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Friday, September 17, 2010

Questioning Faith

I applaud and admire people who are so strong in their faith that the biggest tragedies only make them stronger. I am inspired by the good they can see out of terrible situations. I read their stories day after day, hoping and even praying that my faith can be that strong. But at this point, it's not, and it's something I try to work on every day.

I've never been a very religious person when it comes to organized religion. I have always had my beliefs and have chosen to live my beliefs in my life, with my family, and not in any other sort of group. I've tried churches and youth groups in the past, but just found that sharing my faith openly with others wasn't something I was comfortable with, and it may all stem from not be confident in my faith myself.

Lately, I've found myself questioning my faith, and my belief in God so much more than ever before. In the past year, I experienced a loss that made me look at myself, my life, and my faith. Since my loss, I had hope that I could grow stronger, and realize that everything happens for a reason, and that God has a plan. Unfortunately, it just hasn't happened that way.

I see and read about so many people struggling with infertility. People that will spend thousands and thousands of dollars on treatments in hopes of having a baby of their own. People who have heart wrenching stories about loss that I can't even try to comprehend. My husband and I have a wonderful little boy, and no plans in the immediate future to add to our family, but we did have a miscarriage last summer. Even though at the time, we were not trying for a baby, the feeling of that loss still carries with me today. I don't necessarily want another baby right now...but I want that baby -- so, so badly.

And then you read stories, and perhaps even have people in your own life, who don't cherish the babies in their life or can't provide for the babies they have. It's so hard for me to have faith in God when I see babies who didn't even have a chance from the start when there are so many people out there who would give anything to have a baby, or who were wonderful parents and have had a baby taken away. Why would God do this? To make you stronger? What about all those babies from 20 years ago in the same situation that are now either dead - on drugs - alcoholics - abusers - killers - robbers - or just repeating the same pattern and bringing another into this world.

I still have hope that I can increase my faith, and learn to trust that God has a greater plan. I want so badly to believe His journey for me is really that - His journey for me. I'm just really having trouble right now.

Wednesday, September 15, 2010

Remembering Kenzie

In early December last year, I found Kendra's blog, and was immediately drawn to her family, and her little angel, Makenzie. Days after I started looking for updates from Kendra hourly, Kenzie passed away and I was one of thousands who cried that day for The Webster Family. Kenzie was 4 months old. She was beautiful, amazing and incredibly loved.



Kenzie was only here for 4 months because of an awful disease I had never even heard of before - Spinal Muscular Atrophy (SMA). After hearing about Kenzie and praying for her hour after hour, and while continuing to this day to pray for her dear parents and family, I knew I needed to find out more about this disease. Thankfully, Kendra was very open about SMA and through her and my own research, I've found out about so many more tragic stories just like Kenzie's.

*SMA is the #1 genetic killer of young kids.

*It occurs in 1 out of 6000 births.

* 1 in 40 people carry the gene for SMA unknowingly. Most have no family history.

Babies with SMA are born perfectly healthy after perfect pregnancies. It isn't long before they start to deteriorate, however. SMA causes lower motor neurons in the spinal cord to break down and die. Without those neurons, the brain can not control the muscles, which causes the muscles to weaken. Eventually, these babies can not walk, eat, sit, stand, swallow or even breathe. While their bodies waste away, these babies remain to have brain functions that cause them to be alert and aware. Currently, there is no treatment or cure for SMA, but researches are very hopeful that with funding, a fix is just over the horizon. Babies with Type 1 SMA typically do not live to see 2. Kenzie didn't live to see 5 months.

The Webster's story breaks my heart every time I think about it. I understand that there are SO many diseases out there reaching for cures. I am a strong advocate for JDF as my nephew is a diabetic and has been since he was 2. But every time I hear about SMA and Kenzie, I want to DO something. Now. These babies aren't even given a chance. And, what's worse, IT COULD BE HELPED. They CAN have a chance. They CAN live a life. Their parents WILL see them grow up. They HAVE to. Research is pointing in ALL the right directions, they just need more funding, and maybe SMA will no longer be the #1 killer of young children. Maybe it will no longer BE the killer of children, and then we can focus our attention elsewhere. But for right now, SMA NEEDS to be cured. NOW. Before another child is taken before she should be. Before another parent sees the day The Websters have seen.

6 months after Kenzie passed, her parent's threw an amazing event to raise money for research. They had volunteers, donators, a great day! They raised over $15,000 for SMA research. $15,000!!!! Two parents who are ON A MISSION to make sure no other child has the same fate as their Kenzie. They have started MRW and every day, I watch from afar as they do great things in spite of their loss. They AMAZE me. They INSPIRE me. They are SO much stronger than I can ever imagine I will be, and I aspire to be as motivated, strong, and admirable as Kendra.

The least I can do is blog their story, pass on Kenzie's legacy, and HOPE and PRAY for a cure to this awful awful disease. Right now, YOU can help too. Please do. PLEASE take a minute of your day, and VOTE for the Gwendolyn Strong Foundation.

Go to www.voteforsma.com. VOTE for the Gwendolyn Strong Foundation. VOTE today. VOTE tomorrow. Vote EVERY DAY until September 29th.

And if you want to read Kenzie's story, please visit Kendra's blog. She will inspire you too. I promise.

Thanks for voting. Please KEEP voting. And spread the word.