Aftermath

After Monday's letter about the MRI results, I felt hit by a ton a bricks. I don't know why exactly and to be honest a belligerent part of me thinks, look does there HAVE to be a reason? I think it is though because largely I don't have to daily face up to Wriggles having cerebral palsy. I really hesitate calling it a disability or special needs, but have been doing some thinking recently and I guess, like it or lump, that is what it is. At the mild end of the spectrum, but definitely something additional to your average cardboard box menacing child. Of course, we have the daily development delays and tube feedings and pretty frequent contact with medical professionals, but it isn't very often that the words 'cerebral palsy' are mentioned or an in depth discussion is called for. Alluded to certainly, and in many ways her treatment is plotted around it, but the words and discussion of the causes are often dodged largely because it's really not necessary to have a klaxon screaming SHE'S DELAYED! SOMETHING WENT WRONG IN HER BRAIN! I know she has it, doctors know she has it, nurses know she has it...why keep dropping it in conversation if you don't have to and it isn't going to help? The most frequent contact we have is with NHS physiotherapy for children who treat things holistically and symptomatically. So really, they are the ones who deal with it most closely yet because of their approach, it is beside the point what the diagnosis is because they concentrate on making things more comfortable and facilitating development and independence.

 So when we directly deal with it, it feels a bit weird.

It also brings back wave after wave of guilt. We don't know why she has it, but you can bet anything it is to do with her birth/prematurity. I know, in that rational world,I can't change the past and blame is futile. It doesn't stop the emotional sphere of the brain running wild though and slashing the bridges of sanity and reason you have built up. And normal parenting-guilt goes overboard. Am I being proactive enough? Too much? Should I be asking more questions? Looking outside the NHS package? Researching more? Forgetting more? When you start looking there is just so much information and like many things much of it is subjective and conflicting. So do you turn off and trust those caring for you whom you see every few months? Or do you try to forge your own path and hope you get it right? What is the middle ground and how do you stop going mad thinking?

I do my best not to dwell too much on the causes most of the time, the wording, the terminology. There is no point, it is irreversible and like so much of life, it is about what happens now that counts. The young developing brain holds so much plasticity that making an effort now can make a difference. It can't magically create strength where there is none or suddenly whip up a new skill out of nowhere, it can't cure but it can help forge new connections and slowly build up bit by bit to make things just a little easier. So that is what I'm trying to look towards; to focus on. The future. That scary unknown future. But that scary unknown future I could influence. It is just the past has a nasty habit of coming up and biting you in the metaphorical arse when you aren't looking. And that is what I find tough. That and continually accepting our world is not the world other parents dream of. It is like having a secret key to a new world and balancing on wall between the two, moonlighting. It's not a worse place, just different. And after all this is pretty good compensation...

 

Growing up: Wriggles in Review!

It's that time of year again, spring cleaning my frankly horrific flat. In a delayed New Year state of reminiscing I have also been getting very nostalgic, not least as I've been boxed up grown-out-of baby clothes and coming across things still packed up from the last move, in April 2011. So to start the year off (again. Yes I do realise it's now 7th January not 1st) I am looking back at Wriggles' life so far and how we came to this point where we are.

The past 16 months have been very high and low. It has been a real struggle sometimes, so completely not what I expected with your first baby. I'm pretty sure this is true for every new family, but on top of this I have emerged with a wealth of medical knowledge and can hold my own in a doctors round. My mental "fog" is now much clearer than it has been. I'm not sure whether the past muddle has been PND, Post Traumatic Stress or a mixture of both, flitting smoothly from one to the other, but it has snatched memories I will never get back which makes me very sad. I am proud of where we are now: not least because I got here in the main part on my own.

As I have been clearing and sorting, I've been reflecting on what physically is truly precious to keep. Answer: not much. However there are some special things like any Mummy that I will treasure forever. Favourite tiny outfits; cot sheets that smell of baby, or at least baby scented washing powder... My most treasured possessions of the physical variety stem back from our time in Special Care. I do have things which mean a lot pre-Wriggles and more recent things, but the one thing I would be bereft of is a pink box (above). This was collected whilst in SCBU and the box and yellow diary were gifts from Tiny Lives, the charity attached to our unit that fundraises for life-saving new equipment and provides vital family support. 

In this treasure trove are the following: diary of our stay, Wriggles' hospital band, my hospital band, the information sellotaped to her cot, some prem-baby socks never worn, her blood pressure cuff, the photograph that I slept with all the time she was in (so it was the first thing I saw in the morning and the last thing at night), the probe which conducted her oxygen sats traces, her first dummies and her first (well not literally first; replica of) nappy.

It is so easy to forget how small she was. Born at 1090g (2lbs 5 and a bit oz) at just under 28 weeks gestation, she was not a lot bigger than my hand. Maybe head to toe she was two small hands long, maybe just under. She was, and this is crass to compare, about the size of a handpuppet. I don't know why it is so desperate for me not to forget, and we all know size isn't everything, but these physical reminders bring it back like yesterday. Our journeys make us who we are, and SCBU strongly shaped the early days of our lives and later ones two. Any ongoing issues now are put down directly to prematurity, so these objects from the 'beginning' are very precious for me. They make up for the absence of what I ideally wanted for my newborn. I do have some happy memories of SCBU, first cuddles, brief attempts at kangaroo care, days spent by the incubator, watching her grow and the privilege of seeing what would otherwise be a developing foetus but it is the stark reminders of the reality rather than the New Baby! cards which mean much more to me.

 

Images: 1. first dummy next to standard 0 months + dummy 2. first nappy next to newborn sized babygro, which finally fitted Wriggles somewhere between 4-5 months! 3. Look how far I've come!

My other precious object is not in the box because it is in the photo-album. It is the first picture ever taken of her, in NICU (Neonatal Intensive Care Unit) on the night of her birth shortly after she had arrived at the unit from a&e at a different hospital. She is battered, bruised and bright red. Her skin is see-through and still smeared with blood, only one eye had opened and there is a slight perferation to her chect. There are ECG leads on and a tube attaching her to a ventilator. It is not a pretty picture. But I love it. It gives me back what I wasn't there to see. I couldn't hold her hand but it does give me that piece of history to hold on to.