Welcome to Fall-What's a little dirt? 9/23/09

It is beautiful in my part of Texas as Fall begins. It makes it bearable to live here considering that in the Spring time the wind blows 90 miles an hour and the dirt from New Mexico seeps through every nook and crack to land on your floor. BUT, what's a little dirt when the today was sooo beautiful with the crispness of the fall air and the leaves just beginning to turn. I have started to notice that our lives are very similar...what's a little poop? HA. Everyday there are 3 or 4 liquid stools that no diaper has been designed to contain, and there are messes, and lots of laundry, all while regular life continues (homework, school activities, shopping, making lunches, football, dance, etc. etc.) BUT, what's a little poop when my children are all so joyful and growing and dealing with all the things we have to deal with as if that is life. YES, joy. It has been a long dark winter that lasted from Fall of 2008 until now. Hope seems to have floated back to the surface. I can finally look at my baby girl and see the 22lb bundle of happiness that she is in spite of all she has been through. She simply is the happiest child-simply happy to be alive. She is soooo normal. BOY, did I worry about this. She has met all of her developmental milestones so far. She is between the 35% and the 50% on height, weight and head circumference. She runs around everywhere. Hugs and loves all of us, including our golden retriever puppy, every day. She simply doesn't know that anything is wrong with her. If she did not have her feeding tube attached for 20 hours each day, no one else would know either. BUT, again there is hope. At this time Kensley has a feeding tube and a central line. The central line allows her to have fluid (basically saline) infused each night. At this time we have weened off of the fluid to 200 ml over 7 hours, and her labs show that she is handling everything great. So, now we will be decreasing the fluids even more, until they will be so minuscule that they will go away all together, meaning that the central line could be removed before Christmas. If you're in a praying mood, that is my request. I can not believe how far we have come or how hard and long this part of our journey has been. This is a chronic condition and there will be mountains to climb in the future, but the whole family has finally broke in the climbing boots and we are much more prepared for trip.

I have to be honest to everyone who has followed any part of our story. From the moment that Kensley came out of the 2nd major surgery(40 hours after birth), and we were told that she lost most of her small intestine, and that the prognosis was not good, I was not living in faith. I was not praying in faith. I was not existing in faith. I was scared, and desperate, and devastated, and angry, and confused, but I was not faithful. I didn't really pray to God with faith that HE could do anything for Kensley. I begged and cried to God...for almost a year. I could not feel the Holy Spirit and I could not really see the progress that Kensley was even making. All I could see was that things were not good. They were messy and gross and scary and impossible. I heard it over and over in my head, "How can she thrive with this condition, How can she lead a normal productive life, How can I keep this type of care up, How can any of us lead a normal productive life while caring for Kensley? AND, Why did God let this happen?" I don't know when my heart began to let go of all the bitterness, and fear, and hopelessness. My depression got pretty bad. I was putting on a good face, saying the right things, but not necessarily feeling them. Inside, I blamed myself for Kensley's condition. I had to give up the job I loved, not to mention the financial strain. J. has had to travel a lot with his job. He carries the insurance that has kept us afloat. So, I am the single mom for at least 3 nights a week, usually more. I became 60lbs overweight. I haven't slept through the night in 16 months. I don't get to go to church regularly anymore, and I have not been away from Kensley for more than 3 hours since she was born. Then there all the regular daily things that have to be done. It is quite a list. I am probably entitled to a little depression. I do know that the only thing that has keep me partially sane has been my daily Bible time. I have just kept reading God's word. Some days I think I was just reading and not even thinking, but I was there and even though there were times when I could not feel it, God was holding on to me. Holding on until my pain lessened enough to start hearing Him again, lessened enough that I could start feeling His love again. You see, God believes in me, no matter how I FEEL. He believes in me and J. and Kaydee and Cooper and Kensley. He believes we can do this. He believes we will not only make it but we will succeed and be better than ever. He believes we will show the world what God does and that many will believe because of it. How do I know this? I kept reading and some things got through...

"And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character, and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us" Romans 5:2b-5

"For I am convinced that neither death nor life, neither angels nor demons, neither the present not the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:38-39

I guess I finally figured out that Kensley was not born dying. She was born dying ...to live. Tana