This ISN'T What I F&*KING Planned

I want MY plan back. The one where I watch as my 5 year old heads to Kindergarten and I play Pre-School Games with my last born baby. I want MY plan back where I watch as my kids flourish and grow but this spring, MY plan was changed. My plan now includes speech twice a week at a University nearly an hour away, four kids in tow. My plan includes therapists in and out of the house four times a week and My plan includes IEP meetings and plans for the fall when my just turned 3 year old boards the bus because "special services" says she needs it.

My plan, isn't His plan and I am now hitting the angry, tantrum stage where I want to just scream "ITS NOT FAIR".

Sure, I get it. I am so blessed. I have four healthy kids. I have a husband. I have a marriage. I have a fifth child with special needs but she's moving forward and flourishing but I like control and I fear being out of control.

I also know that Seraphina's diagnosis isn't life threatening but it does threaten the goals, dreams and ideals that I had for her and our family. It changes it all. The dynamic, the goals and the future.

We headed to the beach this week and while I enjoyed myself, I wondered, would I ever see her point at waves and respond? Would I ever be able to sit and relax and enjoy vacation without worrying her lack of fear might mean she's toppling over under a wave? Would I ever watch as someone engaged with her and she engaged back? Appropriately?

I am also angry at myself. I am angry I didn't know sooner. I am angry I didn't do sooner. I am angry that I let her down. You can say I didn't, but I feel I did. I have known. For a year. I have wondered. I have questioned. I have considered. I have been quiet and now her suffering is partially my fault.

So many say this is the 'grief process'. Perhaps it is. If it is, this is the anger/guilt process. I just don't want to play. I want a child like the ones I have had before. I want a child that is on the spectrum of "normal", not the spectrum of Autism.

Maybe I am not ready to completely accept it even though I say I am. I see bumper stickers with the freaking puzzle pieces and I want to throw them away. I don't want to love my kid because she HAS autism. I want to love my kid because she's my kid. I don't want "special" services calling to confirm my meetings. I want the school to call to confirm my meetings. I feel like saying "special" is stupid. Its not special, its overwhelming, its challenging, its scary, its alarming. Special?

This week at the beach I listened. I watched. I took it all in. I felt sad. I felt overwhelmed. I felt angry but I also felt blessed. I felt blessed because I know if my Aunt Cathie were here, she'd be my biggest cheering section. She would know that I was given this challenge to grow and she'd kick my butt for feeling as low as I do now. Truth is my Aunt Cathie isn't HERE but she was THERE. Where I was this week. She was in the waves lapping at the shore reminding me that I am not alone and the force of nature is greater than one person. She was in the people I met, in the locals, reminding me of my favorite childhood memories. She was in the rainbow reminding me of His promise and Heaven and she was in the family of dolphins. The mom playing with the babies swimming North as they head for summer waters. You see, this isn't what I planned. Its NOT what I would choose but it is what I am living and like it or not I need my big girl panties, some support (and wine) from good friends and the chance to prove that life is what we make of it...powering through road blocks and becoming stronger.

Comments

  1. All I can say is I totally feel you, El. You have every right to be angry and upset and confused and annoyed and sad. BUT don't let it overwhelm you. Don't let it win. Allow God's optimism and hope flood you. If you succumb to darkness, the darkness will envelop you so, so much that getting out will be nearly impossible. You won't easily find the way out in that darkened room. However, if you stay close to the light, and hold on to it, He will lift you away in it, and give you peace. I can't guarantee pure joy and happiness always, because you will still be angry frustrated and all the rest many times, but more peace will be there, pushing the dark away. And peace allows joy to exist. Do but do not worry. And one last thing, if there's one thing I've learned from being a social worker its that autism is normal. The normal spectrum is so vast and so wide, Ellie. We assume everyone that looks normal is, but there is no such thing. Every family has something or many things that are outside that normal range. Which just goes to show it's all normal. It's absolutely normal to be carrying around really big crosses that absolutely no one can see outside your family. Every family is an island and from the outside, all most see is an island, perfectly calm there in the ocean. but within each, there is LIFE, and HUMAN IMPERFECTION, and BEAUTY, and ANGST...but all that matters in the end is living whatever life we've got with peace in our hearts, offering it all up to him and demanding from him that he takes good care of us...after all, us girls demand that from our daddys :-) we're totally allowed.
    love,
    Gabs

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