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.

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