Hope that you are all well and enjoyed half term & Valentine’s day
It has been all fun in the Team Mallon household , 3am seizures,, AHC episodes - lots of coffee has been drank and a poorly Izzy
Gavin & I don’t celebrate Valentine’s Day in a big way, we usually just cook dinner and open a bottle of wine at home. Hugh had already told me that we would need to celebrate on a different date as Spurs v AC Milan was on 14th and he & Gavin would be watching 😂 so I planned dinner for 12th – it didn’t happen as Izzy was sick and there is nothing more romantic than a dog with D&V. Luckily Izzy felt better quickly and we didn’t need a trip to the vets .
I then planned for the 13th – Abigail had a seizure just before her bedtime so by the time the Paramedics had left it was nearly 9. We did finally get our dinner on the 15th – all the best plans as they say.
Our half term was nice, Abigail had a couple of days of AHC, but we had a lovely few hours on one of the days in Greenwich Park. Abigail managed to get out of her chair and have a walk, using the chair to support her, she really enjoyed looking around and saying “Hi” to people.
We have definitely seen a decline in Abigail’s mobility, hopefully this will settle to a new baseline soon 🤞
I overheard 2 women (one very heavily pregnant) talking recently about children and parenting, it made me start thinking about our expectations of being parents and how these change once our children are born.
We all go into parenthood with the thoughts of “I would never let my child do A,B,C,D “ I certainly did , no way would I let my child go to the supermarket in welly boots and a princess dress / batman costume 😃 and then they arrive and you realize that firstly they do not come with a manual, and some days you just want to make it to bedtime.
There are days that I would let (and have let) Abigail go out in her Minnie Mouse PJ top under her coat just so that I can get to where we need to be – that is what she wants to wear, no one can see it anyway – I say choose your battles 😂
The way we parent and will always parent Abigail is certainly different from how the books, family and friends suggest or would do with their own children, have I felt that people judge , hell yeah, do I care – not really, we parent in a way that works for Abigail & Us
I allow Abigail her iPad while eating dinner and some days I don’t even make her sit at the kitchen table, she sits in the front room with a tray, you see it is about survival, doing what works for Abigail, making sure that she is eating her dinner is way more important than the actual place she eats it. As my friend you should not be judging me or my parenting, you should understand.
The way you parent and the rules you have for your child are going to be completely different to mine, the expectations You have for your child are going to be different to mine. My expectations from Hugh are different from those of Abigail’s – This is where it gets difficult, and I have to remember not to beat myself up with … “Am I too tough on Hugh” “Am I too soft with Hugh” I am going to give myself a bit of credit and say that Hugh is a kind, mannered, well balanced Kid – Long may it continue
What works for You might not be right or work for me and comparing your child to mine does not help, in fact it makes me so mad when I hear parents doing it - All children are individuals and should be treated as such.
We all have expectations for our children, the way that Abigail achieves will not be the same as other children, but each achievement is just as important and we will always celebrate each and every one just as we do with all that Hugh achieves.
I worry as I am sure all parents do whether you have a special needs child or not. I worry that I’m not doing enough, I worry that what I am doing is not enough, I worry that I should be doing more. What I can tell you and should probably tell myself more regularly is that I am doing my very best and always will for both Abigail & Hugh.
We seem to beat ourselves up daily as parents from the internal judgments we do to ourselves to the articles that tell us breast is best, formula fed babies have higher IQ’s or we should all be standing on our heads saying the alphabet backwards to make our children happier. And best of all these articles change daily 😩
I have said before and will say again – PARENTING IS HARD ENOUGH, CUT YOURSELF AND EACH OTHER A BREAK
I did not offer this advice to the women, I waited for my coffee thinking …. Your whole life is about to change, buckle up and enjoy every minute of it.
Catch up with you all soon Em x – CureAHCUKMummy
