home care nurse just started this week who is very unfamiliar with what has to be done. Not wrapping the binder tight enough, keeping the phalange of the tube tight, the balloon inflated etc...that all factors in to the release of gastric secretions. Believe me, I'm not even seasoned on how to change this dressing. Respiratory wise I can handle anything with him and I'm very comfortable in what needs to be done. In an absolute emergency I could probably do it for a temporary amount of time but I'm no expert. It's quite complicated and there is a lot involved. Overall, there's not much more to say, we are in the middle of a waiting game. It's definite that no surgery will happen before mid August, that much I know. Nevertheless, both doctors have a plan. A few weeks ago, even a few months ago, there was no plan.

At a crossroads

This is strictly a medical update on Jacob. We are having some reserves with going forward with the surgery now which has certainly complicated things to the nth degree. I'm not quite sure where to begin because there is a lot of ground to cover in this post. I suppose the best place to start would be last Sunday when he was in my care for most of the day. He was stable most of the day but when he was unstable, it was quite serious. I thought I was going to lose him twice. I've talked a lot about how dehydrated he gets with the site being open and the binder that constricts his breathing. Combine both of those factors and you have yourself a breeding ground for plugs. That's exactly what happened to me on Sunday with him. The plugs were so thick that they blocked his airway off completely. Usually the cough-assist machine:  

and the suction machine:

are used to pull the plugs out. The problem Sunday was that they were too thick for the machines to pull out. I knew I was on borrowed time because he wasn't moving, his eyes were starting to close and he had no airway. I'm going to say that by a miracle of God alternating between the two machines and lavaging (figure 3), I was able to get the plug out of his trac. They still did not pull it out into the tube like usual but the suction had enough power to suck the plug at the tip of the tube; just enough for me to get it out of his trac and clear his airway. It happened twice to me and it's becoming a regular occurrence as long as he is in that binder. Though, we cannot remove the binder because that is what gives us minimal leakage on his skin from the gastric secretions. If we were to take the binder off (we have tried under direction from the doctors) the secretions will leak on to his skin and burn through several layers of his skin.

The set back with surgery is evidently the problem with the surgeons; as they have different opinions. However, I didn't mention that Jacob cannot have narcotics. Since he is a spinal cord injury, narcotics can be fatal to him. I can explain the physiology behind that in another post. So I ask you to consider his options; this surgery will cause him so much pain that he won't breathe on his own. Then you have to factor in the fact that he cannot have narcotics to relax him from all of the pain and anxiety. Doctors are weighing out the pros and cons as we are. Is it worth it to put this little boy through so much pain and not be able to do anything but wait until he recovers *if* he recovers? The pain can be so bad that it will spike his heart rate, temperature, and lower his oxygen sats. Or, is it a possibility for it to heal on its own? Science has recently come out with a brand new feeding tube similar to Jacob's current one. They are so new that they made one especially for Jacob because they weren't available to surgeons yet. However, after things got bad we opted out of the new tube until he settled down. So with all said, we are at a crossroads. Pain can have a negative affect on the body, possibly worse than this "healing" site is having on him right now. I have less than a month left at home until I go back to school and it doesn't seem as though this surgery will be happening before then, if at all.

Delay on surgery but not on hope

Jacob isn't doing so well anymore. This week, everything kind of fell apart. There was that one or two days of pure relief that this surgery was going to save my baby brother. Our surgeon said he would have a nurse call and schedule a time in the next week. Except we never got a call. So we called them and all of a sudden, we have his receptionist telling us that his new surgeon doesn't want to do it before he goes on vacation for three weeks. He refuses to use his on call time and has booked it for the end of August. Jacob has been like this for 10 almost 11 months. It's not my place to talk negatively about this surgeon so I won't. But that's ridiculous. He also told us that this would be a very simple surgery and my brother would be out of the hospital at most five days after his surgery was done. Now, we are learning that in fact this is not a simple surgery. The kids who have this surgery done are in so much abdominal discomfort that they don't want to breathe so they are put on a ventilator to do all of the breathing for them. That's no "simple" procedure at all. If I'm not mistaken, my brother has only been off a ventilator for 1 and a half years...maybe 2 and he's four. You cannot just put a person on a ventilator and pull them off expecting them to pick up breathing. It is a process, they have to be weaned off the extra support.

With that said, we are no longer going to have this surgeon perform this surgery. We are extremely close with our other surgeon at our main children's hospital and are hoping and praying that she will do it. She has put this off so long because it's not an easy surgery. Though that's not the part that is making me a bit antsy. It's that Jacob is declining. His dressings have been saturated and Wednesday we found bleeding around the site. That tells us that again we have gastric secretions leaking out and they are burning his skin, very rapidly. Soon the secretions will burn through internally, they may have already started to.

For the past week, I've taken a picture of the sunset every day. When I'm feeling kind of down I go outside and stare at the sky. If I simply cannot be satisfied with telling myself to get over it I look at the photos. My mother rolls her eyes at me which is okay because that sunset is a creation of God. He puts beautiful things in our life every day, if I really want to be risky, every moment. Although that sunset doesn't take away some of the worry and stress it makes me stop and appreciate what is around me. It's not just the sunsets either. It's the insects too. I hate bugs, I really do. For me to come out and say they are beautiful is like me saying I don't like shopping. But I was outside most of the week painting and I came across this spider and his web. It was an orange spider and I looked at its web; the way he spun it and the shapes. It was amazing. Then, this huge beetle looking thing crawling by me, red and yellow colored, with black stripes and I thought it was the cutest thing ever. My mom says I'm too sentimental...maybe I am. But what's wrong with appreciating the life around you? Those sunsets put a smile on my face that wouldn't have been there otherwise. The spider and his web made me marvel at the creation of such an intricate design.

You can think I'm crazy; that I'm not taking life seriously. But that was the problem, I was taking life too seriously. As far as I'm concerned anxiety is evil. It takes up space that should be filled with faith, hope, and joy. That doesn't mean you can be perfectly happy every moment..not at all. I'm perfectly content to say that I'm quite nervous at this point in time. My brother is in a lot of pain; he won't roll on his stomach, he cries out at night, and his heart rate will go up if you don't keep up on the tylenol and ibuprofen. However, there is no doubt in my mind that Jesus is with him and my family. I know God has this, it's playing out exactly how it's supposed to.

All in all though, I'm human, I want to be able to enjoy every single moment of life...find happiness in everything. But right now that's not possible, I'm not sure I'll ever get to that point. But it won't stop me from trying. As The Afters say, "Here's my broken Hallelujah." Jacob was here today and smiling...the whole family was. I haven't seen that for a few days and it was glorious to be a part of.

Quick update on the new doctor

Jacob met with his new surgeon today and he will definitely be going back into surgery within the next week or so. His surgeon told us that his site will never heal on its own, contrary to what our previous surgeon said. In a way this is both good and bad news. More so, just really tough to take in. With this surgery they are going to have to close up the hole in his stomach all together; without any tubes. Then, the surgeon will create a new stoma to put a new tube in, that's assuming the sutures hold his old stoma closed.

Another problem lies within the fact that he has a trac. I've mentioned before that he is extremely prone to pneumonia because he cannot clear his lungs by himself; he requires a bit of extra help from the cough-assist and suction machines on top of moving around. Since he will have to be in the hospital about five days after his surgery, the real battle becomes fighting to keep pneumonia from forming (we won't be able to take him out of bed.)  Our last surgeon said that this is a "major surgery" but I guess we won't know that until the day he goes in. Then we will know. So until then, I continue to pray for this unknown journey that is approaching. I trust in God completely and know he will take care of this, no matter what happens.

You deserve to be happy

When something in life isn't going your way~ your significant other just ended the relationship you tried so desperately to salvage, you fail a test, you don't get the job you want, your top college doesn't accept you, you lose a best friend, or you are simply just having a bad day....I want you to think back to this song. It's very personal to me as it relates to my thought process I go through every day. It reminds me that I have everything that I need in this life and so do you.

In my opinion, the simple life is the best life. And believe me, that's not something I learned over night.  Am I going to have hard times...yeah. Are YOU going to have tough situations? Of course, but you will push through them and come out on the other side with faith and a true understanding of hope. It might take a bit of work on your part but it will be worth it. God doesn't offer empty promises, he's there whether you want him there or not and hopefully you do....you need Him....through the good and the bad times.

I'm writing this post tonight because my life is so different. Suddenly, having my friends and family happy, safe, and healthy is what makes my day. I don't need superficial, materialistic items to supply my happiness. That is an empty form of joy and it's nothing like what the Lord can give you when you share his love and allow yourself to see and embrace His love for you.

With all said, my brother is doing well right now....he was stable today. But there is someone else who is near and dear to my heart that is currently undergoing testing for cancer. It came out of the blue; there were scab-like markings on their scalp and they knew they didn't hit their head. These markings have been there for a few months and something alarmed them to get it checked out. I pray to God every night that it's not cancer but it's out of my control. With all considered, don't view this song as a negative perspective rushing you to live your life. I want you to see it as a song showing you the most basic things in life taken for granted hold the greatest meaning when you really take the time to appreciate what's around you. It's like what Gillaume Apollinaire says, "Now and then it's good to stop in your pursuit of happiness and just be happy." Don't always focus on what is going to make you happy, focus on what is making you happy this day, because what (and by what I also mean who) makes you happy today may not be here tomorrow.

A growing bond

Do you ever feel like God put you where you are today in an exact moment for a reason? I believe God has a reason for every moment of our day, if he's present in our lives then every moment counts. But, when his plan is revealed to you; you know that he put you in that moment for a reason; and you know the reason, it takes on a whole new meaning.

The past two weeks have been a bit of a challenge. My brother has been quite unstable. Jacob's site is no closer to healing then it was before his surgery. His dressing is wet and he still drains gastric secretions. We have been blessed with the opportunity for him to see a new surgeon in a world renowned hospital, located in our home state, next week which should hopefully bring an end to his battle. The binder he's in is affecting his breathing more than any of us could've thought was possible. He's getting more mucus plugs (secretions in his lungs), pneumonia is a struggle to keep from developing every day, and there's always one part of the day where his heart rate gets too high, his oxygen sats get too low and we go into "emergency critical thinking mode."

 I was feeling confident in that I had grasped the true concept of living in the moment but for the past two weeks, the trials God has put me through...I"ve failed carrying through that way of life. However, I'm back on track now. Today is all that matters because today Jacob is living. Tomorrow could always be different and I'm confident now, in that I do understand that. I don't have to like it and I may like to be in denial sometimes but that's the way it is, which is what makes every smile of his more precious. 

Today I was with Jacob by myself and a new nurse to the field (ugh) because mom had to work tonight so she was sleeping. 

This nurse wasn't much help....

As I mentioned he plugs really easily and you have to take note of a high heart rate. I almost lost him today....his rate was 158 and climbing and I was losing his oxygen sats. I rapidly rushed over to the cough-assist machine to try and get secretions out and nothing was coming out of his trac. Absolutely nothing. Mind you the nurse is standing on the other side of the bed doing nothing. She didn't even recognize he was in trouble! Then I hear the monitor alarm again, displaying a heart rate of 167 and his oxygen still decreasing....I knew I was in trouble. I saw his eyes roll back into his head and I remember saying "Don't you dare." God was watching out for him today; well, he watches out for him every day but today he showed me his intervention to save Jacob.

Is it selfish of me to think that God worked through me? I truly felt like Jacob's human guardian angel today. I don't know how to make that sound less conceited, it's nothing to brag about at all. It's something to realize that not going to the beach or hanging out with friends is for a reason. I'm helping my baby brother so there's no sacrifice on my part. The saying "great things come with great sacrifice" doesn't apply to me today. I couldn't have imagined being anywhere else today. 

On that note, as long as this nurse was in this house today, Jacob wouldn't let go of my finger (his hands are too small to grab my hand.) He would always look around for me or my mom. There wasn't a single smile on that boy's face unless I walked over and talked to him or held his hand. After the nurse left, every time I walked by Jacob he smiled his angelic, wide smile at me. It almost looked like a genuine-thank you-type of smile. Now for those of you who don't know my brother in person, he doesn't do that. That's just not him. Of course he will smile if you sing a song, do "green hands" or play with him with one of his favorite toys like the alphabet apple or his musical dog but that's about it. Occasionally you get a smile when you say hi but that's pretty rare as well. Even after Jacob was in the protection of my dad and I, he would still smile when I walked over to his crib and would go right for my finer again. I didn't have to say a single word to him. That was a beautiful moment~one that when I think of God's love and grace I think of that moment.

~~~ I'd also like to add: please don't read this and feel bad for me or on the other side, think of me of some great person. I'm no different then anyone and I want to make that very clear. There's nothing better about me...God loves us all of the same. In addition, if you're reading this and feel sorry for me then I'm not doing a good job of conveying my message. There's nothing to feel bad about, God is in my life, he walks with me every step of the way, and I'm blessed with the most loving and supportive friends and family. Sure, he never lets me forget that I may not have Jacob in my life tomorrow but that's my individual path to walk (as well as my family's). Every day that we have with each other is a loving, beautiful, and divine blessing. God didn't promise us it would be easy but he promised he'd never leave us and he never has left me and I know he never will. 

Looking on the bright side

First off I just want to make note of my name change. People have been finding me on social networking sites and I've had some issues with that. I realize some of you continue to visit this blog on a regular basis, but not all do. This is merely for my protection.

Now on to the more important update. I feel that I need to lay off the heavy posts for a bit and focus on some good news! I know I constantly stress that it's important to live in the moment. But I also know that looking forward to the future is not necessarily a bad move either. Sometimes we all need an extra "push" to be able to focus on the other side of the rainbow.

So with that said, I have officially made my decision about where I'm returning to college. I was given the option to go to school in New York City or Boston, but I have willingly chosen to come back to UNCC!!! I couldn't be happier with my decision! At first I was very skeptical about returning to Charlotte but through constant prayers I have come to realize that this is where I need to be. The other part of the good news is that I now have a car to bring down there with me! It was detrimental to not have a car for my first year. I mean, I made it work as best I could but it was still awful. So now that I have one I can become more active in the city I love!

In my opinion, I feel that having some place to call home is what excites me most. I was going back and forth between home and Charlotte so often that I honestly became confused as to which place to call "my home." In the beginning of my first semester I was always homesick and then I had a boyfriend who wanted me in Charlotte. But I wasn't at the point where I wanted to stay in Charlotte. Then, towards the end of the year, I started to attach to North Carolina. And then just decided I should transfer closer to home. I truly believe I was just at a crucial learning stage in my life. Those dreaded words "growing up" come to mind when I think about last year.

All in all, now that I will have a car, know what to expect having been through my first year of college, and have settled in a state more permanently, I think that next year will be a bit better than last year. That's not to say I won't be homesick, I definitely will be. It will be even harder if Jacob is still sick like he is now. But, I am confident in God; that Jesus will be with me every step of the way.

Longing for healing

I yearn for the day that my brother will be okay. I'm sick and tired of living every day to the fullest because I have to. I want to live every day to the fullest because I choose to. A memory with Jacob not being sick is so far in my mind. I honestly cannot think of that day...how it felt; what it was like. It's like the feeling of winter. Snow is constantly falling and covering the ground. Everything is dead and then when spring comes around, it serves as our reminder of what we didn't have in those winter months. I so desperately want to see those flowers spring from the ground, be reminded of the vibrant colors that come with a season change. Today is one of those days that no matter if the sun is shining, I listen to an upbeat song, or watch my favorite movie, the sadness does not lighten. I'm not depressed, I''m just frustrated, confused, and tired.

 I woke up today feeling like someone had taken cinder blocks and put them on top of every part of my body. My body feels heavy, as if it takes work to lug this thing around everywhere. Watching my friends live a worry-free summer almsot makes me mad. They are going to the beach, waking up with no plans for the day, and sitting by the pool sipping iced tea with not a care in the world. Their only concern is that they don't get too much sun. Then there are others that have their fantasy summer loves. I can't even imagine....it must be wonderful. I guess what counts is even though I feel drained spiritually, I still have a few drops left. A few more than I did the last time life was so low.

The other day, I had an extremely tough time. Something had happened and I had failed to "love like Jesus does." I'm not going to go in further detail because it's personal. Nevertheless, I was sitting in our dining room, staring out the window. I wasn't in the position to cry out to Jesus so I kept it to myself and just prayed a rosary. I longed for some type of support because I really had no idea how to fix what I had just done, more so what I hadn't done. All of a sudden, there was this little fruit fly that flew on to my chest. Now it doesn't take a rocket scientist to figure out that I don't like bugs. Anything made with chitin I do not like. I've seen enough "Untold Stories of the ER" to be fearful of these little critters. They can fly into your outer extremities and it's just disgusting. So that being said, even the smallest fruit fly would make me get up and leave. But this one didn't. In fact, it felt like this little fly had been my friend forever; that I've known this bug my entire life. I cannot explain it, I really thought I was crazy. With everything going on in life, it wouldn't surprise me the least bit if I became a little insane. But because this little fruit fly served as my comfort I asked God. I basically told him exactly what I just wrote. At that point, I had gotten up because one of my brothers got into something they shouldn't have. And when I came to sit down in that exact same spot it was gone. So again, I asked God for some type of comfort and the fruit fly came back to my chest. It hovered around my heart. Now I know what you're thinking, this couldn't possibly be anything significant. But someone last year had told me that there was no such thing as coincidences and he himself didn't believe in them. That has stuck with me ever since. There was utter peace and grace that washed over me in that fly's presence.

I knew I was crashing ever so slightly towards the beginning of the week. I was hoping that every new day I woke up, I would shove this feeling down a bit further and rise above it. Jacob is really not doing well. We are allowing him "tummy time" because we've exhausted all of our recourses. It's the quality of life that makes a difference for him. We (my family) really thought that we were getting the upper hand on his site. But he's crying out in his sleep and his dressings are saturated again. His site looks awful; you can tell the secretions have reached his skin.

 As I type this, I'm sitting across from Jacob's bed downstairs watching the kids play. Jacob just looked up at me and smiled...is it okay to cry in front of a child? That smile of his could melt the ice off of anyone's heart. It's just so pure. It can be a challenge to be happy 24 hours a day and sometimes, you fall. Today as I type this blog, I have definitely fallen. When tomorrow rolls around, I've got to pick right back up as if nothing is wrong and continue the day with a smile on my face, because one day, everything will be okay. I'm just not sure how soon that day will come. So with that said, I have to cut my losses and remember that God gave me today. When I finish this post, noting can be wrong. Happiness and fulfillment become the remainder of the goals because of Jacob. Regardless of the pain he may be in, he still manages to smile like nothing is wrong.