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It's been 2 years

post #1 of 45
Thread Starter 
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.
post #2 of 45
Quote:
Originally Posted by Kathryn View Post
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.
This made me cry. It's a beautiful way to spend the day with her...your love for her bleeds through your words, and your strength is so apparent to all of us!!!

And here I've been wallowing a bit today from pregnancy tiredness and worry about getting Connor's weight up...

Give Lily a hug for me, will you?


post #3 of 45
I saw your CaringBridge update, and just wanted to give you a big, giant

Please give Lily some extra hugs and cuddles from us, too. I know you don't know us IRL, but I think of you and your family often.
post #4 of 45
I remember you from the montage you posted about your babies' birth and Lily's illness...the loss of dreams is never easy, and I can only imagine that tomorrow might be a very, very bittersweet day. I hope that Lily can have a good day tomorrow, and that you will find the grace to really be in the moment. to you both.

Joni and kids, incl. Michaela :, 12, w/funky spinal cord, and Gabe , 10, w/autism and Down syn.
post #5 of 45
Oh Kathryn. I just can't even begin to imagine. I think you are one the wisest, kindest, most loving mamas I know, and Lily is so blessed to have you. I do think of you and your family often, and you're in my thoughts and prayers.
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post #9 of 45
I've followed your story from the time you had the triplets at home. I think of your family often esp Lily. I'm praying that Lily gets better soon and isn't in pain. Peace and strength to you.
post #10 of 45

I hope today goes smoothly



Chocolate sounds like a good idea to me too!

Sincerely,
Debra, homeschooling mom of 4 ages 12 (AS), 11 (SID), 9 (SID), and 5 (PDD-NOS, Apraxia, Dysarthria, OCD, Syndactaly)
post #11 of 45

You are in my thoughts.
post #12 of 45
I am thinking of you too Kathryn. Much love to you and Lily and your whole family.
post #13 of 45
We know too well - Brain injuries suck. It is amazing how fragile we are. I hope you have a day of peace and love.
post #14 of 45
Kathryn...Lily is so lucky to have you as her mom...I am SO sorry this has happened to you...it doesn't make sense at all and I can't imagine the daily struggle you must have. Even just reading about Lily makes my heart ache...I can only imagine what it must be like to be her mama. I just want you to know that seeing the love you have for your kids has been an inspiration to me.
post #15 of 45
I hope today is as peaceful as it can be for you and Lily both.
post #16 of 45
Thinking of you and Lily today. I'm so sorry she is in so much pain and not doing well. My heart goes out to you. It must be really hard. Sending so much love your way.
post #17 of 45
OMG, you're the mom with the homebirthing video! I remember seeing it and thinking how cool it was that the babies were so BIG when they were born, and I was sad because it was obvious just from the pic that my Brendon wasn't just tiny (4 lbs 14 oz at 37 1/2 weeks) he DEFINITELY had IUGR.
And then I saw how sick Lily got and it broke my heart, but I saw how she lifted her head up and I thought she'd beat it!
I'm SO sorry that you guys are still facing all these issues. It's scary how one stupid illness can change everything so quickly. HUGS, mama! She is as beautiful as ever - I can't BELIEVE how big she is now! I bet the boys are growing like weeds, too!
post #18 of 45
post #19 of 45
Thread Starter 
Quote:
Originally Posted by ShadowLark View Post
OMG, you're the mom with the homebirthing video! I remember seeing it and thinking how cool it was that the babies were so BIG when they were born, and I was sad because it was obvious just from the pic that my Brendon wasn't just tiny (4 lbs 14 oz at 37 1/2 weeks) he DEFINITELY had IUGR.
And then I saw how sick Lily got and it broke my heart, but I saw how she lifted her head up and I thought she'd beat it!
I'm SO sorry that you guys are still facing all these issues. It's scary how one stupid illness can change everything so quickly. HUGS, mama! She is as beautiful as ever - I can't BELIEVE how big she is now! I bet the boys are growing like weeds, too!
Yeah, unfortunately there is no 'beating it' with her. Her brain was so very severely damaged, she will never be able to do more than she is doing now (which is technically nothing).
post #20 of 45


-Angela
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