It’s the most wonderful time of the year

For me, Christmas is a time for family, friends and gratitude. Family isn’t determined by blood and I could not be more grateful for the amazing people that surround us, who are there for us and support us daily.

Last Christmas was spent in hospital with a very, very poorly boy.  Naturally, it’s been a prominent memory in my mind the past couple of weeks and I keep replaying it wondering each time whether there was something we could have done differently or should have picked up on sooner.

Upon reflection, it was a pivotal point in our parenthood journey.  It acted as a catalyst for the current year we have had and everything it has brought along with it. That admission was the first time Oliver’s development was questioned and I prayed so hard that whatever was going on with him wouldn’t be neurological. Heart, lungs, limbs – anything but his brain. Yet here we are.

In retrospect, we went in with a very sick child and came home with a very sick child. His seizures had stopped and he was stable to a degree; but he wasn’t the Oliver we knew or had anticipated throughout pregnancy.  It was the first time his needs became real and were much more than just a hunch or intuition.

So, we’re slowly adapting to life with Oliver not developing how we had imagined. Our calendar is full with appointments and our house cluttered with his aids. Regularly I envisage myself throwing them out the window, or better yet, him throwing him out the window – but hey, they’re a necessity so we’ll manage.

He was admitted to hospital last month and was really, really poorly. It was the worst we have ever seen him (which says a lot) and surfaced a whole new world of uncertainty, frustration and more questions that have been left unanswered.  We’ve pushed it to one side for now and will tackle everything in the New Year.

Oliver is loving pre-school. He only goes for an hour and a half a week with his Dad but he’s a very popular lad (that’s my boy). He often takes a pew on the bean bag acting like a King when he’s not thrashing about in the swimming pool. He’s also got himself a new wheelchair/pram which is the most amazing piece of equipment we have had yet. He is supported extremely well in it and can sit up at a table with us which is lovely. For me, it’s nifty and not at all as bulky or unmanageable as I thought it would be.

We took him to see Father Christmas last week. I could lie and say he absolutely loved it and was bursting with excitement, but he doesn’t have a clue what planet he’s on 90% of the time and this was no exception. He did, however, adore the Christmas light display and would have been quite happily hypnotised by it all evening.

It was a wonderful family experience and something we definitely didn’t take for granted given our circumstance. Nevertheless, it was also extremely bittersweet. I don’t know if it’s just us or if other parents who have children with special needs have that voice in the back of their head that just can’t be silenced.

‘It was lovely …. but he really should’ve been walking and talking.’  ‘It was great … but he really should’ve been excited’

‘That was fantastic … but …’

There’s always a ‘but’ and I hate myself for it. I am so conscious of treasuring every moment we spend together. This time last year I would have given absolutely anything to be at home with him, experiencing Christmas how it should be, so I really need that ‘but’ voice to pipe down.

Unsurprisingly, we’re taking a different path in life and that’s fine. I am also realising that it’s fine for us to take some time getting used to it. Inevitably, I do feel guilty when that ‘but’ voice creeps in but I suppose it’s natural and I’m sure there will be plenty more first experiences that we envisaged playing out extremely differently. Some we will be prepared for and others may catch us off guard, but we will adapt and remember to be thankful for every opportunity that comes our way.

This time last year I was whole heartedly petrified of the unknown and the threat that there ‘might have’ been a problem with Oliver’s brain. I couldn’t even contemplate it at the time and chose to ignore what was right in front of me. This Christmas isn’t what I thought it would be, but it was the best Christmas we have ever had. Our day was spent with our nearest and dearest, love, laughter and most importantly, our handsome, happy, quirky little boy.

9 Comments

  1. December 28, 2017 / 8:26 pm

    So beautifully written. Super pleased you got to spend Christmas at home this year. Please don’t apologize for thinking ‘but’. We all do it, for all different reasons and situations, every day in life.

  2. December 28, 2017 / 8:40 pm

    It’s natural to say “but this is how it should be” when it comes to so many things in life, especially during the holidays. I can’t count how many times I’ve wished my dad was still with us or a million other things in my life were different. All we can do is live with the hand we are dealt and do the best we can! I would have to say from the look on your sons face you are doing a great job raising him and he’s a lucky boy to have you!
    Thank you for sharing your life with the rest of us, it’s inspiring to see how others deal with difficulties in life and makes it easier for me personally.

  3. December 28, 2017 / 11:28 pm

    It can be so hard when you realize that the life you had planned for your child isn’t going to pan out. Stay strong and focus on the good. And it’s ok to be sad sometimes, too.

  4. December 29, 2017 / 12:39 am

    You made me feel everything you were/are feeling. I think it would be unusual for you to NOT think of the “buts”. It can be overwhelming to think of all the things there are to be thankful for, when sometimes the things we wish we didn’t have to deal with are hanging so largely over our head. I am so glad that your holiday this year was better. And Oh My Goodness, what an adorable elf!

  5. December 29, 2017 / 5:08 pm

    It would be unusual to never have those “but” thoughts. I have them too with my daughter sometimes. It has taken about 10 years but they do get fewer and farther between.

  6. ErykA
    January 22, 2018 / 12:35 am

    awe I love the Christmas light display as well! What a magical experience

  7. January 22, 2018 / 12:57 am

    My heart goes out to you. I could feel your bittersweet emotions in your words. I understand those “but” moments. Thank you for your words. I know your honesty and beautiful words will help other moms going through similar experiences.

  8. January 22, 2018 / 2:13 am

    Never feel guilty for the “but” thoughts or wishing for a “normal” life for your child. You are allowed to have those feelings and it is completely normal. The love you feel for your son was evident throughout the entire article and that’s what is most important… the love.

  9. January 23, 2018 / 3:52 am

    It’s hard to find peace and joy with what you have, for everything, I think we all are guilty of this. I’m working on this too. Enjoying what I have instead of enjoying what could or should be.

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