A letter from Uncle Dave

While I was writing ‘It’s a Family Affair’ (my last blog post) it dawned on me that I didn’t know how it felt to be the people supporting us, the people grieving and missing their grandson, nephew, cousin. I thought it might be good to hear from someone else, someone else’s perspective on everything (bore off Jo!). So with a big thank you from me for writing this and letting me share it, here it is, what I’m calling “A letter from Uncle Dave”…

“Mark’s my little brother, has been since I was twelve and he was born.  We’ve been through humorous moments together, arguments, lots of family events.  I’ve always been Mark’s big brother, one of the three siblings that Mark can turn to for advice and support, the computer geek that used to help him rebuild his PC, the older brother that was working and so could spoil him come Christmas or Birthdays, the brother that used to pinch his favourite food when home from University, I like to think we have always been close.  We are a close knit family (across the extended family) and we still regularly all holiday together and love seeing all of the cousins running wild together.  I have three kids of my own, we were (we now see) incredibly lucky, we had babies “on demand”, when we wanted them and they have been healthy and a source of delight to my wife and I as well as their Uncles, Aunts and Grand Parents, something I now think we just took for granted. 

I remember Mark calling me with the news that Marty had arrived, I remember the conflict – “He’s got a son!”, “I’ve got a nephew!”, “He’s been born too soon”, “there are real concerns he might not make it”.  What do you say?  How do you say “Congratulations on your son” whilst also saying “I hope he’ll be OK” and “I’m sorry about the circumstances”.  When your brother is calling you and telling you that his Son might live or might die how can you be excited but also consoling.

I made a conscious decision, early on, that he had a son and I had a nephew and I was going to be pleased about that, I remember saying “Congratulations” and trying to be upbeat about Marty’s chances.  I tried to talk about a future that I was worried he wouldn’t have.  I remember planning to get across to France with my Parents, I was packed and at my Parent’s house ready to drive them to catch the ferry that same evening when Mark asked us to stand down and wait for a couple of days to see how things were panning out.  That was horrible, we wanted to help and support but not intrude, we wanted to be there but not in the way – Mark had, as he always does, made the right decision.

When the decision to go was made, and everything was arranged it seemed surreal to be taking the St Malo Ferry, a journey we make most summers as an extended family to holiday in France, but just the three of us.  A journey that would normally have us all excited and looking forward to a holiday together taking us to support Mark and Jo – but also to meet my Nephew.  We were still not sure of the outcome at this point, we were receiving good news and everything seemed really positive.  To be honest things always work out for us as a family, we have a history of snatching victory from the jaws of defeat and that is what my expectations were, this would just be “another family story” that we would tell and exaggerate time and again whilst telling Marty how much “trouble his birth had caused us”.

We arrived at the house, we did the mundane things, we loved seeing Robyn who could break the tension in an instant, we loved supporting Mark and Jo – whether that was through preparing food, running errands, giving lifts, anything that anyone could do that removed one more burden from them. 

The news turned from being hopeful to being a steady, slow stream of bad news.  Marty had a bleed on the brain, he would be disabled but no-one knew how badly, the chances of Marty making it were becoming steadily smaller.  The outcome was becoming more and more inevitable, it was now just a matter of time.  I remember going to the Hospital to meet Marty, sitting with my parents waiting to be collected by Mark, sitting outside Marty’s room whilst my brother took my parents in, not being able to sit down any longer – I was going to meet my nephew, my first nephew, my children’s first boy cousin I was genuinely excited to meet this little chap, but god how I wished for a different outcome.  I hated the fact that this was one we couldn’t fix or solve for Mark, I couldn’t even really share his grief and take some of it for him.

We walked into the room and he was there, he was beautiful, perfect but oh so small.   He had a tube in his nose that I really wanted to take out as it looked sore.  I cleaned my hands and reached in and touched his little cheek, his face was so soft.  Mark asked me not to stroke as they didn’t want to stimulate him, he and Jo were proud parents thinking of their little boy.  I remember telling him about his cousins, I remember crying with Mark over the things that we would have loved to do with him (I was going to teach him canoeing and kayaking!).  I had some cards and messages from his Cousins that I was able to leave with him.

What was so strange is that we were not grieving for someone we had known, we were grieving for the dreams and aspirations that could never come true.  We couldn’t say “remember when ……”, this little chap had come into the world, caused complete uproar in our lives, would be forever part of them, but would not be coming home with us it was unbearable.  How Mark and Jo coped with it I will never know.

That evening I had the worst phone call of my life, I hope that it remains so.  Mark called me whilst I was at the hotel to “chew the fat”, he told me that the doctors had told him that Marty was now in pain and that they needed Mark and Jo to consider withdrawing care.  How can you provide advice in that situation, what do you say?  I told Mark that he was Marty’s Dad, he could be Jo’s Husband and Robyn’s father another day, but that day he was Marty’s Dad and that he had to make all of his decisions in the best interests of Marty.  I felt so guilty, and it’s a conversation that still haunts me there was no good decisions or suggestions, no fix simple, hard or damn near impossible, nothing.  I remember apologising to Mark for being a blubbering mess, he said that he found it easier to cope when I was crying, someone was showing what Marty meant to us all and so he was able to get on with what he needed to do, from that point on I didn’t even try to hold it together – it wasn’t difficult I’ll admit.

After that everything was a blur really, god only knows what it was like for Mark and Jo, I remember them both going to spend the night with Marty whilst we collectively (Jon) looked after Robyn.  I remember us all sitting round the patio table outside when we received a text saying that Marty had gone to sleep one last time.  We had all know that it was inevitable, but that didn’t make it any easier.  We had to move to planning for a funeral, listening to Mark and Jo listening to songs – no-one should have to pick out songs for their children’s funeral, let alone a baby.  There were no good decisions to be made, just least bad, Mark and Jo had to plan a funeral that they wouldn’t spend a lifetime regretting and watching them prepare for that was so so difficult.

And then we came home, different days, different ways, I went back to my family and resumed the ordered chaos that is family life.  We tried to work out how we keep Marty a part of our family without him becoming a saint.  How and when do you speak to Mark and Jo about it all? How do you check that everything’s OK without interfering and upsetting everyone?  How do you show you care without turning them into “invalids”, how do you carry on when one of the family is missing at family events.  When we all get together now, I know that we all think that there should be a push chair that the cousins are fighting to push, Robyn should be arguing with her brother and pinching his ice cream.  We should be celebrating firsts, first steps, first words, first time he calls me his Favourite Uncle, we shouldn’t be missing something, that we simply never had, this badly.

I really don’t know how to help or what to do (Still!), does talking about Marty upset Jo and Mark needlessly? Does not talking about him hurt more?  Are they struggling and putting a brave face on or do we not worry about them enough?  No right answers here I’m afraid”