Sunday, April 8, 2018

Time Marches On

It's April?!!

How in the hell did I miss an entire month and not blog one time...where was I? What the hell have I been doing since February?? At first, I was going to say I have no idea, but that is so not true. I know where I have been, I know what I have been doing, and I know I am literally emotionally exhausted from fighting the good fight.

March was a month dedicated to Pandora. Just ask her big sister - she will let you know how she was ignored and then she will let you know I told her to build a bridge and get over it. Funny how the month leading to Autism Awareness was all about Pandora and getting her the proper help. I fought for Pandora all of March. Different fights, different people, different days, but I had my fierce lion mom hat on for way too many days.

March literally marched across my face and caused me to learn more lessons of being a special needs mama- the first being fight until you've made the difference you need to make.

April is Autism Awareness month and while Pandora does not have Autism, she does qualify as a special needs child therefore making me a special needs mama. This month is dedicated to the children, the parents, the village of therapists helping these children. This month you can read a tremendous amount of positive blog posts about how their special needs kiddo adds so much to their life and they really wouldn't a change a thing. You will find less heart wrenching, truths about the daily life of being a special needs parent. I have watched a few vlogs and cried because those truths, that honesty, that rawness of real life is what speaks to me. Autistic or not, I share many of the same hopes, dreams, and reality.

While I agree that Pandora is a beautiful gift from G-d and her ability to overcome any obstacle is inspiring, the daily ins and outs of parenting a special needs child is not filled with sunshine and rainbows. The daily is filled with anxiety, frustration, and a fierce love that keeps you fighting for a child that cannot fight for themselves.

Daily thoughts that cross my special needs parent brain:

Will my daughter be able to live alone?
Will she continue to have friends or will they tire of her?
At what grade will it all come crashing down because there is no doubting it will.
Will we have to send her to a special school?
If we cannot afford a special school, is home school the answer?
How long will she need speech therapy?
How long will she need occupational therapy?
When will the children in her class notice she is different?
Will she get invited to the slumber parties?
Would she able to handle herself if she got lost?
Does she know what to do in an emergency?
How do I explain to people what motor planning is?
Will we always spend a ridiculous amount of money on therapies?
Why am I still fighting insurance companies?
Why is that people don't like to discuss the struggles?
How come everyone thinks because she is so cute, it will all be alright? Pretty don't pay the rent.
Will she go to college?
Will her rate of progression continue at this pace leaving her a little behind or will the rate of progression slow down causing a further delay?
Will everything be a struggle?
Will she ever get tired of fighting for the simplest of lessons?
For how long will my oldest resent the attention she gets?
Will my daughters ever truly be close or will the disability stand in their way?
How many more times do I have to explain that she is in fact a special needs kid?
Is it wrong to wish she was typical? (No. It's human nature)
How many more stares will we get when she melts down in public because she spilled something?
How many more head tilts and so sorry will we get when people find out she has CP?
How many more times will I hear I played alone?
How many more times will I struggle to hear about her day because of her language delay?
How often will I truly know the realness of her day?
When will I, as her parent, let go of my fears and let her navigate her own life?
Will I always run interference?
Will I always have to fight?
Will I constantly live a life waiting for the next shoe to drop?
Will I always being holding my breath?
Will I always have to call or email teachers and/or coaches to prepare them?
Will she always be immature and seem younger than she really is?
When will people stop thinking I am special for doing what's necessary?
When will people understand that raising a neuro-typical child cannot be compared to a child that is not?
Who will fight for her when I am gone?

Will her smile continue to melt my heart and forget all these worries even for just a moment?

No one likes to hear the above questions, but that is the damn reality. Just this morning Pandora spilled a drink and cried like she broke her arm. She froze in her wetness and cleaning up her own mess was a struggle. While the tears and snot poured down her face, Penelope rolled her eyes and walked out of the room mumbling.  That is our daily life. People say I don't know how you do it and while I understand the rhetorical question, the reality is I don't have a choice. She is my daughter and I would do anything for her (and for her sister).

Our daily life is balancing tough love and understanding for both girls while simultaneously teaching Penelope that they will never be parented the same. And that different parenting is not favoritism, it is necessary.

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