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A statement of where I am in this moment...

JoJoGeeJoJoGee member
in Special Needs
In 8 days it will be upon us... Lily's scope. It is scary, exciting and overwhelming all at the same time. This could be THE scope, the scope that finally says, "Yes, that trach can be removed." If that happens, I am sure there will be more complex emotions to disect as we make hurried preparations for surgery and medical leave. However, if this is not THE scope, then a wave of disappointment will wash over me like the morning tide - forceful yet short lived. And, then, we will continue, as we have over the last 1.5 years, trying our best to live in the "now," until the next scope. When, once again, this mishmash of emotions will slowly overtake me until I am consumed. I find I cannot concentrate, and I am always on edge. Like a lion, stalking it's prey, I'm ready to pounce, but no matter how much I devour my hunger will not be satiated until the 12. I pray that this will be my last hunt, because I do not know if I can survive this hunger again.
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Re: A statement of where I am in this moment...

  • CaptainSeriousCaptainSerious member
    I can't imagine how difficult it must be to have test after test, and get no confirmation. I share waiting for the 12th with you, as that is the day on which M will undergo his FASD evaluation.

    In my heart, I know he has it. He shows so many of the behaviors, and while they could all be caused by other things, we know his biological mother was an alcoholic. I actually think I will be disappointed if they do not diadnoise him as having it, because he does not have the facial features and we can't prove his mother drank while pregnant. That means that we'll either have to find someone else who'll give us the label the one that we're not sure when or where we would share with teachers/friends/family/M/etc. But would make everything so much easier to understand and deal with or seek another possible cause for his delays, difficulties, and behaviors. Having FAS would help me understand when he can't reason things through or when he acts impulsively or when the gap between he and his peers becomes more and more obvious. Not having it means that we still have no idea how best to help him or to shelter him from the world he has increasing difficulty in with no explanation for his differences.

    I've never said this before, but I pray that they tell me we are right, and he has FASD. I also pray that your daughter's scope on the 12th is her final one. I'll be thinking of you that say!
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  • kar5162kar5162 member
    I will be thinking of you and Lily. I hope it goes well.
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  • realisticdreamsrealisticdreams member
    How nerve racking and emotional!  I hope it's THE one!!!  
    Fingers crossed for you guys.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • JoJoGeeJoJoGee member

    Thanks everyone!  I'm trying everything I can to keep myself distracted in the meantime.  It's just...I'm not always successful. 

    imageCaptainSerious:

    I've never said this before, but I pray that they tell me we are right, and he has FASD. I also pray that your daughter's scope on the 12th is her final one. I'll be thinking of you that say!

    Captain,

    I totally get where you are coming from.  I felt the same way about Lily's CP diagnosis.  I knew she had it, but I needed that confirmation.  I'll keep you in my thoughts on the 12th as well!

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