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I'm not too sure why I would pick a sunflower in the winter. I guess the shoots or peeking out of the ground crying for spring and I felt the need for a sunflower in my life. My life is crying out for spring. Winter has cast a dark spot in my soul metaphorically speaking. I have never experienced so much pain in one year. Maybe I have forgotten if it has ever been this bad. I am usually one to find blessing in whatever may happen; however as I see the sunflower crave the sun and see it facing the
sun - I know, I know that I must seek the Son as well. Maybe to write it will help me get through it. To speak to God as I write this blog.

Not Why but How God? How can I cope with a daughter who will die from her muscles shutting down. How can I cope with this house that is not finished? How can I cope with manipulative people who have caused so much pain in our lives and lied and hurt our family. How can I be a support to my family who are still grieving for Nicole?
How can I trust you more? When I first learned about Nicole's disease I said ok God I know that you have entrusted her little life with us and I will help her through this time Lord I will make her life the best it can be. You said, "will you love me still if I give you more to bear?" "Of course Lord, I will I said." How much more I say now? How much? I know that there are worse things to bear. I see the news, I see the pain people endure. I want to give you all I am Lord. I know sometimes that there are things that will happen. I always knew something would happen to Nicole. My heart would beat fast and sharp breath would escape as if I was stabbed. I would look - look at this little girl and Know that it was not good what would take place.
I want to become closer to you Lord but I fear that I may know more or see more if I do. i know I have a jumble of thoughts and emotions right now. Is this me seeking your son? I realize that you want our family close. It has become closer as it once was in this past month. The pain from manipulation and lies has stopped, that has been so awesome. Thank you God! I know you have much in store for our family. I want to give it all to you! I want to poke my head out of the ground and seek, seek your son!! Please help me!

It was hard to watch Nicole get an IV done for the first time.. It didn't go in right the first time and It hurt :( The Dr. felt so bad for her.. She fell asleep almost instantly. The piece of muscle was taken from her upper left leg. It is an inch and a half long.. This will determine for sure the type of muscular dystrophy she has.

Sometimes the gifts of Christmas come to us in watching our children. One of these moments was watching Ry be a " Rock'n Santa" he "suited" the part!

I wish, I wish I could take it all away from my little girl. This horrible disease that will cause her muscles to waste away until it takes her life. I know that there is a reason for everything.. Why does life have to be so painful? Amidst the pain we live of course. We laugh and be silly. we Do not rain on our daughter's parade. But when she is not watching we look at her and we see an "Earth Angel" - a little girl who demands no attention. Our hearts are breaking every more each day. We see signs of more weakness in her :( God will call all of us home at some point we know. We just want to hold on.. to protect her from the pain and hurting of this disease! Oh how I ache for her. I love you so much Nicole! So, So much!!

Duchenne muscular dystrophy (DMD)

Main article: Duchenne muscular dystrophy

Duchenne muscular dystrophy (DMD) is the most common childhood form of muscular dystrophy. DMD usually becomes clinically evident when a child begins walking. Patients typically require a wheelchair by age 10 to 12 and die in their late teens or early 20s. In the early 1990s, researchers identified the gene for the protein dystrophin which, when absent, causes DMD. The dystrophin gene is the largest known gene in humans. Since the gene is on the X-chromosome, this disorder affects primarily males. Females who are carriers have milder symptoms. Sporadic mutations in this gene occur frequently, accounting for a third of cases. The remianing two-thirds of cases are inherited in a recessive pattern. age at onset: two to six years; symptoms include general muscle weakness and wasting; affects pelvis, upper arms, and upper legs; eventually involves all voluntary muscles; survival beyond 20 years is rare.[4]

Dystrophin is part of a complex structure involving several other protein components. The "dystrophin-glycoprotein complex" helps anchor the structural skeleton within the muscle cells, through the outer membrane of each cell, to the tissue framework that surrounds each cell. Due to defects in this assembly, contraction of the muscle leads to disruption of the outer membrane of the muscle cells and eventual weakening and wasting of the muscle.[4]