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

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

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

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

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

Where are you God?

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

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

Evil has many forms

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

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

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

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

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

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

In need of a miracle.

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

Where are you in life at this very second?

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

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

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

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

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

The love of family shouldn't be taken for granted

Last night was one of the most beautiful nights I've witnessed in a long time. I was placed in the very front, at the beginning of the red carpet where I had the incredible privilege of greeting the guests of Joy Prom 2013 first hand. I clapped for an hour and a half straight and gave out more high fives than I can keep track of; making my hands go numb; and woke up with no voice today but it was totally worth it. Just seeing their eyes light up when they walked down that red carpet, you knew that that they knew this was their night. Some would walk down that carpet like they owned the place and some would timidly place one foot in front of the other unsure of the possibilities awaiting them at the end. Some of them would look right at me and as if my smile wasn't wide enough I managed to smile even bigger for them. You can't help but be excited for them, I cannot describe it. That's why I'm having such a difficult time writing this post. Usually I can describe a scene right down to the scent but what I experienced last night, purely a work of God, is truly indescribable.

But with every miracle there is tragedy. I was talking on the phone with my mom today, telling her about Joy Prom and I was describing one of the guests who was in a wheelchair and my mind automatically flipped to this boy in foster care. Instead of the guest I was describing to my mom, the image was of this boy, all dressed up and at Joy Prom. I almost dropped the phone and started crying. I will not release this boy's name for the sake of security. This boy has been in foster care since I can remember, he was there when my family found the newest edition to our family and I believe my other brother as well. This whole thing started about a week ago, one night I couldn't fall asleep and I had decided to check the heart gallery back in my home state to see who was still up for adoption and what the new editions were. My heart dropped seeing so many familiar faces. The same children that were available 10 years ago were still available. Talk about a tragedy. Gosh I don't like thinking about what life would be like without my family but many of these children haven't been able to experience that love.

Anyways, this boy I've mentioned has both cognitive and physical disabilities. In addition, I found out that he was diagnosed with cancer a few years ago. He's 17 years old right now and I'm pretty sure he's been in foster care most of his life. It's difficult for these children to be placed since there's a known chance that they may not survive. I don't blame anyone for that, it's human instinct to shy away from loss and grief. Unfortunately for this boy, it may mean the difference between finding a family or not. Since he's 17 he's only got one year left in foster care. I'm not sure what happens to adults who do not have a family. Hopefully the state has worked out some type of support for them; my guess would be a group home. God forbid he get sent to a nursing home....

I'm sure you're wondering why I'm writing about someone I don't know and where I'm going with all of this. Well, so am I. I just knew I had to write tonight; I don't have all of the answers and I cannot figure out why this boy has become so significant. But every time I think about him, I cry. I am somewhat of an emotional individual but I wouldn't say that I'm easily upset. Sure, I may only shed a few tears for about a minute but every time? Evidently I'm not seeing the whole picture here. Nonetheless, this boy has become an important part of my life. Suddenly, the work I'm doing for children is not only for them and my brothers but for this boy in particular. I feel that God has put him on my heart so that I would pray for him and I am, every day. I'm not exactly sure what to pray for so I say it all; the love of a family, happiness, his health, and the guidance/care of God every day.

It's a harsh reality but I know I cannot save them all. In the field of work I'm going into, I cannot save every child. I'd like to think I could rid this world of children suffering but I know that I alone and in my lifetime cannot accomplish such a challenging and impossible task. Maybe I'm thinking to much (it's been known to happen). No matter what I do, there will always be someone left behind. Not the usual optimistic twist I put on life but it's something to think about. I don't know this boy at all. Never met him in my life, the only way I know what I do is through the file online about him. Yet, he means so much to me...all I want for him is to know the love of a family! He's been through so much and has not been given a family. I realize people have different crosses and this could be a blessing in disguise but I have yet to see the silver lining. Part of me wants to cry because of his circumstances and part of me wants to smile because he must have so much love from God to make up for no family.

With all said, this boy has prompted me to do something (still haven't figured out how I'm going to do it yet). Although, I'm not sure it's (so to speak) on time to help him. This boy and so many other children (including my brothers) are certainly the main influence for this but it's the children who follow in their footsteps that will experience change, for lack of a better word. I suppose this is where the saying "God works in mysterious ways" comes into play. This boy and so many other children I've met in the hospital while my brother was a patient just need to be loved. Even a letter from someone could mean the world to them.

Update

Thank you all for your support and prayers. I have been dealing with the death of someone very near and dear to my heart this past week. I just got back from New York today and will be getting back to this blog this weekend. I have missed writing a great deal! ~Celeste Anne