She can pullup on anything (seriously, anything. She is very sweet with babies and animals. So what if she can’t stand unassisted? So what if after 31 months we are still feeding her every meal? So what if we have to have awkward conversations with the sales associate at the mattress store that she actually doesn’t need to tell us to tell our child to not jump on the mattresses? (Our girl physically cannot jump.) Who cares! This journey of ours is not easy it is not temporary and it is a veritable rollercoaster. Whenever I find myself wanting to dive headfirst into the self pity and to wallow there for a moment, or several moments, I have to flip through pictures of my girl. I blame my momentary glibness on the bad week we had with seizures and irritability and general fussiness. I announced to the newcomer in the larger liss group, “Yeah, well my kid is a 6 and she can’t walk or talk or stand unassisted or feed herself and all the other 6s can and were able to well before age 2 ½.” BAM! My liss mama friends bring me back to earth back to myself back to my Goo and all the AMAZING things she CAN do. These girls could feed themselves, could sleep in toddler beds, and they had never heard of “infantile spasms.” Alas, I digress. Most of these girls were walking before age 2 and most definitely by age 2 ½. These girls were functioning at a higher level than Madeline. Yet, as I entered into the support group for the “6s” (i.e., subcortical band heterotopia/double cortex syndrome), I became disheartened. In the beginning, that “6″ diagnosis meant EVERYTHING TO ME. I suppose the purpose of my comment, just like every one else who chimed in, was that the gradient is a pile of donkey poop. And I essentially said as much in our support group. While she gets the classification of a “6,” she is not doing things like other “6s” are.
Yet, within the “6s” Madeline is more severe. This is supposed to mean she is on the milder end of the spectrum. The gradient goes from 1 to 6, with 1 being the most severe, 3 being the most common, and 6 being the most mild. You think if your child ranks high on the spectrum, then surely you can make it out alive! Though, not every child has had their “number read,” so to speak. For some, you think this number is the secret to your salvation, especially if your child is diagnosed at a very young age like our Madeline was. When you enter the liss circle, you hear about the gradient and you get curious. In summary, a newer mom to the liss family inquired about the gradient of the lissencephaly spectrum. It wasn’t one of my snarkiest, or my darkest, but I was called out by two of my closest liss mama friends. I made a comment in a support group the other week. Note: When you embed the widget in your site, it will match your site's styles (CSS).When the Seizure Monster is in play, warm squishy thoughts are at bay.
#Fill me up buttercup album code
Get the embed code Tenelle - For the Lovers Album Lyrics1.Fill Me Heart Beats For You4.Set Me Free5.ShineTenelle Lyrics provided by The feeling so good I never wanna stop no The feeling so good i never wanna stop no The vibe that you're giving me is good for my health I've been tryna keep my heart up on a shelf I never been the one to run from the rainĪnd when I go out I always leave a tip baby keep the change
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