First Shoes

I may be mad following this weeks trouble with shoes, but on Friday we ticked off an exciting milestone.

FIRST PAIR OF SHOES.

I had no real intention of making the purchase, but after advice from our physio that Wriggles' feet and legs really need some support to help her standing as she is all over the place, I thought it would be wise at least to get her feet measured. Her feet, like the rest of her, look so dainty that I fully expected she would not fit any of the styles of Cruisers let alone First Walkers. So you could have knocked me off my chair when the foot gauge revealed she was a size 3F!

I was pleasantly surprised by just how good the customer service was in Clarks. It was nearing the end of the day, Wriggles was in a "don't-you-dare-touch-my-feet" mood and I was very nearly going to call it a day and come back when she was more full of energy and likely to enjoy it (if that is ever possible when you hate your feet being touched). But the two ladies persevered in cheering her up by showing her sparkly shoes, flashing trainers and asking to be introduced to Charlie Mouse who had come for the journey. After some impressive persuasion, the little pink shoes were fitted and I decided to just bite the bullet and supply the credit card necessary. We got a photograph, heigh chart and certificate for our troubles. Oh yes, and some New Shoes.

I reckon such a statement of growing up is exciting to any parents for their children, but it left a big impression of me. Such wonderful-yet-to-be-expected milestones seem that little bit more precious after Wriggles' difficult journey, and after the continuing physio and support we have had surrounding her delayed gross motor skills, it was is a pleasant surprise and sheer joy and delight that I see her progressing and with the footwear to match as a badge of honour. 

Back in NICU, "first shoes" never crossed my mind. At that point I did not know if she would ever even be capable of walking as she grew up. My mind lived in the moment; thoughts of the future and the excitement to come were written off simply because of the fear that at the last hurdle they might be cruelly denied. I didn't dream of first birthday cakes, silly jokes or first shoes, I dreamt of my baby in my arms and that one day she would recognise me. Even now, when we are 'out of the woods' and safe at home, growing and exploring new things every day, I don't think a day passes without me thinking back to the difficult start. It is forever imprinted on my mind and I fear sometimes that I don't allow myself enough to become carried away with the freedom of being in the now Good moments and letting myself trust. Even the best times, when we laugh with abandon and Wriggles screeches with laughter and I drink her in, every last little tiny bit that I must memorise forever and ever, after the moment I think back. I am grateful we are now here and there, still sorrowful for being there and in a heartbeat guilty for not being able to let go and forget. But today, was a day of New Shoes. A sign of how far we have come. Nearly two years ago, I could have lost my baby. But I didn't and she has the prettiest, pinkest cruisers to prove it.

Test Driving the New Shoes (did I mention she has New Shoes?!)

Choosing to See

One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.

I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.

I didn't.

"Are you sure?" a nurse gently asked. "It can be very distressing."

I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.

Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities. 

When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.

Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch? 


There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.


We were the lucky ones.


One minute thirty seconds.


It could have been so much longer.


It could have been so much quicker.


It could have been a different story altogether.

Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.