Hopelessly Devoted

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.

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.


  1. Claire
    December 14, 2018 / 9:32 pm

    Beautifully written post. We are at the beginning of what may be a similar journey to you (son 7 months old with white matter abnormalities, developmental delay but no diagnosis yet). It’s so hard as the older they get the more apparent the differences to other children become. But as you say as parents we will do everything we can. Oliver is just gorgeous and a credit to you. I’ve enjoyed reading your posts and being able to relate to someone who has been through similar to what we are.

    • Mummabear
      December 15, 2018 / 8:27 am

      Aw thank you, that means a lot. I’m so pleased that you can relate. I think it’s difficult to really get unless you’re going through something similar. I hope you manage to get some answers soon for your little one xx

  2. Joanne
    February 9, 2019 / 9:29 pm

    Thank you for writing this blog. My son was born May 2016 and while able bodied is likely to be autistic and I’m finding it very hard to come to terms with what I envisaged, hoped for him to not be the case. I have good and bad days and weeks. I agree the older he’s getting the harder it is to see the differences between him and his peers.

    Oliver is absolutely gorgeous, what a handsome boy. And the photos you take of him are really lovely.

    You and your partner seem to be doing a fantastic job for Oliver.

    • Mummabear
      February 10, 2019 / 11:09 am

      Aww thank you; that means a lot.
      I know how you feel; the bad days can be bad. I suppose we just have to remember to take it a day at time. Sending you and your son lots of love. Xx

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