Wednesday, September 29, 2010

The Higher the Expectation the harder you fall

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!!


iml said...

Best thing to do is to see the doctor and ask him all the questions you have to give you a better idea what you must do.

Stardust said...

Dear SAHM,

Though I may not understand much, I feel you. Yes, I'm reminded all the time how things could have been worse, but God still pulls them together. And I'm grateful..

But that's just the spiritual part. And though getting the answers to your questions is hard, be brave for lil D. Am thinking of your family and saying prayers. Bless your family.


bp said...

*Hugs* i feel for you my dear, and i can imagine how very disappointed you are. but don't lose heart and like you said, keep hoping and keep trusting that God is in control. meanwhile, i hope the doc can shed more light on those v sound Qs you have. thanks for the reminder to count our blessings always.

it's almost Fri liao, time for your joke of the week :), Stardust had just reminded me that laughter is the best medicine and we know to come look for Dr SAHM ;p, thanks in advance!

pretzel said...

try emailing the Dr with your list of Qns?.. some drs are pretty nice in their email reply, and will definitely let u know if they prefer u drop by the clinic in person... at least they can prepare the answers for your list of Qns b4 they meet u...

JoMel said...

I'm sorry to hear this.. BUT, D has been growing normally, like you said no fractures despite falls. That's like, very very good, isn't it? Despite what the interpretation of the scan? So... perhaps you could get a second and if need be, a third opinion?

stay-at-home mum said...

Hi all
Yes, I have tried emailing the prof i/c of her case but have yet to have a reply. And it has to do with consulting the "father of OI" on it. Yes, we intend to travel to consult him. But we need to get approval first, so that her case notes can be released. its been 3 days, and Prof has still not replied. Guess I will wait another week, and if still no reply, I will make and appointment to see him personally about it. Keep your fingers crossed for me. Thanks.

NomadicMom said...

Hi. Guessed you were a bit stumped with the results of the scan. That us understandable. Perhaps you can call to ask if the email was received by the prof? Sometimes, it may be lost in the cyberworld.
Also, you might wanna read-up more just to get a list of questions that you can get the prof to answer when you see him.
it is a positive thing that she is growing well.... Count it a blessing that you know that the condition exists and you can take precautions/ safeguards.
Take care now!

stay-at-home mum said...

Prof did reply. Now pursuing our next course of action. Thanks to all for your suggestions. Taking things one day at a time :)

TripleJin said...

My boys and I will continue to pray for you and your family.

big hugs..