I have been struggling with guilt regarding feeling overwhelmed with the prediagnosis journey I am on with my 14 year old. I feel I have no right as I am not the one living with the condition. I am always positive in public and with my family and I know that really it's not a big deal.... but sometimes it's just too much for me to get my head around.
Am I the only one?
It's Ok to be feeling this way and you have every right to your feelings - it may not be you being diagnosed, but you are living with the condition, you are sharing the path of your precious one on this journey - it's your journey too & the responsibility that comes with it can sometimes feel overwhelming. The feelings that come with it can leave you exhausted. It can be extremely lonely, it can be terribly frustrating. You often find your having to repeat yourself and kick & scream to be heard sometimes. And it can feel like it's taking forever (5.5 years for my oldest, 2.5 years for my middle youngest & currently in process with middle biggest) - but hang on in there, you're doing great!
And even if you know in your heart of hearts that the condition is there and all of the professionals in the various meetings on the road to diagnosis are in agreement - when you get that final letter confirming it - it's still a thump in the gut. And I think it's that way because your instinct to protect prevails and you are frightened for your precious one. You are frightened of the unknown. Of what this diagnosis means for them. Of how you can kit them out with the tools they will need for this life long condition. Of how you can change the world for them so that they don't have to face adversity.
It's a hell of a lot to get your head around, it is a massive weight to bare and you have absolutely nothing to feel guilty about love - not one bit.
There are a few good groups on facebook ran by parents who I find a wonderful source of support. People who are walking your path. Who have days where they could scream. Who have days where they are amazed by their precious ones. Allsorts.
Just because the path may be lonely sometimes, it doesn't mean that you shouldn't feel unsupported.
You're a rockstar, you're being there for your kid, you're strong, keep your chin up love, you'll get there.x