Well, i appear to have landed in New Holland and i dont like it one little bit. The tulips seem to be dying and although oh so vaguely familiar scenery it doesnt feel right. No.
Have been researching this 22q and not liking what i see... Not that i dont like the syndrome (who likes a syndrome?) I mean it doesnt sit with me. Really doesnt. No.
Well i can vaguely make out what the doctor means, but i dont 'feel' it.
LOL- how stupid of me. i have fallen into the whole 'if he has to have a syndrome Williams is the one to have' trap and now i have spent all this time familirising myself with WS and falling in love with these beautiful kids and their families and suddenly its as if someone is threatening to cancel my visa and ship me off to another country!
I reckon the 22q kids look more like Lachie than Jaiden and there is nothing wrong with Lachie.. - Hmm that didnt really come out right - its an ear shape thing...
What about the passion for music?
The out going nature? - everything i have read about 22q implies those kids are socially awkward because they are shy as opposed to because they like to hug complete strangers.
Although WS and 22q are quite similar in several ways - eg heart defects, reflux etc and total opposite in others eg Low Calcium probs with 22q as opposed to high calcium probs with WS.
And Noses... ws = short turned up, 22q = long not turned up nose - Jai has a short not turned up nose so where does that leave him?
I think what struck me so much about WS was not just reading the fact sheets so much as 'meeting' the families and hearing the behavioural similarities, watching the videos and recognising the way they run and talk, the facial expressions the WS kids tend to pull - you guys know the ones - and the fact that i can see Jaiden in every one of the kids on this blog role in various ways.
im drivelling.. sorry im tired - i really should be in bed, but ive been lying awake thinking about this new holland that i may or may not have to make a big part of my future and i just dont feel it. I dont know i guess i have reached the "acceptance" stage with WS and if its not WS i am going to have to go back to square 1 aka "denial".
Does anyone know if there are Williams Kids with cleft Uvulas or palate problems?
ugh. ITS ONLY A MONTH KATIE!! GET A GRIP GIRL!!! after all this, its only a month.
Subscribe to:
Post Comments (Atom)
6 comments:
A month can seem like a lifetime. Your visa will not be revoked. No matter what syndrome Jaiden has we are all moms of kids with disabilities. Try to hang in there. We love you.
I just read the article, and no you are not paranoid. Jai is an individual, he may not ever fit the full criteria for any syndrome. Even our WS kids do not always fall into the characteristics. They defy odds and in the end are themselves, not a syndrome. So what you read about DiGeorge, or Williams is just a guide to help you on your path to helping Jai, not a definition of your wonderful little boy. I told you, you are my sister, remember that, it is the journey that defines our bond, not a DX.
XOXO
Amy
You are in my thoughts. I am sorry you are in so much pain. Remember that no matter what, he is still the same little boy.
That's right Katie! We already have a bond that can't be broken by a dx. We are here for you! Amy's right you can't fit our kids into a mould. They have their own personalities and unique genetics. Try not to look into it too much until you get the test back. You will just drive yourself mad. In the meantime, just know that we are here for you, whatever kind of day you're having. We love you Katie, and your beautiful, special, little boy too!!!!!!!!!
Heather
I'm sorry that you didn't get some definitive answers at the appt, it must be frustrating to go through all that, and now have to wait another month for the blood test results. But you never know, it still might show WS and then you'll already have all that research under your belt since that is what you've been preparing for. I pray this month passes quickly so you can get some answers soon!
I hope this month flies by for you. Maybe you should just chill back on the research until you get some definitive answers so you don't make yourself crazy with "what ifs" and "what abouts". Our kids don;t all fit the profile to a T, some have more issues than others, some have different issues. It may be that way with Jaiden too. Ugh! I feel your frustration~ We're all here for you no matter what!
Post a Comment