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.