Thursday, October 7, 2010

My son

I see him layin' there
With his big brown stare
Love in his heart to share all around
Even tho they have him layed down
He wakes each day to breathe again
even when there is no wind
His body fights against him
He tells it not today
For everyday of his living life
He ignores the pain and keeps up the fight

My son your sick we know
Your breaths are no where near our own
Yet I am thankful for each day

Because your heart has shown me
that life and love are within me
You have taught me how to live
To be thankful and to give
That my life is much bigger than me
and that my God loves me

My son your so young
So much more is to come
The world is unknowing of your disease
Just of your joy and love to please
You walk everywhere with a smile
But your mama knows all the while
How sick you are and how much you fight
How every treatment, every night
Takes time and fun away from you
But this is what you have to do
So you can wake another day
To look at the world and say.....
Here I am, You won't win
This sickness may destroy my body
But never the person I am to be

Mama I'm sick you know
My breaths are no where near your own
Yet I am thankful for each day

Because your heart has shown me
that life and love are within me
You have taught me how to live
To be thankful and to give
That my life is much bigger than me
and that my God loves me

Tuesday, August 31, 2010


I aboard this ship on the rocky seas. I sign my name on the line. I have my sack and lunch in hand. I am alone and ready for travel. I never bothered to look at where this vessel was headed. Just knew it was outta here. I needed the break, I had to leave to just have a chance to be. I begged to be left alone, I cried in frustration and honesty. Yet my dear friend you came once again, to push me right where I did not want to be. "Ahoy matey!" This ship is sailing off to the deep and dark sea. The weather is changing and this life is rearranging to be anew once more. Who knows why or how this came to be. I saw the sign and new it was for me. I breathe in the fresh salty air, as the waves break way and splash my face. I am refreshed and alive, not dying inside. I am me, the me I like to be. I take a deep sigh, I smile and say, "today is a day among days" just as a butterfly pulls out of her cocoon to embrace a new life with her beauty. I break free of the chains, the things that take away and distract my purpose of being. I am built a new and reborn to life as a believer and sinner of the same. I break free of these chains the ones that destroy the hope and faith inside of me. I break free of these chains that bind me, a sinner saddened by my old life. I break free of these chains and I hold them up high to shout "What a sinner am I" its true, I cannot lie, but it's these broken chains that say its okay. "Forgiveness" is there in the air and the sun kissing my neck and my check. Forgiveness my love is yours, I did not strike you down, for I wanted to raise you up. But you my dear child are a free willed soul that must choose this life. You can hang on to your old ways your selfish life of lies and deceit. You can love your sin and keep liven in this cocoon till you rot and cease to be. I give you the choice and freedom to choose, but the offer is there to break free. You will be stripped of all your legs and given just one set and you will be given wings to fly. You must trust blindly that you can do everything differently as you once did. Or you will sit in fear on that branch and then in time your wings and body will die. All options lead to death of your flesh, but only one leads to me, the one that tells you to open your new wings and fly!

Thursday, August 26, 2010

A Strange Encounter

So the other day I was walking in my neighborhood. I was alone with my thoughts. I happened to see a cute and quaint nature preserve attached to my addition. I thought, how lovely. I went in and looked around as the wind kissed my check. I stood there in the silence and then I heard in the breeze ever so softly "are you lost?" I had only one thought as I broke into tears.. "Yes" I cried "I am deeply and terribly LOST!!" The wind circled back around and whisked past my ear as I heard it once more "Be as I am, for I am"I immediately questioned the wind "Are you God" but nothing came back to me. I had to sit down. I must be imagining this, it must be my mind! But NO I heard it, I did, it was clear enough to acknowledge that much. So then what? What does this mean? Who? and How? As if there wasn't enough in my head, now I have to figure this out! I had to break it down..

Yes I am lost but why? Am I lost in the way of faith? NO. Am I lost in the way of trust? Maybe. Am I lost in love? NO. Am I lost with direction? NO. Am I lost with the plan? YES!!!!! Okay! ding ding ding! The Plan the one and only almighty PLAN. With maybe a little trust issues too. Ok so what is this so called PLAN? Is it my plan? I would like to think so , but NO. Is it my husbands plan? I am sure he too would like to think so, but NO, So is it the peoples plan? Not at all. Ah, So is it the Lords PLAN? YES! There it was, the Lords plan, no one else's. How simple it was to answer this, yet still so hard to trust in it! Why? Are you afraid? VERY. Are you anxious? Greatly! Are you ready, even if it means waiting? What? What do you mean ready AND waiting? How can I be ready if I have to wait? Because when I prune you, You must be patient for new growth. When I change you, You must be ready for change. When I love you, You must love me too. When I nee.....Wait, wait, wait, wait! Hold the Phone! (breathe in deep breath, long exhale) Okay so I see I have a Plan that is mine but designed by the Lord. I have to trust that its right even when it feels wrong. I have been getting this, strangely all to well. What I struggle with is that part of the plan where you know where you are going, you can see everything changing, yet you still aren't where you thought you would be!.. Sooo, you want to tell me, YOU are ready AND waiting? Yes, that is it! And now you want to know what to do with that? YES, you got it, that's what I am lost in!!! I am stuck in that spot in between. I can't go back now its been decided and its within reach. Yet I can't go forward because its not time, the things that must be in place, are not. But why am I in a different spot in my Plan, than my plan itself? So Do you trust your plan? YES. Do you trust in the Lord? YES. So why can't you trust that you are in the right spot in your plan? (cough cough, crab collar, clear the throat) Ummm, yeah I never thought of it like that. Would you say you might have tried filling in the blanks of the plan with your own thoughts? (shaking head sighing) Yes, I would say that, but in my defense... Ah, Ah, Ah, Do you make your PLAN?(even bigger sigh) NO I don't. Okay so is this another patients lesson? NO, its a trust lesson. Ha, Wha, trust, I trust.... umm I mean, I kinda trust, sometimes.. Okay truly, I do feel that I trust in the Lord and the PLAN. Its just hard to understand!... And that is it, Understanding, trusting is not having to understand! "Be as I am for I am" I get it, be as I am, like the wind careless going where its directed without a concern.. For I am, For the Lord.
I must be like the wind for the Lord
.... I look up and see I haven't moved for some time.. I stand up and head home from this strange encounter with myself....

Tuesday, August 24, 2010

Seeing Isn't Always Believing!

It hit me toady as I was thinking about a post I read on Facebook. To often people do not "Believe" those with CF are sick because they often do not look it. If someone breaks a bone, its broke, we see it. Others who may be in the fight with cancer are often put on chemo which makes hair fall out and much worse things, we see it. Some one who has Parkinson's shakes or more like twitches and has failures in mobility, we see it. Even people with add or autism have outwardly displays of their condition, again, we see it! When it come to Cf we can't see it. We see a cough mistaken as allergies or a cold. We may see someone spit stuff out, a stranger may think they are a smoker. The times we truly see CF in its ugliest is when they are really sick or even worse. Yet even at times with my son being so young he even makes sick look do-able.

So as I thought about this I also thought about how much stronger my faith has become in the Lord since I have had Brandon. Some of that has to do with contributing factors in all parts of my life, ie: maturity, becoming a mom, happiness, knowing the fight for my child's life, good church, great marriage ect... Then I realized a common thing in our lives and the Belief of the Lord. Constantly Brandon and his CF is not taken seriously, people don't "get it" they cant 'see it" so it easy to ignore and easy to not "believe". In the beginning I felt angry at others for not understand or in my eyes at the time "caring". I was then, with growth, saddened by the fact that so many people will never really know him or his life, and therefore us and our lives. I really want people to just "Believe" and know he his really sick. That a cold in the house is a much bigger threat. That smoke will cause issues and result in more treatments to get it out of his lungs. With all threats we have to increase preventative care and in our house we spend a minimum of 3 hours of care a day to be able to keep him in our lives longer, as well as try to take away the pains and discomforts that CF cause. Many people may say "Yeah I know he has Cf" or even "yeah I know what Cf is". Just as many may say "Yeah I know who God is" or even "yeah I know what God's about". Knowing isn't always believing.

So then today I realized how God must feel. How so many people do not "Believe" or "Get it" so they ignore him. When it comes to having to just "Believe", things change. Its not so serious when you can pretend its not there. To me the Lord has presented himself in this disease, he has been able to show a little bit of how things have always been for him. It makes it change for me. It brings me closer to his suffering and helps me see the love he has for us even more. Unfortunately there will always be those who don't get it or believe, but when they do its amazing!

Friday, August 6, 2010

Best Case and Worse Case

My name is Best Case and my husband is Worse Case. I find it interesting how different everything is to us. We decided to take a walk through the forest. I decide with my lack of knowledge for directions and compasses that I must be trusting in getting out where I need to be. My husband is my polar opposite. He has a map with the highlighted path we should take to make this specific destination he has picked as the right end to our walk. He has a compass and a keen sense of direction. We decide to go hand in hand and enjoy this beautiful day. Everything is fine and I am enjoying everything in the moment. My husband, Worse Case is profiling the area making sure there aren't any crazed people hiding or hungry animal on the attack. To say the least he is not really enjoying this in the way I am. I ask him to please just stop and take it all in. As we are walking, finally enjoying the moment we stop at a fork in the path. My husband gets out his map and deciphers where to go. I was oblivious as to even where we were. My husband asked me if I could please just pay a little more attention to my surroundings.

Worse Case decides we will take the clear path that leads directly to our destination. But I, Best Case, want to take the other path because it looks and feels like an amazing and special place. I beg Worse to take the less chosen path with me. Because he loves me and can see its important, he agrees, but is not happy about it. As we walked along I saw an exotic bird chirping in the trees, I was so entranced by its beauty that next thing I know my husband is tapping my shoulder, impatiently waiting for me to move on. This is when we heard a rustle in the distance. Worse gets out his knife and gun, he bunkers down pulling me with him. I am grabbing for my camera out of my backpack. It is a funny site now that I look at this scene, Him the Army Ranger, ready for the attack and me the simpleton with my camera like some silly tourist. I had to stop my self and understand that I do not know what is out there and I too should be safe and not so oblivious. Not having any training of survival I bunker close to my husband counting on my husband to protect me.

As the rustling gained closer my husband moved from his position to another positing, with great skill. I try to mimic his moves as quietly as possible. He then looks to me and makes some hand gestures as to tell me where to go and what to do.. I had to laugh at myself for being sooo unskilled. I try to follow these directions as if it were some game of charades. He seemed content with my actions to his directions so I must have gotten it right. I watch Worse Case in all his beauty, this is what he was made for, no matter what is out there he is prepared and ready and in a dangerous situation he really does have the upper hand. As I just watch him in awe and I realize how amazing he is I get more hand gestures that lead me to where he is.... As I get to him and crouch down he whispers in my ear "get out your camera now" I was confused but I did it. I being Best Case do not handle myself well in a scary and dangerous situation.. I freeze because I never anticipated or planned for anyhting negative or dangerous happening... On a side note I remember When I was cooking for Worse one night and I started a kitchen fire on the stove. I was clueless and frozen in the spot not knowing what to do. I Barely could get a word out, but called for Worse to help. He came in and calmly put out the fire. I realized then I didn't trust myself to make the right decision, I had flashes of my grandmother who was in a fire and the fear set in leaving me incapable of handling myself..... I still felt like that girl not knowing what to do, but I had learned over the years that this is Worse's department and to trust his lead. And THEN.,.. All of the sudden,,!!! It Happened., A family of Bears were passing through right where we were once standing. My husband had gotten us far enough from them to be safe, but yet I was able to take some amazing shots of this family of Bears. I looked up and saw a peace in my husbands face that was breathtaking. Because of his abilities he was able to know he was safe and I was safe and really enjoyed the moment.

After the bears had passed we moved on to our walk and back on our path. This is when Worse lost his peace and started focusing soo much on the map and compass. I was excited to just see where we ended up and roll with it. At the moment I was content with noises and the smells. I was in a happy place of mine and found my peace in just trusting our path. I wasn't concerned of where it lead to or even how long it would take to get there. Worse stopped me and just asked me "are you sure this path is going to lead to our destination" I smiled brightly and said "Nope" I could see the annoyance on Worse's face. I asked him " Does it matter where we end up, if we took a great path" His face turned red and he was in extreme disbelief that I really had no plan or concern. I pulled him into me and hugged him closely. I told him to lighten up and enjoy this time with me. When we reach the end it may be our planned destination or it May be a completely unexpected one that in the end is where we need to be. He gave me a humpf and looked at me as I were alien. So this is when I grabbed my camera. I showed him all the shots I had taken on the beginning planned path. They were average as in anyone could take them. A traditional picture of a bird in a nest and trees.. A few leaves and a butterfly on a flower and a few snaps of him plain faced and Army stance. They were good pictures, but then I scrolled through the pictures that followed on our path less traveled.. There were beautiful shots of the bear family. A mother bear protecting her young a baby bear rolling around without a fear in the world, another bear licking his paw. There were pictures of old oaks and huge roots, wildflowers trailing on the ground, and a beautiful shot of the sun peaking through the trees looking as if it were kissing Worse's cheek. That is when his face softened. He told me he never saw himself in the light like that.

The path less traveled, kinda a scary and not so easy seemed to really bring out our abilities, our talents and our passions. It brought us closer and made us work together. It brought out our beauty and it encouraged us to walk in the light. Not just the light, but "THE LIGHT" (the light of the Lord). It was the right path, traveled by trust and God given skill. We traveled for 3 more weeks and we were thirsty. God provided what we needed and at the end of our travels we meet a strange and unexpected destination,, Home. I know that may sound weird but it was not our dwelling we call home, it was our children, it was strangers we knew were our friends, it was that feeling you get when you walk into a house before you buy it that just says, this is home.

Monday, July 26, 2010

What is Cystic Fibrosis?

Cystic Fibrosis... or CF.... what really is it?

I have been struggling with people not really knowing what CF is. I had a neighbor stop us to chat the other day as we returned from our family walk. He commented on how big Brandon is getting.. then he said "So he is probably growing outta that thing he has huh?" I told him "No he will always have it and it gets worse as he gets older". It is a comment that has stuck with me for a while now and I cannot get it to leave my brain. I believe its because it was not intended as a hurtful comment nor did I take it that way, but as time goes on I find it sad that people don't get it. I know I have blogged about this and yet it still is heavy on me. How else are you out there gonna get it if I don't show you.

I spend a good part of my days and life being positive for Brandon and my family. To often us Cf families don't like to think about or even talk about CF in a negative light because simplicity is bliss. I guess I think about when I have been in pain or even better getting a tattoo I had to think about other things than the pain to get through it. If I spent the whole time talking about how much the needle hurt and the artist was being a little heavy handed then I would either want to hit the artist or quit in the middle. Most of the time you talk about things that have nothing to do with what is going on at the moment. Other times you talk about the positive things, like how you hope it will turn out in the end. People who actually have CF have to be able to learn to ignore pains often that you may not even know they are struggling. I guess this is why I really study Brandon, I know as of now he cannot tell me and as he gets older he won't tell me every time he is struggling or hurting. Most of the time we only really know is when its gotten bad enough to earn a 14 day stay or longer "in the hole" as many jokingly call it. This is where IV medications are given because oral medications are not enough to kill off the bacteria attacking their lungs. During this time they are also struggling to have an appetite so they must usually force themselves to eat, children often refuse to eat and many time even through daily care at home must have feeding tubes to supplement the nutrients their body needs. Many times even if the person does eat it may not be enough which can be extremely frustrating and they have no other option. (I have recently written a guide for parents to fight through the food issues and hopefully avoid a feeding tube.) Also while in the hospital IVs can only stay on for so long, so they start their stay with an IV to later be given a PICC line:

A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavoatrial junction.

PICCs are usually inserted by radiologists, doctors, physician assistants (in the USA), radiologist assistants (in the USA), or specially trained certified registered nurses using ultrasound, chest radiographs, and fluoroscopy to aid in their insertion and to confirm placement. PICC insertion is a sterile procedure, but does not require the use of an operating room. When done at bedside, (that is, in the patient's room), a suitable sterile field must be established and maintained throughout the procedure. For this reason, visitors are normally requested to leave the room until the insertion is complete.

The insertable portion of a PICC varies from 35 to 60 centimeters in length, that being adequate to reach the desired tip position in most patients. Some lines are designed to be trimmed to the desired length before insertion, others are simply inserted to the needed depth with the excess left outside. As supplied, the line has a guide wire inside. This wire is provided to stiffen the (otherwise very flexible) line so it can be pushed through the veins. The wire is removed and discarded after insertion.

I have heard variations of how this affects people who are frequent fliers so to say on the PICC lines. Brandon's first PICC he was not sedated enough which resulted in 5 tries of insertions and a hamburger resemblance on the failed arm. Also these things are fraqile so B has broken one and even has a scar from receiving a central line in the groin. I have talked to parents of little ones who often have issues of their little ones ripping out PICC lines. I have talked to adults who have received so many that they have many collapsed veins and or numbness and rejection from many veins. Often people consider getting a port a cath, which is a line that is connected to a button so to say that is buried under the skin. this way when it needs accessed it is there and just need to have a needle break through the skin each time. It is often used in cancer patients or others who receive frequent IV's. This to some is still a hard choice and for many can cause them to be selfconcious.

So daily while at home CF still affects them more than you, or even I for that matter can know. I try to often think about the times I have had a horrible sinus infection and I have all that build up of mucus in my body... yeah that is normal and extra thick for someone with CF. I think of the times I have had bronchitis and it felt like it was hard to breathe and that there was junk stuck inside my lungs that no matter how hard I tried it wouldn't go away. How often I coughed and surprisingly it felt good and hurt at the same time when I coughed because It relieved that nagging tickle in my throat and lungs of needing to release the gook, yet when you are always coughing it irritates other areas of your throat and chest.. Yes this to is normal for CF. I think about when I go running and I get that burning sensation and I find it difficult to catch my breath, so I stop and take in some deep breaths and realize someone with CF doesn't get to stop and "catch" their breath. I think of someone drowning and realize that if I run that thought in slow motion minus the water I am sadly looking at CF's destruction it has on the lungs....

How is this so? The easiest way to describe it is the gene that doesn't work regulates the salt and water in our body. When you think of a frog and they have the mucus coating that is sticky, which is how they can shoot their tongues out and catch flies. We all have a mucus type substance in our body that travels through many channels and organs, such as the lungs and pancreas. Our bodies regulate this mucus to make it the right consistency to carry the things the body needs with out holding onto too much. Someone with CF has that regulator broken. The salt which breaks that mucus down is sent to the wrong place and leaves the system through the flesh, which is why they will taste really salty when sweating. At times they loose way to much salt from their bodies, so when they are hot and sweaty they are advised to have a little salt. Because this is broken the mucus in their bodies not only catches the flies, but then becomes too sticky and can't let it go.. any bacteria or dangerous attacker can hang on quite easily. Also because of how heavy and thick it is it doesn't make it out of the body as it is supposed to. Filling every duct and blocking the body from releasing other essential things, such as enzymes in the pancreas to digest food. Which they must take supplemental enzymes to digest their food. Over time and as someone with CF gets older these organs tend to become damaged and scarred. If you can imagine your lungs are two buckets. As time goes on these buckets get filled. Every morning and night you empty these buckets but there is always things left behind, slowly coating more and more of the open space in the buckets. If one is not good about emptying their buckets they will sooner not have room for what they need (air). Every time they have an attack there is possibilities of severe damage and when this happens we will use a rock to represent the space it damaged so between rocks and mucus slowly filling the buckets eventually there is no room left.

Now sometimes people are blessed with new buckets (lung transplants) to start out fresh and begin the process over again, yet they get to hopefully add many, many years on to their lives. Also This lung issue is not to be compared to asthma, even though it may sometimes look like it. When an asthma attack happens the bronchials close and tighten making it hard to breath until the attack is over, although many people with CF do also have an attack on the brochials the area of concern is the lungs themselves that slowly deteriorate over their live. People with CF do massive amounts of therapies to try to force out as much of that sticky mucus as possible. They take antibiotics daily to help the everyday intruders that their bodies are unable to defend against. They take many medications to help with eating and reflux, and SO much more. They have many things that break down and do not work because of all the other things attacking them. Someone with CF fights daily to live half of the projected life the rest of us are said to expect. Most people with CF are used to coughing, shortened breathing, tightness and shooting pains in the chest, gas, bloating, indigestion and stomach pain, and way more than I could ever describe. They are plagued with enough things that many of us would take off work for, and as time goes on forces them to not be able to work with as much ease, whether its because of frequent sickness, long hospitalizations, employers not understanding CF and treating them as if they are liers or lazy. Also many adult CF'ers struggle with medical insurance and often times are not covered for many things. CF is not taking as serious as cancer or other more understood or common medical conditions. People talk alot about Cancer because it is well known, anyone you meet most likely knows one or more people who have struggled with, died from or survived cancer. Cancer is caused from so many things and in so many parts of the body, cancer can hit you at any age and can take you at any age. You can suffer for years or even die before being diagnosed with cancer. It is Horrible, I have lost many people I know to cancer. For someone to come to you and say my child has cancer everyone knows what it is and everyone sympathises and is there to rally and support. When you tell someone my child has CF, even if they stay to listen to what CF is in the short, they say that's to bad and walk on more often than not. Now I have a hard time with this because it is a double edge sword. Do I want more people to know about CF so it is taken serious and understood as the horrible destructive disease that is genetic and incurable...yes, but at what cost is that gonna be? I do not wish there were more people with CF so others can understand it, So what is a mom to do? How do I save my child without wishing more people to suffer? How do I get people to understand and care even though it doesn't affect them in any way?

CF does suck, it sucks everyday from day one from a medical and physical standpoint for those who suffer from it and it sucks for those who love someone with it to not be able to take it away or control the inevitable. So we all just focus on the positive things and carry on, we have all learned things about life and how precious it is. We all know that CF doesn't control your soul, your heart, your faith or your you-i-ness, only you control that. This is why the most common statement is found.."boy I never knew they were really that sick" because it is just a body, a very earthly thing that will not come with them in Heaven. They are not sick, their body is.

Friday, July 23, 2010

Simplicity is bliss.

So this morning I had a lot on my mind. I really wanted to revert back to my old ways and be angry, possibly even a little back at ya attitude, but I thought before I spoke. Haha, remember when our parents and teachers and possibly even other people said you need to think before you speak. I did it, I have been doing it lately a lot. I think when we get let down or hurt we tend to take things so personal with out a moments consideration of that other person.

As we prepare for this move there is a lot of work and a lot we need help with. Its hard to find good and free help. I miss the days that I never got to be apart of when your neighbors helped to help. I miss when someone said they were family they were family in action. I have to sit and wonder what is a "family"? What is a "friend"? Are you just an acquaintance? I get to caught in peoples "words", I want to believe what people say for what it is. I think we are all so busy that we forget that we committed to a relationship on whatever level. I know in the past I have lost many of people in my life because I took them literal in their promise of relationship. Once they did not meet that qualification I was badly hurt because their promises and actions did not match. I guess I have been rather tough on people. But then I have to ask am I really being tough because I expect those who make a promise to me to keep it? At what point are you just holding someone accountable? I think people these days want the credit without the work. Maybe I am old school, maybe I am naive in thinking people should have to prove in their actions. It hurts less to take someone for their actions more than their words. I remember hearing once that people will tell you who they are if you are willing to listen. I guess it is a horrible thing to ask people who love us to help us leave them. I don't want to claim that it is my favorite thing to ask for. I am able to see who really cares about us at least.

I have been praying alot to take the right road, and be only kind with my words. Many hurts are there if I let them, but that is the thing. I can stop them from hurting by my choice of thoughts. It is not my right or place to judge another's actions. I really do believe that others are to busy and have other things going on, so that is ok. I am not denying the fact that people are unable because their time is dedicated elsewhere. The only question I have is, if time is never dedicated to a person, then how can you claim friendship or even more being of family? I think we all have great intentions, yet we often fall short of a promise we have made. I know I have been guilty of this my self, which is why after thought and debate over and over in my head I realize I must have forgiveness, mercy and if possible even grace. I have to get an even heavier heart when I think of how many times we may fall short in our relationship with the Big Guy Upstairs. How not one time has he said " I am done" Not only that but he even shows us much grace by saying, " I know you forgot to invite me to dinner or thank me for paying the bill, but here is dessert!". This is the moment I am fighting back the lump in the throat and the heavy tear in my eye. So yes we may need to listen to the wiser when told to make a promise and intend to keep it. Even if that means not making that promise at all. I think we take this serious when we promise something easy like, "sure you can borrow my movie" or even "I would love to meet you for coffee and chat" these things are fun and or easy to do, I am sure you can think of many other scenarios. We are great givers of convenience, its the selfless giving that really counts, the kind where there is no self gain.

I find it refreshing when I do meet those people who are kind for no self gain. Who truly and unconditionally love to serve or even just love to love others. I took a step back today to not think of the negative, hurtful things that really aren't that big. I wanted to think of the great and positive things that many people do and possibly even think about that I don't even know. I have to give my church great props at being filled with great and kind hearted people. When it came to churches my life has been filled with disappointments, so to find a great one, I feel truly blessed. One thing that made my heart melt this week was the out-a-the-blue message I received from one of the members, who I know but not to well. She told me she read a book about a little girl with CF, she had a grander understanding of what our family goes through. She was very kind through this message and it brought me to tears. I know not everyone is gonna go and read a book to understand Brandon's battle and what our family goes through because of this disease. I can even be understanding as to why many people don't need to know more. I also want to make it clear that when people do understand only then can they truly get it. Many people with this disease are just wanting people to "get it". We hear to many comments, like "so now that your boy is getting older is he growing outta that thing?" Such an innocent question, but also a very impossible thing. I am always delighted at the fact that others are concerned and care, but they still don't get it. This isn't asthma or allergies, it is not even in the same league. I have to hold my tongue when others around freak out about the small stuff, they want to give me crap like you have it so easy! I have to shed a tear and shutter at the one negative thought of the day because for once they are right, I do have it so easy, but my son does not. I would take it away and endure it for him if I could, but God designed me to be his mom. I can't spend a negative moment in something so big that I can not control. I am positive because there is no other way through this. I think before I speak, because it makes my life simpler. Simplicity is bliss

Friday, July 16, 2010

In need of a prayer

Oh Lord! Thank you for your blessings and thank you for your love..
Without out you I would crumble, I would be defeated in one step. I need your strength and I trust in your plan. You who are my father and my maker, only you know what I need.

Today I need you, just as I did yesterday and just as I will tomorrow. I can not go one day without you in it.

You are my rock and my foundation and I will build only on you. I will not question your plans yet accept them even in their darkest hours. I will not just praise you when things are great, but I will praise you when things are rough. I will acknowledge the grace and mercy you have bestowed upon me and I will thank you daily.

Praise to you and thank you, from the depths of my heart and soul!!

Thursday, July 15, 2010

Wildflowers are enough

well today we moved one step closer! Every time one thing gets finished the lump in my throat welds up and I realize we are that much closer to our move. Don't get me wrong I am excited about this move and even more so, I know it is the right answer. For that one thing I am sure of more than anything else right now. How does one leave the life they know for a new life filled with uncertainty and fear. Ya I know, I know it is a God thing. This is the one reason I am able to keep faith and sleep at night knowing my choice is not really mine. I let God take the big stuff and he is leading me somewhere unknown.

I find it great that people are still willing to help us out and be my friend although they know where things are headed. I guess the realistic people that I am close to know I will not just leave and forget them. Yes it will put a strain on relationships but it will not end them. I learned this lesson this year very well. I have several people I am close to but one person that I am very close to is 34 hours away in CA. I believe I talk to her more than anyone outside my home. To be more exact I text and email her all day long sometimes. I learned you don't have to live close to be close. yes we want to see each other but we just have to work at making that happen when it can.

I guess its weird for me and everyone. No one wants me to go but every one understands why. If we could we would pick up everyone and everything and take it with us. I find it hard at times because although people understand they really don't. Only a few I know really get it. I wish I could explain it in the proper way.. I will try my best.........

One day there was a little girl filled with glee and love in her heart. She loved to wear piggy tails and pick flowers. the sunlight gleamed in her dirty blond hair. Her blue eyes sparkled and the grin across her face. Her mother loved to take her for walks every day and every day they crossed a beautiful meadow full of the rarest of flowers. In the front of the meadow at the gate of rod iron there was a sign that said "No Picking Flowers". Being that the little girl was to young to read she was beaming with the happiest smile around. She had her picking hands ready and said "mama, may I pick a flower please" Her mom was so sad to tell he "no you may not" the little girl accepted her mothers answer but ever so much yearned to pick those flowers. In an attempt to not upset her daughter this lovely mother picked another route to walk the following day. Hand in hand they had a great walk until they came across another meadow, this meadow had average flowers and no sign, it was well picked over with not much to offer her daughter. There were other children walking around with what must have been the flowers of this meadow and her daughter was once again saddened by the fact that there were none left for her. Finally after some research her mother took what she felt to be the longer and further route, no where near their home or comfort but it did seem to have a promising wild flower field that she may be able to offer her daughter what she so badly yearned for. As they approached this Field her daughters bright blue eyes had a twinkle that said it all. She looked up with joy and said " mama, May I pick these flowers" The mother replied " I am sorry I cannot offer you more darling, but yes you may pick these wild flowers, its not the best ones or the ones the other kids had, but you may pick as many as you wish". Her daughter replied, quietly in that meek little child voice, " mama, it may not be perfect or what the other kids had, but its enough for me".

The thing with this story is that as parents we may not always be able to give our children what they want or even need. Unfortunately for Brandon its a life matter. Being able to offer him just a little more than what he has is enough. I will never stop finding ways to improve the one part of his life that I can control, the quality! I may not be able to offer him perfection, or even what the others kids have, but I can offer him something more than what he has.

Having your child wake up in the morning and give you the biggest smile with those big brown eyes blinking at you and as they open their mouth to gasp..cough...cough.. sneeze..cough.. gasp, followed by some shallow breathing, it breaks your heart. I don't care who you are, you are willing at that point to do what ever you can to take that away. When you see your child in the hospital, you as a parent would do anything to prevent that from being a common occurrence. We do what we can where we can. I hurt and I am brought to tears often at the fact we are leaving, but I am also brought to tears by the fact that I am able to offer more to my son.

Wednesday, June 30, 2010

My friend Positivity

Lately there has been many up and downs. Things wanting to trip me up and make me want to crawl into the negative dark hole. The spiral of doubt, pain and low self esteem. I have to laugh at how before in my life, when things really weren't so bad, I easily got caught up in this darkness. It was awful, pitiful and rather pathetic. I am facing a mirror tonight. The oh so trying mountain test. You know, if you don't learn the lesson once God will keep bringing you around the same mountain until you do well, test. Well here I am at Mount Patients accompanied by my tour guide Positivity. How on earth am I to pair Patients and Positivity together, and really how is being positive gonna help me conquer this climb. Doesn't anyone know how hard it is to climb this mountain, how many cuts, scrapes and bruises I will obtain? As if this isn't enough as I unpack my ruck I find only "backfire" wood and pots calling my kettles black.

So I do it I grab my guide and hang on tight, he refuses to tell me his name, all he say is "patients". Really now, "I know what Mountain this is, Whats your name friend?" All I get to this question is the same word repeated with a smile. So the conversations aren't really going well, I begin to feel alone. I then decide it is time for a break (yeah I know I am a wimp only an hour in and breaking). I grab Positivity by the hand and once again try to talk. He just smiled and said I wondered when you would stop and talk to me. Haha, this dude is weird, we are on a mission, we have a goal, we can talk AND climb! I gave a smirk and said alright well lets get a move on. We went on our marry way, for hours now, sweaty and tired. This is when I tripped. I am going to say it was a big rock, but for those who know me already know it was air that tripped me up, doesn't take much. As I looked up for Positivity he was there with a smile once again, already tending my bloody wound. I was amazed at how quick Positivity came. I felt a warmth in my heart, how lucky am I to have Positivity with me. This time I will make it to the top of this mountain, I WILL CONQUER MOUNT PATIENTS! This is when I thought of the time I was wasting because I tripped. How silly of me to always be hurting myself, but I am tough. I asked Positivity if he was hungry, his eyes lit up and he said "only if you are". Wow Positivity was tough, maybe more tough than me. I pulled out my pot and kettle and told them to just stop the madness, they are both black. It was kinda funny watching this scene of this pot and kettle. Why were they so blind to see they were really the same in the end. Positivity liked that I ended the madness, must have been giving him a head ache too. I realized I had nothing to cook, I looked all around and sighted nothing. I began to cry and started to feel defeated, this is when Positivity nudged me. I looked over and he was on his knees praying. Although I consider myself very religious I thought ok, this is kinda silly, like God is just gonna plop food in the pot and kettle. Once again Positivity nudged me and I joined him...yep, nothing, no food. Positivity told me " start the fire" FOR WHAT!! Is he mad, and then I saw how he was still smiling as if he knew something I didn't and I thought, I better trust him. I pulled out the backfire wood, and began having thoughts, of, well, you know the wood, backfiring. Positivity just kept smiling so I did the same. I put the wood in a nice tepee and and was gonna try to do the whole rub sticks on leaves fastly to get a spark... Positivity laughed at me and grabbed a piece of the wood and struck it on his lit...Ha, backfire wood! Someone here is a comedian. I laughed and laughed, I laughed till I cried. Positivity cried too. I decided positivity seemed to know more than me and was the wiser in this whole "Mount Patients climb".Positivity grabbed a cooked fish and bit into it, and then I stopped laughing and looked in the pot, there was one more fish. I looked over at the kettle and there was cooked grains in olive oil.. I was shocked and looked at Positivity, he just held his hands in the prayer hands, looked up, smiled and then laughed a huge belly laugh. I have to admit, this meal, was exactly what I needed. Positivity handed me a canteen with water and went to sleep.

I woke up to crusted dew in the eyes and muck in the corners of my mouth. Positivity was full of energy and waiting, patiently, for me to rise. He handed me left over grains and more water. I decided that I wanted to get more out of Positivity, so I asked him what he he knew and what he could teach me. This is when it got weird, All of the sudden I was completely and utterly alone, just me and this Mountain. Yet I did not feel alone. I walked slowly, trying to process where my guide and now friend had went. I was daydreaming happily when I once again tripped on, yet again, air. No one came to my rescue this time, but I had a good laugh at my self and found Positivity, with-IN me. I had to snicker and I lifted my hands up to the sky and just said " I get IT". This is when my journey up this mountain changed from every other time. I had Positivity with-in me, I finally made the choice to let him in and let him take over. Now just for the record There was much more of my mountain to climb. I knew that I would make it and it would be different. It was a trying time to face this challenge with a new guide. I wanted to cry and give up and throw Positivity out many times, but the thing is, I didn't! I stopped and took my time, I prayed and I listened. And YES I made it to the top of MOUNT PATIENTS! I didn't try to go around it or continue to fall down it! This time I made the climb with the right guide!

Positivity is a gift my father gave me. I had to choose to accept it and use it. My father HAS equip me for the travels I will take.

Friday, June 25, 2010

OHHH Georgia!

I find it hard to express everything I am and to the depths of were my emotions reach. I spend my days positive and focused mostly and fighting, which is how I roll. I am a blessed person and I know this very much so. I am thankful daily for what I have been given and for what God has put on my heart. My husband and I talk frequently about how terrible I am at always thinking "best case" senerio, when his training in the military has led him to "worst case" senerio. I guess we balance each other out. I also am an answer girl. If I don;t know it I want to and WILL find one. I remember learning of this gift way too late in my life. Had I known I was good at it I wouldn't have procrastinated on so many papers in school. Although I believe that my grammar always tossed my smartness out the window. I found it silly that if I couldn't write it the right way then it was wrong even when it was right.

So I have had many people asking me lately about Georgia.... When you going? Are you still moving? Isn't it going to be hard? WHY?

So here it is all the answers you all wanted to know :)
we are going to GA, I pray for sooner than later, but it will happen when it is right. The truth is it could be only months away or it could be next spring or even further from that. I know it may sound wild and crazy to many but it is a God guided path, and I trust that he knows the right time, and we are just working with what we have. Our house needed many things done to make it marketable. We have been working strong and hard at getting these things done.

It will be hard, really hard! We both have family here. I find it very hard because for once in both Matt and my life we feel that things are "in place", when i say this I do not say it loosely either. I am close to my family and we are getting closer with Matt's family. I have a bond with many of them and Love being an Aunt. My sister and I have become close and I really have come to enjoy the guy she will be marrying some day. I have great friends that I truly enjoy for the first time ever. I have a church family in which I have yearned for my whole life. I love the house we live in now and really thought I was going to get old in this house.

So if everything is so great why would I leave it? That is the question these days more than any other. Here is the upside and the good part of leaving..... I must start with the most important part and that is Brandon. I know Brandon is doing well right now, but I also know that he can be doing better. He has been in the hospital 2 times which I agree in the CF world isn't extremely bad, but it isn't the greatest either. Here in Fort Wayne our hospital knows that they will see their CRF'ers in for their winter visit. This year we almost spent Christmas in the hospital. Once we returned home we were told by Brandon's Dr. to stay home and keep Brandon away from the public, especially with the flu outbreak this winter. For a small child this was easier to do, but I cannot take "life" away from my son. He deserves to be able to live as we do. Because of his orders we missed out on several family events and several nights at church due to possible exposure to illness. This to me was and is unacceptable. It broke my heart and made sense as to why we needed to leave. I agree that Brandon's DR can be extreme with CF care, get rid of the dog, if you can have hard floors, keep away from triggers, don't dangle upside down, don't eat Cheetos and so on, you really have to choose your battles with this disease. Every one is also very different with this disease, it is not a cookie cutter type thing. MY son does not do well here. The first hospitalization he had they were struggling to find something to clear him out and get his cough to stop. They started Tobi and it still didn't help. Finally after many thoughts they decided to just see what Hypertonic Saline would do for him, and the cough was gone. This was Brandon's miracle drug. This is a salt water solution that he breathes in 2x a day.

Salt air was a HUGE deal for him! We took a trip to Jacksonville FL to visit my father. It was when Brandon was 6 months old the first time. I was nervous and worried about him getting sick away from his clinic. Thew first several day were really bad I remember needing to increase treatments for Brandon and he seemed to be just coughing and gagging, one night he was sounding weird and I was scared. I went to the living room and started albuterol and percussion when I had Brandon in a down position pounding his back mucus started pouring out of him in handfuls. I couldn't understand how so much junk could come out of such a tiny body. The next day we went to the beach thinking the fresh salt air would do some good, but Brandon just slept all day. After this he was full of energy and a different child, more at ease. I still was unsure of what really happened but he was better. When we got home I took him in to the clinic to just get him checked out. They said he was fine and that the beach was the best thing to do for him. As we took trips to my dads i realized B had a pattern of a few days down and clearing out then that ease and peace came back. Last year we visited GA as we considered a move down south. We are partial to Ga and its 1-2 hours from my dads. I wanted to see how B was there. He did a similar cycle of clearing out and ease just as he had done in FL. We learned at this point the kids were both beach kids, especially B. He loved to be in the water and swim and be out doors. I have to say watching my child who has struggled to breathe have it easier (for him) was something I wanted for him. I had and understanding, as I do now, that I may not be able to control the quantity of B's life, who could ever know or guess at to what that is. What I can control is the quality of his life. As a parent we all wish only the best for our children and if that means offering your child simply the ease to breathe just a little easier, we will do it! I agree I am blessed to be able to do so for him, and I would be a fool if I was given the opportunity and had the means and didn't do so.

Of course there has been doubt and questions and many things on my mind. While in GA last year there was some doubt even though all things pointed to moving to GA. A friend of mine prayed that we would be shown if this is where B needed to be. The next day my friend and I went to the beach with the kids. Her younger son had gotten stung by a baby sting ray, yeah not too fun. I had my 3 year old and this 7 year old in my arms walking in from the water. (I felt like super woman.haha) I had a woman offer to help midway and carry my 3 year old. I had gotten my friends son to the life guard and swapped spots with her. This was all very fast and I packed her 3 year old, B and my 3 year old up and had her older boy help me. The younger boy who was stung was driven up to my friends van on an ATV with the life guard. When we got there ourselves the life guard looked at me and said, which boy has CF? I was a little floored and pointed out B in the stroller. He said "oh the little guy!" He told me he was 30 with CF and went on to how well this salt air is for him and how well he does. I really had wish I could have talked longer, but we did still have a screaming 7 year old with a sting.. I then realized this was my answer. This was gonna be home someday.

To really drill my answer in I took B into clinic once we returned and the DR told me his lungs were clear, as in VERY clear. My husband and I just knew that for him, GA is better for him. We enjoy GA as well and to say that this is ONLY for B would be a lie, but it is mostly for B. I noticed other things while we were there, the rest of us felt better as well. We most likely would have never made the move for ourselves.

I want to say that this is what works for Brandon's CF. This is such a different disease fro each one living with it. We know it is hard for all you out there wo love us. It is hard for us too. We are struggling to leave all the people we love here. I know its hard to support someone who is leaving you. I know it is hard to remain or develop a closeness because the fear of loss is soo great. SO I thank you and appreciate you all who have lovingly supported us in this path.

Sunday, June 6, 2010

What a Weekend

Everything started on Friday. It was a great day. We were blessed to take part of a great event "books for bikes" and I learned Brandon's love for motorcycles. Elli was excited to play with kids and have a fun time. From this event we were delighted to come home to find Brandon's new compressor for his vest on the front porch. It always amazes me that they will just leave over 20 grand worth of medical equipment hanging out.

We continued our fun weekend and headed up to the lake for a 50th birthday party for my step-dad. It was nice and fun.Brandon started to regress a bit from being in a place that he was unfamiliar with,and around a lot of people he didn't know. I am still unsure as to why he is uneasy about this kind of stuff. We were happy to come home and Elli stayed at the lake with grandma over night. This gave us a chance to rest for today, The BIG day. Brandon's 2nd birthday, and birthday party. We had a fun time and Brandon found his favorite toy to be his new Buzz LightYear action figure. haha, it was rather cute. I find myself just falling more and more in love with my family, and those that I call my family. In such an imperfect world, living through the eyes of a child has taught me a few things. Everyday is new and it's an adventure, every moment is "the moment". Children just live, something many people have such a hard time doing. I know this for I have been there.. I will often speak of or reference to my " dark years", a rather sad part of my life. I feel like how could I have wasted 12 years of something so precious as life. To cry over something out of my control. I won't act like this wasn't over something big to me, because it was, but it was still a waste of my time here. I get frustrated at those who don't get it yet, but I wasn't ready to get it till God smacked me in the face with it. Now living is what I do. I live to live each day for that day.

I can not stop thinking of a conversation with my mom about time. She is always rushed and out of time and stressed by this. I told her time is a frame of mind, and she laughed at me. Now I know many people will laugh at me I am sure, everyone laughs at those who don't work as if we do nothing. I agree I am not the best house cleaner, but I am great at living with my family. I do more than that as well, I have commitments out side my home and have my own kind of "work". Nutrition is my passion and work I read, I write, I figure out new recipes that will either be healthy for a CF person or in general be good for what our bodies need. I try to make the stuff we love healthy to eat. I put foods together for a reason not just because it sounded good. Yet I feel like I have all the time in the world. It is a frame of mind. I am not sure how I have gotten here to be honest, but its great and hope you all find this. I guess it goes back to being a child. You are only focused on today. Tomorrow will have its own time. I find it refreshing and relaxing to know that I don't even have to think about tomorrow until I wake up. The only thought of tomorrow that I do have is what time do I need to be up, and then from there I will figure it out. I think that is why it is hard for me to understand why so many people dwell on the future and find themselves depressed and upset. I Hurt and pray for those who do.Its just not a fun way to live, as I did for my 12 years of darkness. If it is out of my control, then it is not my worry, it is God's. It is just impossible to be happy and joyful when you are focused on things that are to big for you. we all have a purpose and the thing that sounds more off than anything is, its not our job to figure it out. It is our job to use what God gave us and follow his discernment with out question or concern.

Thursday, June 3, 2010

Turn the bad into GOOD!

Well Saturday night as I was doing Brandon's nightly treatment I just wasn't feeling the vest vibrating the same. I started noticing that the whole vest itself didn't inflate. For many of us parents to a child with CF we count on equipment like this to help aid us in the daily demands of therapy. Knowing as they grow and get to a point of wanting independence we have a tool for them to utilize on their own. They luckily do have many options for the percussion treatments aside from the good old traditional method of what many parents refer to as "beating their child" or hand CPT. Either way a method of some sort has to be done twice daily and more when they are sick. When Brandon was younger he detested the hand CPT as we felt awful we also knew what must be done. You learn ways to restrain your flailing and angry baby and get whatever CPT you can in. I always felt lost as to how I could help this not be such a negative experience for him. At the right age and size he was approved for a vest and it has been a God send for sure! So I am sure you could imagine my horror when this treasured appliance broke! I was on the phone in a matter of minutes, after trouble shooting all my options, to the manufacturer. They were great and with no questions told me another one would be here on Thursday(today) although I am patiently awaiting the UPS truck I am also getting that feeling curl up in my stomach thinking it may not come.

I am sitting here reflecting on the days up to now. I do have to admit that its not as big of a fight as it once was, but he still will try and stop me by pulling my hand away or telling me No and trying to get away from me at all cost. He refuses to get into positions that are part of the treatment and will not get into the downward position at all. I was frustrated in thinking its not by the book, its not good enough, and so on. I am lucky to have a great source, my cousin Rachael who has CF and is my go to when I really want a straight answer from one who "knows" what it is like and what it feels like to them. She said to not stress over it so much and get in what I can. As I continued with that thinking last night I felt a little better about it but still just am not seeing as good of results for him. It hit me, I play around often with alternative methods of bouncing on a ball or activity for him, even swimming in grandmas pool gets him hacking up a little junk. So I thought time to just take what the Lord gave me and put it in as a true treatment. This morning we started with the albuterol and then I did what ever hand CPT he would allow me, when he started getting frustrated and pushing my hands off him and tell me No I moved to the ball and bounced him and tickled him and what ever else I could do to keep him working the lungs. He produced a few good coughs and I was pleased, very pleased! I am taking some of his birthday money to buy a small trampoline for bouncing as therapy for him as well. I guess for the longest time I wasn't committing to this idea because its weird to think that we are doing good and having fun. I guess it is possible. The Swedish people have some great ideas for airway clearance. Thank you to Kat East of the Blooming Rose Foundation for educating us on her experiences of other options.

I have always pushed how much CF nutrition needs to change and have been working hard at a book and other ways to get that info out. I have to think that many things can change and be done differently. Airway clearance can be fun and there are many ways to implement it into our child's lives.

I guess this brings me to a thought of positivity! Why can't we be positive in a negative world. Why can't we accept what the Lord has brought this into our lives and enjoy each day for what it is. I really try to stay connected to the "CF world" but I find to often I find negative sources that feed into the fear of it all. I understand people are desperate with this disease and want all people to know about it, support and help cure it. But the reality of that is not so. There is no point in walking around with a negative angry and at times selfish heart. I can not control what others do and certain things form happening in my life, but I can control how I think and what I say. You can make a difference with a positive attitude in a negative world. I am reminded of many people I have crossed paths with and I find people with true joy and positivity have much suffering in their lives. I find a thing as my childs CF as an opportunity to learn and bulid my character, not break it down. I am no good to Brandon or the rest of my family if I am negative and angry.

Monday, May 3, 2010


I feel so blessed to be able to live the life we live. I know I am to use my time wisely and to follow what the Lord calls me to do, but it is amazing the things that he does. I never really know whats next and guess I could call it a fly by the seat of your pants kinda life. I am proud that I am where I am today and have let the things in my path build my character. I know I am not perfect nor do I always get it right, but I try. So where does Brandon come in to this, well He is the biggest part of it. I know, I know how can one feel blessed when their child has a life threatening disease. Well its the life threatening thing that wakes a person up. If someone called you and said this is your last day, go have fun, what would you do? I know what I would do, I would go to the park and swing on the swing set, I would paint and play and sing horribly bad. I would lighten up and just be me the dorky ditsy goofy goober that I am. Elliauna actually pulls that out of me more than I know, she is a little mini me and I do claim her Amber moments. She is the comedian, the creative one, and the one to call a spade a spade. Elli is a great big sister and she is perfect in every way for our family. I am so proud of her and ability to turn your heart at the best moment.

I find our blessing to be greater than I could have asked for and its really neat how God works. I have to go with a little story of foreshadowing here for a moment not to be sad but to show how intrigued I even am at this point. When I was younger I had a brother 2 years older than me. As a young child he almost drowned, again at 13 he almost drowned, and finally at the age of 17 he did drown to his death. My brother was my best friend and I decided to have my children close in age so they too could experience the bond I had with my brother. I also decided to name my first boy after him..Brandon Lee..I have to admit I had a hardened heart due to the loss of my brother and all though I loved God and my family it was like a part of me was just broken and unfix-able. When I had my son it was one look into his eyes and something said "this is gonna be big" and that broken-ness died at that very moment. Its like God spoke to me through this little boy and gave me the gift of a better life. It was devastating when Brandon was diagnosed with CF but I also think the things that lead up to me being Brandon's mom made it clear that it was perfect. Perfect in the way that God makes no mistakes, he designed me for my husband and he designed each of my children for us to be parents to.

I feel like I can't always talk about my life because of the differences it has compared to others. I don't work, I know not thats unusual to be a stay at home mom, but my husband doesn't work either. Sounds so great right, well to us it really is but its not the slice of heaven every one envisions. My husband is 100% disabled through the Army, most of his injuries are not visible, he is a great man and I am blessed to get to spend my life with him. Many people see the "outside" Matt, but not everyone sees the things that take a toll on him or wipe him out. People do not see him get sick or have and idea of what he experienced and lives with. Its hard to watch the man you love feel bad often. When we had our daughter my husband was still fighting for his benefits and working a job that really triggered most of his ailments. It was a rough time, we almost lost everything but each other, this is when I learned that each other was all we needed. God came in like the Red Sea, one more day would have been to late. He saved our house and gave my husband the ability to stay at home. This too was very hard at first but we adjusted, I continued to work part time as a hairstylist. This seemed to be what worked until we had Brandon.

One of my husbands injuries is Traumatic Brain Injury (TBI) this affects your short term memory. With the ever so changing medical regimen it became difficult for Matt to remember what had to be done. Now Brandon never went without what he needed, it just became a matter of leaving a list and an order to what needed to be done. Many notebook pages and many sharpie marked foods and milk jugs. This too became easier to do until Brandon got his vest. The vest worked great for Brandon, he fought hand percussion treatments to the point of needing to pin him down and force it on him. This was just awful for us and him, and we were excited to have a different method. The vibrations ended up triggering Matt"s vertigo (another part of TBI). Finally Brandon went in for his first hospitalization and I rescheduled clients I had during this time. Clients that I had for many years and knew and prayed for Brandon, easily turned to someone else other than me to do their hair. I understood and was heartbroken at the same time. I knew it was a choice I had to make and it made me sick. My clientele kept dwindling and I kept praying. I prayed for an answer and I got it then, obviously my business that was just booming prior to this turn in my life, is now almost nothing. God was pruning me and I kept trying to tie the branches back on. I gave in and lifted my hands up to God and said" fine, your in charge now". Funny enough it was the best thing and really what he had wanted from me all this time. Now I don't argue and I try to be more open and patient as to the next step.

So yes I have an odd life, but as I tell people who seem to at first be envious of our odd life or question why we don't chose to bump up an income bracket by me working, its not up to me. God has different things planned for me and I am ok with that. I have peace within my soul and I have joy.

Saturday, May 1, 2010

Today is May 1st, this is National Cystic Fibrosis awareness month. I feel like I am constantly trying to make others aware. Wishing, hoping, praying and pleading for others to at least grasp a little bit of What Brandon and many others go through. I want so badly for others to get it. I have to understand that a lot of people see a perfect little boy and say he is fine. Its easy to forget about someone who doesn't look sick. I also find it hard for people to understand the difference of a genetic disease and non genetic disease. The horrible thing about this all is it took me having Brandon to get it myself. I have a cousin with CF just two years younger than me. I remember her breathing machine and my grandma hand clapping her chest as kids, its just what she had to do. I remember the applesauce and the enzymes, but I guess being so young I never really knew what CF was, just that it was going to take my cousins life. Life expectancy was a lot lower when we were kids. My cousin moved away when she was young and then we barely saw each other and then I just carried on with life. I still feel like I should have known more. She is now one of my best friends even though she is 34 hours away from me.

As I sit here thinking about Brandon and all he goes through I feel humbled. How often even I take for granted how easy a breath is, or the ability to eat food and my body uses it for fuel. I can only grasp from a witness standpoint of how hard it really is, how easily he gets out of breath compared to others his age. How his pleading cry to not want to eat his food comes from the pain it causes him. How he sees me pull out the tubing and his vest and he gives me a look as if he dreads this, yet knows he has too. How a boy of almost two should be worrying about a puzzle piece and learning silly songs. How my boy of almost two sits on the kitchen counter every morning to take his previcid, bactrim, zitromax, AquaAdex vitamin, chewable vitamin, cod liver oil, loratidine, 2 nasal sprays, and 3 enzymes in applesauce, like a trooper patiently waiting his goat's milk protein shake. How my boy of almost two then gets to play for an hour before he gets strapped into his vest for 30 minutes while he breathes in albuterol and HyperSal, to follow he has his lunch which is like a therapy session to try to get him to eat. He takes his nap and then wakes up to be a normal little boy playing in the sandbox and throwing balls across the yard. How every evening he takes more bactrim and singulair before we sit down for the "big" treatment. We spend the next hour and forty-five minutes going with 30 minutes vest, breathing in albuterol, hyperSal, pulmozyme and pulmicort. How after all this is done my little man has to go to bed to start the process again the next day, and the next, and the next and so on...... how not one day in his life does he get to take a break from this, or it will jeopardize his health and livelihood.How he spends three hours a day to be able to do a tenth of what we can do. How I can look in my son's eyes and see pure Joy, he really lives life and he carry's a smile with him wherever he goes. He doesn't let CF take him down. He is a rowdy dirt playing, water splashing, car vrooming, dinosaur roaring little boy. This is why I am passionate, this kid has moved mountains with a single cough. He has helped people quit smoking and want to find a meaning for their own lives. This amazing little guy makes all those who really do know him and understand a day in his life that if he can carry on on with a happy heart that they should too!

Awareness to me is not just about the negative things that takes a toll on all those with CF. It is about life and hope, joy and love. It highlights the fruit of the spirit. I feel blessed everyday because I get to live a life I never would have guessed to be, and better than I could have planned on my own. When you truly live life like you are dying and appreciate just that very moment you are in, its amazing and beautiful. A monkey at the zoo is now and amazing creation. It is hard to explain but I pray that you all get a chance to live in the now. I feel that if more people connected to things that are bigger than themselves they will learn to appreciate the small stuff. I can not predict what will happen to Brandon especially with all the new medicines that come out, but I do know that the one thing I can control is my attitude and the type of attitude I teach him. I really want people to know about CF because I love my son, my family, my cousin and, many other people love others who are fighting this disease. I want people to know about CF because there is hope. I want people to know about CF because simple things that one person could do could help save a life, like becoming an organ donor, or donating money toward development and research for new drugs. When someone gets involved or donates on any level it makes me feel loved in a love thy neighbor kind of way. I know this may sound a bit silly but its a different kind of love that I never knew of before. I am thankful, I am joyful and I am very blessed.