When the truth derails your plans

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I had to make a very difficult phone call to my sister last weekend. I needed to discuss with her the possibility that myself and my son Oliver, might not make it back to the UK in May for a visit.

I was so nervous about this conversation and had been stewing on it for weeks, going back and forth in my mind between taking the trip and cancelling. These cerebral decisions were largely based on the type of day I’d had with my son!

Ironically enough, my sister was more understanding of the reasons why we might not make it and we ended up having a very meaningful conversation, peppered with my disappointed and shame filled tears.

There’s no doubt that the heart wants to make the trip. I haven’t been back to visit my family and country of birth for over six years and want to see the rolling green hills, breathe in the salty air of the channel and simply be in the vibe of my homeland.

The heart may be ready to fly but the reality of what such a trip would look like was made comfortingly real over the recent Christmas holidays. I don’t want to go into specific details, as I feel it’s disrespectful to my son, however what I will say is that the sensory seeking behaviour of a fast and strong, nearly seven year old, combined with my lack of resilience and energy is not conducive to an easeful trip.

I’m a sensitive soul who needs plenty of quiet time and time alone, especially so now that I’m parenting a child who is willful, strong and active. I am not the robust version of myself that I have always wished myself to be and it’s important to acknowledge my own challenges as much as my son’s.

The combination of these personal challenges added up to a reality check that took me though every step of the trip and it wasn’t pretty, it was certainly a far cry from the fantasies I’d had in my head. I imagined lining up for baggage check in with a runner, navigating strange toilets, trying to contain a firecracker on a long flight and then wondering how things might pan out on the other side.

Would I be able to relax, have a conversation, where would we be able to go, how would I entertain and feed my child, whilst trying to socialise with family and friends. Where would I find the time to catch my breath, retreat and recharge.

My thoughts may have landed on the worst case scenarios and of course solutions can be found but I know what daily life is like with the support of routine, school and familiarly, so in truth it wasn’t such a stretch to imagine life on the other side of the world. I just didn’t want to admit it wasn’t tinted with roses.

This hit of reality was a hard one to take, it was like a punch in the gut and I blamed myself for not feeling capable of taking on the journey. I felt weak and feeble, pathetic, incapable and ashamed. Other people do it, so why not me? I sought council before calling my sister, I wanted to be clear about what I was feeling, as I didn’t want to mess her about or send confusing messages about my conflict.

The therapist I spoke to was perfect, she helped me see the misalignment between my desire and the reality. She asked me why I kept trying to pull myself and my son into situations and expectations that we weren’t quite ready for, when the results were often such a disaster for us both.

I realised that it was because I wanted to belong and I wanted my son to as well. I wanted us both to be like other people, with normal lives, doing normal things. The realisation that this isn’t always possible created a feeling of real grief inside.

Since that session I’ve been able to reflect on that moment and conclude that I’ve not been 100% in alignment with the reality of my own capabilities and those of my sons over the last few years, which has only served to set us both up for failure time and again, as my expectations have been too high and I’ve been asking too much from us both.

These revelations of capacity were discussed with my sister and it was one of the most healing and comforting conversations I’ve had since Ollie was born. I finally felt like I was being real with myself and it felt so unbelievably liberating. I no longer had to hide behind a façade of coping, trying and failing.

Why am I sharing this intimate story with you, well because I hope that someone will read it and resonate with that façade and may feel inspired to drop it in favour of a more honest look at what life looks like and how to cope and thrive within it.

We all want to live what’s considered a “normal” life, we are encouraged to do so, to join in an and participate. We are especially celebratory of children and adults with Down syndrome who achieve things in mainstream life, so it’s understandable that mums and parents like me might feel ashamed when simple day to day tasks and pleasurable activities are a struggle to achieve. We rarely talk about it do we, preferring to battle on and keep trying.

I’m sure some of you reading this will know what if feels like to not have the strength to leave the house sometimes, because it’s just too hard, or made excuses not to go to a party or event, even the shops or local park. I wouldn’t want anyone to feel ashamed about that, or a failure because you’re not and neither is your child, it’s just circumstances and they can and will change over time and with the right intervention.

I’m going to try not going to compare myself with other parents or families at this time, that will only make me feel bad and stimulate a desire to fix myself and my son in order to be more like the parents and kids who do manage to do things that we currently struggle to do. I’m also not interested in other people’s advice, unless I ask for it, especially if the advice is “just go”. We will work this out as a family and whatever the outcome, it will be the right one for all of us.

I shall try and stay with my truth, his truth and know that it will change, that’s the one certainty in life and if one door closes because it’s not the right time, or not in the best interests of everyone involved, then another one will open that is more in alignment. These truths are not easy to accept and the desire to ignore and override them is tempting, especially when you want something so badly, like a trip overseas.

For now I will focus on the positive, what we CAN do and how rich and blessed are lives are in every single way. Never say never, just be in the now and who knows what magic and mystery awaits around the corner. It may not look like a regular person’s life and we may have to do things more slowly and in our own quirky way but if that’s what works for now and we’re happy and not feeling under pressure, well that’s all that really matters isn’t it?

Helen

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