My children surprise me all the time. They infuriate me, drive me bananas, make me laugh, swear and cry but I love them all with all my heart.
Even during the toughest times, there can be shards of light.
The past few weeks/months have been, at times, totally exhausting and mentally draining for me and Ollie. We have been at breaking point often. Freddie has been experiencing some challenging behaviour, pretty close to what looks like a panic attack. Other times, he is just screaming blue murder. Most mornings and most evenings. He never does this at school and rarely in front of anyone else. We can be with friends and they don’t see it and he doesn’t do it to his grandmas. This is a huge positive but also frustrating that no one really sees what we deal with.
We are talking to school, our GP, and a specialist paediatrician to see what we can do to help him. And us. However, a really big concern of ours is how it all affects Bella and Jago. It takes time away from them. It causes friction and upset in the house and makes us all very tired. Jago is too young to understand what’s going on but these things still affect little ones.
Bella on the other hand is only five years old but understands so much more. She says such grown-up things at times that I wonder where she gets them from.
Her words often cause me to silently cry whilst we have our last cuddle at night. I don’t want her to know I’m hurting but the tears just come. Sometimes through sadness and sometimes because of words which are bitter sweet.
A couple of weeks ago, after a particularly bad evening, she said: 'Mummy, I wish Freddie’s brain hadn’t been injured before he was born. Then he wouldn’t scream so much.' Me too. It nearly broke me hearing those words. Her understanding was key. She is so knowing.
We have had some other pretty upsetting conversations about how she is feeling but I’m always grateful we are close enough that she can talk to me. These lines of communication are essential. I hope this will be the same state for Jago as he grows.
You remember I said at the start: 'Even during the toughest times, there can be shards of light'? Well, last night we had one of those bright moments. Freddie was having what appeared to be (most likely was) a panic attack and I was flying solo for bed time. It was horrific but Bella was amazing and Jago too. After it was all over, Ollie was home and Freddie was calm and happy and we had our last cuddles of the day.
I told Bella what a wonderful sister and daughter she is. How much I appreciated her help and how much I love her. We talked a little and she said: 'Mummy, I know I can always count on you.' I responded with: 'Of course. Always and forever.' And then she said: 'And you know you can always count on me don’t you Mummy? And Daddy and Freddie and Jago. Oh and Teddington, they can all count on me too.' What an amazing, sweet and brilliant little girl.
Siblings of children with special needs have it tougher than those without, for so many reasons. They struggle with their emotions and feelings but hopefully with the right support we get through it together.
Bella is my Superhero.