Strong really isn’t the right word

Somebody said to me yesterday when they asked about BBG that I was very strong about everything going on.

I guess when we first thought something was wrong with BBG we outwardly worried. I remember reading something to my mum being very clinical and bursting out crying. I cried, which made my mum cry, which made me cry more.

So much is going through my head and during the day going about daily activities I do not dwell on any of it, if I did I don’t think I would leave the house and if I did I would be crying.

When I called the hospital last weekend because BBG stopped breathing I was talking to them and I don’t remember what I was saying but I know I probably couldn’t be understood well… I got off the phone with a come to the hospital now instruction. I was still all fine, I called Dad who didn’t answer his phone but I knew he was on the allotment so called my mum calmly to go and get dad. As soon as he pulled up and walked through the door I just broke down, I was crying so hard… that kind of cry where your nose is going, your just making random noises and your eyes are stinging. He calmed me down and sent me on my way. I drove to that hospital with horse blinkers on, all I knew was that my girl needed the doctors. I cried a little in the car park and ran to the lift, by the time I was at the ward I was back to putting on a strong appearance, I was back to stating clinical facts, I was back to my insides being made of jelly but my outside made out of stone.

The people see my clinicalness, they see me brush off comments or hear me say she is fine. They don’t see that I want to say actually I’m petrified, I am petrified of the unknown, petrified that I may only have a few precious years with BBG before she goes to sleep never to wake, petrified that I will be watching her struggle as her body fails her and yet at the same time hopeful that her diagnosis is fine and that it is just a lifestyle adjustment. I don’t tell people one of the reasons I changed my job dramatically is because I don’t know what her life will do and I don’t want to spend her life working, although I need to work part time to clear my head from physio, clear my head from medical jargon and be ‘normal’ for 12 hours a week, at the end of the day I’d rather be short of money and see my daughter as much as possible then have a decent lifestyle and never see her and live to regret it.

People do not see that I often wake and just watch her sleep, watch her chest fall up and down as she breathes and snuffles. That I lie awake while the house is silent and get out the phone and google away. People don’t see that mine and dads relationship has completely changed, that we are more stressed then ever and have more little spats then before and yet we are stronger then ever before. We are just both coping and letting our frustrations out on each other only to then laugh and cry later.

There is no right or wrong way to parent a child with disability, there is no handbook and we all cope in a different way. Just because we do not all show our suffering to you does not mean we arent crying inside or even that we don’t see you as a close enough friend to discuss things. It just means that maybe we don’t know how to act, or what to say. It may even be that we are still getting our heads around certain things, that we are on a knifes edge of laughing or crying. It maybe that we have spent a whole night worrying about something and crying and that actually we have cried enough tears that day.

There will be times at baby classes I look around and get sad at all the progress the other babies have acheived but that does not mean I hate seeing it, in fact I absolutely love it. Don’t feel like you can’t come and talk to me at these classes and Please don’t feel like you have to keep your babies achievements from me to spare my feelings, to be honest I love hearing that your baby is achieving all their goals as it means you don’t have to feel the hurt we do.

I may appear strong but believe me the only thing that keeps me going is my daughter and my wonderful other children, I can not crumble in front of them as I’m worried I would never get back to be the rock they need and when things are uncertain as a parent you need to be the rock.

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