Making choices that make you feel ‘guilty’?

A couple of weeks ago we were delighted to be able to attend our niece, Rachel’s wedding. It took place at Black Walnut Venue near Omokoroa. It was a stunning day, she was a beautiful bride and the day was really special.

Josh and Rachel – photo taken by Erica Jane Photographer

Rachel had worked as a carer with Mitchell a few years ago while she was studying to be a Dietician at Auckland University and after she qualified her and Josh lived in Auckland, so we had been lucky to see them socially at more than the standard Christmas or family get togethers. When our invitation to the wedding was delivered I was grateful that Mitchell and Holly were invited along with Phil and I. I believe weddings are a special moment to share with your family and friends, and I was excited to be able to share in their day.

Because the wedding location was 2 1/2 hours away we were given plenty of notice, so we could book accommodation near the venue and get organised. Going away for a weekend with Mitchell, requires a LOT of planning. Mitchell requires 24/7 supervision including an overnight awake caregiver, continuous oxygen, multiple medications, regular sessions on an oscillating vest and all food to be pureed. Things have got easier since his trache was removed and he stopped using a ventilator, but apart from fitting our family and all the gear in the car with us, we need to transport and house the additional caregivers.

This is where the logistics get tricky.

Although we are a family of 2 adults and 2 children (now 15 years old), we have to travel with a minimum of 2 carers (day and night shifts). Mitch and Holly needing a room each, and we have to provide a private and quiet place to sleep for the night carer to sleep in the day, and the day carer to sleep at night. On previous excursions, we have booked one or two extra units, for the carers away from our place, but of course this comes at a cost. It gets expensive quickly.

Then there is the transport. We have a seven seater vehicle, but with our family plus 2, it leaves only a little space for luggage – of which we have a lot! This means two cars, which equals two sets of gas and two drivers.

Or we could choose to go without caregivers – for the daytime, we can manage UNLESS Mitchell gets unwell and can not attend, or he goes, but can’t manage to sit through 4 or 5 hours of vows, photos and speeches – in either case, one of us does not get to share in the wedding celebration. Plus if we stay up overnight or share the overnight, driving home tired is not a good idea.

For these reasons we started weighing up whether to take Mitchell or whether to attend without him. Would a 15 year old boy feel he was missing out not going to his cousins wedding? Would he want to sit through speeches and a meal he could not eat? Were we being selfish if we didn’t take him? And that is where it gets hard, if we say No, is it for our own benefit or his? I am grateful to our family, that we were all invited, so that this was our choice to make.

In the end, we made a hard choice to book a stay at the Wilson Centre for Mitchell and only take Holly. This was tough , we have and do include Mitchell in as much that is physically possible for him to manage. But, even after all of this deliberating, I felt guilty leaving him out when we RSVP’d that only 3 of us would attend. We went and he seemed happy having an extra stay at his usual respite option where he is surrounded by people and an environment he likes.

We had a good day out, and stayed with my Mum and Dad’s widow, Rachel, joined us there too. It was lovely to catch upwith her too.

During the day, which was a sunny and gorgeous day, I thought that the venue would actually have been a great spot for Mitchell. We were outdoors while the photos were being taken, there were some games for the kids (and adults) and it possibly would have gone okay. But, if it had been inside (due to rain), if he had been sick or the carer wasn’t there, it also could have been tricky.

I guess it is normal to guilt for leaving him out – but I also know that the situation could have unfolded very differently. At other family celebrations that we have all attended together, Mitchell can be overwhelmed by the amount of people and one of us will end up sitting in the car with him while the event carries on. I have to try and remember that, for whatever reason, he doesn’t always enjoy these events – whether it is the number of people, the different environment, or the alteration of routine. What he did miss, that he loves, is a long car drive, and that we can deliver another weekend.

For now, I just need to accept that there are times our whole family does not attend some events together. Plus, we were lucky that before Rachel and Josh got married and left for South America, that Rachel came and looked after Mitchell for a few days – he got to spend time with his cousin, his way. And for that I am grateful.


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