A letter arrives

I am woken by Orla having a tantrum in the night. I go quietly from the room and sit with her until she feels calm and then I lay her down in her little bed and tuck her in. I creep back through to bed and as I settle a warm body shuffles closer until we are touching. As I run through some thoughts from the day trying to get back to sleep I remember the letter. Anxiety floods back into me and with it jolts memories of last year and the year before, of when I couldn't see. And this is how it was.

I wake in the morning before it is really light, and minutes before my baby. Before I open my eyes I check out the situation from behind closed lids, and there it is - I can see a bleed. Quickly I work out which eye and watch the blood spread like in one of those slow motion films of ink in water. Still with eyes closed I shift my pupils from left to right, and up and down and watch it spread and move around. I do this for a minute maybe more, some days this is what I do as I fall asleep, sometimes throwing in a turn from one side to the other and then I watch a whole slosh of blood slowly slide from one side of my eye to the other. But this day, only a minute, as the baby by my side has woken up and is demanding a feed. And now I open my eyes to get the full picture for the day. Can I see the spotlights in the ceiling today? Not quite. Ok. I turn to Hamish, scoop him up, and head downstairs.

Feed over, I get his nappy changed using what little sight I have to make out any 'dark shapes' that need wiping, but mostly using my now acute sense of smell to make sure he is clean. On good days when the blood is clearing I can get an hour maybe 2 of what I class as reasonable sight. I do my best to maintain it: I don't bend over, I don't move my head around too much, and I try not to shift my gaze around as this all causes my sight to deteriorate. I liken it to having a bucket of water with sand in the bottom, except really it's more like a gel. Nudge the bucket, stir up the sand, and all of a sudden it's a misty, murky mess.

I hear Orla cry as she wakes up. Stevie is in the shower already, so I quickly swaddle Hamish and place him in the travel cot to keep him safe while I go and get Orla. She holds out her arms from her little bed and I can make out her shape as I lean down for her. I select her clothes from the wardrobe. Maybe because I can't see it's important to me that her clothes don't clash; that she looks as though she has been dressed by someone that has not just grabbed the first things that come to hand. So I use my sense of touch to remember what's what. I recognise items by their buttons, embroidered details, and luckily I still have that skill picked up from Uni of being able to tell the fibre make-up of a fabric by feel. But there's not much in the way of 60/40 cotton/polyester mixes in her wardrobe but I am sure that being able to do this helps me in some way.

I carry my 16 month old Orla down the stairs and into the dining room and get her into the highchair ready for her breakfast. I dash back to the living room to check on Hamish. Stop, and listen. He's asleep. I place my hand into the bassinette and gently run it round his shoulders and head. It doesn't take long to discover he's been sick. I take the wet muslin out from under him and wipe his cheek. There's a little on the blanket but that can wait. I need to hurry now to get Orla's breakfast ready. It doesn't take long. I have pre-measured out little tubs of porridge and just need to select one and add milk. I probably spill the milk, but what does it matter?

Feeding Orla takes time. I can make out her mouth if she has it wide open and I can see the darkness of her open mouth against the paleness of her little face. This gives me something to aim for. But she does this maybe only a couple of times so the spooning in of porridge is a hit and miss affair. I get better with practice, and some days are better than others. So we get the job done, get her cleaned up, and get her nappy changed and dressed. During this long-winded process Stevie comes downstairs, racing around, getting ready for work. "How are your eyes today?". "Fine", I say "Manageable". "Really?" he asks, not really believing. "Better than yesterday anyway". Yesterday was hard work. Changing nappies all day long with sight similar to looking through heavily frosted glass held a foot in front of you with the baby behind it. My hands are dry and cracked from my blossoming obsessive hand washing habit. He shouts that he can't find his cycling gloves. "They're in the cupboard above the sink in the utility room beside Orla's puddlesuit, but they might be underneath some reigns and another pair of gloves now". "And where is my security pass?"- "Orla is wearing it". I hear its familiar smack off the wooden floor. I have memorised the location of pretty much everything in this house. Don't ask me on a quiz team because I have had to shove out about 20 years worth of general knowledge to make room for my mental household inventory.

Stevie goes to work, and the day continues. I switch on the tv. BBC 1. Always BBC1. I can't even see the tv set from across the room never mind watch the programmes, but it is my method of telling the time. 9:15 Breakfast news ends; Hospital trauma documentary or Animals being tortured 24/7 (glad I can't see that) - that's on until 10am. Then a slew of property programmes until Bargain Hunt starts at 12:15 which tells me it's lunchtime. I could listen to the radio, but I like to strain my eyes trying to make out Belfast sinks and new double glazing on Homes Under the Hammer whenever I can.

I get my own breakfast and Stevie has made me some coffee. You don't make tea and coffee much in my situation unless you have a certain apathy towards scalding yourself. Afterwards I get my insulin and work out which is the long acting one and which is fast-acting and silently listen to the clicks of the dial that I turn on the end of the pen until I get the right number of units. Orla is playing and I play with her until it's apparent that she is tired and needs her morning nap. Off we go upstairs and I quickly get a shower and get dressed. Most days I try and do this before Stevie has to go to work. I like to get my make-up on and have him check it so I don't look an idiot when I go out. Today though I do my make-up and hope for the best, though this is one of the things that really frustrates me about this whole thing.

Time for the next feed, puke, and change for Hamish. This time he has been sick on me. I know he has got my top, but hadn't realised that I had sick down my leg, so later I go out with dodgy make-up and sick on my trousers. As Stevie says, 'What does it matter?'. I guess it doesn't. I have lowered my standards significantly, but I worry that having reached new lows in my 'look', that when things improve I won't be bothered to up the standards again. In a kind of 'If you've seen me covered head to toe in sick, with next to no make-up, and generally unable to present myself in a decent way, does it really matter to make an effort in front of you ever again?'. Why bother? And that's what worries me. And that is why it is so important to me to have make-up on at the very least and have Stevie check it, even though he thinks this is completely pointless and ridiculous. (and unsaid "when there are more important things you have to worry about").

Orla wakes from her nap and we head out. I love where we live now because I can get everywhere I need to go by foot. I no longer drive, obviously, though strangely I could if I chose to as none of my doctors or consultants inform the DVLA that I wouldn't be safe on the road as I can't see an object clearly 30 cm from my face or when it is bouncing off the bonnet of my car. It's one thing I feel quite strongly about. There are lots of people on the road who shouldn't be driving, particularly the very elderly, and they have doctors and GP's and eye consultants who know they shouldn't be driving, but as long as they don't have a health condition such as diabetes or epilepsy or something else (I can no longer remember all the other ailments) then they are not required to be checked for fitness to drive every few years. My license lasts 3 years and then I have to reapply. But I am not fussed that I can't drive anymore. It's a bind in that I can't go to friends houses and I can't meet up with them at play places in other towns and parks in far away places. But it drives Stevie nuts. If I need to go somewhere or we need something big or heavy from an out of town retail park then he complains that he always has to take me and if I could see then I could just do it by myself and he wouldn't have to get involved. He is more frustrated than me. I have made my peace with the driving thing.

Back to the day. We go to Tesco. I go pretty much every day. In a similar manner to how they advise you to get out and about after you have a baby to try and avoid post-natal depression, I go out to stop myself from not going out at all. Some friends laugh at how good my children are about supermarket shopping. Some of them don't take their kids there for fear of the meltdowns that might ensue. And here mine are, every single day. But what choice do I have? I have 2 children in a pram and can't carry more than a day or twos' shopping at a time. I can't do my shopping on the internet, because I can't use the internet cause I can't see anything usually on the screen. On the very good days I can read some of the text, but I just can't see the cursor. We would starve before I completed my list. So shopping we go. I have the shop memorised, I know the colour difference between smoked and unsmoked bacon packaging even if I don't know what the discernible difference between the two is.

We shop, we pay cash (I can't rely on getting the buttons right on the chip and pin), we navigate the crossing of the busy road and we go home. I've bought meat but I don't know how to cook it. I phone my dad and ask him. "What weight is it?" he asks. "I don't know. I can't read it". "Well, what size is it?". "Ummm....It's about the size of Orla's head. Maybe a bit bigger". He tells me how long to cook it and what temperature to set the oven at. 1, 2, 3, 4, soft clicks to the right and the oven is on. The temperature is a different matter. Its a smooth turning dial. With numbers I can't read. I have it left at 180 degrees. It turns out there's not much you can't cook at this temperature - roast potatoes and things that require a 220 degree temp just need more time, and you can use that time to lower the expectations of your taste buds. With the microwave I have a similar theory. 3 and a half minutes. Does everything. And nobody died or got food poisoning during these dark, culinary times.

I miss reading. I miss magazines. I miss books. I even miss reading (or should that be mis-read) food packaging. I miss reading to Orla. That makes me feel lacking as a parent. But I tell her the story of The Very Hungry Caterpillar every night at bed time and I use my own words and then it is our story. But, this gap in normal parenting is filled by Stevie who traditionally was not a reader. It helps to improve his reading tenfold and this is an added bonus. But most of all I miss seeing my children's faces. Faces that are changing and little bodies that are growing and doing new things every day. This is the hardest part of the whole thing. There is the worry that this won't get better and I won't see them and know what they look like. I don't allow myself to think about it. I just don't. Instead I just take lots of photos, dreadful photos, some just with the tops of heads, some with only part of my child and a whole lot of space, and lots of a complete stranger and his son at Water Babies who I thought was Stevie and Orla.

But it doesn't matter. We get by and we get on with looking after our two babies. The evenings are simple. Stevie helps me with the kids and makes sure that they are clean, and I always have him change evening nappies to ensure clean bums. We are at the peak of our bulk buying phase. Nappies and wipes, we have mountains of both. We go through loads anyway so it makes financial sense, but with my eyes the way they are I use 20 wipes where you might use 5, so the wipes mountain is constantly being depleted and restocked and we have our finger on the pulse of where the best wipes and nappies deals are on any given week. Once both kids are in bed we watch tv, or I sit and listen and ask questions where things aren't clear. But my eyes are tired from trying all day, and mostly I just go to bed early to get some sleep before the next feed. I climb into bed beside Hamish and relax next to his tiny snores.

We never bothered with a moses basket for him as Orla hated hers with passion. We decided instead to put him straight into his cot bed and luckily our room is big enough to have it at the end of the bed. But pretty soon I was having to dive up to get him when he woke for feeds to stop him from waking Orla and every time I got up to get him my eyes would hemorrhage. So now we're both happy. He sleeps longer and feeds less in the night and my eyes bleed less. So get off your high horses co-sleeping disapprovers!

So the days pass and the weeks and the months. Looking back it seems that this went on for a long, long time. Orla was 6 months when this started and I was just pregnant with Hamish. But some times wouldn't be as bad as others and sometimes I would have good sight in one eye. I was told that it could resolve itself and there was certainly no way I was having the operation while I was pregnant. And then I didn't want the operation when Hamish was just a newborn and I feeding all the time. So it went on and it went on and it didn't get any better, and Stevie started to threaten that we would need to move back home to Scotland where we could get help from family. I didn't have my children though to have other people looking after them. My job; my responsibility; my babies, and also I'm not very good at accepting help. So eventually I agreed to the operation. A big step for me who in case you don't know has an eye phobia so strong that I have to take diazepam just to make it through the normal eye clinic appointments.

I booked in to get it done under a general anaesthetic though you can get it done with a local. But my eye consultant thought it best also. I chose the worst eye and tried not to think of the chances of things going wrong. 3% chance of going blind. And all you can think of is the 97 successful cases before you. I turned up on the day, negotiated my way to the top of the list with the anaesthetist (hey, I'm diabetic -there's got to be some benefits!), easy enough as I hadn't eaten since the night before. And was operated on and ready to go home by 10:30am. So I could get back to the kids. Euphoric at surviving, I asked how soon I could get the other one done. Technically, they could do it the next day was the answer, but best to wait and see how this one healed first. I won't tell you about the operation. You can google it - vitrectomy - there you go. Eyes are the one thing I can't google. I don't need to know all the things that can go wrong. Time will no doubt reveal fresh horrors to me. The difference was remarkable. At the time I think I might have said it was the best operation you could have, to go from no sight to sight. I wanted to strike while the iron was hot, while I was holding positive thoughts towards surgery. But it was a few months later. And I was kind of of the opinion that with sight in one eye, well we could just put a patch over the other one and forget about it.

But I did it. And I had follow up appointments and everything has been ok. I worried about dots that I could see in one eye that was kind of like what you see after looking at a light, but that turned out to be some laser surgery I had had previously. But then they gave me a nice long gap between appointments and this was nice cause I felt I needed a bit of a break from the whole diabetes, eyes, obstetrics constant whirlwind of appointments, but the longer the gap the more you worry that something will have gone wrong in the intervening period.

And so, the letter. It came yesterday, and I am scared and it's going to keep me awake and terrified in the night until the appointment arrives. June the 3rd. We should be in Berlin, but I don't think we will be, so I know I don't need to rearrange it. I just have to get on with it.