It’s been so long since I updated here. Truthfully Spinabifida kicked my arse a bit and I just couldn’t bring myself to write about it or even talk about it anymore. I didn’t want our lives shadowed by it, I didn’t want Clark to be defined by it, I had just bloody had enough of it.
We arrived at the hospital at 7.00am and crammed into a small corridor with several other terrified looking parents. Anxiety broken momentarily when I farted (loudly) and blamed the baby. Then we waited and waited and waited, tried desperately to distract a very hungry Clark and also each other. I think it was about 10.30am when we got taken down for his anaesthetic. This bit still makes my heart hurt, Clark sat on Jases lap whilst they administered gas to him through a mask. I remember trying so hard not to cry, in this clinical room surrounded by nurses and doctors who had the most important job to do, but there was my baby sitting on his Daddies lap crying whilst being put to sleep and all I wanted to do was snatch him up and run faraway. Instead I burst into tears and a nice nurse got me a tissue and Clark got drowsy and they laid him down and we were told we could kiss him goodbye.
I lost it outside, big heavy, knee buckling sobs while jase held me up. We walked to the chapel in Great Ormond Street, I figured it would be peaceful and it was but then my big heaving snotty sobs kind of broke the peace so we left.
Eight hours we had to wait, an absolutely surreal eight hours. One minute we were walking round the British Museum like any other carefree couple and the next minute I’d crack and breakdown and cry for my baby and we’d venture on to find a new distraction. We walked, we sat in parks, we walked some more. Eventually we settled in at the hospital to be close by when they called us.
I shook when they did, physically shook all the way down to recovery. Oh god what a joy that was, seeing him for the first time. In this chaotic loud recovery room, he was covered in wires and tubes and was drowsy and disorientated and trying to get up and in all that madness they let me nurse him. I’ve never been more scared of holding him in all my life, he’d just had major spinal surgery. What if I hurt him? It was like nursing a fragile doll but we nursed and he grew calm and I found the tiniest bit of peace in weeks.
His surgeon came to see us, to reassure us it had gone well and he had done everything he hoped to do. I can’t really put into words how i feel about Mr Thompson, I mean can you imagine preforming 8 hour surgery on a 14 month old. He is the quietist of heroes, a tall gentle man, who took care of my baby and to say I’m grateful to him would be the biggest understatement.
I always imagined the first night after surgery to be a quiet one, I joked it would be the first full nights sleep I would have had in over a year. I figured he’d be so knocked out that he wouldn’t stir. I clearly forgot what a spirited feisty little thing our clark is. We arrived back at the ward at 6pm and he eventually slept at 3am. It was the longest hardest night of our lives and it’s probably only now I can look back and not be completely freaked out. He was scared, disorientated and furious. He managed to rip out two catheters, nearly ripped his canular out too. They let Jase stay all night because we were tag teaming between me nursing him and Jase rocking him as it was the only time he’d be calm. All the while terrified we’d hurt his back, terrified in all his struggles that he’d hurt his back. He had something like twenty doses of morphine but it was the paracetamol at 3am that finally knocked our little fire monkey out.
I can’t sugar coat it, it was an ordeal, seeing your baby in pain and not being able to take that pain away is the worst feeling ever. We got through it though, after day one everything was easier. Every procedure since the operation has seemed like a walk in the park really.
His wound wasn’t nearly as scary as I’d imagined. The taking care of it was a bit terrifying though. Obviously the site of the stitches being so close to his nappy region meant there was a huge risk of infection. We were told at his check up that we’d done amazingly well at keeping it clean and I remember me and Jase high fiving like a couple of dorks. Have someone to help in those first few days after being discharged, nappy changing became a two man military job in our house.
Here are some things that might also help – Before the surgery make sure you ask the surgeon all the questions you need to. I think some of ours were – How long will it take? Will I be able to breastfeed him straight away? How long will he be in for? Pack pjs not babygrows as it’s easier access to the wound. If the hospital is as warm as GOSH they’ll spend the entire time just in a nappy anyway. iPads or similar devices are great to take to keep baby/toddler/child amused while they have to lay down. Pack their favourite blanket and teddy. Pack some comfy lounge clothes for yourself, I also took books and cross stitch, to be honest I couldn’t concentrate on either while the op was happening but I did do some reading during the rest of the week.
Most importantly make sure you’re with someone you love and someone who will hold you up through it. Jase was my rock, he didn’t fall apart, he stopped me going completely bonkers, he was my light, my love and bought me amazing food on demand (I bloody love you baby)
If you’re reading this and about to go through the same thing, nothing that anyone says will make you worry less or make you feel better. I can tell you though that you’ll get through it, you might not think you will but you will. Time will pass achingly slowly and incredibly fast all at once. You’ll feel and experience every emotion possible and in some ways it will be even worse than you imagined but in others so much better.
Lastly, I went and spoke to a counsellor, it felt weird being that I am one but then I remembered I am one because I truly believe in how powerful and helpful talking to someone impartial and empathic can be and it really was.
Well that was quite cathartic.
Spinabifida you’ve been a right royal arse hole lately, and to be honest I’m not sure I’ll ever really accept you in our lives but maybe, just maybe I will learn to live along side you.