I'm fine. The words spoken by most special needs parents.
This is the story of how we were able to become part of Kreed's World through his communication device and also of our grief now that he has passed away. Kreed found his voice and was finally being heard and we will continue to honor his memory and story. This is and was his journey of hope through nonverbal autism and complex medical conditions that ultimately took his life.
Tuesday, March 10, 2015
I'm fine.
I'm fine.
What we really mean is we are tired, sometimes broken, sometimes sad, sometimes tired, hurt, aching, or numb. Or we might be excited, shocked, cautiously optimistic. But we say fine because so much of the time it's the safest thing to say.
Some days with Kreed are amazing and wonderful and hearing his voice is the greatest joy of our life. Other days my muscles ache from his rages and I'm numb to my feelings but deep down inside so incredibly sad for the suffering he must feel. Like I said- I'm fine.
Some days I wish someone would finally look at me and say you are most definitely not fine. But then I know I will still lie through my teeth. Sometimes I ask myself why? Why do we say we're fine? I think it's because the alternative is too great, the emotions are too raw and powerful, and we feel as if we would drown in those emotions if we actually felt them.
Not everyone talks about this side. When you've spent nights and days awake for weeks or months on end and can no longer even tell the difference between day and night or even if it's a week day or a week end. When you lay next to your child at night listening to them breathe and thankful for each breath they do take because you fear when you hear them struggling for breath. Or when you watch your child pound their head into the ground because it hurts so bad, and somehow in their body, hurting their head makes it better. Or when you're holding your son and the tears roll down his face into your hand while you are holding him and keeping him safe, knowing you would do anything in the world to alleviate their suffering.
But I'm fine.
I have to be fine. When people ask me how do you do it, the answer is simple. Because I do. Because what other choice do I have? He's my son. He is my heart. He is my soul. When your soul is suffering, you would do anything to make it better. So I search for answers, I research, I connect with doctors and I never stop until I know he feels better. Because he's not fine. He is suffering and he is telling me. His emotions are raw, his feelings are more real than I've ever seen and his voice rings true- he can't say he's fine when he's not. I have to be there for him. I have to help him. I have to be fine for him. If I break down, it means nothing will be solved for him. I can't do that to him.
So I'm fine.
We do what we can, when we can for ourselves. Five minutes here. Five minutes there. Or on calm nights we get snuggy and catch up on our DVR. We rejoice in those quiet moments and save up our strength for the storms we know will come.
The thing about the storms though- they come, they rage, they blow us around and knock us against walls...and then the calm comes. We can breathe. We take time. We heal. We love. We strengthen ourselves for the next storm.
Not everyone's experience is like ours, but I can tell you without a doubt, every special needs parent you meet has weathered storms you'll never know about, and lived to tell you another day that they are fine.
Behind every fine is a story, a past, a strong heart and soul who has seen more and experienced more than most people will ever realize.
Because we are fine.
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Thank you.....
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ReplyDeleteOh I'm so glad you posted, I was just about to come here and send you a message that I was thinking of you. We are in a storm right now here too. It's been a tough week. I too answer "I'm fine" that's my I'm not ok answer really. If I am good I will say so, if I'm not then "I'm fine" you wanna talk feel free to email me. I sooooo understand. Daisygirldesigns at yahoo dot com I am praying for you guys and I'm so sorry that things are difficult right now. I'll share our song with you and kreed. It's the song Matthew and I listen to together from time to time when things have been really hard.
ReplyDeletehttps://m.youtube.com/watch?v=xWK_gs-caJ4
Love to you both from us, and continued prayers.
Well said Erin! Wishing you more rainbows than storms xoxo
ReplyDeleteI wish I was close by… just to lean on…
ReplyDeleteI will keep you guys in my prayers for sure. All you can do is it take one day at time. my mom tells me that so don't go into a meltdown issues
ReplyDeleteKreed is a special person in the world Erin
i have faith in humanity because of people like you.. thank you for existing. I'll remember you in my prayers
ReplyDeleteYou made me cry!
ReplyDeleteWell said. I can always find moms much worse off than me. I am grateful but at the same time I feel so bad for the moms that have it so much worse than me. I will pray for your family.
ReplyDeleteYour Blog post is spot on. We all want to be optimistic or decide not to get into details about our lives and say "were fine" even if not all is well as we are afraid of how others will react if we give them the full blown account of our sleepless nights and uncertain days.
ReplyDeleteI'm heading to Israel on a short notice with my Father to help a relative going through a medical treatment. I could say that I'm fine but deep down inside I'm crying and want to help my relatives get through this. It's a 24 hour journey but I'm sacrificing my life to be there for my family. I'll do anything and everything to help someone in need.
My heart goes out to you and I know that deep down inside you feel the stress and lack of sleep that overcomes you but still you are making sacrifices for Kreed so that he can live in peace and work through the pain.
I'm so grateful for your Blog as it helps me to help my relative heal.
Best wishes to all of you. Be strong and if you need anything please let me know. I'm in the same boat as you with my relative abroad.
Erin you and Kreed help so many people. I try to come to facebook daily (Im Joe Bloggs there as I dont do facebook. i only ever comment on Kreeds page) to see whats happening and to learn from you both. You both really are my hero's. I wish i knew what to do to offer support xx
ReplyDeleteFine also stands for
ReplyDeleteF :-)©ked up
Insecure
Neurotic
Emotional
Sorry about the language, but it's true. You and in my thoughts and prayers daily. Love and hugs always.