Thursday

Uncle Jon and Robyn – the love story. Waking up in the house with the three of them that morning I could see how the last few days had been like Two Men and a Little Lady. Between Mark and Jon, Robyn was getting everything she needed, it was very cute. Jon is a dad to three girls and he was treating Robyn like she was his fourth; she got everything she needed before she even knew she wanted it! He carried her to the shop down the road to get our food, took her to the park, fed her, played games with her. I had no idea what Robyn had for her lunch, but Uncle Jon did. He made looking after her his number one priority and it was exactly what we needed, he was her constant that week. The next few days required Mark and I to be away from Robyn a bit more, and knowing she was safe and happy meant everything.

Mark went into the hospital first thing to be with Marty so I could spend a bit of time with her, we’d probably spent less than two hours together over the last couple of days (looking back now it felt like so much longer). Jon went to the pharmacy to pick up my prescriptions while Robyn and I got reacquainted playing together with her numerous ‘babies’. She absolutely bloody loved (and still does love) playing with dolls. It was pretty heart breaking timing, watching how much she would adore being a big sister, just hoping she would get to do it for real.

I also spent a fair amount of my morning trying to work out how to assemble the breast pump I’d been prescribed. I tried my hardest but my tolerance for this thing was pretty low so how it didn’t end up lobbed out of the window I don’t know! I wanted to spare poor Jon the awkward conversation but unfortunately for him it was breast pump discussion with your sister in law time. I was ready to roll in no time, and although I didn’t like doing it, it was good to feel like there was something I could actually do for Marty. Even if it was through a tube.

I headed into the hospital early afternoon to see Mark and Marty. From this day onwards we would be in this routine of tagging in and out with Robyn and Marty, racking up our Uber bills, getting lost in the hospital at night when exits where locked, delivering milk in a cool bag, playing with Robyn, cuddling Marty. Sleep, and repeat. I found it quite weird how easily I could move from one ‘mode’ to the other, it was like flicking a switch for me – playing and looking after Robyn one minute, to quietly treasuring each moment with Marty the next. Again, I tried not to overanalyse that too much and figured it was helpful I could do it.

Marty was in his own room now and it was so much nicer for us all, it was pretty big with a nice big window – although the shutters were closed most of the time so it wasn’t too bright for him. There were big elephants painted on the light yellow walls and his ‘Marty’ bunting had moved with him too. It felt more private, quieter, our own space to be together and make ourselves at home a bit.

It wasn’t long before the time came to talk to the doctor, it was the same man we’d spoken to on our first night in Nantes. We took the walk out of the ward and this time into his office, again joined by two nurses. My head was down, I could just tell what was coming but was willing it to be different.

What he said to us ended up being worse than either of us had expected. Marty’s bleed had continued, it was now on both sides of his brain. He would not be able to survive it and would probably only live for another two weeks at the most. It would likely come to a point where we needed to make the decision to ‘remove support’, and there were options for how we did this. The doctor told us to spend as much time holding him as we could and if we wanted family to come to meet him, now was the time.

Mark asked questions, checking there was absolutely nothing that could be done to help him, there wasn’t. We were devastated. We were just getting to know him and spend time with him, and now we were being told his fight was effectively over. He looked so perfect, it was hard to think what was going on inside his body. He’d been so strong and done so well, if it wasn’t for this bleed…I really thought he could be ok. Again, I struggle to explain to you how that felt. Shattering I guess. He was our little boy, and we were going to have to say goodbye to him.

Mark later said that one of the hardest parts of what we went through was that we did have hope, Marty had hope. We started to imagine our lives together, and then within two days all hope was taken away.

We went back to his room to be with him, how was this beautiful little thing not going to be staying with us?  Not going to be playing with Robyn? Not on our family holidays to France? He could give me sleepless nights until he was 18, I didn’t care, I just wanted him to stay with us.

From that point on we didn’t want Marty to be alone, we decided I would stay with him during the evening and Mark would then sleep at the hospital that night, the plan was to keep alternating. Mark left me with Marty and went to see Robyn. I still don’t know how he did it but on his way home he called all of our close family and told them what had happened – he could have just called our parents for them to share the news but he spoke to each of our siblings too. I knew I couldn’t say it out loud so I stuck to messages. Bit crap for the people receiving them but I just knew I couldn’t say the words. I still can't really. Mark was amazing all the way through at keeping people up to date with what was going on. We had a lot of people worried about us and feeling helpless, not being able to be with us, so we wanted to make sure they knew what was happening. After that call both of our parents started to make arrangements to come to France to meet their grandson. In reality I think they’d all been packed and ready since Monday but we held them off until we knew what we were dealing with.  

Turns out Mark had been busy on his walk home, he’d also bought a teddy elephant each for Robyn and Marty. He bought a brown bear for Robyn to give to Marty too, she took a liking to it though so he left her in bed that night with both the bear and elephant. How the hell was Mark thinking of all this thoughtful stuff?! I was very much in the here and now, day by day, decision by decision. The teddies might just be objects but we weren’t going to have the chance to make many special memories with our son, every small thought and moment counted now. That elephant and bear are now firmly part of Robyn’s ‘baby’ collection and regularly have their nappies changed, get put to bed and given a cup of tea. She should be doing all of this with her little brother, but we take some comfort in watching her do this instead, albeit always with a tinge of sadness. And Marty, he got to keep his elephant with him too.

That night I joined Robyn in bed with teddy and elephant, cuddling her that bit tighter. What was happening to us?

Follow @marty.matters on Instagram for more from Marty Matters.