First things first, I really wanted to be sharing a positive post. All I ever want is to ooze positive, happy vibes. But even those with millions in the bank and a happy home have bad days. I’ve had more than my fair share of tough weeks recently and that’s down to my sons rare diagnosis starting to take its toll. There’s a difference between being negative and being real.
I advocate self-care, encourage education and thrive off open conversation about this life, all to encourage living your best life under any circumstances. However, to raise awareness, assist understanding and educate, we also have to be honest about our reality. Therefore instead of a ‘how to be positive’/’the perks of being different’ (Ooo I might use that title one day) I’m sharing with you 5 ways having a rare condition affects parenthood. I’m going to try very hard to speak specifically about Jaxon rare diagnosis rather than everything else he has going on for this Chromosome Disorder Awareness Week blog. It shouldn’t be too hard as everything Jaxon screams rare. My situation and experience will obviously not be everyone else’s experience but I’m hoping others in my shoes can relate in some ways and it can shed some light and understanding for those looking in to our little world.
Here’s what I’ve learnt, struggled with and faced in just 10 months of being a mum to a baby with special needs…
1. Sadly, Mum groups aren’t relatable..
Now I’m not saying colic isn’t hell.. but in comparison to a life-threatening illness or a long-term condition, it’s something to envy. And oh your child is advanced for their age, yaay for you but mines severely delayed and you’re making me feel really crap without even trying. It’s not your fault, you’re just sharing your normal life and your pride, I’m just jealous of normal.
On a few mum groups I’ve been upset by the most normal questions and worries:
“Anyone want to go to the park?”
“Looking for other moms in @£!$ area with a baby under 1..”
“What play groups are there in…”
“Anyone fancy meeting for a mums coffee?”
Why do these bother me? Because that’s the life I expected. Coffee shops, strolls in the park, mummy meet ups. But my new reality is that my 10 month old won’t do what your 6 month old does. You’re going to ask about his feeding tube. If we meet for a coffee you’re probably going to complain about sleepless nights or nappy rash when my worries are life-threatening surgery and the implications of long-term disability. The truth is, I have no idea where the best playgroup is with the friendliest mums is because we’ve not been out of hospital long enough to get into an eat/sleep/medicate routine, never mind leave the house for leisurely activities.
2. Can I have more children?
I always thought I’d have between 3 and 5 children (laugh out loud with me now). I imagined at LEAST two. But now, we’ve not been out of hospital long enough to keep a plant alive (no joke, my basil and parsley are dead along with my beautiful roses, fabulous assortment of flowers and my lilies, sighhhhhhh). Looking into the future I’m no mystic meg but this life is going to be demanding. Out of hospital we still have appointments with different therapists and consultants every week, a mean feeding and medication plan and then life. Where do more children fit in? Wouldn’t they be neglected?
3. If being a single parent is baggage, imagine a single parent to a disabled child..
According to the Founder of ‘Special Needs Jungle’ a report by several charities including Relate, Mencap and Relationships Scotland revealed only 1 in 3 parents of special needs children are in a relationship. Being a single parent isn’t uncommon with only 1 in 4 parents in the general population being in relationships. But this research found (unsurprisingly) increased loneliness and less time for dates within the learning disability community. With a lack of time, heightened stress levels, increased anxiety and a higher demand in care, a relationship breakdown is understandable. But how does one find someone new when caring for a child with these demands alone. How do you date? How do you explain to someone how demanding your life is due to your childs special needs? And, how do you imagine someone to be okay with those demands when your childs other parent wasn’t?
Well, lets hope the breakdown was because you weren’t compatible for such a job and be hopeful that someone else is.
4. Is this my career over?
Some people are born and bred stay at home moms. Some women are already housewives and a child is their life. Some of us however had dreams, ambition and a strong work ethic. Some of us studied for 3 years to gain a degree. And some of us (i’m not saying any names but ME) were just about finishing that degree when we fell pregnant (laugh with me again). Some of us expected to be a cool career mom, juggling a cool job and still managing the school run. But when your child has extra needs. When your child doesn’t feed by a bottle or feed orally at all, nursery options are limited. When your child has appointments 6x a week, flexible working is taken to another level. And when your child is living with a life threatening heart condition, it’s not so easy to justify going back to work. Who do you trust with your medically complex baby? Who do you know will administer medication without errors other than yourself? Who is even willing to take on the responsibility of pump feeding, medicating and monitoring your completely unpredictable and often medically unstable child? I guess the degrees gotta just go in a frame and stay at home mom life it is. ADAPT!
5. Friends have a new role
Becoming a mum changes many friendships. Many friends have told me I’m a new person they’re getting to know now. I have a child. I’m a mum. I have new priorities. I think that’s pretty normal. However, when you parent a child with a chromosome disorder you are more strained. You are learning medical terminology, researching diagnosis, contacting support groups made of other mums in yours or a similar position, you’re taken away with appointments and if you’re like me you live in hospital (i hope you’re not like me). Just like the mum groups aren’t relatable to us, we aren’t relatable to them. We are overwhelmed with a commitment that they can walk away from. And some will. Others will stay and your friendship changes. But all relationships are strained. You need more now and you’re unrelatable. They don’t know about tube-feeding, complex medications and rare disorders (unless like me a good portion of your friendship group are qualified nurses, wahey!). Let’s face it, it’s a crazy life and it’s a lot to take on. So some people won’t be by your side, they weren’t made for this like you were (yes, you were!). The ones that stick around you may actually struggle with, you don’t want to weigh them down or be their negative nancy friend. Some people really want to help but you can’t accept because it’s too much responsibility you feel they didn’t sign up for. It’s all a learning curve.
So that’s that. Just 5 of a MILLION ways a special needs baby changes your life.
The bottom line to all of this is that yes its life changing. But you will learn to love this new life. All we can do is raise awareness, educate those around us, encourage open conversation to avoid shame and isolation and find others like us to feel more normal. Because in the special needs community, we’re all doing this and if everyone’s doing it then its normal right?!
I hope you either found a little normality in relating to this, or feel a little more educated on the life those of us in the rare chromosome disorder/special needs community live.
Thank you for reading. Please feel free to share this on all your social media platforms with all of your family and friends, you never know who could benefit from reading this. There’s a surprising number of parents hiding away in the shadows scared and overwhelmed, not everyone is as verbal (in your face/”gobby”) as me!
My main platform is Instagram so feel free to follow me on there (@thenursemum) for more blogs like this and regular updates on my special journey with my son and our normal. Also our new Facebook page is https://www.facebook.com/thenursemum/.
This blog was inspired by Unique Charity.This is a charity supporting families and individuals with rare chromosome disorders. They are the creators of #ChromosomeDisorderAwarenessWeek and you can follow them on both Instagram, Facebook and Twitter.
Special Needs Jungle : Study spoken about in ‘single parent’ paragraph – Parents of children with learning disabilities lonely, distressed and under pressure. You can follow them on both Instagram and Twitter.