Tag Archives: #sensorydisorders

Your Pink Elephant Is Real!

I sat through two appointments today about what to do with my youngest, who is 2 year old and having attentional/sensory issues.  This week has been a whirl wind.  I am trying to catch up after having a bad case of the stomach flu.  My oldest had an appointment too, due to her anxiety over middle school.  She is going to be going to counseling for  a bit.

It’s like this. Last fall, we paid a $1000 for the front end of my car to be rebuilt after a tire popped on the highway.  Thankfully, we walked away. I started hearing more noises lately.  It’s an inspection sticker month.  I asked them to look for the source of these noises.   I am hoping they just say your crazy lady.  I returned to get more $1000 estimates on more work to be done.

I was hoping the day of my 2 1/2 year old evaluation I was hoping to hear I was crazy too!  My gut is often correct.  The worry is setting in.  She is two and half and she needs services for attentional/sensory issues.  What is her future going to be like?  What will kindergarten be like?  I feel the guilt, the worry and the blame.

Remember something, my first daughter died from Campomelic Dysplasia.  I was a Rare Mom first.  I learned rather quickly how to advocate for Avery in the 14 weeks we knew.  It happened again.  I advocated for Addison.  Shortly later the breast cancer came.  We are not talking a rare disease or cancer.  Weather it’s migraines or sensory/attention issues, this rare mom is up for the challenge, because Avery Bravery taught me so.  Even through these are more common problems, my brain is on it!

Next week will be a little emotional for me.  It’s my birthday.  I am not grieving getting old.  I grieving my losses.  My father was extremely verbally abusive.  I knew that I was not wanted at an early age.  My mother gave me all she had.  It was my saving grace.  There is still a piece of me that makes me feel like a loser.  It is at this time a year, I miss my mom and my angel children the most.  I see what others have.  The negative thinking is having a field day in my mind. The empty parts of me light up with intensity.   My sadness has lessen compared to other years, when I would wake up in tears around my birthday.  Some days the emptiness of his words punch through.  I have plans to quietly celebrate my day.  This weekend with friends.  Next week, I will celebrate with the girls on the actual day.

Lately, my career path options has been popping up.  My resolution was to bring our family to a healthier path.  I signed papers for the school system to look at my youngest daughter.  She only has about 5 months with Early Intervention.  More time pressures on my schedule at work are possible.  This week was filled with antagonistic comments. I couldn’t fight them.  I feel like I work harder than I need too.  There are other options to make my life easier.  I don’t claim to have the perfect balance.  After Campomelic Dysplasia and Cancer, I don’t have the same priorities. Surely, there must be more options.  Life can’t be this hard.

There is a housing shortage.  All this hard work to get out of this city.  The houses without needing work are too expensive.  The thought of moving out of this house into another fixer upper depresses me.  We put so much into this house.  It may not be this year the big move.  I am hoping.  The last big project is the bathroom being redone.  No house is without work to be done.  Hopefully, we find that dream house and move on.  The other town is top preference.  I was told if my daughter could walk to a bus stop, they would consider transporting her.  Not so much is up in the air as compared to other times in my life.  I am going to hope.  I may take a plunge into a new career move.

PS-The doctor thinks Joy may have some milk protein allergy going on.   She is doing way better on milk free milk like Almond milk.  The eczema cleared up on her skin Her acid reflux meds are fine.  She recently had regular milk by accident.  Her behavior was uncontrollable and she had diarrhea.

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