How you interpret what is said to you tends to affect your understanding, and as a result, your expectations.
Words mean different things to different people.
I have been told at every medical appointment that they have been very pleased with lil D's development. So what does did mean?
To me, it meant that she is growing normally, as normal as normal can be. She has not had fractures since those super early days, even with falls (*touch wood*!.) So silently, I was praying and hoping that their early diagnosis of OI was wrong. I guess a Mum is forever hopeful.
So when the results of her Bone Mineral Density Scan showed her to be below the base line, it left me stumped, disappointed, and totally shattered. In fact it is so near to a level which would trigger monthly pamidronate transfusions, and that has left me totally worried. And you know what is the worst part? He gave me a letter for lil D's school for next year, stating her condition and what she is not allowed to do! That was just made it too final and too conclusive for me!
So what were they pleased about all along? That she has OI? Sigh!
Ok, I am not being rational here. They were probably pleased that despite her OI, she has not had fractures, her growth is not stunted, her eyesight is still good, her teeth are not all rotted or decaying. I guess I should be thankful. But unfortunately, that was not what I heard or understood their meaning to be at that time.
As I was expecting good news from the scan, I went totally unprepared for bad news. As a result I did not ask all those questions that are now cropping up in my mind. What do I do? Make an appointment and go back with all those questions? No way. That place gives me a dreadful feeling. Seeing all those other children with different disabilities, and illnesses makes me want to cry. I count my blessings that Lil D is no where near their condition.
Like the Persian proverb that says:
I scowled because I had no shoes on my feet, until further down the street I saw a man with no feet at all.
Well I know of someone with bigger problems on their hands than I do. This lil girl has already gone for one cardiac operation with another due this November, and she isnt even 2 yet! Have a read of this lil Brave Heart but please be prepared with a pack of tissues. It was for me at the very least a 3 tissue read!
Be Grateful for all your blessings!!