The things we take for granted...

As you might imagine, my life is turning out much different than I had expected. I hope that I was never a person that took too much for granted, but I do believe that I am more thankful now than I was before Ethan came into our lives. I am also more aware of how much is taken for granted....

We are in the process of selling our house. Why move? We want a house that is more Ethan friendly. We want a house without stairs so that when he is able to walk with a walker or if he needs a wheelchair that our home will not be a hinderance to him. So as we began this process of looking for a different house we started with a long list of it can't have this....

NO Bi-levels
NO Two story homes
NO one story homes with large steps up to the house
NO one story homes with step ups or downs from one room to another
NO narrow hallways

All of these things seem like they shouldn't matter, but to a family who is uncertain about the future health and mobility of their child they are....

Sometimes I wish that I could take more things for granted, but that is no longer my life.... I notice things all the time that aren't accessible to people of any age with a disability or trouble with mobility.

After a lot of searching we have found a house. We've made an offer, continguent on the sell of our home, and it has been accepted. It is ranch home that is already ramped for a wheelchair! It needs some work, but I love it. Please pray that our home will sell so that we can be in the new one before winter!

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"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall it is our hope that in the end that we will bring glory and honor to the Lord. God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit. All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL. We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders. Here are just a few of the faces of PBD.

Big Day - Field Trip to Bass Pro & Easter Seals Family Night at the Playhouse Children's Museum!

Ethan was so tired tonight. He had a busy day at school, which also included a field trip to Bass Pro to meet Santa and to go bowling, and then this evening we had our first visit to the Playhouse Children's Museum. More importantly though, here's a quick medical update: We are thankful to report that for the last two days no one has seen any seizures, so we are hoping and praying that this most recent increase in his medications might be making a difference. Our current neurologist (the one who is 2 hours away) called in a stronger dose for the diazepam. Ethan had been prescribed a 2.5 mg dose by the neurologist who saw him when he was hospitalized last month, but since it has not stopped the seizures the last 2 times it was administered, our neurologist calculated that a 7.5 mg dose is more appropriate for his weight. So our hope is that the new dose will stop the cluster seizures, if they occur again. Obviously, the goal is to not have a need to use the...

The Journey We Are On.....

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