The evening that Jude was born, I left the hospital dazed, exhausted but content.
Content that I had survived a long labour but bewildered as to what to do with this little scrunched up baby in his fluffy white jacket and hat. I’m not going to lie, I didn’t have a clue what I was meant to do next and struggled hugely to get used to the lifestyle rearrangement.
But to top off that normal first time mum trauma, I had many other concerns on my mind.
It didn’t take long for me to start feeling a bit weird about things. Being part of an antenatal group meant that comparisons, both well meaning and purely out of interest, were easily accomplished. The five other babies, at a few months old were interested in their environment, gazing around with wonder, reaching with their hands and cooing merrily at anyone who looked their way. Then there was Jude. Such a beautiful, chubby little baby but he was entirely void of any naturally inherited awareness or that distinctive desire to visually explore any new situation. I could have laid Jude under his baby gym and left him for a few hours and he wouldn’t have reacted in any way.
I was really concerned but didn’t know what to do.
I had Jude when I was pretty young. Born in March, I had just turned twenty five myself so looking back it was all a lot to take on. Having your first baby is shock enough but to then suspect something might be amiss is truly awful. Not only did I have to contend with all your typical baby tasks such as following a routine and weaning, I also had to attend doctor and hospital appointments, mentally battle with what I suspected to be true and bat away comments from absolute strangers. I’m digressing but I’ll mentioned it anyway…I think I’ve written about it before (clearly bothered me a lot!) but I’ll never forget that first negative comment I received from someone I didn’t even know. At a play group when Jude was ten months old, I was explaining to a friend about the first paediatrician appointment we’d had that week. I got as far as saying that the paediatrician definitely felt Jude was delayed developmentally when a lady across the table (who I didn’t know) contributed “well, what do you want him to do at this age, run?”
I was pretty shy at this age, even more so when out and about with Jude because of my reluctance to engage in conversation with anyone about him. I wasn’t ashamed, just really confused. Anyway…and if I could go back in time, I’d slap myself into shape for doing what I did…I didn’t know what to say to this woman so rambled on in an attempt to justify our hospital appointment to her. It’s none of her business!!! I know this now obviously but she completely threw me. I often daydream about what Alice at thirty seven would say to this woman that I couldn’t say at twenty five. I’m sure it would be colourful.
I’ve built up a wall. I’m defensive about Jude and happy to fight any battle that needs attention. I can’t help it, I think from all the negativity we’ve faced, I now assume the worst when people walk our way. I know it’s wrong so I do try and give people a few seconds leeway before assuming their intentions.
Jude used to love the feel of my hair and sucked his finger in comfort.
So how does it feel when your baby is perceived as imperfect? I guess this very much depends on the individual and I can only comment on my own series of emotions.
Initially, it feels awful. Really confusing and awful. That moment where you are told there’s something wrong with your child lives with your forever. I still remember the meeting in Cambridge when our lovely paediatrician confirmed something was wrong with Jude but she wasn’t quite sure what just yet. I brushed it off. He’ll catch up though, I’m sure! was pretty much my head in the sand assumption.
You feel the guilt. I know I talk about this a lot but that wondering if I did something wrong that led to Jude’s disabilities still resides quite strongly in my heart. I don’t think that will ever go. I felt terrible guilt when my baby wasn’t able to do what all the other babies could do. Was I a bad mum?
You feel lonely. I was terrified to take him out to baby groups, especially as he got to six, seven months of age and still wasn’t really engaging in any way. I was a permanent rhetoric of excuses. “Oh he’s a bit tired today.” “He hasn’t fed well today, I don’t think he’s very happy.” Always ready to justify his lack of response!
He wasn’t always like this and those moments where Jude smiled, laughed or turned his head at the sound of your voice were possibly more remarkable than if he had been a neuro-typical child and this was simply the norm. To get those fleeting moments of awareness was just beautiful.
It sometimes feels like you live on a different planet to everyone else, you physically and emotionally enter into a world you didn’t even know exists. Living with a disability or a child with a disability is so SO different to “normal” life, I can’t even explain how different it is. You aren’t experiencing what most people experience, even just going to the supermarket is different. I can see that even now – if I go to the shops with Elsa, I feel like I have this secret no-body knows. I’m incognito, testing out what everyone else does every day of their life. Then I go out with Jude and reactions change. Both in a negative and a positive way but the difference is that unknown. You don’t know if you’re going to meet a goody or a baddy. Someone who is reticent towards Jude (cue battle shields at the ready) or absolutely lovely. I hate that not knowing!
In the early days, there was many a time when I felt a blanket around just Jude and I, as if we were the only people in the world. We didn’t really network and build baby friendships like many do and in a lot of ways, our social circle diminished. This was my fault. My own insecurities coming out in how I mothered Jude and now I realise that I had nothing to be afraid of. Good old hindsight, eh? We did go out every week to playgroups but I dreaded and hated them.
You start to feel very grateful for small mercies. As I mentioned above, those successfully achieved milestones feel like a huge victory. Whilst most babies breeze through each challenge, we literally had to force Jude to try new things and once he cracked them and was proud of himself, we felt immense relief. He’s done it!
Having a baby like Jude, we suddenly became less expectant and judgmental. I think our family appreciated those magical baby and toddler moments a lot more than we perhaps would have if he hadn’t been so Jude-like. Falling pregnant with my second and third child, my only wish was that they were healthy, not that they were the opposite sex to my first child. I still have that pang of “you don’t know how lucky you are” when I hear people wishing their next child to be a boy or a girl.
But do you know what I’ve learnt most about having my apparently imperfect baby? I’ve come to realise that actually, everyone is different. Jude is Jude and if he was anything other than he is right now then he wouldn’t be his perfect. The early days of motherhood were hard, very challenging and I had to learn fast. They’ve very much made me who I am today, who I guess I was meant to be. I wouldn’t change anything for the world. The experiences we had, the encounters, the people we’ve met all form together to create our perfect.
He’s Jude perfect.
