Falling apart while being held together

I’m not sure if that title really makes sense but it sure feels like my life at the moment. While my life falls apart as my husband lies in hospital, I’m finding the most incredible support from the people around me. I’m so grateful, in the midst of tragedy, how I’m being lifted up and held together by a lot of very special people.

I’m also finding that inanimate objects are mirroring what is going on in my life in a very telling way.

A few weeks back soon after the stroke I saw something at the bottom of the laundry basket. I pulled it out slowly, trying to figure out what it was. It looked like Brett’s favourite rugby jersey. He loves that jersey. He is a huge rugby supporter. But as I looked at it more closely I saw it was ripped apart. It really made me angry. Until my mom mentioned that was what he was wearing when he had the stroke. That the staff in casualty would have cut it open to save his life.

This did put things into perspective but I was still very sad about this item of clothing that means so much to my husband. So, I had an idea to make it into a cape. My mom sewed it together. It’s something to drape around my shoulders at night to keep warm and remind myself of him.

My mom is being the one to put the pieces together again. More than that actually. Just her presence is making things more manageable. She’s taking care of Nicky, she’s washing dishes, and she’s giving me a good dose of love. I think my life at the moment would be a lot harder if it wasn’t for her.

The other thing that happened is that my phone died. A week back a new battery solved the problem. At the same time Brett’s phone was giving issues but I didn’t want to reboot it as I didn’t know the code for the sim. I went over to Vodacom.

I think God was really watching over me because the lady I sat down at and told the problem to at Vodacom was very sympathetic. Her husband had passed away due to kidney failure a few years ago. When she had two kids, the youngest being 18 months, and no job. She had to go out there and find work on her own while supporting her kids. She was really helpful and did a sim swap so that if I did need to reboot again I would at least know the code. And she told me there was just one month of the contract left.

I know there’s a reason why our paths crossed. To put things into perspective again. At least I have a job. At least there is some kind of disability benefit. At least I have my mom. I’m not totally on my own.

But then on Tuesday night my phone died for real. I took it to the same place that sold me the battery and a few hours later they told me that it was a factory fault and nothing they could do. The phone was two and a half years old. I think this is why you often have to renew your contract every two years because these phones just don’t last. Frustrating.

I had been carrying around Brett’s phone and as an interim measure I decided to put my sim in his phone. But in the process I somehow mislaid his sim that I had gone to all the trouble to change. And my memory card.

I don’t know why this has upset me so much but it has. Brett’s phone is everything to him. He spent his life on his phone. It was also my connection to him when we were apart.

I also lost all my contacts and my photos.

Through my own stupidity.

So now I have Brett’s phone with my sim and his memory card. So at least I have his pictures. He always took better pictures than me anyway. I’m figuring out his phone and I have the basics that I need.

Just like I am figuring out everything in life without him to show me.

Brett’s family are also being a huge support. His dad is sending special messages of sports updates and other interesting things to play for him. His sister is helping me with technical issues and also things like his tax return. Even though they aren’t physically here I feel their presence and support through the WhatsApp messages going back and forth.

My church has also visited Brett and prayed for him. I believe prayer has a very powerful effect and I know that the peace of God is carrying me through these times. So I’m grateful for the support and also practical help where I needed it eg accommodating Brett’s parents.

Bloggers have also been a huge support to me. Writing posts for me. Giving me gifts that really are helping me through.

So how has he been doing all this time?

After the insertion of the external ventricular drain to reduce pressure on his brain, a week later they did a second one and replaced the first because it was becoming blocked. Then the neurosurgeon suggested a ventricular shunt which would be more permanent and effective, rather than doing the drain every week.

After that shunt his breathing improved. For a few days he was initiating more breaths and they put the ventilator on CPAP mode. But he couldn’t sustain it, and he had to go back to the previous mode.

The other thing that happened was that after a month he was able to go off dialysis, which he was doing every second day, because the kidneys had recovered to that extent.

The real issue remains with the brain. Lastest MRI scans show no improvement. And that’s the real problem.

So I spend my mornings at work and afternoons at the hospital. I read to him. I watch our shows with him. And I try and hook him up with what sport I think he would like on TV.

But it’s a real rollercoaster.

When I’m with Brett the way I see him responding is in facial expressions and breathing. For instance he glowed when I told him he looked better. And his face fell when I took the sound out his ear the one time that he was listening too. He is happy when he breathes more deeply. So there are ways I am noticing he is very much in there.

Because he can’t speak it makes everything a lot harder though. So I’ve been wanting that emotional connection, more like what I had with my dad during some of his tough times. And slowly, it’s coming.

On Monday I felt his deep sense of sadness as I was driving to work. And then, driving back, how sorry he was for all of this. Funny how driving in the car can be an opportunity for that kind of connection. (Work, by the way, has been a good distraction and I’m finding being around the children very comforting.)

I think he had a really tough time on Thursday night. I woke up at 2am and had this very clear feeling of him shaking me, being very angry and upset, telling me to “Turn off the F*** Machines!” In no uncertain terms. These are his wishes which he has discussed on many occasions. I did remind him, as I had before, before this stroke, that you can’t just turn off the machines. Unless you are brain dead. And he isn’t.  (But there are other things you can do, like de-escalation of treatment.)

I was very upset after this happened. You can call it a bad dream or whatever but it felt very real to me. I went into the ICU and the first thing I did after seeing Brett was to ask the staff if something had happened at 2am the previous night. They looked at me blankly and probably thought I was a bit nuts. Although I have to say there are a lot of really good nurses there.

In the meantime I asked my mom to go and wait for Dr S in his rooms because there had been a scan on Wednesday and we still hadn’t heard anything. She managed to catch him before he was about to catch a flight and we heard there was no improvement. We will have a meeting with him next week, hopefully tomorrow.

I still had disturbed sleep the following night but not like that. I was just sad and had a good cry. Saturday night I slept really well for a change.

Today has been a roller coaster all in itself. This morning when I got there I have never seen Brett so deathly pale. I had to look really closely to see he was still breathing. The nurse told me his temp was down and she was busy putting blankets on him. They were also giving him more blood.

As we left the hospital Nicky was balling his eyes out. One of the other kids in the waiting room had taken some of his slime that some bloggers had given me as part of a gift pack we were so grateful to receive the previous day.

I gave him a big hug and we both had a good cry. We probably weren’t crying about slime though.

That afternoon when we went back there was a huge change in Brett. He had his colour back. He didn’t look so pale and his facial expressions were there again. It turns out my casual suggestion “Do you have any heaters here for your patients?” bore some fruit and the nurse had a special contraction hooked up to his bed. It was a machine with a pipe that fed some hot air into his bed.

After this I felt so energetic I decided to wash the car. And I haven’t done that … um.. like.. ever?!

I know it’s temporary though. Who knows what tomorrow will bring?

I do know for sure though, despite all this uncertainty, God and special angels are carrying us through. And a lot of those angels are right here on earth.

 

Related Posts via Categories

• Eulogy for Brett Step
• A One Sided Conversation – Or is it?
• Two Months on in Hospital
• My Husband’s Turn in Hospital
• Grateful for readers, bloggers, tweeters and family
• Washing machines, Generators and My Timeless Love
• Taking a Two Year old to a Memorial Service
• Anniversaries and Sick Toddlers
• A Season of Miracles
• Why I love my husband

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