Please don’t be shocked! I know exactly what you are thinking……..Where could I have possibly been? Did I die? Was I incarcerated? Had I ran away with The Rock (I’ve only chosen him because I know my friend will read this and be annoyed: as apparently, he belongs to her!!!) To be fair, I am sure that he would have excellent internet access.
I cannot believe that it is actually two years since I last babbled here. Even more hard to believe is that when I think I must have achieved many exciting things in that time, I realise that I actually have not! Ok, well I did get married and we are in the middle of a Worldwide Pandemic but, we will travel back to that later.
I actually started a new blog: regarding Motherhood. I figured that Mr Shifter was a little too unspecific and that the mixed ramblings of my past and present were of no interest to anyone really. Then I remembered why I started ‘her’ in the first place. This was my metaphorical baby. As if I had not had enough already I hear you cry! The cathartic nature of this blog and the large gap in any posts could actually symbolise that I haven’t needed you for a while (not you…I always need you) but, the truth is, however life is going, however excellent or exasperating, I always need you. I need you now.
If I have to tell you the absolute truth: I have been frightened to write about this. To share it with you. Close friends and family already know, although perhaps not all the details but, as much as you battle with something, as much as it terrifies you, if you just keep it small and within your circle, you can’t be judged for it. More importantly, you don’t have to explore it any further than your own cranial circumference. I’m jazzing it up with a bunch of pompous words because I just feel so incredibly guilty. I just feel responsible. And no matter what is said by friends, professionals or even the aforementioned The Rock, nothing will ever ever EVER change that. Nothing.
In the Motherhood blog I began, I had a lot of support and kind comments regarding my post on Mum Guilt! A well known ingrained worry of not doing the best thing possible for your children: whether that means spending too long looking at your phone, never taking your children on holiday or just simply giving them chicken nuggets two days in a row because life is hectic. All these things that we worry about as Mum’s are completely relative. Some work (a normal job too I mean) and some don’t. Some are vegan and some live on a dairy farm. Imagine however, finding out that when these things had no relevance to your expected family life that something had happened to your child at a time when they had only the protection of you: when you were growing them. When only you could protect them in the most natural way possible.And then that you didn’t.
After your first child, everything that you studied so diligently for before they arrived becomes less of an importance. By the time I had my third daughter, I realised that perhaps a routine as strict as that of a P.E class in an all girls catholic school (which I have full experience of), was just not realistic. This applied to milestones too. The inability to recreate Beethoven’s fifth symphony on the Casio keyboard by the age of 3 just isn’t important in reality. People will say : ‘They will all be different’. However, Sellers really was different. Very much so. She didn’t use her left hand, she dragged her left foot, uncontrollably dribbled and didn’t ever attempt to speak. She had not crawled nor walked when we had expected her to but, again, they will all be different.
We had to subconsciously choose between waiting for her to catch up and possibly addressing something if she didn’t or putting all of our thoughts, concerns and worries in a ‘little box’ and maybe look at it later. We chose this. Like Pandora’s though, this box had to open.
What was once: ‘That will sort itself out’ soon became: ‘we really must get that looked at!’ Or should I say that Grandma and Grandpa made us. And that is exactly what we did. Tentatively. What followed since in these several months has been nothing short of rolling down a hill in a cactus field. Since opening our very own Pandora’s box, we have found ourselves in a sea of appointments, letters, procedures and Zoom Calls (thanks COVID-19). We have yet had chance to even really digest it. So we don’t….we just move forward blindly.
‘She just needs a bit of physio’…..exclaimed the health visitor after we brought forward her two year check. They called it bringing forward but, actually that just meant it was on time! It was such a relief! So much more so when we were told categorically that she need not visit a doctor or obtain any other opinion. They were actually so adamant of this fact that they considered it a complete inconvenience that her doctor would offer no such referral without seeing her. He would not budge.They even tried to dissuade us from going by offering their own referral and bypassing this whole ‘waste of time’. Only, we are so very grateful for this huge inconvenience. We would have always reached where we are now but, who knows what such a delay could have meant for our little wibbly one!
The doctor she saw that day was about 12! I can say that because I am now in my fortieth year. I was no doubt ancient to him also. He was so kind but, the minute he looked at her, his expressions and exclamations seemed pretty damning. He advised that our daughter would need to see a pediatrician as soon as he could arrange it. When i questioned him for an explanation, I never actually expected to receive one. I wanted him to be wishy washy in that moment because I wanted to go home. I wanted to pick up my daughter and rush her home so she could watch Peppa Pig. I could go back to moaning about picking everything up for everyone and that we lived in Blackpool Illuminations (it really is downhill from there when you realise you’ve uttered the words of your Mother.) He wasn’t wishy washy. ‘I probably should not cause you worry but, I think she may have Cerebral Palsy’….not even that it was a consideration. Just That. That!!! I had gone to the doctors on my own that day as it was so routine. I cried on the walk home. But, I didn’t believe it really.
Little did we know that we were about to walk slap bang into a Worldwide Pandemic. For some reason, it was acceptable for Ozzy Osborne but, now it was less of a stage show and a Chinese Come Dine with me was not expected any time soon! We waited less than two weeks for a Paediatrician and knowing what we know now; our timing was impeccable. Naturally,I had sworn not to Google anything so when we made it to our appointment, I was as educated with every single scenario that Google supplied me with and a deep confirmation that I did indeed have a will as weak as spaghetti! Being an aficionado of all the medical explanations that the office of Google had to offer, I was also equipped with the very definite knowledge that no diagnosis would be forthcoming. Not today anyway. We would face months of tests and so this was merely a stepping stone. We would soon be home again in front of Peppa Pig and pop our little box under the sofa again. You know I mean the metaphorical box right?
Doctor Hart told us right away and within minutes that our daughter had Cerebral Palsy. We couldn’t run home to safety anymore. Harder than hearing it was now facing up to why she had it.
One afternoon whilst tidying the bedroom, Sellers got her foot caught in the duvet and rolled off the bed. A bit like Ali Baba coming out of the carpet or a Greggs sausage roll. I was not able to quite catch her in time but, the bed is not exactly high. Those with little ones will recognise the long silence before that tell tale exhale and then a blood curdling scream. Only that never happened when I picked up my daughter. Instead of a scream, her eyes rolled into the back of her head and her body flopped, turning blue. That scream did actually arrive but, after around a minute. This now happens to Sellers if she hits her head in a certain way. It is not related. Just an extra bit of fun! So we pop that in to the wibbly blender and watch it continue to go round.
The day of the MRI was not fun. We had been at home for the crescendo of the pandemic and all our appointments: with physio and her new specialist Pediatrician had been of a technological nature. We had received her diagnosis and then had to stay home for months without real people or help. I cried a lot! When we were able and before the next wave, we were told we really should have it now. Did I want my child to be put to sleep and take her alone within the inward breath of a Pandemic. No! I would rather stay home of course.
I am not a fan of the mask. Overcoming crippling anxiety means never having to change the way you do things. Finally being able to walk around in a supermarket with florescent lights and not need to run away because that feeling was creeping in: crawling up my body like a dark serpent and trying to take me over. Wearing a mask on my face meant that something else was hindering me once again. The freedom of anxiety being blackened out with every muffled breath. It was really the fact that I felt I had to go backwards again and I was tired of fighting something. Tired of worrying about something. I am never not worrying about something. That day I realised that the wearing of a mask was irrelevant. I could take it off and feel fine again. Our daughter could never remove her mask.
As Sellers’ birth had not been traumatic and there were no extreme circumstances in her arrival, the MRI was our window into the past. It was the explanation to what had left her with a physical disability caused by something that had happened to her brain. Nothing majorly obvious was expected but, just enough to ensure that we did not have to travel down the explanation of genetics: which really would be a long and tiresome journey. But, it was obvious and it was very much there in bright light like a golden branch of devastation having left a lasting imprint within our little girls brain that would never heal.
Around 36 weeks of a 40 week pregnancy when my family and I were preparing for the arrival of our fourth daughter: worrying that our house was too small, that she may not sleep or that she was going to be the most difficult of all the new arrivals: our little girl had had a stroke. We were told we would never know why but, that does not make it any better. Any easier not to lay blame. Who else was in control but me. That feeling will never be able to change.
In the months that follow and the changes that we see in our daughter, we realise that many other aspects will have bearing on her life now also. Things which in addition to her physical situation may try and hold her back. We are still addressing and dealing with those but, we have the best support and care that we could wish for. Knowing her as we do we realise that it is only the judgement of others that will weigh heavy. To our daughter her World is whatever she wants it to be and nothing will ever change that.
For Sellers. With love always xxx