Monday, October 30, 2006
The fear creeps in
After I speak with the pediatrician, it takes me a few days to fully digest the information. I lay awake at night and replay the conversation in my head. I always remember the major things immediately; but less critical things, like the names of certain possible diseases or things to research, they come to me later. Yesterday I had an "A-HA!" moment. I remembered the pediatrician named some disease or condition that involved the term "leuko" when she was talking about demyelination, so I typed "leuko demyelination" into Google and came up with the answer. Leukodystrophy . This scares me. From what I have read, there is no cure for these types of disorders. They are progressive, and they end in...God, I can't even say what they end in. They end in my biggest fear. The fear that whispers in my ear. The fear I try to practice facing in my mind, but can't. The fear that makes me sick to my stomach to dwell on. I can't tell you what that fear is, because I can't bring myself to say it aloud, but you know what it is. Saying it aloud gives it validity and I cannot do that. This is as far as I go with it, and then I will tuck the fear away again. These disorders are just one of the possibilites that the doctors are looking into, there is no need to be fearful yet...but still it creeps in.
Posted by Kyla at 12:55 PM
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((((Hugs)))) I'm thinking of you and your family.
Kyla, I wish we were neighbors so we could talk it all out and I could just be there for you.
All I can do is second what ddm and raehan said and add hugs to the growing number...
Oh boy... I'm thinking of you constantly - I'm glad you are managing to stay on top of the fear, but it must be very hard. I hope the hospital trip goes well (I'm afraid I don't have any advice for you - but what you've planned sounds very manageable).
It's hard to read everything and not be affected, but try and step back and not look at outcomes. The reason I say that is 1) they always give you worst case scenario and 2) the families/patients that do well, move on with their lives quickly and don't talk about what happened. The outcomes of Austin's infantile spasms, if I believed what I read online, was severely mentally retarded with little cahnce to lead a normal life....but you know what? He is a typical 4 year old. It took 2 years of therapy to get him there, but he does everything a 4 year old should...EXCEPT use the potty, but we are working on it and the ped keeps telling me in the scheme of things it's minor.
So keep reading, keep researching, but DON'T focus on outcomes.
Oh Kyla! My heart hurts for you. Try not to be scared right now - the doctor is just going through things that need to be ruled out rather than saying that disorder is likely.
I do know how you feel - they suspected that my baby had Cystic Fibrosis at the beginning of the summer, and I spent a whole month with a cold fear right in my marrow - but she didn't, and my fear was for nothing. Try not to be scared and we're praying for you.
Wow. So eloquently written, yet I know that your primary aim is not art, it is real emotion. Nonetheless, what you’ve written is beautiful, but of course scary also. Of course we hope for something easy to fix. Of course we hope for a full recovery. And I am so glad you are putting your thoughts here, even if they are raw and represent something possibly frightening, and definitely scary. ((hugs))
Oh my God, Kyla. You are being so strong, but it must be incredibly difficult to be going through this. I will be saying prayers for you and your family.
Oh my gosh...
I guess the first suggestion I have is to take a spiral notebook with you when you go to the doctor. Write down the possibilities and ask them how to spell it so you know for sure.
Second, try not to worry about the unknown. You can't possibly start to worry about the "what ifs". You can worry once you have a diagnosis and then proceed from there. It's just not in your best interest to start worrying. Easier said than done, I know.
Finally, I hope you are going to a "pediatric" specialist for your child. Pick the biggest academic medical center nearest you and get the best doc you can. No doc will ever tell you they don't have enough experience with these types of kids, just follow your gut.
Once you have a diagnosis, go to the best academic medical center in your area and check out their website-find the pediatric doctor that specializes in your child's condition-meaning he does research and publishes about the disease. Then you know you have the best and can sleep at night.
Peace and hugs.
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