January Blues

Well, what a start to 2018! To be honest, I haven’t been able to catch my breath and cannot believe we are almost at the end of January already.

That feels like such an adult thing to say, you know when people comment on the weather or ‘I don’t know where the time goes’ But seriously – where does it go!? I mean, I haven’t even properly begun my pathetic attempt at a diet yet, let alone found a moment to berate myself over failed New Year Resolutions.

I am feeling really positive about this year. I’m way past the whole ‘New year, New me’ crap but am actively trying to have a less cynical outlook on life in general (ever the pessimist).IMG_2102

In hindsight, last year was a total bloody nightmare. Our lives were turned upside down and at times unrecognisable, woeful and incredibly scary. There were numerous occasions where I questioned my capability of parenting and being a functioning human in general.

Therefore, this year my mantra was is to be as positive, happy and optimistic as one can be. I was under no illusion that we would be put into challenging and somewhat daunting situations; I just didn’t anticipate quite how soon it would happen.

When it rains, it pours and oh my have we had a flood and a half.

Amongst other pressures which are too complicated to get into at the moment, Oliver decided he needed another hospital admission for the better part of two weeks.

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Far too often I mistake familiarity for comfort.  I have to come to terms with the fact that it will never get any easier seeing him unwell. He deteriorates so rapidly and I always worry whether it’s the start of something far more serious than an acute illness on top of his other needs.

Nevertheless, having to constantly fight my sons’ corner is growing tiresome. I don’t begrudge it; at all. It’s my job and duty as a parent. To fight for him, to protect him, to shelter him. It just never fails to surprise me how often I am challenging the very people who are supposed to be working with me and not against me.

Medical professionals are exceptional. Seriously, I am more grateful to them than they will ever know. But … why, oh why won’t they listen to me? My child is medically fragile with a range of complexities. I know him. I know what he needs. I know what will get him better 99% of the time. If they would just listen to me and take my advice into their considerations he could be on the road to recovery a lot sooner.

Don’t get me wrong, I really am not one of these parents who think they know everything and disregard Doctors’ knowledge and expertise. I’m a reasonable gal. I am always willing to have an open and honest discussion about Oliver’s illnesses. They can be as blunt as they wish – I would rather know the ‘nitty gritty’ bits than live in blissful ignorance, no matter how appealing it may appear.

But, when he is being admitted for the umpteenth time with similar symptoms to previous admissions – please, oh please, just listen to me! Do the x-rays, take the bloods, get him hooked up to Vapotherm or CPAP or whatever it is he needs this time. Because the longer they wait for different professionals to come and assess him or give their opinion – he’s worsening, he’s deteriorating and he’s suffering.

And – it’s not bloody fair. Because ultimately, they go through all of these motions and inevitably their course of treatment is exactly what I initially suggested …

This most recent time I found myself becoming increasingly frustrated, not least because I am having to chase anyone and everyone for answers, but for him. For the pain that he’s in, for his inability to comprehend what is happening and for not being able to comfort and console him when he needs it so desperately.

It is always draining seeing Oliver unwell enough to require hospital care. Nonetheless, the added stress and uncertainty of whether he is being cared for properly is sometimes too much to cope with.

The Nurses on the ward are all incredibly lovely caring people, but there were a couple of days where my patience was tested. Oliver’s care was less than adequate and in all honesty quite sloppy.

I understand that there are staffing and funding pressures. I am more than respectful and patient when it comes to his care as I know their capacity is stretched with the current demand.   On the contrary, at the very least, I expect basic care to be followed through and will not apologise nor concede this expectation.IMG_1995

More frequently, I am finding there is a limit to my own patience. It’s a fine balance between being compassionate towards the daily pressures staff face but also appropriately advocating for my sons’ needs. Recently, I have discovered that you have to be ‘not so understanding’ sometimes in order to achieve the best care possible.

This is in itself is exhausting. I don’t want to be a dragon, I don’t want to be difficult. I want to say ‘It’s okay, it doesn’t matter’ and sometimes I do; after all they’re only human. But, other times it does matter; it really matters. He is precious, he is my everything, he is complicated and he deserves their undivided care and attention. He deserves to be a priority and he deserves to be cared for competently.

Oliver being admitted should not be an occasion where I have to fight for him. It should be a time where I can solely focus on being a Mother, become estranged to the medical jargon and plead ignorance. It should be a time where I have nothing else to focus on other than being a parent.

Thankfully, Oliver is now at home safe and well, we just have routine appointments and procedures planned for the immediate future. Hopefully, he won’t give us any more surprises!

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Oh, the irony. I’ve basically just moaned after talking about what a positive outlook I was going to have this year.

I guess I’ll blame it on the ‘January Blues’ and can only hope that the rest of the year will bring more answers, positivity, fewer obstacles and considerably less stress …

 

 

 

 

5 Comments

  1. January 29, 2018 / 8:21 pm

    Sounds like a rough situation. My brother is autistic and had a lot of needs, and his needs would effect everyone else’s well being in our family. There were times when my mom had to really push for getting therapy, or a medical trail and other services. Not just for my brother, but for everyone else as well.

  2. January 30, 2018 / 4:11 am

    Oliver is so lucky to have you as his mother, out there fighting for him every day. I can imagine it is exhausting. I hope the new year improves for you and that you can put the January blues behind you.

  3. January 30, 2018 / 6:45 pm

    So sorry that you have to go through this, but you sound like you are an amazing mommy. Praying for you and your sweet boy.

  4. January 30, 2018 / 9:49 pm

    I hope February brings you good things. It can be so hard maintaining a positive mindset.

  5. February 1, 2018 / 8:53 pm

    I can’t imagine what you are going through. Being a mother is often a thankless job. Your strength and dedication to your child is admirable.

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