Tomorrow is the 2 year anniversary of Lily's injury. (www.caringbridge.org/visit/lilymathis1 for backstory)
I don't know what to feel. I love Lily. She's beautiful and amazing and makes me laugh on a daily basis.
But I miss my baby. I want MY Lily back. My little 4 month old that was almost crawling. The one that snuggled with Max and held his hand any chance she could get. I look at Lily now and just cry thinking of what could have been and how much has been lost.
She's in so much pain all the time. Seizures, constantly, every few minutes. She's miserable from this stupid cast (comes off Thursday), she's puking 5-15 times a day still, puking up dark green bile that burns her throat raw, then getting nose bleeds and bleeding ulcers from the f-ing bile. She's getting rashes every day (brain issue) that itch really bad, but because she can't even control her hands to scratch, she just screams in pain. I hate this for her.
She's had a few good days in the past 6 weeks since the surgery. She smiled a couple times this week. A couple.
I'm just so sad for her. For us. For her siblings, especially Max. They were so so close and now they try their hardest to include her, but it's not easy.
I'm going to sit with her tomorrow, eat a bunch of good chocolate, drink a bit/lot, and just snuggle with her while watching some movies. I want to spend tomorrow loving her and treasuring what time we have left with her, instead of being bitter, angry, and sad, like I am now.
I don't know what to feel. I love Lily. She's beautiful and amazing and makes me laugh on a daily basis.
But I miss my baby. I want MY Lily back. My little 4 month old that was almost crawling. The one that snuggled with Max and held his hand any chance she could get. I look at Lily now and just cry thinking of what could have been and how much has been lost.
She's in so much pain all the time. Seizures, constantly, every few minutes. She's miserable from this stupid cast (comes off Thursday), she's puking 5-15 times a day still, puking up dark green bile that burns her throat raw, then getting nose bleeds and bleeding ulcers from the f-ing bile. She's getting rashes every day (brain issue) that itch really bad, but because she can't even control her hands to scratch, she just screams in pain. I hate this for her.
She's had a few good days in the past 6 weeks since the surgery. She smiled a couple times this week. A couple.
I'm just so sad for her. For us. For her siblings, especially Max. They were so so close and now they try their hardest to include her, but it's not easy.
I'm going to sit with her tomorrow, eat a bunch of good chocolate, drink a bit/lot, and just snuggle with her while watching some movies. I want to spend tomorrow loving her and treasuring what time we have left with her, instead of being bitter, angry, and sad, like I am now.
:, 12, w/funky spinal cord, and Gabe 
, 10, w/autism and Down syn.
Her brain was so very severely damaged, she will never be able to do more than she is doing now (which is technically nothing).
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