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.