Tears

On Thursday I took this photo of myself. And as much as I’ve never been one to want to moan or expose the rubbish parts of my life on social media (or – let’s get really honest here- show an ugly photo of myself 😉) I promised when I started writing this blog, that I would try to always show you my truth. To help you understand the realities of having a child with special needs. And I know that by making it pretty I’m not showing a true and honest representation of what goes on in the real world. So, here it is….. this photo represents this week’s truth.

I’ve had a rubbish week.

This week has been hard. So so hard. And I’m tired. I’m tired of fighting so much for so long for all the different things my daughter needs to try and make her and our family’s lives better.

I feel exhausted with the constant fight.

And the reality is, David and I are only three and a half years into this fight. We have a whole lifetime of fighting ahead of us. How will we manage? Will we do her justice? We really can’t mess this up.

Will it ever get any better? Will it ever get any easier? Will the endless paperwork to get the services our daughter deserves ever end? Will we ever catch a break?

Will Amey – the contractor that runs service family accommodation for the military – ever comprehend that changing our daughter’s shitty nappy with the toilet door open and her legs poking out into the hallway (because there is not enough space) is unreasonable? That it is a breach of her human rights to be stripped of the dignity of having her toileting needs addressed in private? Especially as she gets older. Will they ever move us to the suitable housing on the next street that remains empty? Why does everything have to be about policies, process and money? Maybe I’m too naive. (I’m sure I’ll blog about the nightmare we are having with them another time).

Will we ever get a blue badge, a special needs buggy, appropriate level Disability Living Allowance for our girl so that her quality of life can improve? Will she get into the special needs school we are so desperate for her to attend? The process to get all these things is so long winded and time consuming. Why does it need to be so hard? I know we will get there – but it is all a fight.

And then, this week, I let myself go there….. will she ever talk to me? Ok, I know that might be a too far fetched dream….. but will she ever be able to communicate her wants and needs to me? Will she start signing? Or use picture exchange communication? Will I ever hear her say ‘mummy I love you’? Will she always have to wear a nappy? Will David and I still be changing her when she is an adult?

But I know I need to rein it in. I learnt early on in this journey that I have to stop my mind running away from me. It’s taken me to dark places in the past that I don’t want to visit again. I have to be brave and work towards our short term goals. I can’t let my mind wander or let my heart break. Worrying, crying and hating the world for being so difficult doesn’t change things, it just steals today’s happiness from me. And I love being happy. And I know that I am usually fairly good at holding it together and enjoying the little things in life that make it such a beautiful life to live. I don’t want to lose enjoying the little things because I’ve allowed myself to be overcome with fear of the big things. But….. sometimes it really is ok to let people know you’re not ok. And this week I haven’t been ok.

But – just putting it out there- surely there is an easier way for services to be given to those who need it? I’ve seen some real madness this week. I’d like to address some serious problems with the system – when I have some time and energy.

Because there is no denying that this is hard. It really is hard. And sleep deprivation is the absolute worst. I have to remind myself that I am dealing with some tricky stuff on very little sleep so no wonder it feels overwhelming at times. So on Thursday I gave myself permission to let the tears flow. I allowed myself time to grieve some very difficult truths. And cry about the injustice of the beurocracy surrounding being disabled. And luckily, I know that next week I will be ok again because – in spite of it all – I love life and I’ve got the most incredible husband supporting me. We really are blessed.

Anyway, enough of this week, I’ve promised myself that next week I’ll be back in the game, I’ll be back fighting after a quiet and chilled weekend with my Team L-D. My little world.

So here – once again- here is the truth. This week has sucked.

And I think for future weeks like this – because they will inevitably come my way again as we need to all remember that this is a journey that will have so many ups and downs – I need to invest in a decent waterproof mascara.

Big love to all the special needs parents out there working tirelessly behind the scenes to give their children what they deserve, the best possible life. Some days and weeks are harder than others, but we can do this. Because beyond everything, we have the most wonderful little people who are always worth fighting for 💪🏻