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Opsoclonus Myoclonus Syndrome

This category is all about my son’s condition. He took a nap on June 6, 2017, and he woke up without the ability to walk, stand, stop shaking, feed himself, etc. He was misdiagnosed several times.  These misdiagnoses included strep, Cerebellitis, and Ataxia Telangiectasia Like Disorder. This is our journey.

Reflecting on an Anniversary I Would Rather Ignore

Reflecting on an Anniversary I Would Rather Ignore.  It has been 2 years.  So much is the same, yet so much has changed. But, on this day,   Our Lives Changed Forever Anniversary I Would Rather Ignore. What began as a somewhat normal day. Turned into…… A nightmare. Get up at 8:15 am G got …

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Reflecting on this Open Letter

Reflecting on this Open Letter to the Public.  There are days when it doesn’t bother me.  Yet, there are days when it does.  Believe me, I pay attention.  Also, my son and my other kids…they pay attention.  They all wonder why people are staring or whispering.  It is uncomfortable to watch some of the reactions …

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Reflecting on Looking at a Miracle

Reflecting on Looking at a Miracle. “Did you even know that you were looking at a miracle?” That statement was said to me, at the chiropractor’s office.  In the midst of my self-imposed chaos, that statement made its way from a gentleman’s mouth to my ears. I just sat there, with my mouth open and …

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Reflecting on Meeting My Okapi

Unconventional Treatment Reflecting on Meeting My Okapi.  As we were finishing up an “unconventional” treatment plan for our son, we decided to give our family a bit of respite.  When you have 11 people in your immediate, your feet are under my table for food, family….everyone is going in a different direction. We have one …

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Reflecting on Praising God in the Storm

Continuing to Praise God Reflecting on Praising God in the Storm.  When things are running smoothly, and all things are moving and grooving in a good flow.  I picture my family and me sitting around a campfire singing Kumbaya.  Then, you see your fire starting to go out, and it is getting cold outside, and you …

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Reflecting on Blooming Where You are Planted

Reflecting on Blooming Where You are Planted.  Fall is finally here and guess what?  It brings rain.  That’s okay, we need it and I love a good gentle rain with a nice breeze. Waking UP is Hard to Do This morning, I woke up with a start.  I never heard Hunter make all the sounds …

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Reflecting on My Boy Walking Without Assistance

Life before: Realize this is still pretty good compared to where he got before this treatment. Reflecting on My Boy Walking Without Assistance Reflecting on My Boy Walking Without Assistance after 3 intensive days of therapy. I can’t even adequately verbalize my emotions.  Amazingly, I watched him stand up, by himself.  As a result, this …

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Reflecting on Our Ache of Reality

Before He Got Sick   The Ache of Reality   Reality Reflecting on Our Ache of Reality.  I find myself, lately, with the ache of the reality of what surrounds our family.  Literally, my heart physically hurts.  There are moments when I see myself going about my day.  Then, all of the sudden, tears begin …

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Reflecting on our Make A Wish Journey

Reflecting on our Make A Wish Journey.  Yesterday, my cell phone rang, and I didn’t answer it.  I do not answer numbers I do not recognize, as I know it is probably a telemarketer and I do not want to deal with that.  If it is someone that *needs* me, that is not a telemarketer, …

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Reflecting on a Crap Kind of Day

Reflecting on a Crap Kind of Day. Comin’ To Jesus Meeting on May 31, 2018…what a crap kind of day.  Hunter had an appointment with his neuro and it is a long drive that I never look forward too.  Like ever. Big Daddy decided to go with me because of some “issues” that he felt …

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