Where's Gramps? Explaining death.

07.07.2021

Last year on the 7th July my Dad died. He had been poorly with cancer for about four or five years but ended up dying from a chest infection after being in hospital for 10 days. My Mum, sister, brother and I were all fortunate enough to be allowed and able to go to the hospital and be by his side as he passed away.

I've never seen someone die before and I think that for all my remaining days, being with my Dad when he did will be one of the most raw, painful, surreal and unforgettable experiences I will ever have. But there's also a constant memory of a tender and loving moment. For me, it was a complete privilege that I was able to be there and hold his hand as he took his last breath. 

Yup, I went there...

With both Micah and Asher's disability I 'try' really hard to just take one day at a time. I have no idea what our/their life will look like in the future and even what they will be like as older boys or as men. Maybe it's fear. Maybe its denial. Maybe it's sensible to just take one day at a time. But I'll be honest,  as I sat next to my Dad, holding his hand, kissing his forehead, scanning around the cubicle at my mum, brother and sister, all of whom had a full and deep understanding of what was happening, all being sensitive to one another's feelings and emotions and all able to provide appropriate support to one another, my brain wandered for a few seconds...

What will this situation look like for Matt or I? One of us was in hospital in the future, about to die. Around our bed is Noah, Micah and Asher. Two of whom have a learning disability and whose understanding is different, whose empathy is different, and whose ability to support is different. How is that going to look for Matt or I, the one whose life carries on? How will that look for Noah, the only sibling without a learning disability? Yep, my brain went there and that was tough.

Managing.

A lot of the time with Micah I feel I am constantly trying to manage. Because of his learning disability I feel I am trying to manage and keep one step ahead of his behaviours, feelings, emotions, meltdowns, reactions, expectations, transitions, environments, sensory stuff etc. Trying to manage all of these things for everywhere we go and in whatever we do; at home, the park, the shops, at church, on holiday, on the way to and from school, in the car, at parties, at family and friends houses, regular events, one off events, celebrations, appointments etc. This is one of the things I find mentally exhausting and draining because I am having to try to think through, be prepared for and ideally stay calm for every eventuality. Managing before, during and after.

So yeah, I feel like in my head I think through and manage a lot of eventualities and realities but my Dad dying and then a funeral to plan and attend was not one of them...

Managing understanding of death or grief

Dad had been poorly for a few years and Micah was aware of this, but not really in detail. He just knew that Gramps was poorly and in hospital and we were to be gentle with Gramps especially with our hugs. Micah was also aware that sometimes Gramps got better and wasn't at hospital anymore - at these points, I felt like I had this one sorted :) But how do we explain to a child with a learning disability that Gramps has died?

My Dad was a Christian. He believed in God and that Jesus lived, died and rose again so that anyone who believes in him will have eternal life in heaven.

Matt and I are also Christians and so words like church, Jesus, God and heaven are familiar words to Micah. Words that Micah enjoys to hear, say and sing. We therefore explained that Gramps had died and he's with Jesus in heaven. We cant see him anymore but we will always remember him.

If Micah saw me crying and he asked why, we would simply repeat the above explanation. If Micah saw a of photo of Gramps and asked where he was, we would again simply repeat the above.

Now occasionally Micah might ask where Gramps is but he will quickly follow it with 'Gramps died, in Heaven with Jesus, yay!'

If my Mum comes to visit or video calls us, he will never ask her where's Gramps is. This would have been the first thing he would have asked before Dad died, so something has definitely clicked.

Managing a funeral

There were so many questions in my head when it came to thinking about Dad's funeral and how Micah would cope. When do we travel down - a few days before, or on the day? What will Micah be happy to  wear? On arriving, how do we get Micah out of the car well (this is a time of transition which Micah struggles with)? How will he react to being in a completely different kind of place? Where should we sit that would cause the least disruption for him but also for others? How will Micah cope with any waiting around before going in to the crematorium? What should we take to entertain Micah and Asher? How much food do we take for them to eat (eating is a real comfort especially for Micah so anytime we do or go somewhere new, food needs to be there)? How do we manage his emotions of being really excited to see some people, but also uncertainty around those he doesn't know? How do you even explain to him about the coffin?

So many questions around how Micah would simply 'get through' this unique event, without even thinking about how I would.

Managing worries

Was I worried that Micah would say something that most people would deem highly inappropriate, like 'butt cheeks' or 'where's Gramps'? Absolutely!

Was I worried that Micah would do something that most people would deem highly inappropriate? Absolutely!

Was I worried that Micah could have a huge melt down? Absolutely! 

Was I worried that Micah would be incredibly clingy to me and climb all over me like a climbing frame (he does this when he's anxious) whilst I'm trying to be fully present at my Dad's service? Absolutely!

So... how did it go? Did he say 'butt cheeks'?

My Dad's service was so lovely and we think it would have been a service that my Dad would have really loved! 

Micah and Asher both did incredibly well and this was helped by a few things...

• We arrived a few days before the service so Micah and Asher could acclimatise. 
• We took toys for them to play with.
• Our phones were fully charged for them to watch something.
• We took a packed lunch for them both to eat at any time throughout the service.
• The songs that Dad chose to be played, we played previously at home a lot of times so Micah was familiar with them.
• We referred to the Crematorium as a church as this is what Micah is familiar with.
• We accepted when they wanted to sit down, stand up, move around and stim.
• The service was kept to a real minimum of direct family, a few members of our extended family and a couple of dads close friends.

However, I think the two main factors that made Dad's service so good were without a doubt Matt and the rest of our family.

Yes, preparation and flexibility are key but for Matt to take on the responsibility of the boys and fully understand that he had to be their go to that day took an immense weight of my shoulders. 

Also, my Mum, sister and brother were without doubt 100% accepting of whatever may happen that day. Whatever Micah might have said or done, however odd and highly inappropriate it could have been, they get it. They understand. They accept. They love.

And no, no 'butt cheeks' were mentioned on this occasion.