Being undiagnosed does not mean your OK.
My daughter is undiagnosed and if I had a £1 for everyone that has made some sort of comment about the fact she can’t be that unwell if they don’t know what is wrong with her I would be extremely rich!
I think people assume that doctors know everything, that all the conditions that cause serious illnesses are known and can be identified by a simple blood test.
This past week alone we have found out that when her muscles give out her heart gets tachycardic, that her kidneys are onto the next stage of kidney failure, and that she has started to have absent seizures.
All without a reason. All new symptoms to add to her complex list.
Last week we were celebrating that she has put on weight and so doesn’t need a feeding tube, the week before that we were overjoyed at the fact that we were told she won’t walk and yet she can now take 5 very wobbly steps.
So to be hit with the news that actually inside she isn’t doing well shattered us.
You have the days where you are screaming at the world at how life shouldn’t be like this, that no child deserves this, that your child doesn’t deserve this and then the next day you are singing out and so happy as they have done something so small and yet so remarkable that you are grinning from ear to ear with such proudness that you don’t know why you ever doubted the universe.
Life with an undiagnosed child is exactly the same, we may not have a label on what is wrong with my girl but we are on the same roller-coaster.
A roller-coaster no one thought they would be on but here we are on it. It is something that brings us together and when you have a child with a disability having people around in similar situations is just what we need to cope to know we are not alone, whether the disability has a label or not.
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