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It’s Hard to Explain…

It’s Hard to Explain…

We may not be through the global coronavirus pandemic, but in my part of the world anyway, lockdown has been lifted. To be honest though, while the freedom to go to open spaces has been so very welcomed, things never really felt hugely different. We were adhering to shielding guidelines as both myself and one of our triplets would be classed as “medically vulnerable”.

We watched as life continued relatively unchecked for a number of people, including members of our extended family.

They were able to visit and see us through the window, which at least felt a little more “normal” than the zoom meetings etc we also took part in. Due to the nature of my disability (Multiple Sclerosis, managed by an immunosuppressant) and my son’s (spina bifida, hydrocephalus and epilepsy) we are very often on the edges of normal life, so things didn’t really feel hugely new to our family. I have read a quote that I always feel so deeply, “From the outside looking in, it’s hard to understand. From the inside looking out, it’s hard to explain.” Let me try...

As I write this, my husband’s side of the family are all away on a trip away to southern Ireland. Ryan, me and the kids were invited, of course, but had to decline despite their best efforts to accommodate us. It turns out to have been the right decision as our son has just had to face a huge health crisis. His epilepsy is so easily triggered at the minute that we can’t even take him to the park without him becoming very distressed. What if we’d been due to go on holiday? That doesn’t mean we don’t feel sad that we’re the only ones not there, or that our children are missing out on those experiences with their family.

In all honesty, we’ve never been able to travel with the triplets.

It is just so difficult to even consider going on a trip because of the degree of planning that would need to go into it. How would we transport two adults, three children, a wheelchair (possibly two if I’m unwell!), protective sides for a bed, rescue medication, regular medication, catheters, nappies, AFO’s (ankle foot orthosis) on top of the standard luggage?!

Jacob also has a ventriculoperitoneal (VP) shunt for his hydrocephalus which has malfunctioned five times requiring emergency neurosurgery, so we need to consider if we are close to a hospital that could provide this. With his epilepsy being so unstable, we also need to know that we could transport him to a hospital if he went into “Non-Convulsive Status Epilepticus” (which is when he has persistent focal seizures of either type i.e. aware or unaware), which he has done several times. I also have bouts of extreme fatigue so planning a low energy trip with all those factors also in play is no easy task!

Ryan and I very genuinely don’t blame anyone for this situation.

People have every right to live their lives as they want to, including any holidays that may come up. We also do not blame our son for his disabilities and I know Ryan doesn’t lay any blame on me for having MS. Unfortunately, though, it does bring a degree of isolation that is so hard to explain to people who aren’t living it. In truth, even a simple day out can seem like an enormous task with the amount of additional things we have to consider. If we’re visiting a friend, for example, do they have a house that Jacob can get around in his wheelchair?

We do the very best we can to make sure we give our children happy memories, even if they are being made closer to home than most! I truly hope they look back and know that we tried everything we could, but sometimes it is just too hard to try and “keep up” with everyone else when we’re running a whole different race!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Katrina Dorrian

Meet Our Blogger

Hi! I'm Katrina, I have 6yr old triplets; one who has spina bifida, hydrocephalus and epilepsy. I also have MS, so we've a busy (but happy) house!

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