So this year we decided to treat the kids to a trip to Center Parcs for a long weekend away. We know the change of routine could be an issue with MO, October half term we went to a caravan in Norfolk, what a big mistake, however we know that nature really calms MO down.
While we were here we could forget the up coming appointments and tests BBG has to go through, we could forget the fact MO desperately wants friends but can’t quite figure out what happens once he has them. We can forget the melt downs at home he has when his day time routine is slightly altered. We could let BG just have fun, not have her worrying about her brother, this is something we have never wanted her to do but where she is so caring its all she does.
All in all it was successful, we didn’t break anything, we didn’t stress and for the first time since being a family we came home from a holiday not wanting another break but without the kids!
As soon as we got home however everyday life hit us. MO was either bouncing off the walls or curled up in a ball not quite able to face the world. He is getting worse with the fact that everything is black and white there is no grey area with MO, he takes everything so literal. This change of routine affected him big time and he couldn’t get calm, he still isn’t calm and back to himself. Although we have so many struggles with MO the tiniest things make us smile. Yesterday he came in with his toy bat and he had mastered the bat noise. those hours of watching nature programs had paid off and he could now make his bat not only sound right, he could make him walk and fly right. His smile was infectious!
BBG had her first physiotherapy, we were hoping in the back of our minds that the physiotherapist would laugh and say there was nothing wrong. When we were there BBG moved so much, we have never seen her move as much as she did at physiotherapy, but then the report came through confirming what we knew, that our daughter has problems and that we will start helping her by strengthening up her core muscles.
Since the first physiotherapy session and since our exercises with BBG she is now moving a lot on her back! She gets extremely tired very quickly but she is lifting her legs and trying to reach for toys in front of her! Ok she doesn’t move when she is in an upright position yet but just to see the difference in her laying down made dad and I cry.
Someone said to us to just forget what could be coming and to celebrate everything BBG does in the present, I didn’t have the heart or strength to say actually we celebrate EVERYTHING, the first time she found her fingers and sucked them, the first time she kicked out her legs, the first time she looked at a toy and moved her arm even though she didn’t touch the toy, such tiny things and yet with each thing we cried. We looked at each other and cried tears of happiness. Deep down every time physically she does something new we are elated, its like BBG has just run a marathon but deep deep down in our subconscious we are still thinking is this what her life is going to be, celebrating the tiny things, will she ever progress to sitting, crawling or even walking? How much will her lack of muscle strength now affect the rest of her life? We have so many questions and the truth of the matter is we just don’t know. She could have minor to major physical development delays and that unknown is scary!
This week I have struggled so much personally and mentally. I have just switched my medicine again. At the end of 2016 my mental health nurse was happy to sign me off, but January hit and all the appointments hit and I have struggled. I have been told to walk, so I have walked and walked. I push the pushchair and breath in the cold air, I just listen to the cars and the birds, I push my pushchair and am to the outsider a normal mum pushing their healthy baby. Looking at me or BBG you can not tell anything is wrong, that I am completely ok that I have no worries, that I don’t wake up constantly during the night as I can’t rest. That I constantly rub my hands together and scratch them to ease my thinking and to calm down.
Then I reach my house, I peer in the front window and theres my family playing board games, doing craft and playing xbox all smiling, all fed, all happy, all healthy and realise dad and I must be doing something right. As I sit on the sofa and get suffocated with hugs and kids sitting on my lap, I realise that the kids are happy and do not know my internal struggle, that they don’t think I am failing as a parent, that they don’t think I should go as their better off with out me and I smile, not a fake smile but a real smile.
I can make it through these black clouds, I am a good mum who loves and would do anything to make my kiddies smile and be happy. My BG is doing extremely well at school, she has a tonne of friends and academically is doing well, MO is a struggle but I wouldn’t have him any other way, SB is a whinger but that smile he makes when he just randomly shouts LOVE YOU is fantastic, the way he brushes his hair, and strolls around with his baby doll and is so attentive just warms my heart. As for BBG she is developing at her own speed. Who knows what the future holds, but for now she has the biggest smile in the world and thats all that matters.