You and I have only been friends a reasonably short time but we have shared so much, have loads in common and become quite close, It feels like we’ve known each other for years.
And I hate the fact that we now have another thing in common.
I hate that there are no words. No words that I could speak that would lessen the pain. There is nothing I could do that would ease the ache in your heart and I want to take away the fog that has probably started to descend on you right now. I hate that fog. It’s overwhelming, all-consuming and like a tonne of bricks has been heaped onto your shoulders.
I pray for the enveloping peace of God to cover you and your family now. That you would allow Him to take that burden from you.
There is so much to organise, to plan and to deal with and friend, I want you to know that I am here. I am here when you want to scream, when you want to cry or even if you just want to sit in silence.
I am still here even if you want to shut down and hibernate for a while: But please know that doesn’t mean I will stop checking on you. I will watch you closely but only because I care.
I promise not to be one of those friends that says “Call me if you need anything” as a flippant throw away line with good intentions, because let’s face it: You won’t call. No one ever does. We all hate to have to ask for help. It’s how we are. Instead, I will bless you un-expectantly because you deserve to be looked after.
I also promise not to avoid you like so many people do out of fear of causing offence. To steal a line from another close friend: I come with an apology: I may not always say the right things, I probably won’t always have the right words and I often put my foot in my mouth but I won’t carry on as though there in an elephant in the room that nobody wants to mention.
And in the words of one of my favourite songwriters Neil Finn in Distant Sun:
I don’t pretend to know what you want
But I offer love…..
Love Me x
And the line I’m talking about is the one between sharing too much online and sharing just enough. And to do this all whilst still maintaining my integrity and that of my family. It’s a tricky concept for me because I’m naturally a very open person and I’ve really had to allow God to guide me in this area.
My natural instinct is to blurt out exactly what’s on my mind and then go back and mend fences later. Sounds ridiculous I know but I have only in recent years been able to recognise that split second moment between using wisdom and having a verbal diarrhea moment!
I am a lot wiser nowadays but apart from using my children’s real names and our exact location, I do try to share anything that may be helpful to another family if only to show them that they are not alone.
Because here’s the thing: When I first started out on this journey…..I had no-one to tell me what was ‘normal’ in ASD world or what to expect in the coming days, months and years and really honestly felt like I wasn’t going to make it. So I started googling and searching and finding other blogs, and realising that we weren’t the only parents ready to tear their hair out frequently.
And we weren’t the only parents who have forgotten what’s it’s like to sleep uninterrupted through the night and we certainly aren’t the only parents who would give anything for their child to just make a damn friend!
But imagine if everyone who had written these blogs had decided that they weren’t going to tell it like it really is? Imagine if they only wrote what they thought would make people comfortable and that which paints a picture of the perfect family all sailing along beautifully. Imagine if they had drawn their line a lot closer to “need to know” and far away from their honest realities.
Wouldn’t I feel like total crap then?!
It’s through relating to another person’s experiences and THEN seeing them come out the other side that we are encouraged.
I rejoice with my bloggy friends when they experience a breakthrough but I also cry with them when they are in the midst of hard times. It’s that balance of difficulties and progress that keeps drawing me back to my friend’s blogs time and time again. Because I can relate.
And she’s absolutely right! ALL kids have days like that it’s true. But where she got it completely wrong was assuming that we think that we own bad days.
We don’t think that we deserve your pity or sympathy any more than any other parent, but we do have more experience in dealing with these types of situations simply because we deal with them a lot more often.
Buy what I actually think is that whether you’re parenting 1 child or 7 children, whether you have boys, girls, typically developing or children with special needs – it doesn’t matter….parenting is rough!
But her comment to me was said in a derogatory tone that really threw me so I didn’t respond to her at all but walked away and came home and picked it apart in my head for hours.
I wondered if she is hurting herself as a mother and feeling overwhelmed and unappreciated? I wondered if she wanted someone to reach out to her and she didn’t know how to ask for help so she just launched into attack mode? It may have been the only thing that occurred to her at the time?
Either way – I’ve had enough time to process this now and try to see the situation from her shoes and I’ve got to say – it all looks very different now to how it did on Friday.
That means that 126 people are also travelling down a parallel road to us and understand exactly what it is like to live in this house. That’s 126 people that can relate to our ups and downs and that’s really REALLY humbling for me!
But this train of thought brings me back to the mother in the playground on Friday.
You see – I’ve been on Facebook (partly why I quit for now), I’ve mixed in mother’s groups and I’ve stood around and observed body language and facial expressions on groups of mothers as they interact with each other. And frankly – It’s all a big competition.
Not many women will ever dare to show their true colours to their friends. It is an unspoken rule that to show weakness is unacceptable and puts a target on your head.
I learned a new phrase by Pastor Steven Furtick at our bible study this week that has REALLY helped me to understand this concept better and has challenged me in a really good way!
“The reason we struggle with insecurity is because we compare our behind-the-scenes with everyone else’s highlight reel”
And that is EXACTLY why I will continue to write about our life as it really is.
Have a great weekend all xx
I love this photograph. It is framed and displayed in a special place in our home.
It was taken back in April 1998 at my parent’s house. We had just announced our engagement and we had the whole world at our feet.
The photo makes me smile because it shows Paul’s discomfort in having his photograph taken and his stiffness and forced smile for the camera. Right after this was taken he picked me up and swung me around but this is a side of him that he rarely shows to the world lest they judge his childlike character. But that’s what I fell in love with
In this photo I am clearly besotted and blissfully happy. The photo represents so many different things to me: It represents true young love with no strings attached. It represents the beginning of a brand new chapter and it represents ignorant bliss.
I remember going to pre-marital counseling with the Pastor before we walked down the aisle and being asked the ‘hard’ questions.
- Like: What would happen if one of us were injured therefore requiring the other to become a full-time carer?
- How would we handle it if it turned out that we were unable to have children?
- Would our marriage survive having a disabled child or would we allow it to take a toll on our union?
It’s almost funny to remember those questions now because they were almost prophetic. Paul did have to become my carer for a while after the brain surgery and as you all know, although I refuse to see my children as ‘disabled’ we definitely fit neatly into the category of ‘parents with special needs children’.
And here’s where the blog post takes a slight turn away from the direction you’re probably all expecting it to…. Because whilst our marriage isn’t exactly on the rocks: having children with higher than average needs has certainly taken its toll on our union.
We are ok but neither of us is bursting with enthusiasm or over-the-top mushy love right now. We are just ok. I often think back to those early days sitting on the Pastor’s couch listening to him talk about those possible scenarios and I remember thinking ‘that will never be us. We will always be this strong.’
But despite this feeling I had of being bulletproof, (and if I were being completely truthful with myself) : if someone had have told us back then that we would have two children on the autistic spectrum, it probably would have shattered me.
And please don’t get me wrong here: I’m not saying that if I had the choice that I would have opted not to have my boys because that is 100% untrue. My feelings on this are NOT related to not wanting to have “different” children but instead more of a reflection on my lack of faith in my own parenting skills and capabilities
I didn’t think I had it in me to pull this off.
But that’s why we are not shown everything that our futures hold too soon. God knows that we can only handle so much and that’s why things unfold gradually and He strengthens us, as we need it.
There has been a lot of water under the bridge since that photo was taken. This photo below shows something more accurate. These days we are exhausted and spent.
Autism has gripped us with fear at times and taken huge chunks of our motivation and drive with it. We are both exhausted mentally, physically and emotionally.
And that’s why we have decided to go away and have a break. A recharge, a change of scenery and some much needed child-free together time.
My beautiful Mum has agreed to have the children for seven whole nights and we really do know how incredibly fortunate we are to have this opportunity. I know that there are so many other families that also desperately need a break too but are unable for several reasons to make it happen.
To all of my single mother friends – you guys are incredible. To all my friends with partners who are always away – you have my prayers too, to my mother friends who have to work outside the home for whatever reason – I take my hat off to you and your massive sacrifices and as much as I feel bad that I do have a chance to go away and recouperate and many of you don’t – I have to take this break because I know that we can’t continue to go on this way.
We are going to an undisclosed location so that we can really escape. We can’t wait to go out to eat without a social story in place. To browse around markets and shopping centres without having to have a set time limit and to have leisurely strolls just.because.we.can.
To be able to sleep through the night without a child wandering in at ridiculous hours and to do whatever the hell we want whenever the hell we want to.
We are going to the wonderful place in the screen shot below:
But I’m not revealing the location or actual time that we are going away until after we return home again in a attempt to protect my family.
I promise to write all about it on our return and I pray that you all have a fabulous week.
Love Fiona xx