Apology to God

To my audience: 
I am writing this because I haven't been writing blogs for the right reasons. This is not to share an experience with you or really for you, it is for me to write to God. The movie "Letters to God" is what helped me reach this point last night and I had decided to write this. If you reach a time in your life where this letter becomes helpful, then by all means use it for your beautiful souls. But I'm writing this without expecting an audience. This blog's purpose was for my brother Jacob and that will be its only use from now on.


Dear God,

I want to make a confession. I started out with good intentions for this blog but allowed myself to get caught up in the superficial powers of having a blog. I was always writing about me. I was spreading your word but not in a holy way. I'm ashamed and feel disgusted, and being completely honest, I've been a complete hypocrite. The stories I share and lessons I seem to be learning have not been learned until today, which you know. Everything with me has been all words and no actions which I swore I wouldn't do. My God, I have forsaken you yet again. 

Looking back on the past few weeks I've been going though my life immersed in my academics thinking I was in a good place. Now only to find out, that was not the case and I wasn't anywhere close to you. I know you brought me to the south to strengthen my faith and relationship with you and to bare one of my crosses. I've struggled, crashed, and burned but somehow kept finding the strength in you every time to pick me back up again. Last night was scary for me, I haven't ever been closer to you yet  so far away. I just don't understand how I allowed myself to get lost like this....I've been on a self discovery path for the past 2 months and you have been opening one door immediately after another one closes. I haven't had time to process the change you have put in my life or where you seem to be leading me to. That being said, I'm okay with that because I fully trust you with my heart and soul God. But I lost myself after that, I'm no longer the strong, independent, faithful woman you need me to be. I'm a sinful coward who won't even say the rosary anymore because of the time it takes. How awful, I can't believe I'm admitting this to you but I feel that you already knew. And yet, the rosary gives me so much peace and serenity, a pure gift from Heaven I'm sure every time. No matter what I've done or how I've acted it never fails to bring me comfort. 

Looking back on the last few weeks I see a girl who was in a dark corner all by herself, hood up blocking out the rest of the world. My rosary was an arms length away but I wasn't reaching for it. All it took was the effort to reach my hand out, to touch it and to start praying but I was too caught up in my own thoughts to recognize what you needed me to do. This blog has done more damage than it has good. But there is another reason behind these posts which only you and me know. You know what I'm thinking as soon as I publish one; who I have been letting ruin my life from the inside out. But last night I prayed, I cried, and confessed my heart. All it took was a night of prayer and I got my answer today. How amazing you are God, I love you. I act like it's a surprise that you came to my rescue once again but it's not. I can't put into words how your love is always in me. Today you and I are walking together down the right path, the one where the sun is shining. I don't care that I don't see where it's going because you'll guide my every step. But today is the day that I'm walking away from the abuse that was taking my life away. So today I am working towards the Celeste you want me to be. 

Also God, I know this might sound crazy but it felt like there was a light shining from my soul. Today you helped me reach the point where I can see what I was doing wrong. Tonight, I have reached closure and I feel it throughout my body. I feel lighter than I have with your God given peaceful embrace. You told me to come to you and I am. I want nothing more than to please you and I wasn't doing that. I also want to say that I have never felt this way before; at that moment earlier today I was just walking around my room and just thought about how blessed I am to have been given the opportunity to experience what is waiting for me, and I promise you God that I will not let you down. 

It honestly sucks that you had to see me fall again because I want you to know how much your love means to me. It was my active choice to not walk away from it and that's what I did. I let control and abuse run my life and all it did was tear my soul apart. It's hit me like a ton of bricks that this is what has been turning my world upside down, this one battle. I don't know how long this peace will last but I am enjoying it while I have it. I know that what I'm feeling now is what I need to remember as I go through the rest of my life serving you. Mom says that what I experienced is waiting for me but I need to complete some other tasks first before you reveal the full gift to me. And I will wait, I will serve you in any way you need me to.  

~God, you know what's on my heart right now. I pray for their safety, health, faith in you, and happiness. 

Love, Celeste

Short and Sweet

I haven't been on for a while due to a wretched thing called mono. I wound up at the medical center yesterday because of it. I'm nowhere close to being better yet (traveling was brutal today) but I'm well enough to do this. I miss writing without a grade attached. So with that said, lately I've had an interest in bridesmaid dresses. I have found my top 3, they all fit the theme "simply elegant' which is what I want.

Top 1 dress
Top 2 dress
Top 3 dress

I am still a girl with dreams....I want to meet my prince charming or if I already have I want to know which one he is. Marriage, although I talk about not getting married yet is still very much a part of my future, just not today and probably not tomorrow. My point is, that it will happen at the utmost perfect moment. My human desires don't compare to God's wants/desires for me. That is why I am okay with waiting, he doesn't want me to focus on that part of my life right now and I know that. Where he wants my focus right now is with children who need help and my academics. 

The reason I'm talking about marriage and jobs (as usual) is because in the airport today a woman sittning next to me was talking to her best friend on the phone. This woman has children and a husband; a whole life back at home and she is going in for a potentially fatal heart surgery tomorrow. The thing with open heart surgery is that the doctors have to stop your heart in order to work on it but if they stop it, they have to restart it. Sometimes, they can't restart people's hearts, for whatever reason, so they die. My mom told me that when my brother had open heart surgery, the doctors had a hard time starting his heart again. He had this surgery when he was only a few months old......you want to talk about how precious life is? There was also a man on a plane (not mine) who was expecting today to be a normal travel day, only to find out that he would hold up an entire flight so he could be taken away by the paramedics. Oh and how about the guy I saw on TV today who was a heavy drug addict and had a heart attack because of it....

I guess these things really make me look hard at what I'm doing everyday. Yes, I get on average 4-5 hours of sleep a night and consider "zombie" as a main characteristic to describe myself. I wear myself so thin to the point where I get stuck in situations like I'm in right now, having mono and not slowing down to give my body a chance to fight it off. I spend 3-4 hours everyday except Wednesday and Friday at the library; Saturday could be 6 hours depending on if I have other obligations or not. But I'm doing something, it counts and I'm working towards my dreams which is all that really matters. I have an amazing family and great friends in North Carolina and home that push me the extra mile, even if I don't see all of them in person for the support. 

With all considered, I'm no where close to perfect. There is a great deal of heart felt joy I feel that you all are inspired by my optimism on life, but I do struggle. It's not like everyday I wake up and think 'I'm living my life to the fullest today' because that's not realistic. Of course when I get as sick as I am or I hear about someone who has a potentially lethal disease family or not, of course it kicks my butt in gear. But sometimes, I need extra encouragement from someone to tell me to try harder or do something different. I'm not always calm and mellow going through the struggles God puts in my life.....

There's more to say including a bible and sermon reference but I just don't have the energy and my temp is rising again. I promise I'll finnish this blog soon. Have a great Easter if you celebrate!    

 

No One

Yesterday I heard a song on Pandora from my childhood called "No One" by Aly and AJ. Now don't laugh I know it's a Disney song and not really popular but some of  the lyrics  stood out to me last night.

"And I ask myself
Who do I wanna be?
Do I wanna throw away the key?
and invent a whole new me"

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight ~Proverbs 3: 5-6

Sometimes, when we're in the middle of the storm it's hard for us to see the end of it. All we are focused on is what is happening at this very moment. The confusion, the pain, and the helplessness. We can't always look past our doubts to truly let ourselves go and trust God. This happens quite often in every big decision we're left to make. I still find myself admitting to God that I'm not fully trusting in where he's taking me. It truly breaks my heart to admit this because of all he's done and how much he loves me and everyone else. As I see it, he likes to shake the ground before he flattens it out for us to walk on. The day he chooses to let us fall through the cracks is the day we are caught in his embrace. He never lets any of us go regardless of what we have done or how we think. 

I think the best example for this is what being far from home has done for me. I'm not exaggerating this by any means but it's been a really tough path since August. These two semesters have truly tested my trust in God. So what's different about this time? I don't know if I''ll be at UNC Charlotte or Tufts next year. I may not even be in college next year. For all I know I may be in South America for one semester and at a community college for the other semester. All I can really say is pray, pray, pray!

I just got the news that I may not be coming back to UNC Charlotte ever...with the condition this country's economy is in, there isn't enough financial aid to go around. I'm dependent on that extra help and it doesn't look I'll be getting that next year. In addition, my dad is on the verge of losing his job because he's been missing so much work due to the unstableness of Jacob and mom is going to lose one of her jobs. Plus, my little job cannot possibly pay for tuition to a four year university. I'm kind of sad and down about that because I love Charlotte and the people here. But at the same time I'm content because I know God has got a plan for me; the more days that go by the more I feel I won't be at this university next fall, and the more definite this mission work is looking to be. Actually, I'm almost sure of it because God will be taking me out of my comfort zone and usually, when I'm found staying in my comfort zone I'm not where I'm supposed to be.

It is the risks we take that strengthens our trust and love in God. The most I've been away from my family is a little over 2 months. But this trip to Guatemala or Brazil....wherever I decide to go for 2-3 months...it's nerve-wracking to say the least. I have butterflies in my stomach just thinking about it! Not only would I not have access to communicating with my friends and family in the United States but it's also putting a responsibility of spreading God's word to others. I have not memorized bible verses or even read the whole bible. This is the first year that I've used a bible and had it in every day life. With that noted, I'm not very confident in my knowledge. There are specifics that I know but I am not fully attune to what it takes. The basis of this trip is taking care of orphan children and making sure they're being treated right. In addition, it's also sharing the gospel with them in a way they can understand. A lot of people here in Charlotte are able to quote from the bible but I cannot. Im really quite ashamed but it just wasn't in my upbringing. That's what makes me nervous, in my own selfish and unknowing ways, it seems like God is asking a lot of me in this next year. But who am I to judge? 

About two months ago, I had a serious realization that I was on the wrong path, or had been before. Everything since that day, my life has done a complete 360 degree turn in the other direction. Before I knew it, not only did my view on the world change but I was beginning to question who I wanted to be. Not who I was going to be for others, or who I thought I was, but who I wanted to be~ Who we want to be is who God wants us to be. He puts those yearnings in our hearts for a reason; it's our choice whether we choose to respond to that feeling or go our own way. I honestly believe that there is only one we need to make happy and that's God. If he's happy then the love and happiness you're given to offer will spread.  

Back to the important part, the second line in the chorus "Do I wanna throw away the key?"; I interpret this as a key to the Kingdom of God. It's the key to our individual life that leads us to him. Throwing away the key is evidently throwing away everything. It made me think about people in general. Really, mankind as a whole. Our whole lives are based on self discovery, trial and error, and getting to know God so we can better know ourselves. That "key" is what makes every person's soul on this Earth something beautiful and valuable (minus the sin). I pray for those people willingly/unwillingly throwing away their key.

Above all, trusting God gives you the all-embracing feeling of peace. I never believed people when asking the question "How do you know?" with the response of: "You just know." But, now I know. Unequivocally, I can say that I just know I'm in the right place doing the right thing. And I believe this holds true for everyone else. 

Quick Notice

I have not stopped blogging about Jacob indefinitely but I will not be able to release any detailed information on his condition at this time. I can say though, that he may be getting rid of the GJ tube and have a better tube placed soon.

What I really want to get excited about is my other brother's leukemia test came back negative! My mother made me aware of this after Christmas Day and it has been a constant worry ever since. He has Down Syndrome; who knew that an extra chromosome could increase his chances for the most deadliest leukemia out there because of it.

THANK YOU GOD! <3

Just wanted to do a quick update. Life has been exceedingly busy over the last week so I have not had time to post much. In addition, due to specific circumstances I cannot post about Jacob's current state. But again, thank you all for your support! It truly means a lot to me :) 

Have a wonderful weekend and make your time last.

Oh...and remember God is always with you. He loves you all ~ Celeste Anne

Actions Speak Louder Than Words

Since Jacob is doing so well today I decided to take a break from the hospitalization stress/anxiety and post about something that has been on my heart for a while.

Am I jealous? If I have to ask myself then the answer is probably yes. Everyone calls this girl sweet, nice, and blah blah blah. But I'm telling you there is something about her that makes my stomach turn. I don't trust her and I don't know why. I think part of it has to do with the fact that she will post pictures of special needs children and praise them for doing a task. Now I know, that probably sounds insane; why would that be bad right? Well let me tell you.

She praises the action but she's not posting it to show the accomplishment of a child, no she makes it very clear that she is showing the accomplishment of a child who otherwise wouldn't be able to complete such a task. It is not just her, there are plenty of other people that share posts like these on Facebook but it was a personal example that bothered me more than the others. THEY JUST WANT TO BE TREATED LIKE NORMAL PEOPLE AND GIVEN THE ATTENTION OF ANY OTHER PERSON.......what is so darn hard to grasp about that?! Sorry, I had to vent that out. My family and I don't appreciate it when people come up to one of my brothers, notice they are "different" and give them special attention. It truly is as simple as offering them a sticker and no other kids around get one or giving them a special balloon that nobody else gets....do you see a pattern here? Sure for a few seconds they may be excited but after the initial excitement passes the question "Why do I get it and nobody else does?" comes up. I mean, how do I tell my brother that people don't see him as an average child. Any physical difference represents unfamiliarity in other's eyes and they aren't sure how to react. How do I tell my brothers that most people don't look past their physical differences? That is what you are saying when you post a picture on Facebook of someone with special needs doing a task that any other person can complete. You praise them for doing it as you would any other child, you don't praise them for completing it because of their limitation.

It honestly disgusts me and I do get very offended by such posts. This is the part of my world that I don't think all people are exposed to. Another example of this is we had our priest at our house a few days ago to pray the Prayer of the Sick for Jacob and he like all, told us that what our family does is amazing. That taking on children like this requires a big heart and that we are all special. Okay let me start out by saying absolutely not! We don't like to hear this, we consider these boys part of the family and children. Not 'children like these.' With that said, I do not personally blame anyone who says this. It's simply the lack of experience. Before my brothers came along I was in the exact same spot as everyone else. Only after they were part of my life did I begin to see that they are just people and want nothing more than to be treated like nothing is wrong and in my eyes, there is nothing wrong. The medical diagnoses received are nothing but a bump in the road for them. They can still do everything any other child can, only in a moderated or alternated way. Or, what I like to say: in varied ways.

There is an AMAZING group I am a part of on Facebook called Sibteen. They are my support group through it all. We post all of the time about things we see on TV or on Facebook that we find offensive.  I could write an entire essay on the word "retarded" and why it is not to be used but I don't have that kind of time. Nor do I believe anyone wants to read through it all. The reason I'm bringing this up is because one of the girls just posted about the show "Glee" and how one of the characters blamed her snobby behavior and hateful comments by saying "Sorry Aspergers." That's only one example and that I would argue as offensive and should be edited. I don't care how simple it is, I am a firm believer in equality and society most certainly doesn't treat disabilities as equal. This is where child advocacy begins; my path to fighting for the rights of children who want nothing more than to be equal. You can debate all you want about how society accepts all people (you're entitled to your own opinions) but I beg to differ. Jacob knows he can't walk; he's felt his legs and seen them not move; he's touched his trac and touched my neck to see if I had one; he is cognitively aware of it all. One afternoon we took him to practice steering his motorized wheelchair and a lady came up to him very bluntly and said "You poor dear, what's wrong with you?" Now before you jump to conclusions and say I'm overreacting like many others had stated.....

I want you to imagine yourself paralyzed, in a wheelchair unable to move. Imagine what it would be like looking at everyone around you who are standing and moving their legs. You look down and nothing happens. Perhaps you catch a stranger or two, adult or child staring and you're then reminded of the separation people put between you and them. Maybe that didn't make you feel bad, maybe you quickly got over that. That's fine, but from the corner of your eye you see an older woman approaching you. She isn't smiling at you, she's frowning and looks as if she feels sorry for you. Her eyebrows furrow meeting the middle as one, the corner of her mouth turn down, and she walks towards you with arms outstretched. Just when you recognize her emotions she says (like she said to my four year old brother) "You poor dear, what is wrong with you?" Now I really want you to think about this, wouldn't your first response be 'there's nothing wrong with me.' Wouldn't you want to tell this woman that sure you may not be able to walk but you are still as capable as anyone else who can walk; that you contribute just as much to the world as everyone else. Yes, I believe that is what you would want to tell her as my little brother was thinking in his head based on his nonverbal response. Being physically disabled....oh how I cringe at using that word...being physically limited doesn't mean you're cognitively delayed. This is something even the school systems don't recognize. They thought my two brothers who cannot walk by themselves were cognitively disabled which isn't true. Some people only need to see one limitation before their entire outlook for this child is altered. It's not just my brothers I've seen this happen to either. All in all, what I hope you can take away from this post is that words hurt and actions speak louder than words. Don't assume someone doesn't understand you're noticing a limitation. The fact is, they are used to it which is a terrible reality to admit. That is something I hope to change for the future.....I don't want these children to have to accept that people will look at them differently. Sure that is a tall order to fill but even changing a few people's perspective is all I need. It is one less person in their eyes and one person can make all of the difference.

~~~~It is not my intention for this to sound mean, I want you to be exposed to the other side, a new perspective in hopes that you will increase your awareness of others around you and that they have feelings too.

The Beginning Misconception

Before I get into this I just want to say don't be afraid to leave a comment! I've been getting a lot of emails from people which is great but just know it's totally okay to comment..

Now that you have an idea of the environment we were in it's time to focus on the whole part of this experience. I'll start with Jacob first. When he was eventually discharged home we had a terrible time with him for the first six months. That whole anaphylactic shock issue I explained was more of an issue at home. When he was in the hospital the nurses in the Pediatric Intensive Care Unit (PICU) would not pick him up unless for medical reasons. At night he would lay in his crib alone without anyone there to pick him up when he cried. I really didn't like this particular PICU or the nurses...However, this is something that you need to realize about the hospital. Nurses and doctors are not obligated to pick up a child. It's truly a personal choice, now you would think that common sense would make these health care providers pick up these children but ultimately that is not ever the case, at least not at this hospital. So there's one misconception about the care there. Back to Jacob, he didn't know to cuddle up to mom when he was sick or unhappy. This was a learned behavior which should have been uh...a natural behavior? I don't remember junior year psychology. Anyways, the point here is that Jacob learned to put himself to sleep and make himself feel better when he was upset because nobody ever came to his aid unless his alarms had been sounding for 5 minutes or more.There is a story that relates to this perfectly which I would like to share with you all. In terms of Jacob's experience, we know that the angels were there for him at night and it's nice to think that perhaps God was there for him in this way as well. 

~~ A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David, held her hand as they braced themselves for the latest news. That afternoon of March 10, 1991 , complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing. At 2 inches long and weighing only one pound nine ounces, they already knew she was perilously premature. Still, the doctor's soft words dropped like bombs. "I don't think she's going to make it," he said, as kindly as he could. "There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one"

          Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived. She would never walk, she would never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on."No! No!" was all Diana could say. She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl. There was never a moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. 
          At last, when Dana turned two months old. Her parents were able to hold her in their arms for the very first time. And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted. Five years later, when Dana was a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story. One blistering afternoon in the summer of 1996 near her home in Irving , Texas , Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing.
As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent Hugging her arms across her chest, little Dana asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Dana closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet. It smells like rain." Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced,
          "No, it smells like Him. It smells like God when you lay your head on His chest." Tears blurred Diana's eyes as Dana happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well. "No, it smells like Him. It smells like God when you lay your head on His chest." Tears blurred Diana's eyes as Dana happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.

I'm taking advantage of the time I have to write a blog every day, this won't last once I get back to college next week. Today I actually have better news; Jacob was stable today and his stitches are still in place! They can still rip at any moment but that extra pressure makes us try considerably hard to make sure that doesn't happen. It is reason to celebrate though because this is the longest he's lasted without a trip to the emergency room from the last two times he had this hole "patched up." I find that the world is a very pessimistic place. The reason I feel that is worth mentioning is because most not all, of the world doesn't believe Jacob will get through this without hospitalization for months. His nursing agency, the doctors, and many outsiders are giving my family grief as to why we haven't brought him there yet. It's a touchy subject for me and I want to scream. If it was their child do you really think they would give up and put their child in the hospital for several months IF they hold on that long? No I don't believe they would so why would you dare cast that fate on someone else?

There seems to be a misunderstanding about hospitalization. There is more to being in the hospital than just being "sick." That is the one detail I feel that people forget. It may just be because I'm there all of the time but when someone says hospital, most people associate it with sickness. Now that is quite a normal and expected response but how about you consider the whole person there. I feel that this perspective will be more successfully conveyed through show vs. tell (as it is only my personal take).

It's an average Saturday visiting Jacob in the Pediatric Intensive Care Unit. Walking through those double doors on the way to Jacob's room I walked by the other patients rooms. Some were conscious and others not. You always hear an array of noises; alarms from ventilators, the call button from frazzled and worried parents, or the dreaded "code blue" call. Luckily, I was rarely around when that occurred.  Walking into Jacob's room you see his mechanical ventilator, about 4.5 feet tall one side of his bed with a long blue tube attached, wound around the bars of his crib. On his chest there are red, gray, and blue wires that connect to the monitor next his vent. The top number measured his oxygen saturation which I anxiously watched hoping it wouldn't drop below 92.You can hear every breath that the machine forces in and out of his chest; the rise and fall all orchestrated by a machine.

Most of the time, Jacob was in isolation for multiple reasons. He rarely saw our actual faces, we were required to wear gloves, a yellow gown, and a face mask. All he could see were our eyes; there really is truth to smiling with your eyes. Those 2 and a half years he was in the hospital was definitely the most difficult two years of my life. I cried every night, some days were better than others but for the most part every day was a roller coaster. It is no different from now but I suppose at the time I just wasn't used to living on edge every day. The night before his second birthday he went into cardiac arrest. The hospital performed CPR on him for 30 minutes and were not hopeful they would be able to bring him back. It's difficult for me to write this even now. I cannot express in words how difficult this is. Jacob knows when he can't breathe and he cries because he's obviously scared. He's not numb to going out of consciousness, he feels everything. Some of you don't know what it feels like to pass out from a lack of oxygen so I'll do my best to describe it to you. At first your chest gets tight and you feel your throat closing (it's your bronchial tubes narrowing). Where some people can cough the extra mucus up Jacob isn't strong enough to have what they call a productive cough. For this reason, you always have to be aware of his oxygen sats. Once they drop and he sounds what we call "junky" (in better terms congested) you suction him. This is nothing more than sticking a plastic tube down his trac, attached to a machine full of air that sucks those secretions out. Nowadays because we found that suction machine to be damaging his tracheal lining we use the coughesist. This machine is used in people with cystic fibrosis. It forces air in and sucks air out which essentially takes the place of the cough he doesn't have. When I go out of consciousness my body reacts differently than his. Since he is a spinal cord injury, he cannot regulate his body temperature. So when he gets in trouble it is a whole body affect. I may not be able to breathe but all my other vitals are stable. When he has a problem breathing and he knows it, he has a high chance of going into anaphylactic shock. His blood pressure and heart rate can sky rocket while his oxygen saturation plumets. This is why it's critical to make sure he doesn't drown in his own secretions; I'm still on the physical sickness part, I haven't even touched the emotional affects yet......on everyone. That will be a new entry. This is long enough for one and it starts the beginning of this whole journey. Not only that but the reason behind why I always choose to write about children's rights and the importance of quality of life; why my passion and career path revolve around fighting for these children's rights.

Love, Hope, and Pray

Today was yet another stressful day but at the same time much easier than the last few. The overwhelming support I have from people is astounding and I am very blessed. Last night was amazing for just that reason, I had messages from God sent my way through some of my greatest friends as well as some new. Got to love how God works through people......


Well anyways, Jacob has a "splint" (home invented really) to keep him from twisting. His trunk and hips need to stay aligned in order for the stitches holding the GJ tube to stay in place. We have already lost one stitch and there are only three. I swear we protect those stitches with our lives. Basically imagine a backboard that the paramedics use, it is a little more bendable than that but that is the general idea. It's not meant for free movement. Now here is where that saying "tough love" comes into play. He's had this splint type barricade since last thursday which limits him quite a lot. For example, he cannot be in his motorized wheelchair with this large obnoxious thing and his high chair won't fit it either. He also really shouldn't be scraping against the floor crawling which leaves two options; his specially made stroller and his bed.

 How awful for a four year old who just wants to play right? I've been home from college since Friday evening and I watch him bored as ever, in front of the TV because he can't move anywhere. Well, I won't say at all but he's pretty restricted....doctors orders and you know you don't go against those. So all in all, he's really a one-to-one, we play with him in bed or in his stroller to try and make this a little more bearable. It truly breaks my heart watching him just sit there. He knows nobody is going to get him up which is why singing "Jingle Bells" and "We Wish You a Merry Christmas" 40+ times was the highlight of my day. Jacob has one of those musical books you know where you push the button and a song comes on. He's memorized which button plays which song so he kept switching back between the two songs and I just kept singing them over and over again. That's the most I've seen him smile and laugh in the few days I've been here. Just thinking about it now brings me utter joy and peace. That smile, a smile of a true fighter is what will help me through this all. If he's going to smile and be in a world of play then I will absolutely do the same, for him.

That being said though, I can't really say I'm completely relaxed so to speak. I mean aside from seeing my ex boyfriend calling another girl beautiful.....oh wait that's not important is it?...... No but I wish it didn't bother me.

More importantly, my mother keeps talking about the future as if Jacob will be in the hospital for months. The conversations usually ends with "If he is in the hospital then..." That definitely worries me, I mean I'm a true worrier at heart but I don't think we should even think about it unless there's a 99% chance it will happen. Ugh this makes my stomach turn inside out just thinking about it. I just can't ever forget that God is here with us always. He's watching over Jacob and keeping my family together to give Jacob the best care possible. Which reminds me, we're having another problem with nursing care. Big shocker there! I cannot go into details about that though, that's confidential from a legal standpoint.

At this very moment, I'm feeling extremely uneasy; that's never a good sign. I'd like to blame it on this ex boyfriend deal but I know that's not it. I guess all I can say to that is I'll deal with whatever obstacle lies ahead for my family. I know we are never alone and if God gives me the gift of knowing ahead of time then he will for sure carry us all through it. That is something that I've been able to detect since I was young. I always know when something "evil" is coming our way. No, Jacob's condition isn't evil but the fear it causes us and the lack of trust we have in God is. I think with all considered, it's time I go listen to Sanctus Real and Leeland. I find "Pray" to be one of my favorites and also one of the most strengthening for me.

How it Began Part Two

Today is really tough, just when I thought things couldn't get worse they hit an all time low. Every time I come home Jacob is in some shape or form fighting for his life. Christmas break he was in and out of the hospital every couple of days and at that time I had a wonderful boyfriend to run to in times of doubt and fear. This time not so much....life is always changing, people coming and going in and out of our lives every day. 

But the one who always remains is God. If I can write that on a blog why do I find myself not as faithful? I feel disgusted to even say that for all that's been given to me. So what I believe it comes down to is the fact that its an innocent life that's being affected. That's the difference, a young, vulnerable, innocent child is going through trials and tribulations that some of us will never face. A four year old has dealt with death at his door more times than I've had the common cold. 

My family and I have been with him through it all. As I reflect back to those times I see the amount of faith and love we all had. We were a team full of strength, hope, and faith.. Right now we are a team full of fear, doubt, stress and some faith. I think the real question here is do we love God enough to trust him with this child's life? Can we let go of all our fears and let God take over completely? That is the single most problem I believe we face. 

So deviating from that thought I should probably explain what is wrong with Jacob currently. He has Prune Belly Syndrome which has a multitude of levels of severity. This affects Jacob in that he doesn't have a strong stomach muscle. This syndrome can lead to all types of malformations and dysfunctions. Luckily we scored high on this one...well I mean compared to some. Anyways, he used to have a mickey button which is a type of feeding tube. It goes straight into the stomach:

http://www.mic-key.com/media/40679/r8201b_mic-key_care_guide_english.pdf

The important concept to remember here is that the mic-key button is easiest on Jacob as well as to care for. In addition what happened was the mic-key button stretched his stoma. He's a four year old and active crawler. When the mic-key button stretched Jacob's tube, his feeding started to leak out of his stomach. He started losing a pound a day, had no stamina, and wasn't smiling anymore. Come to find out he was slowly starving to death because his feedings were leaking out. Fast forward to a month later; they put a new tube in called the GJ tube, while doctors waited for the hole from the mic-key button to heal up. After it healed it would enable them to place a new mic-key button in and continue on feeds. In simpler terms, this new tube would give his stoma time to tighten back up thus allowing the mic-key button to be placed back in. The real problem lies with the GJ tube. The GJ tube is an alternate and temporary tube placed in the jejunum of his small intestine. It is held in by stitches which is where our battle begins. Since Jacob has prune belly syndrome, he doesn't have a well developed stomach muscle to support this tube. The stitches aren't holding which causes tube feed to leak out and him not to get nutrients. Since the stitches won't hold, surgery is not an option. The doctor says that if the stitches currently won't hold, surgery will be inaffective as well. 

Well, theres an experimental surgery done at Boston's Children's Hospital which has had great success. It's a muscle transplant surgery. However, this is very risky. The chances of it not working are significantly high. My mother says that if it were an arm that they were working with it would be a different story but because it's his stomach that there is no guarantee. Not to mention putting him through a major surgery like that without guarantee is cruel and senseless. Which brings us back to square one again, the next option is having him receive feedings through IV's in the hospital for months. To begin with, that's an awful fate for someone who has spent the last 4 years in and out of that place. In addition, with his trac and respiratory needs the chances of him contracting pneumonia from being in bed all that time is extremely high. If he gets pneumonia then there is much more to fear than just the GJ tube. The severity of this situation is quite an issue. It may seem simple in that it is just a feeding tube. But he can't live without tube feeding as we cannot live without food, it's the exact same thing. Medical research is not advanced enough to help him. 

He's a definite fighter I'll give him that but it just doesn't seem fair; all he has been through and now this, he never gets a break. Sometimes, like today I look at him in his bed and just cry. I look at his bright brown eyes and his angelic smile. It's amazing to look at this little boy knowing the pain he feels but doesn't ever complain. Someone who doesn't complain or cry but still is stuck with this fate, I just don't understand. I don't think I will ever understand which makes these challenges harder to grasp. The dreaded and regretful thought of him being happier and not suffering as much in Heaven is a thought I have often. It makes me hug him a little tighter the next day. I'm just too stressed and full of anxiety to go into the greater details of this situation today. Sometime soon I will go full fledge into the reality we all face.

How it Began

"Let love and faithfulness never leave you; bind them around your neck, write them on the tablet of your heart." ~Proverbs 3:3

I'll start with a little background information first, I'm a current college student trying to make the world a better place like everyone else. I see myself as just another daughter of God and nothing else. All I want to do is praise him and accomplish what I'm supposed to do on Earth for him. My heart truly doesn't beat for anyone else; no human love could take the place of God's love. It's the only way I am able to get up everyday and move forward.

 Everyone's first impression of me is that I always have a smile on my face. That may be true, but that's not without great struggle. As I'm learning now, fear and sadness don't get you anywhere in life. You have to get up and carry on with the rest of the world because it doesn't stop just for you. That being said, it's time I get into the real issue at hand; the reason I decided to start this blog.

I suppose you could say that I'm not like every other sibling out there. Now by no means do I think I'm special, amazing, perfect....however you see it. I'm not trying to come off as haughty but this is true. I don't fight with my three brothers. I see no reason, especially because tomorrow isn't a guarantee for them. You have to live every day to its fullest, miss a day and you could find yourself in the emergency room with one of them the next not knowing if he will make it through the night. The youngest of the three who we will call Jacob has a spinal cord injury. He is what the medical team likes to call "medically complex." He is paralyzed from the lower stomach down and breathes through a trac. He will probably never be able to walk. I know, you always here a physical disability makes a person strong as if it were cliche. Well guess what? It's not cliche! It's true, there is something we will never understand about these beautiful, gifted souls. The struggles they have give them a gift from Heaven that few can say they have experienced. Think about that the next time you see someone with some type of disability out in public. You see them for what is wrong with them and their limitation, not for what they have to offer the world.....