Now we are Three…

So he’s three, how did that happen???? It’s a strange one really as sometimes it feels like two minutes since he was a little baby and in the same moment it feels like he’s been here forever. Life BC (before Charlie) seems like another lifetime, I am most certainly a different person to the one who waited for that pregnancy test result one Monday in December. It’s been quite the rollercoaster, strangely my anxiety levels seemed higher when I was pregnant and things “could” go wrong rather than now they have if that makes any sense. I have heard it said that you can cope with anything as long as you know what you’re dealing with, the unknown is what induces the fear. Prior to my pregnancy with Charlie I suffered a missed miscarriage of twins, this is when your body does not miscarry naturally. In my particular case it was identified at a routine scan, no warning, no heartbeats. I think that sudden and dramatic change of fortune is difficult. You didn’t see it coming, even your own body seemingly missed the signs. There are no answers, nothing to look out for next time so no way to know if the worst has happened. That fear gripped me throughout my pregnancy, the fear of not knowing. I was terrified before every scan and every midwife appointment. I counted the days until my due date, I couldn’t enjoy the pregnancy at all, I just wanted my baby with me safe and sound. It transpired Charlie was as keen to meet me as I was to meet him and precisely four weeks early he was delivered. I had a very brief time to enjoy his arrival due to complications of my own and as I was wheeled, somewhat confused, from the delivery room my main thought as I drifted in and out of consciousness was that I had waited so long to meet my baby I didn’t want to leave him now. I guess I was pretty clear on that point as I returned to my family later that day. He had a bit of a bumpy start with multiple hospitalisations for jaundice and each time we had to return to hospital I sobbed, fearful we would lose him, fearful something would go wrong. Finally we made it through and he came home to us to start our life as a family. I was completely in love and awe of him. I did the typically annoying parent thing (I still do) of filling my social media with him and tales of our love for him. He was to be my one and only and all I could think was what a perfectly wonderful one and only he was. His personality developed and he was clearly a Daddy’s boy, lighting up whenever he entered the room, that has never changed they remain to this day the most perfect double act I have ever seen! We joined baby groups, we made friends and those early months were magical. We took family holidays, went on day trips and started planning for his first Christmas. So far so normal and then in December things were changing. My anxiety was rising, unfortunately this time it was justified. Strangely in the middle of the events surrounding Charlie’s Hydrocephalus  diagnosis and brain surgery I don’t recall being as scared as I imagine I should have been. I think the speed of events and the limited information available to me at the time limited that fear or maybe I was in shock. I’m still amazed at how I wasn’t sat in a corner rocking and sobbing but I’m also so proud that I wasn’t.

Two and a half years later and we are a little family trying to live and enjoy life as much as we can. Lockdown has been a challenge but luckily nursery reopened in June and Charlie was able to return to being with some of his favourite people and to continue his recovery and development in their wonderful care. To say I could not imagine the journey we are on is an understatement. Anxiety and what if’s never included this. I have had to learn so much but as he grows Charlie shows such strength and determination it cannot fail to drive you on, even in your lowest moments. There are times I feel a little sad and sorry for myself, I feel a bit cheated of the new mum experience. I only got one shot at this and I had planned out in my head, as most mothers do, what it would be like. When I feel like this I have to remind myself of the blessings we have, he is our wonderful boy and we get to love and enjoy him everyday. The anxiety of loss in my pregnancy did not become reality, he is here and he is beautiful. Sometimes there is anger that things could have been different if his condition had been found earlier, but I have no way of knowing if that reality would be better. The worst feeling that washes over me at times, when the world is quiet it sneaks into my thoughts, I feel guilt. I feel I should have known something wasn’t right, the thought of him in pain and me not knowing stabs me in the heart and I fight back tears. I try to listen as my husband tells me over and over I didn’t know, he didn’t know, it’s not my fault. Maybe one day when life is calmer and we know what his future will hold I will let go of that guilt.

He has crammed a lot into the last three years, I have tried to grasp the positives and turn the negatives on their head. It isn’t always easy but it definitely helps. I have a bit of a wicked sense of humour and that has sometimes saved me. Developmental delays are rubbish but they are all we have known and there are the occasional positives, for example you can run to the toilet with a developmentally delayed baby and they are exactly where you left them when you come back! I know it doesn’t seem like a big thing but, for a period of time, it really helps. Like I said when you are in the middle of negativity you look for any positive you can! I have kept my baby as a baby for a bit longer (albeit under stressful circumstances) and I cherish my time with him. I do not take anything for granted and although we have done some milestones twice the joy is, if anything, more sweet the second time around. We have waited longer for those special moments and they have been different to the experiences of others but the joy is indescribable. First steps with a kaye walker are very different but so amazing and most definitely worth the wait. He still has significant delays, especially in communication and this is hard. He is often violent due to his inability to communicate his wants and needs. He cannot communicate pain and equally does not seem to experience pain in the same way as others which is a constant worry. He doesn’t say Mummy or Daddy and I cannot fully express how much I want to hear him call for me and I worry that maybe he won’t and that hurts. Every sound he makes or word he forms fills us with joy, although he doesn’t seem to be following an atypical language acquisition path, but he has never been on the routine development journey so it’s hardly shocking. He learns the names for things he likes rather than functional words, he can name an owl, la la (teletubby) and Olaf but not Mummy and Daddy. We just have to have faith it will develop in time. He struggles in unfamiliar environments and lockdown has massively impacted on him in this way and we are now trying to reintroduce busy and unfamiliar places, sometimes this is hard but we keep going knowing that in the middle of the emotion we will see him smile and we know it it is worth it. His meltdowns are heartbreaking and the judgement in the eyes of others is even worse. We watch as his body twists with cramps daily and feel powerless to help, eventually he will fall asleep and his muscles will relax but until this point he breathes heavily through the pain and grimaces and as parents your heart breaks for how useless you feel. You always know in the back of your mind that the shunt is there, I sometimes feel it’s like hearing a bomb tick. So far we’ve been lucky but the stress every time he is sick or seemingly in pain or emotional is unbelieveable. I have a genuine fear of making the wrong decision and the massive implications of further brain damage or, unthinkably death that wrong decision could bring. Some days the fear grips me so tightly I can’t breathe and other days I almost forget the shunt and just take time to enjoy him. It’s a bit of a mixed bag really, some days are good and some are terrible but I think, although I have no first hand experience, that parenthood is a bit like this anyway.

Over the last two and a half years I have changed a lot, I try and live in the moment more. I have had to realise that all the worrying about the what ifs was blinding me to enjoying him and his achievements now. He will only be this age once and he is a joy to know and be around, his giggle fills my heart with happiness and if I don’t take that time to appreciate it these moments will pass unnoticed. I was described in a meeting as a “medical mum” which I felt a bit derogatory as in truth I am just a mum trying to be the best mum I can in challenging circumstances. I don’t think labels help, just the acceptance that everyone’s journey is different is enough. Charlie is a ball of contradictions and complexities. I often can’t, or don’t, explain to people what is wrong. I find tears prickle the back of my eyes when I try to explain that he cannot speak or that he has a brain injury and then I feel foolish or overdramatic. We try to live as normal a life as we can, I hope Charlie feels happy and secure in the life we have created. He recently made his first real nursery friend and I actually cried watching videos of them together and how his friend allowed Charlie to guide him by the hand and seemed to innately understand him and how happy they were together. I was always afraid of him being on the outside, comments made in professional assessments for his EHC seemed to support this fear. Phrases like “tolerates his peers” made me sad, his new found friendship gave me hope he would not always be alone. In fairness even if he doesn’t always understand them all the other children seem to embrace his differences and want to be around him. The first three years have definitely been eventful and I don’t imagine the next three will be any calmer but they have been in the main good, really good, and although it isn’t the kind of parenting journey you visualise it isn’t all bad. Yes I’d happily live without the shadow of the shunt but nothing is perfect and anyone who claims otherwise is a liar. If anything I have learnt to appreciate the small things and I guess that’s a good trick to learn. A wise man named Ferris Bueller once said “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it” I’ve always thought he had an excellent point it’s just taken me a few years to take his advice! Charlie is our rainbow and as everyone knows no good rainbow can ever come into being without a storm or two.