So, it has been a while since my last post. When things get a little bit tough for me, I tend to struggle with being alone with my thoughts, so I avoid writing when I can, because that’s probably the worst thing for it.
So where am I up to?
Daisy is three weeks post-op (as of tomorrow) and doing so well. Recovery was tough. For her mostly, but for us too. It’s one of those where many people say, as a reassurance and a comfort: “Oh she won’t remember it.” And she won’t when she is older. I don’t remember my ops. But she does now. For the last few weeks she has become more clingy and more anxious. Don’t get me wrong, when either Mark or I are around, she relaxes and is her usual cheeky self, but if we pass her to someone else the bottom lip comes out and she panics. I hope it ends soon. Because she’s the most social little thing deep down.
In hospital, she would rely on us to protect her almost. The doctors and nurses would prod and poke her. And she would be frightened and distressed. But if we held her, she knew she was safe. We could feel her tiny body relax and she would curl into us. More cuddly than she has ever been in her life. I have never felt more needed than I have in that week. Not just by Daisy, but all of my family.
It has taken us up to now to get Daisy to sleep again. She would sleep fitfully and wouldn’t settle unless she was in our arms. It was like having the newborn we never had in those early days, when she was in hospital and we were at home. Eventually we managed to get her to settle if we sat beside her cot, and recently, she has started to sleep through. But we daren’t hope that is a regular thing just yet.
Three weeks seems like nothing at all, when I am sat here and now, well-rested for the most-part. But the her sleep had been bad for a while before surgery (teeth – what else?) and then that week in hospital almost finished us off.
We saw our cleft nurse today. She used to come every week, once upon a time. And she would check Day’s progress and weigh her, and we’d work together to get her tubes out one by one. And now, well, we won’t see her again until around the time Day turns one. And then after that, that’s the end.
Of course, there will be check-ups and tests further down the line. We may see this wonderful lady again in clinics. This lady who we have come to know and love. But, as she put it earlier: “You just don’t need me anymore.”
Part of me wanted to say: “But I do. I will miss you. You have been our rock. You have made me laugh. You have sometimes been the only person in the world to understand me.” But I couldn’t, because, as far as her job goes, she is right.
Daisy is one next month. And when the enormity of her diagnosis hit us, the day that she was born, I knew it was going to be a long process. I knew that it would be more than NICU, it would be more than getting rid of breathing tubes, then feeding tubes. I knew it would be more than surgery. And recovery.
It was going to take time. And it was going to be hard.
We have had such a tough almost eleven months. There are struggles that, even I, the over-sharer, have not shared. There have been times where I have worried that I might have post-natal depression. Though, from those I’ve spoken to, it’s more likely the combination of the shock, the guilt, the pain and the grief.
But to feel all of those things, shows just how much love I have in me for this family of mine.
I feel very much like I’ve been this slow, dull caterpillar. I have heaved my heavy body up every branch on my way to the top of this tree of life. And even now, I’m not even halfway up it. But I stopped for a while. A cocoon grew around me. It became harder, and harder, and I was able to shut away a lot of things and protect myself. I had become hardened myself. And inside that cocoon I was free to cry and no one would hear me, or see the trails of tears. But just recently, the cocoon has started to break down, I can see cracks of light and colour. And I feel different.
Less sluggish, less slow. My colour is coming back. I can feel it returning to me, warming my skin. I have a sparkle again, I’m sure of it.
I hope that I will start to emerge soon, a very splendid looking butterfly. With her own patterns and marks from the life she has lived.
I just want to fly again. I want to laugh like I used to. I used to be known for my laughter in a busy office. Or for being silly with friends. Or for listening to music loudly while I cooked. Dancing around the kitchen being careful not to let the wine swash from my glass.
I haven’t done that for such a long time.
I didn’t understand how hard I would find all of this. I have spent so long worrying for my baby girl. I have spent so long feeling like I have let my son down. This has been such a big leap for him too. Starting school. And growing up. And yet sometimes I feel like I lost precious moments that I won’t get back.
And sometimes I don’t understand if that’s just what having more than one child is like sometimes? Feeling torn and guilty? Or whether that is because of what we’ve been through. Most likely it is both. But I find myself getting confused. And wondering if it’s normal, if I’m normal? Or if it’s something that will get better with time.
I feel like I have met so many people who are so much more capable than I. Who have been through similar and who have coped far better than I ever could. Who have been through worse and make me look as though I can’t cope.
There are elements that have been so tough. The hospital stays. The countless visits. The brave faces. And the endless worrying. Will she ever breathe without that tube? Will she ever eat like we do? Will she ever say Dada? Will she develop as she should?
But the worst part has been the guilt. And I think that is probably something I will have to live with for the rest of my life in my own way. I feel like I am coping much better than I did. And it is very difficult to explain and put into words the way I feel. And why I do. I couldn’t help my syndrome. I had no choice. Except for the one choice of deciding not to have children. But that was unthinkable for me. I would be letting myself down if I had of made that decision. Is someone just like me not worthy of being my child? It’s a complex thing and one I really do need to let go of.
But I do, feel like we are coming out of the other side. Our lives can be messy sometimes. I think I have to accept that there will always be a pile of washing that needs putting away, just sat on the landing. And I won’t always know why Daisy is so upset and how to fix it. And I will sometimes forget Bill’s wellies on a day when he will need them at school to go out and play. And Mark and I will fight sometimes over what seems like nothing at all.
But the truth is, this ‘stuff’. These parts of life. They are refreshingly normal. They are part and parcel of being a family. And every single mother, like me, like you, like her, like she, we all have these things that rattle and rile us and leave us feeling stressed, insignificant and small. But we don’t often see how well we are doing. And how good a job we are making of motherhood.
Me? I just desperately want to learn how to fly again. I want to let go. I want to see my troubles float away on the wind, like when you blow gently on the seeded-head of a dandelion.
I want to find that laughing, twinkling-eyed mother of two, looking over her shoulder, at the bottom of the garden, barefoot on the overgrown grass, her son showing her a ladybird, and her daughter clinging on to her leg, holding out a hand for me:
“Come on, you can come out now. It’s over. It’s going to be okay.”