One of those days…… and I’m thankful for it…

It’s Sunday. It’s always been an odd day for me, a dichotomy of not doing anything and not wanting to really either but also feeling that life was passing me by and everyone was doing something far more interesting/exciting/glamorous.

Growing up, I always wondered why, particularly in the winter months, we didn’t just DO SOMETHING far more exciting than going for a drive and if you were lucky, stopping for a Mr Whippy. The day seemed to yawn away from us with nothing very much happening and no one being particularly talkative.

Of course, fast forward more years than I care to remember and I realise now that my parents were exhausted from working all week, shopping, cooking, cleaning, laundry, school runs, the daily grind of life. I also realise how expensive it is to go out –  even just for a Mr Whippy.

Back “when I were a lass” (note the Northernisms starting to creep in…) we didn’t have the jungle gyms, soft play activity centres, swimming pools with water flumes or the cafe culture that we all appreciate now. A trip to the cinema was a luxury or special treat and not something to be expected. Don’t get me wrong, I am not doing the whole “you lot don’t know how good you have it” thing (something I particularly hate..GUILT…It’s not necessary or helpful!!) but life just was, well, different.

Having my own children and understanding that a) I am shattered at the end of the week and b) the hard earned pennies really don’t stretch very far, I do think we perhaps have become a culture that feels we HAVE to entertain our kids, each and every waking minute. That somehow a weekend is not complete or fulfilling if we haven’t signed them up to a gazillion extra curriculum activities, taken them to the latest must see/do extravaganza and spent quality time creating something that wouldn’t be sneered at in the Tate Modern out of our recycling.

However, today I am so very grateful for just another uneventful, lazy Sunday; a day where I could decide whether we should go out or not, eat ice-cream, watch movies or clutter up the kitchen with junk modelling in another boring, yet wonderful day. Why so thankful today? Because I woke up to the news that another SWAN  – syndrome without a name (SWAN UK | Syndromes Without A Name  …) child has died.

My daughter is a swan and this year our community has been devastated by the loss of 5 children already. My heart crumbled that little bit more to know that another parent would face such suffering and heart break. That another family would be united in grief and sadness.

As parents we make plans for our children’s future; they will have more, be more, do more than we did.  Watching our babies, we consider the future of schooling, achievements, sporting, musical or artistic prowess. We marvel at their tiny fingers and toes and sit in our bubble of contentment that we have created this, most wondrous life.  No parent should ever outlive their child. It is fundamentally, empirically wrong.

Each untimely death takes me personally back to when we first learned that all was not going to be as perfect as the dreams we had anticipated, when we weren’t sure about walking, talking or even reaching past certain birthdays.  It reminds me of days we were warned not to research or think too far about the future ahead. It takes me back to what I call Narnia – we opened a door to another world that we never even knew existed and threw us headlong into a life of variables, unknowns, therapies and sadness. But it also brought us compassion and hope and some of the very best friends we could know. A community, strength and knowledge.

Today, once again we SWAN parents all feel the cruelty of living with the unexplainable, the often untreatable and the unknown. The stark words too many of the SWAN families have heard from Doctors, specialists and consultants that have more place in their lives than their own families –  that their child has a life limiting condition  – just became that extra hard punch to the gut, a reminder that there but for the grace of God go they. A sickening thump over the head of reality that this could be  them in the future

It cannot help but wrench your heart, whether you are a parent of a medically/physically/emotionally compromised child or not. I know I am often told by friends and family that they couldn’t do what we do, they couldn’t deal with the medical uncertainty, the role of honorary, unpaid nurse, the one that holds their child down whilst doing or allowing someone else to do painful, frightening or uncomfortable things to their beloved son or daughter.

I am told often I am strong or brave but in reality I am not. I didn’t ask for this – who would? So I keep plodding on, one foot in front of the other, sitting in front of medical professionals and Dr Google or Dr Wiki trying my best to help my children. Hubby and I do our utmost to learn what will be useful, helpful or to the contrary, maybe in spite of what the medical bods are telling us. They may have the gilt framed certificate on their wall and the fancy title but they do not have a degree in our child so we will always do what we feel is for their very best – and the good Doctors will acknowledge this.

In my role as mother to kids with special needs, I am not more compassionate than you, I am not more capable of empathising, sympathising or experiencing of pain than any other parent.  I don’t even think you necessarily even have to be a parent to understand that this is the cruelest of life’s blows, although I do think that you can’t understand the strength of parental love and responsibility until you have children of your own to cherish.

But today when my children were fighting and grumbling and being “typical” kids, I would like to think I had just that little bit more patience, that little bit more gratitude and that little bit more love in my heart because of sadly learning again of the devastating loss of someone so young.

I would like to think that if I have learned anything over the years of being a special needs parent it is to be less judgemental, less worried about perfection, more concerned with what we have than the things we don’t; to appreciate the moment and live in the here and now, even if that moment is your child announcing loudly to the entire playground that the teacher has handed out a letter about nits and you told her we didn’t need one because Mummy had already treated your hair with a lotion that smelled disgusting and got rid of the bugs.

Those priceless moments when your little darling does something that makes you want the ground to open up and swallow you, they are all times that re-inforce the joy of life and all that it brings. Those Sundays where you are don’t do anything much and feel guilty for it, are all opportunities that some other family will never get back.

Tonight our SWAN message board will be filled with candles and pictures for those that have loved and lost and I dedicate this posting to all those facing their own battles, whatever they may be.

With love and affection,



Jelly tot consuming Mother of 4 kids, 1 cat, 2 dogs. Wife/leader in chief of our tribe. Autistic & medically complex kids keeping us entertained, on our toes & never bored...lover of all things sparkly, handbags & shoes. Proud to be a “difficult parent” in the world of SEND

1 comment

  1. Really love reading your blogs. You put into words a lot of my feelings and thoughts, something that is very difficult for me to do. Thank you.


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