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Probably...no, most certainly!...........This is the most difficult thing I've experienced in my entire life!!!! My baby died last September....Her name is Jimma..she turned seven last June 16th, 2009 (big breath...) ..O my!....just uttering those horrible words (...my baby died...) seems to choke my airway and zap my strength..
I have been searching my heart..my mind..trying to decide just how to begin to share her story.....our story. Not because I feel so important that without a doubt folks will want to know me....or that my life is just so interesting that millions will break their necks just to hear about it...noooooo
You see......Jimma was what people like to refer to as 'special'.....which, in my opinion, isn't quite fair. Isn't every child special?......in their own right? Don't we all come pre-packaged with our very own, personal 'special needs'?
Sooooooo.....whatever term needed to convey to you...to give you, in my bumbling way..a description of my little angel...well....I guess, I'll just say it...Jimma was 'special'.... Jimma was born with a very rare and life-threatening metabolic disorder called 3 Methylglutaconic Aciduria Type IV...it took about a year to get the official diagnosis. Also, we were told by her neurologic doctor that she had periventricular leukomalatia--the white matter surrounding the pooling area of her brain was 'mushy'; therefore, signals could not be transmitted correctly.....Her brain just couldn't tell her body how to work. In appearance, she seemed to have cerebral palsy. We were told at seven months that her liver was in stage three fatty, fibrosis.....kinda like cirrhosis of the liver--usually thought of as the alcoholic's disease... A doctor told us at that time not to expect her to see her first birthday.
Now, after you've read about bits and pieces of her life....seen photos...you decide for yourself. Although, I'll just say it now and get it out of the way......Jimma was most decidedly my special little girl!!!!!!...and will always be!!! And if you have a specially special child...or knows someone who does.....please feel free to enter into a conversation (don't they call it 'blogging'?) with me or anyone who passes this way. If you've lost your own special angel....maybe we can help strengthen each other in this time of overwhelming grief. If you want or need to share your child's story..well maybe we can do that, too.....
Oh, I guess you're probably wondering just why I'd do this...talk about the death of my child. You see....it's not her death I want to discuss..although this experience will surely have to be included... It is Jimma's wonderful life I want to share!! There are so many children born with..'special needs'. When a parent (or grandparent) first hears those dreaded words...o' my!!!!!..how the world comes crashing down!!!! And then....all the well-meaning (and I do mean that...for the most part..) advice from well-intentioned people!! Friends.....family.....medical professionals...even the clergy!!! So this is ..simply... the experience of one mama. oh!..and grandmama...I hope my experience helps someone. After all, isn't that what life's supposed to be about? Learning..growing..helping..sharing? ...............