Sometimes you come across a blog with a new and authentic voice which shows you what life is like for someone else. 'Mama Unexpected' is one of these rare finds.
Hana Young's blog is founded on writing about being a single parent to her disabled daughter. It describes a vibrant, challenging, loving life with Tilly, who has Guanidinoacetate Methyltransferase Deficiency or GAMT, a metabolic disorder which affects the nervous system and muscles.
Tilly has irreparable brain damage which means dangerous seizures and profound learning difficulties.
Hanna also has a little boy called Arlo and is a student midwife and hypnobirthing teacher. Hana is one of my heroes and I've chosen a few recent entries for you to get stuck in to.
21st August 2018
Tilly is away at the moment in Holland so I just have Arlo at home.
Good grief life is so much easier.
There’s no one to pin down to give meds. No nappies to change.
I eat my breakfast with both hands with no one to spoon feed theirs.
No thinking about whether my child is thirsty or hungry, he can just tell me so.
No very early wake ups.
No one to pull my hair or scratch my arms and face relentlessly.
No giant pushchair to think about.
No screaming in the back of the car.
No Mr Tumble.
No knobby stares from knobby members of the public.
We can go to the park and I can sit and watch, safe in the knowledge he won’t attack another child or attempt to kill himself.
We can pop places. Just in and out. It’s amazing. We can do whatever we want whenever we want. Just go and do it. No need to assess or plan. Just go with the flow.
And I hate it.
I miss my girl so very much that even writing this is making me well up. I miss how much she needs me, I feel lost not having to think at 100mph anticipating her every volatile move. I miss the ferocity with which she throws herself at me for a cuddle. I miss her so so much.
I didn’t think I was cut out to be a carer. I didn’t think being a mother to a disabled child was part of my identity, it was just the situation I was in. But I am a carer and a mother. Caring for my disabled child is a part of me and I didn’t realise how much I would miss it and how empty I would feel not having her with me. I’ve spent five and a half years with her by my side and it’s like missing an arm being without her.
It’s only been five days. I miss my best girl
28th August 2018
So today went well.
So well I ate a whole tub of Ben and Jerrys.
This morning a social worker came round to assess whether or not my children needed to be put under a child protection order.
I realised this about five minutes into the appointment, when I realised the social worker wasn’t from the disabilities team. That the team had decided Tilly didn’t meet their criteria (she does) without meeting her and sent a child protection social worker instead to make sure my children aren’t at risk. I had to answer questions about my relationship with my estranged husband, my childhood and what type of mother I am. I said tired if you’re wondering. All to check my children weren’t at risk in my care.
Turns out they aren’t, the social worker was embarrassed the disabilities team had passed us on without ever meeting Tilly and called me superwoman.
Can’t say I could appreciate the compliment after having nightmares the night before that they’d say no and tell me she wasn’t disabled enough for them.
If my children had been placed under a protection order today, if I had been having a bad day and broken down in front of the social worker, I would struggle to ever find a job as a midwife in the future.
An appointment that was meant to discuss direct payments for a carer or respite care for Tilly turned into that. This is the fun and games that come with raising a disabled child.
Fucking hell how is it only Tuesday?
Woman on the edge.
2nd September 2018
Sometimes it can feel like a bit too much having a disabled child. Some times I can’t make it into a funny story.
This evening whilst I was cleaning up dog poo Tilly stripped off naked and pooed on the landing, covering every single step and the floor at the bottom in poo before smearing it all over herself.
I shed a silent tear showering her off and scrubbing every single step. The carpet is ruined.
I shouldn’t have to scrub my almost six year olds adult sized shit off of the floor. I shouldn’t have to wrestle her to change her nappies or even keep them on. I shouldn’t have to desperately try to find pyjamas options she can’t get out of or else I’ll find her naked and wet (if I’m lucky) in the morning. I shouldn’t have to throw away outfits after the first wear because she’s completely destroyed them by chewing them instead of the stupid chew toys I have to tie to her.
Sometimes it’s absolute shite and sometimes it makes me really sad.
3rd September 2018
Player One Ready. Her bags are packed, her clothes are labelled, her meds are sorted. My biggest girl is back off to school. Back to the same class. Her first year was difficult, she lost her able to communicate, she ended the year much more violent and volatile despite the hard work of
her brilliant teachers. No amount of brilliant teaching could battle against the epilepsy raging through her body. This year will be different however because this year she has been on treatment for her metabolic now for six months. She is no longer ruled by seizures. She’s now able to learn and retain skills. She is changing every single day. I can’t wait to see what this school year will give her.
To put it mildly, I think getting more midwives or other professionals who have a background like Hana's into the profession is a good idea. It's the bootcamp of getting things done and standing up for people's rights and Hana appears to be made of oxytocin and titanium. I have no doubt that Hana will be a huge asset to midwifery and a voice for those who are vulnerable (she's currently campaigning to get GAMT on newborn blood screening tests).
And the nice thing about Hanna's Facebook blog is that she always makes me feel capable of changing the world too!
What are your thoughts?
Hana and I would love you to see you take action....get over to her Facebook page and click 'like' and you'll get her stories popping up in your feed. If you see something on there that you think the world needs to know about, please share it.
1. Have you got a friend or family member who's a carer or who has a disability? Anything you wish the general public knew?
2. If you're a student or qualified midwife, have you cared for a client who has a disability, or who's a carer? Is there anything we can learn from you?