Destiny is not the path that’s given to us, but the path that we choose for ourselves.
I’ve had two moments this week where the addition of a cartoon light bulb above my head would have been entirely appropriate. Certainly, the dustier parts of my brain were stunned enough to have any type of enlightenment that didn’t stem from a Grey’s Anatomy episode that they would have clubbed together and paid for some signage to pay homage to the event. One moment of clarity was thanks to a friend of mine who, when I had finished wiping the drool off my chin after having wafted about her gorgeous home imagining what my home could look like if I had half her style and a 16th of my children and animals, was telling me about her daughter and some issues she was having in school. I rolled off a few things that had been said about Elliot in case they were helpful (they weren’t) and so tried a few tit bits of special-needsy info that I thought could be useful (it wasn’t), and finally just shut the hell up and listened. It was a valuable lesson, because I got to hear the wisdom of someone who didn’t have their head so far up the wobbly bottom of special needs that all they could hear was “must…diagnosis…every…issue” being trumpeted out. Her speculation was a simple one, she wondered whether or not her daughter’s left handedness accounted for any of the issues going on, as after all, their brains work in a different way, so why should we expect them to necessarily conform to left-brain-right-hand’s definition of what is ‘normal’.
I must have been staring blankly at her for a few moments doing my best to raise eyebrows at appropriate moments and “uhuh” at opportune times as my brain fizzed and whirled into action. I made an imaginary heel of the hand slap itself on an imaginary forehead, oh course, why had it not even occurred to me. The evil genius come sweet, helpful stepford child that I lovingly refer to as Elliot, was left handed. He used a whole other side of the brain to me. How was I meant to understand someone who was just going to be so right-brained about life? Perhaps I could stop blaming the behaviour on him being utterly screwed up from his mother having abandoned him countless times to go and hang out in hospitals (it’s better to take the guilt from that than from simply bad parenting don’t you think?). Within minutes of having heard her theory, I was ready to gleefully prance and twirl my way to lay the blame, firmly and with suitable gravity, on the doorstep of Mr lefty, entirely satisfied that this could be the key to finally winning back one part of my life that parental guilt could no longer smugly stick out its tongue and waggle its fingers at my failings. I was more than ready to accept that the whole special needs deal (that our family had embraced with somewhat good grace and style) had rendered me incapable of thinking simply like a mother. Apparently so, or at least so I was convinced as I sat surrounded my the sort of family life that envelops you and soothes you into blurring edges of your life, just to beautify them a little.
There was a certain irony in my eagerness to dismiss myself as simply a blinkered parent of a special needs child, considering how many appointments I had sat in reminding doctors not to hold too much value in what my children are like for the purposes of diagnosing Dominic. As I tell them, I have nothing to compare it to, and had Dominic not come along, their relatively low energy approach to life would not have been significant to anything other than the development of perfect bum-sized indents on the sofa. This is our normal, and whether or not it is allowed to remain so, or it will eventually be tagged as a symptom remains to be seen.
Having walked away from the seductive calm of the life I’d always imagined myself living (back in the days when Barbie still acted out future lifestyle possibilities for me with Snoopy who’d never been the same since he’d been thrown up on one night) I had to admit to myself that as nice as it would be to have such an easy answer to Elliot’s complexities, it was unlikely to be more than perhaps one piece of the puzzle. I did however learn a lesson. I was reminded that sometimes you can be too close to something to be able to see it clearly, and that there is value in looking at my children as a stranger would. They are, after all a sum of their parts, and Elliot is overwhelmingly a sweet, helpful and caring child, and finding a way to help him understand himself and the experiences that cause so much inner conflict does not necessarily take a medical degree. It may be as simple as just understanding what it is that is normal for him, finding his reference point for life and putting a few road signs in to help him move towards the teenage years and the bumps and potholes along the way.
The other light bulb moment came courtesy of two separate bloggers. One who writes over on Lexilil.wordpress.com and wrote a very moving piece about losing her father as part of last week’s Define ‘Normal’ blog hop. The piece was a beautiful memoir of a man she obviously loved very much, but also the traumatic affect that his loss had on her, and the fact that she carries this pain every day. Now accepted that, whilst being an event that is unique to Lexilil, the understanding that painful events stay with you is not a particularly new one. It was not this idea that made me swallow harder that day though. As I read I reached a paragraph that made me hold my breath while I absorbed what she was saying;
And by now you’re probably wondering why I picked that day to share for define normal. That was not a normal day, not by a long stretch. I’ve had bad days before and since, but nothing like that. I’m not sharing it for sympathy, or for shock value, or to upset you. I’m sharing it because every day since then I’ve spent some part of my day back then. Inside my head, running through it. On a good day its a fleeting memory. On a bad day I get stuck there. That day has become a normal part of my day ever since.
The idea that something so far from what we understand as normal, such a raw and uncontrollable emotion, being a part of a normal day rather than a separate self contained entity, is something that I had never considered. I have alluded to having had similar experiences as Lexilil following a traumatic event in a few posts dotted around, either talking about how different we are (or are not) from you or in photos you might happen upon, but I have never tackled it head on. To be honest I don’t have the emotional energy and it’s something that I have to keep a fairly tight lid on for fear of being transported back to a much less happy place, and, even less desirable, dragging other people with me. The rather unfortunate side effect of this approach, effective as it is for the most part, is that occasionally it comes and punches me in so hard in the gut that the bruises can seem as real as the pain they are reminding me of. This happened with the second blog post that had a lasting effect on me recently.
Brent Ritterbusch was a little boy the same age as Dominic, whose mother I befriended a long time ago and whose journey I followed from the other side of an ocean. Brent died on 9th March 2012. On 30th March his mother wrote what has to be the bravest and most painful post I have ever read. When I read the astonishing, beautiful and heartbreaking account of his death it took me right back, and I haven’t really been able to fully return since. The shadow that whispers the what ifs to me constantly is back with a vengeance, turns the beautiful moments I am so, so lucky to have into prods of such pain that I want to vomit and the flashbacks float into view with no regard to how appropriate the timing is. When Jessica wrote about losing Brent she reminded me how lucky I am, she reminded me that I should value every moment. I recognise, honestly I do, the ridiculous paradox of feeling physically sickened instead of following the advice that you know rings so true. But I don’t feel like this because my child is here, amazing me, loving me and making my universe spin, but because he so nearly wasn’t, and I know the pain of saying goodbye. The contradiction of knowing how happy you should be, but accepting the fear and sadness at the memory of it is one of the hardest things I have tried to do. I remember, shortly after returning home, smiling, agreeing with people that yes, I must be so happy now he’s out of intensive care and that he’s proved the doctors wrong, but thinking that there was something wrong with me as I really felt that every shred of my world had fallen apart and that I was no longer capable of being truly happy again, the fear of having to face the giant wall of pain and emotion again overshadowed everything.
And yet, slowly, hidden away from everybody, I healed, but it has undoubtedly left a big ugly scar where my innocence used to be. I couldn’t take having a future for granted anymore and I couldn’t cope with the gaping chasm of grief that the thought of this opened. A while after it happened, because I knew one day it would be the right time to revisit it, I wrote what happened down, without stopping and without looking back and then did my best to forget. I got used to the flashbacks, as best you can and carried my scar around like the loneliest secret. It feels almost shameful that it still upsets me so much, like I am undermining the joy that my children bring me in a way that is insulting to those who have not been so lucky. I still see the look of shock on Roger’s face when the tears insist on falling at the mere thought of it months later, years later now. Any TV programme that involves any suggestion of the death of a child leaves us in silence, neither of us wanting to acknowledge the pain that we both know is still living with us. So yes, I know I am the luckiest person alive, but the pain, as those two women who are wiser than me have taught me, is now just my normal.
They say that life changing events change you for the better. But nothing healthy or good has emerged from coming so close to losing Dominic. It has broken me and scarred me. It just made me so very sad, so very scared and so very lonely. But finding my way out and learning to accept that I could never have my ignorance back, that once you have felt the pain of saying goodbye you can never win back the peace that other parents seem to take for granted all around you has become part of my journey. It’s something that has woven itself into the way I see the world, see my family and ultimately see myself. It is part of everything, so it is undoubtedly part of my normal daily life.
But this didn’t only happen to me. It happened to everyone that was part of our lives. The children were there, and had to say goodbye to their little brother, they were there when my life fell apart and watched me struggle to put it back together again. They went on their own journey and deal with their own pain. I wonder how scars like that shape what is normal for a child, define the way you deal with emotions, dictate how you see your worth in the world. How much is my pain and my fear a shared one, and how do you find out how much such things overshadow everything else when it is just someone else’s normal?
Unfortunately there are no signposts to follow and I have no idea where our road is going to go. There are no other families to look to for clues about whether or not the fear is justified, we just have to embrace our lives for what they are.We are, at the end of the day, a true sum of our parts. Each experience, remembered or not, playing a part of the giant jigsaw puzzle that makes up our opinions, likes and dislikes and understanding of the world. But the fact that the experience is still with me is not a testament to the fact that sadness and fear dominates our lives, exactly the opposite is true. I wake up each and every morning with the same choice you do. I can choose to wallow in self pity for the things that have caused me pain in my life and let fear of being hurt dictate how I interpret the world, or I can choose to be happy. My sadness over a memory and fear of ever having to experience the worst of pain again is just a part of my normal. In understanding that, I can accept that no amount of misery on my part will ever win me back the person I was before this happened, I am forever changed, and part of my journey is accepting that this is one of the jigsaw puzzle pieces that make me up, this is my new normal. The most important lesson I have learnt though is that by accepting it is part of who I am, is not the same as accepting that it controls me. Even though at times it can be hard to see beyond the present to embrace the future when there are so many question marks, I believe that I wake up each morning with a choice. I have chosen to try and understand the journey my family is on, to be open and honest about it and to not hide aspects of it that I don’t like. Yes the unknown is terrifying at times, a thousand times more so for having touched the pain that might lay ahead, but for some families, this really is normal family life. I would like to think that in writing this down I’m not simply showing you the moments in which my family tripped and fell down. What I’m showing you is that our true journey is the story of how we picked ourselves up, dusted ourselves off and carried on, even if there are more stumbles lying ahead of us. We may not choose much of what happens to us in life, but I do believe we chose the journey that we then let it take us on, and when we have no idea where we are going, we can do a lot worse than look to those around us and challenge, question and inspire ourselves along the way.
In memory of a beautiful little boy, whose journey ended too soon, Brent Ritterbusch 9th June 2006 – 9th March 2012
I have written this post as part of the Define Normal blog hop, where writers are coming together to show that normal is purely subjective and our unity as human beings lies in the fact that we are all unique. I have chosen to share the original post I wrote some years ago describing the events that I’m talking about in this post. I’m still not ready to read it through, so it is copied and shared here true to how it was originally posted. This post tells you a little about one piece of the jigsaw that makes up each and everyday of my normal life
If you want to join in and share your version of normal please feel free to link your blog post, photo, poem, picture or whatever you fancy below. You can of course leave a comment below if you want to join in and don’t own a blog yourself. You don’t have to do something especially for this blog hop, feel free to dust off an old post if you fancy. All that I ask is that you either share the linky list in your post, or link back to this one so everyone can see the posts that have been submitted. If you read other people’s posts, comment and let them know, and be sure to share the ones that you like. For more details about the Define Normal blog hop click here
Why not join in?
If you would like to join in the blog hop and tell us what your normal is like click on the link below and follow the instructions to add a link to your post. Please link back to this post or duplicate the linky in your post to make sure the entries get as many views as possible. Don’t forget to tell us all on twitter using #definenormal and feel free to post your link on my Facebook page once you’ve linked up!
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Once I manage to stop sobbing I will be retweeting and sharing this heart felt post. It hit every part of me. Sucker punched me and made me think.
This one hurts. xox Quinn is the same age; he turns 6 this month.
(The link to YOUR painful post is not working btw… probably since you moved things around in the directories?)
So moving. Been thinking of you xx
My fault, we were rushing out the door and I left the older posts in draft by mistake (I have to hand move them over). Should be working now?
Like you I have shared our journey with many children who are no longer here, I have been to too many funerals with small coffins and felt the range of emotions that only us “special” mums feel. I have sat at Daisy’s bedside and wondered is this the infection that is the one… yet she continues to defy the odds, and they are so stacked against her. For parents like us it really is, one day at a time and take time to smell the roses. I think it’s the gift that we are handed when we become parents of children like ours, the most intense emotions ever – fear, happiness, guilt…I cannot bear to take myself to that place which I know will come but I guess like all the other parents I have witnessed before me, I will survive…..the scars run deep though as you say, I found a picture of me the other day, before Daisy…I don’t look so happy these days. xxx PS – I’m left handed and so is Theo, explains it all xx
Thanks Steph, I appreciate you taking the time to comment, even though I know it’s a horrible subject to make yourself think about. You’re right about the intensity of the emotions, so much it’s unbearable at times.
I vow to learn more about left handedness, you right-brained people are fascinating!
Thank you x
Thank you for sharing this post. you know too how much The Fear can and does control me. I try not to let it and I write about it when I can. I am not strong enough to read your original post yet or to follow the link to Brent’s mum’s post. I will. Just not today. Thanks for being so brave and sharing this ‘normal’ element of your life. Like Rachel, I too will share when I have stopped crying.
Big, fat, chocolate covered hugs x
I’ve been lucky enough not to have experienced the death of a child that I knew. Smiley nearly died any number of times during her first few years, but somehow it made me stronger: I was so determined that she would live. And most children do ((hugs))
Yes, you’re right most children do live. I think I was always overwhelmed by the helplessness of it all. That no matter how determined I was such things are out of my control, and being an utter control freak when it comes to Dominic, it makes it a real worry bubbling away in the background.
Thanks for taking the time to comment x
This originally left me speechless, and, like others, crying. Thank you so much for sharing it. I consider myself incredibly lucky that my sons disabilities are in learning and communication and have minimal physical impact, I’ve never had to go through what your family have or what Brent’s family have, and so I can’t imagine how it feels, how or if I would cope. And yet it’s your normal, you face on a daily basis what I can’t imagine. I think you’re incredibly brave and strong, so often we hide the painful parts and present normal as nice and happy, but no family is nice and happy all the time, shit happens and part of our normal is how we deal with it. I think you deal with it well. I would never have had the impetus to face and acknowledge the painful flashbacks to my dads death as normal if it hadn’t been for your blog hop. I’d been burying them and struggling with them and just facing them and acknowledging them has helped me cope. Thank you for that, and I’m glad the thoughts you prompted in me also struck something in you. I’m whittering too much. Hugs & thanks & chocolate x
Sally, what can I say? I was so, so touched by your comment, thank you. And I’m really sorry to hear about your dad x
So feel for you and yours – if you ever need a hand I’m just up the road. Bell me any time and I’ll be there to support you or to give your other ones a right giggle even tho’ they don’t know me and will think I’m a nutter! So hope all works out well at GOSH. Big hugs xxxxxxx
@LucyHarvey thanks Lucy
thank you for sharing as we watched Brent’s health fell and fade we still held hope till the end he was always defining the odds and was a true hero and the strongest little fellow I’ve ever have known I’m not only saying this because he was/is my son but he truly changed hundreds if not thousands of people,doctor, nurse’s, families and friends that followed his story and life till the bitter end he is and always will be an inspiration life is never gonna be the same the hole that is in our hearts can and will never be filled the haunting questions of the what ifs and could of and should ofs it is just crushing and unexplainable and in reality I don’t think it would have changed much other then more pain and uncertainty, Brent was tried the smiles had faded and that little light in his eyes was gone and yet he remained strong until his little body just said no more but he fought a long long hard fight, Brent was a warrior,a fighter and my biggest hero,—BRENT,you will always be forever in our hearts, I love you little man
This was beautifully written and l am so glad l read this. My family and l have been through a lot over the past 1-2 years and it has changed us all for life. Sometimes l would think to myself that even if l could wave a magic wand and made everything like is was before l would never be the same person again. After reading this l don’t feel so bad about this fact any more. Again many thanks and best wishes to you and your family:)
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