The Hailey Herald

The Hailey Herald

Thursday, September 5, 2013

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 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 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'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 :-)


  1. I'm glad you wrote it. It's true--all of it. You could substitute Owen's name in your list and those would be my thoughts when I have an anxiety-ridden, irrational day. They take me by storm when they come and I'm glad I don't have them as often as I did when O was a baby. At some point in this last year, I realized I am doing the best I can and that's all anyone can ask for. I've decided that other people's opinions don't matter to me; I might listen, but I don't have to take it to heart at all.

    1. I hate anxiety-ridden days! I had a local mom from Hailey's playgroup email me today with the exact same fears. We definitely all go through it at some time :-) I hope I was able to talk her out of her mood :-)

  2. Your worries for Hailey seem like the kind of worries that all parents would have. Maybe the specific ones are slightly different (like about appointments and stuff specific to DS), but don't we all worry, right? And some of them are irrational, what can ya do. I think it is good that you wrote this. Just shows that parents of a child with DS are not magical heroes needing special powers. Just regular old people wanting the best for their children. :)

    1. I've had similar freak outs about the boys, but I don't think they are quite as intense. Yep, we are definitely just regular people wanting the best for our children! No hero cape or angel wings here :-)

  3. Glad you wrote these honest thoughts...I feel the same some days...Think this all comes hand in hand with being a mumma & even more so being a special needs one...Thanks for opening up so honestly...

  4. Sounds oddly familiar. Samantha's 7, and I still have those fears. I love watching your girl grow up! ;-)

  5. Yup, I could have written this myself too! I have had all those worries and fears. I felt like that often last year...I thought about Ds and what it meant for Russell and his future a lot. A year later and I can tell you these things rarely if ever cross my mind. The older Russell gets, the calmer I become.
    Thank you for sharing such an honest post. All of us can relate to it :)

    1. My panic attacks definitely don't happen as often. I think part of it is school starting, soccer season, another round of dr appts. Too much for mom all at once :-)

  6. I hear you! I haven't had a bad day in a long time but they do still come. Down syndrome is so extreme for me: one day I'm crying because Ben is so awesome and his friends with Ds are so awesome and then the next day I'm crying because I'm so worried about Ben's future. It's a roller coaster for sure!

  7. Girl, I have had the same irrational thoughts too--just sub in Ellie for Hailey! I am really tired of the bills. And the calls to insurance companies. And therapy appts. I love the pic of Hailey cradling her face with her feet. Miss Flexible!

    1. I hate insurance and the bills. No way around it. I think I've conceded I will be paying a bill of some sort for the rest of our lives!