Sleepless in the middle.

I am wondering about life too much, my mind stumbles over the what if’s, the maybe’s, the should be’s. I am feeling lost and I am not sure why.

This last year have been hard on so many, the losses, the isolation, the fear has placed a heavy toll on our society and yes I have missed so much and my worries for Daniel’s health, his anxiety, his fear of people leave me with a uneasy feeling I can not shift. Can I get him back to where he was physically, can I get him back into school, can I stop him having such awful panic attacks? Are all questions I cannot answer right now. Yet I have a quiet acceptance that a pandemic is trying times and holding on to what should be, seems lost in the thankfulness that we are still here when so many others aren’t. The fact that I can worry about Daniel is a gift that I am trying to be grateful for. How strange is that of a statement being grateful for a worry, maybe it’s the fact that I have one child in heaven that I desperately wish I could worry about once again gives me this perspective.

I am trying to be thankful more,I cannot stay in this negative fear based reality anymore, if I do I don’t think mentally I would survive. For months I have been obsessed with numbers, with testing, with symptoms with fear. Frightened that allowing anyone into our lives would be a risk that I couldn’t take. Honestly I have been awful, hating my husband for his RC racing, for talking to someone outside a store, the fear of everything being so overwhelming that my stomach has not settled for months.

So I am trying to fight the negativity in my mind, giving thanks for the vaccine, for the lateral tests, for the research, for the scientists and especially for the wonderful NHS those that haven’t given up when many would have done.

I’m trying to find a balance between safety, protection and living. Daniel and I cannot hide between the walls of our home anymore, I cannot hide anymore.

So as I write this I am in the one of the places I swear my soul knows, North Yorkshire, we visited here for the first time last year and I never wanted to leave. The people, the places, the air all somehow allows my soul to breathe deep. I know my worries and fears haven’t disappeared but in the openness of this country my heart just finds peace.

Its not perfect, I mean today we tried to park our wheelchair adapted van in Whitby and it so didn’t happen, besides people deciding they fancied dicing with death crossing roads, today we just could not find anywhere to park our big van that allowed us to get Daniel’s chair out. So after a rather stressful (husband) drive around the town we gave up and decided to take Daniel to Staithes the little seaside village where Old Jacks boat was filmed. The information we read told us of the lovely harbour, the beautiful quaint cobblestone streets it forgot to mention the heart attack hill to the harbour. Holding on to Daniels chair for dear life as we went down the hill, returning up was well actually fine as I sent poor hubby up to drive the van down. It just wasn’t safe for us to push Daniels chair up the hill the gradient was so high it would be an extreme risk and thats my excuse and I am sticking with it. Also Old Jack’s boat wasn’t to be found. So as I was saying far from perfect but somehow it just felt different.

Full disclosure I am not a great traveller, especially now with Daniel. Anyone who is a parent of a child with complex needs will tell you packing for your child feels like planning an army mission. You cannot just wing it because the things you need cannot just be picked up at the local shop whilst you there. Medications, pads, feeding supplies, formula, syringes the list is endless. This is all after I have done my recognisance on the area, where is the local hospital, will it cater for my child, is there a specialist, PICU etc etc ? The worry of making sure I can keep Daniel safe does weight heavy but again full disclosure he is so worth it all. But yes it does impact on my desire to travel. My girls used to joke I had to say “I wasn’t going” at least three or four times before we finally got into the van. I personally blame them I mean essentials for a weekend away does not mean you need 8 pairs of shoes, also underwear is a must.

Anyway back to my title of this post, its 2am and I cannot sleep yes the heat isn’t helping, yes the desire to suffocate Alan for his snoring is strong but mostly my soul is restless. It’s a weird feeling like I am supposed to be doing something but I just don’t know what. I feel a tugging at my mind telling me something but what it is saying is just out of my hearing.

Does any of this make sense?

I am not sure but for some reason I think change is coming. I don’t feel anxious about this change which is a miracle in itself, but I do feel itchy as if I am ready to get started. Maybe it’s Yorkshire I mean they make the best tea here so I definitely could believe its a county of change, vision and hope.

I am just going to try and get some sleep and see what tomorrow brings. Whatever the sunrise brings with it I will try and be thankful and stay hopeful.

Sleepless in Yorkshire in the middle of what is yet to be.