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 mother

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So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened. So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Perox

The Journey We Are On.....

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