I’m asked frequently who exactly I’m finding answers about Tilly for. The answer to that is pretty complicated and I don’t always know. Tilly doesn’t know she’s different after all. It is notoriously difficult to get the support and services for an undiagnosed child. You ream off lists of symptoms and pray you’ll say the right one to tick the box for what you need. It took close to two years to get Tilly the basic level of physio, speech therapy and occupational she is entitled to. “I don’t know” is not the right answer when you’re asked what is wrong with your child.
So firstly but possibly not primarily, I look for the answer to benefit Tilly. I want her to have the right input and level and care that she needs for the rest of her life. I will never let them do anything invasive or unnecessary. She is a person first and foremost, not a research subject.
Secondly, I want to know for my own needs. I need to know for my own sanity. I need to know if it was my genes and my body that failed her. You’d think it didn’t matter, it’s not as if I can control what my genes do. But it does matter.
I am only 27 but I cannot and will not have more children because I don’t know if I will have another disabled child and I don’t know how severely this will affect my child over the course of time. We still don’t know if Tilly’s condition is degenerative or not. With an answer, I can undergo genetic counselling or prepare myself if I ever do want to have another child. I am too young to accept that I will not have more children. But I can’t without an answer.
Thirdly, I am a sister and a mother to another child. I search for an answer for my brother and my son. I want them and their future partners to be able to have children without worrying that they too could have a disabled child. Tilly is wonderful but I would not wish her difficulties on another child, epilepsy is a cruel condition and being unable to speak is very difficult. I owe it to my brother and my son to find all the answers that I can. Tilly’s DNA is with great ormond street now to determine if her epilepsy is genetic. I want them to be able to educate themselves and access all the support available to them when they are ready to have children.
Lastly I do it for families just like mine. The more DNA being tested, the more answers will come. Families like mine will not have live in limbo forever.
That said. I think a lot about what I’ll do if an answer never comes and that’s where Lady Gaga comes in:
“If I can’t find the cure,
I’ll fix you with my love”
I will continue to campaign and fight and advocate for my child and others like her to have everything they need. I will be her voice. I will make sure she has the very best and reaches her full potential. I will do this until the day I die. I’ll no doubt use my last breath to mutter something about equal rights 😅
I’ll do all of that because I love her unconditionally. And that counts for more than anything else.
Growing up, the one thing I always wanted to be was a mum. I wanted four children, girl, boy, boy, girl. I’d drive a big people carrier or a minibus because we’d have two big dogs too. Life would be chaotic and loud and full to the brim with love. We’d go on adventures in the woods and on the beaches and we’d have a big tent with bedrooms. Much of this was modelled on my own childhood, I grew up next door to my best friend and her family, we were one big happy family and my fondest memories involve climbing up big hills and belly laughing lying down in tents blown almost horizontal in torrential rain. It was a great childhood. I wanted my own children to have the same noisy, lovely upbringing.
But things don’t always end up as planned. I can’t have any more children. Two will be my lot. I had my last child aged just 24. It’s been something I’ve always struggled to come to terms with.
Having four children four and under for the night/morning this weekend showed me just how chaotically lovely it is to have a house full of children. Having all those lovely little faces around my dining table for mealtimes was lovely. A good excuse for more sleepovers I reckon.
I can’t have more children for a few reasons, mainly because I don’t know what is wrong with Tilly. She is undiagnosed and so I don’t know what her life will look like long term. I don’t know if her condition will cause her to regress again, I don’t know if it will kill her and I don’t know if it would be worse for a boy. I don’t know if I caused it, so I don’t know if I would pass the same condition onto future children.
Tilly’s delays are difficulties are profound and challenging, I know I could not cope with another child with the same.
I can’t have a baby because Tilly is so violent that it would not be safe.
I can’t have a baby because I can’t stretch myself far enough. Tilly needs as much, if not more, care than a newborn and Arlo is a diva in his own right. I don’t think I could split myself into anymore parts.
It’s a difficult one to think about. The thought of never feeling another baby rolling around inside of me and never breastfeeding again is hard.
Bizarrely, I work with newborns and that doesn’t phase me in the slightest, it’s more watching the way sibling interact or how Arlo plays with other children that gets me. Tilly is trying her absolute best to be play and be gentle at the moment but there’s still a very long way to go. I wish Arlo would have the same as I had with my brother, a sidekick, sparring partner and confidante.
So yes, unless Tilly’s condition is discovered and declared de novo (a genetic one off) and her care needs and violence dramatically decrease, there will be no more gingers. Unless I get a cat 🐱
Hopefully we will have a childhood full of sleepover and friends instead ❤
I’ve had a whole week off from parenting. The kids went to Devon and I spent five days in Cornwall with my college friends celebrating getting into university – have I mentioned that yet?
Thrown back into the deep end this week with appointments every day. Arlo had his transition meeting at preschool and met his new keyperson, he had a whale of a time and will, no doubt, move over to the “big boy” side over the summer. One of his first key persons from when he started aged 10 months reminded me of how much baby Arlo enjoyed his farm animal sounds and would be heard mooing and baaing all day long 😂
Next up we have Tilly’s final transition day at special school. I’ve been told that her new teachers are already smitten and very keen to learn about and understand her so I’m feeling less terrified than I was a few weeks ago. She will be in the smaller, higher needs class and will be trying without 1:1 care but we shall see how that goes 😬
Then we have her home visit for school, here’s hoping that I can make it look like three terrors (inc dog) and their equally terrorising mother don’t live there… they don’t need to know how unorganised the chaos is just yet…
And finally, a taster session at a centre for children with neurological disorders to see if they can help with some conductive education, either alongside school or with part time school if they feel that would work for her.
I am not my son’s favourite person. Not even by a long shot.
The world begins and ends with Nana (and Emmy from nursery school).
I am very lucky, the bond my parents have with my children is wonderful. They could not love them more or do more for my little family of three.
But I am not my son’s favourite and that sucks.
Tilly is a fully signed up member of the mama fan club but Arlo would rather be at nana’s house.
Sometimes it sucks that I don’t have endless time to just play. I have a house to keep clean, endless appointments for Tilly and a Tilly to keep amused/ keep away from him when she’s being violent (all of the time)
Sometimes it sucks that I have to be the bad guy. The one that says no to cake as a meal, the one that insists on bedtimes and the one that can’t just drop everything to play dinosaurs in the garden all day.
I am very grateful that my children have another parent figure in my mum. My childhood was wonderful because of her and she brings them both so much joy. My children would not be the wonderful beasties that they are without my mum. She is always there for endless cuddles, beach walks, ice creams and cake for meals (though my lovely Nan is the main culprit for Arlos cake habit). As much as it does suck that I am not number one, I’m glad that he has the same number one that I had growing up. My lovely, slightly terrifying mum. Love you, you old goat.
I hope that one day in the future Arlo will get it. I hope he will get that I was busy keeping the roof over his head and the food in his belly. I hope I can find the right balance between studying, working, volunteering, child raising and being a fun mum.
And just as I posted this blog:
Arlo – “I want you forever mummy”