Wednesday, March 16, 2016

A Letter to Myself, Before I Became a Special Needs Parent

I think everyone would agree - the worst thing about waiting - is the not knowing. You sort of have to suspend yourself in limbo. You look forward to the day you get the answer. It's torturous holding your breath until that moment comes, isn't it? It can be anything; a job, a loan, medical results, a conversation... but ultimately you have a sense of peace knowing the specific time frame you will be waiting? Right?? Like, I just have to make it to Friday, "then I'll be ok." 

Well I've learned, with Cerebral Palsy there is no Friday.  There is no date of cure. There is no day where you wake up with resolution. There's just the day that you realize you have become content with uncertainty.  

This day hit me this past Monday, when I was in the waiting room about to check out of one of Fin's Specialist appointments. I used to drag on each appointment as long as possible, (ignoring the body language of the Dr. as he back pedaled towards the door) asking so many questions and relying on the answers to bring me comfort. I needed to hear things over and over and I would leave feeling that "if I could just make it to the next appointment, then I would be ok." I could survive the in-between. Something was different this time. I was smiling and not crying, I had no questions, and I left feeling as though it was just a regular checkup.  This doesn't mean I've lost my mojo. There's a lot of fight in me.  It's more like my brain just switched to the next level. You may have read my "wait scale" post, this is a newly discovered mode for me.

Fin was a preemie that suffered brain-bleeding and we started therapy when she was 3 months old. That's when my eagerness began and my ability to cry at the drop of a hat started.  An undiagnosed child is a cause for high emotions and will cause any parent to be extremely tense or fragile.  Though, I remember being fearful of the official title stamped over my daughter's medical records. I was scared but thought, "If we only had a diagnosis, then it would be ok, because then we could have a plan of attack." Attack.. That's how I felt about it, as though it was something I could fight off completely. Then the diagnosis came. Don't get me wrong, it brought a huge sigh of relief, but I found myself looking forward to each appointment thinking somewhere it would somehow change. The pressure I put on each one, lead to increased pressure on the next.  I say pressure, because it feels like there's an elephant on your chest and you won't get that full amount of air in your lungs until you get your answer or reach the goal. I realize now that I was sprinting - ignorantly. And this is a cross-country run. I now know why some of the other parents I met didn't seem to be "full of hope" which I perceived to mean that they weren't trying to better their children's life and they had settled. Oh, foolish me

I met some really inspiring parents that gave me unsolicited tips or advice, I knew they could read the fresh dose of fear written on my face.  At therapy one time I had a mom tell me, "It ain't easy, but my motto is- if your kid is smiling, then you should be too." Looking back I can't even bear the thought of my baby smiling at me knowing I was fighting back tears of what could be. I wish I could have a chat with myself from 15 months ago, pre-diagnosis.  I'd say;

Hey mama,
Life is going to get hard- but it's going to be okay.  Parenthood is going to look different for you compared to your friends.  It could always be better or worse.  Be grateful in each moment, even the ones you feel 100% alone.  There's no one to blame, and no one is blaming you.  There will be a diagnosis, odds are many other labels, titles, and words will enter your life. Get comfortable with them, but don't let them dim your light.  Watch your baby girl grow and don't worry about everyone else.  You are on a unique road, don't expect others to understand it. Some days you'll want to be treated the same, some days you'll want them to know that life is different for you and your family. This is the path of a special needs parent. Those words "special needs" don't need to scare you either, I know you never thought they would be used to describe you.  While they don't define you- you will find comfort in them. It's a journey that you will take one step at a time. You'll learn to live in the now, and in time you will discover the beauty that was created amidst this pain. You will adjust to the ups and downs and the possibility that today might be worse than yesterday, but tomorrow will be better. You won't let this rollercoaster determine how you treat others, and you will certainly teach your daughter the same.  You won't merely "survive" each moment, you will make the most of them, after all this life is what you make of it.  You will celebrate every tiny miracle each day brings, and find yourself becoming best friends with your daughters many therapists . On the days you feel defeated, you will find a moment of joy and forget the whole day was challenging.  You don't need to feel guilty for feeling tired some days, you're human. Her progress doesn't solely rely on you, she will go at her own pace. Push her, but allow her to enjoy being a child. Follow her lead & be strong for her.  Don't compare her life to others',  it calls for a completely different set of rule.   Learn to adapt quickly, learn to speak up for her. You can do this, you can be your angel's backbone when she is weak. While you can control many avenues in your life, this one isn't meant to be controlled.  Her life is beautiful. Nothing can take away the love you have for her.  Nothing! Don't beat yourself up about trying to make everything perfect or easy for her- she's a tough cookie. You will never "fix" the cerebral palsy, but you can teach her to adapt to the best of her capabilities.  You won't let CP own her.  While you try to teach your daughter the smallest of tasks, she will be teaching you about the big picture. So, hold on tight and be prepared for the most amazing chapter of your life. 

Love, 
Yourself 




29 comments:

  1. Thank you so much for this. I just love you and Fin and it gives me so much hope that whatever comes it will all work out.

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  4. I, too am a special needs mama & i truly enjoyed reading this!! Really hit home for my daughter & i as well.

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  5. Thank you from the bottom of my heart! I feel you took my thoughts and wrote them down!! I can't wait for my husband to read this.

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  6. I love reading your blog, its like your speaking straight from my heart. My daughter Allie gad a perinatal stroke, right hemiparesia, mild c.p. Ive come realize these words are interchangeable. She has challenges but is just as perfect as your beautiful little girl! I somehow came across the u tube video of Fin dancing and it was wonderful and was laughing and crying but she is so precious!

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  7. The letter to yourself... was 'exactly' what I needed to read today.
    Thank you. I am truly grateful to have stumbled upon your blog.

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