Where to begin. These past few months have been tough. That’s probably beyond an understatement, but sometimes I can’t find the words to describe just how challenging our ‘everyday’ can be at times.

autumn olbyOliver’s growing up, becoming a ‘big boy’; and a handsome one at that. Physically he is changing more than ever, however mentally, not so much.

Naturally, as he’s getting older the gap is only becoming wider and more prominent between ‘normal’ kids and himself; and to some extent even ‘special’ kids and himself. Which is fine (isn’t it?), it’s the expectation we’ve been lowering adjusting ourselves to for a while now.

I am trying so hard not to be negative (honestly) and look on the bright side. We are so incredibly thankful that he finally seems to be growing more resilient to infections and that he has managed almost a year without an acute admission. But, no matter how much I try to outweigh the negatives with positives, sometimes I feel that I am fighting a battle instead of preparing for a war.

If I am constantly pressuring myself to spin every negative into a positive I can never truly mourn the childhood Oliver should have had.

walking olby
There is no doubt that our lives are becoming slightly more complicated, that the mundane ‘everyday’ is becoming tiresome and more testing.

If I’m not consumed by the guilt of working full time instead of being with Oliver I’m exhausted from fighting to keep the next ‘thing’ out that’s waiting to swoop in and take its place.

I’m beginning to realise that coping with something and busying yourself with everything other than what you should be focussing on are two very different things. Sometimes I become so wrapped up in convincing everyone else that I’m ‘ok’ that I begin to fool myself.

I can pretend that my mind isn’t depleted daily by desperate fantasies of a world that Oliver can access, that my soul isn’t crushed by my sheer despair at wanting things to just magic themselves better; that I’m fine and that my heart isn’t heavy with the tears I refuse to cry.

I am truly, utterly, unconditionally hopelessly devoted to Oliver. Just as any parent should be to their child. Frankly, I don’t think there is anything more I could be doing for him, and if there was I would do it without hesitation. But sometimes, I can’t help but wonder if some of my efforts are in vain.

i amable

Generally, Oliver loves life. He is the happiest, most innocent little soul who is unaware of just how cruel the world can be. Despite his blissful ignorance, it’s beginning to dawn on me just how little he can do for himself.  If he didn’t have us he wouldn’t have anything; and sometimes that thought becomes too unbearable to fathom.

He still can’t hold a milk bottle or feed himself, he can’t go and play with his toys independently. He can’t pester us to wake up in the morning and take him to a park. He can’t make friends, he can’t hug us, he can’t verbalise how he’s feeling. He can’t sit independently nor stand. He can’t crawl or walk. He can’t dress himself. He can’t have a tantrum. He can’t make choices. He can’t discover a passion. He can’t love us the way we yearn to be loved.

He can’t …

The list goes on and we’re under no illusion that as the months go by it may become more extensive. And yes, disregarding that list there is lots he can do but for every ‘can’ there are a hundred ‘can’ts’ and for every ‘can’t’ there are a thousand ‘mights’. It’s a ruthless, maddening, vicious cycle that we struggle to escape at times.

bandwolbs
Ultimately, no matter how much I do for him it will never be enough. I will always feel that he has been robbed of a life that he was destined for. A life where he has the autonomy to forge his own path. To entertain his own wants, have his own ambitions and desires and fulfil them in his own way. He deserves normality, he deserves independence and he deserves, more than anything, a childhood.

The past two years have been an explosion of fear, shock, exhaustion and uncertainty and when I take the time to reflect on our journey of parenting thus far I have no idea how we’re still here.

I suppose it’s beginning to simmer down to the fact we’re starting the transition to being noticeably ‘different’, noticeably ‘special’ and I’m not too sure how I feel about it.