Good Days & Bad

Overall, Hailey is an easy child to parent.  Her tantrums are less.  She doesn't get too frustrated at much.  She can be redirected.  She's stubborn, but she doesn't have a temper.  She is happy 98% of the day.  Most of the day Hailey chats away, brings books to be read, hands you a baby to hug or gives you princesses to make dance.  Hailey is self-motivated.  She always wants to climb higher, walk faster, and repeat more.  We are fortunate.  Hailey has been progressing and is relatively healthy.  Most of her doctor appointments are preventative medicine.  Trying to be proactive rather than reactive.  We see most of her doctors once a year.  The saying, "it takes a village to raise a child", is no understatement with Hailey.  She has her pediatrician, cardiologist, ophthalmologist, otolaryngologist (ENT - ears, nose & throat), speech therapist, occupational therapist, physical therapist and audiologists.  That's a lot of "ists".  We are happy with all of them and confident in their care of Hailey.  We also have a coordinator with the county's early intervention department and a developmental therapist through the developmental disabilities agency. 

Even with that team of medical professionals, family and friends, I still have mental breakdowns from time to time.  Early into our journey with Ds, they happened frequently...once a day, then once a week, backing up to once a month....now they happen about once every 6-9 months.  I had one hit last week (before that, I don't even remember when the last one was).  There are very few rational thoughts that run through my head during them.  There is no talking me out of my irrationality.  They are filled with tears and anxiety.  This last one went something like this....
I'm tired of being an adult
I'm tired of thinking about homework and laundry.
I'm tired of worrying that Hailey won't be successful because of something I did or didn't do
I'm tired of bills
I'm tired of therapy appointments
I'm tired of worrying about the cost of therapy appointments
I'm tired of doctors appointments
I'm tired of feeling like I don't know how to raise Hailey
I'm tired of feeling that no one understands the worries and fears I have for Hailey
I'm tired of worrying that Hailey won't be loved by others
I'm tired of worrying that people won't understand Hailey
I'm tired of worrying that people won't get to know Hailey
I'm tired of worrying that Hailey won't have friends...she will get picked on...she will be excluded.
I'm tired of worrying that Hailey won't find a job
I'm tired of worrying that people won't "see" Hailey and her personality...that others will only see Down syndrome
Will Hailey be okay after my husband and I are gone?
Will the boys resent Hailey because of Ds?
I'm tired of worrying that scientist are focusing so much on getting rid of Ds that they won't look into benefiting the lives of people that do have Ds.

See what I mean?  A lot of it is irrational.  Most of them are valid thoughts on their own...difficult to process all at once and actually crazy to deal with at once.  They are paralyzing all once.  They are suffocating...heavy.

I talked to a few friends throughout the day.  I had one tell me to stop freaking out and she wasn't about to feed my anxiety.  One listened.  One knew exactly what I meant because she also has a child with special needs.  Once I listed out all these fears and worries, I had to laugh because no one can tackle it all at one time.  I can't worry about everything that may or may not happen to Hailey and I truly need to take one day at a time.  When the worries were out in the open, they lost some of their power.  The weight lifted.

So as quickly as my breakdown came...it was gone.  Some of the fears and worry always lie deep within, but I keep them at bay.  If I give them power, they take up too much time and thought...and I miss what is right in front of me.  Three fabulous kids...funny, smart, loving, active...and a wonderful husband.

This is the look I got for telling Hailey "NO" after she turned off the XBox.

Drama child

What's not to love about this face?

This is the look you get if she thinks you are taking her food.

We fight this on long car rides...She gets bored.

Waiting on the bus to bring big brother home.

Her faves...the ingredients of a burrito bowl...lime rice, avocado, black beans...yum!

To be 100% honest, I almost didn't write about this.  Too many people will read it and think, see that is what life is with a child with special needs.  They don't realize typical or atypical...parents have irrational thoughts and concerns about their children.   We worry...it's what you do when you are responsible for others.

Life is back to normal and I'm living in the world of rainbows and unicorns :-)