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#1 of 45 Old 02-16-2009, 09:37 PM - Thread Starter
 
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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.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
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#2 of 45 Old 02-16-2009, 09:42 PM
 
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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?



Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#3 of 45 Old 02-16-2009, 09:45 PM
 
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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.
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#4 of 45 Old 02-17-2009, 01:54 AM
 
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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.
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#5 of 45 Old 02-17-2009, 01:59 AM
 
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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.

Flowers, fairies, gardens, and rainbows-- Seasons of Joy: 10 weeks of crafts, handwork, painting, coloring, circle time, fairy tales, and more!
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#6 of 45 Old 02-17-2009, 02:01 AM
 
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#7 of 45 Old 02-17-2009, 02:19 AM
 
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To my husband I am wife, to my kids I am mother, but for myself I am just me.
we're : with and : and
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#8 of 45 Old 02-17-2009, 02:59 AM
 
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 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

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#9 of 45 Old 02-17-2009, 05:43 AM
 
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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.

Normal is just a setting on your dryer.
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#10 of 45 Old 02-17-2009, 09:36 AM
 
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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)
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#11 of 45 Old 02-17-2009, 10:48 AM
 
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You are in my thoughts.

He who can no longer pause to wonder and stand rapt in awe is as good as dead; his eyes are closed.  ~Albert Einstein
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#12 of 45 Old 02-17-2009, 10:57 AM
 
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I am thinking of you too Kathryn. Much love to you and Lily and your whole family.
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#13 of 45 Old 02-17-2009, 01:37 PM
 
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We know too well - Brain injuries suck. It is amazing how fragile we are. I hope you have a day of peace and love.
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#14 of 45 Old 02-17-2009, 01:49 PM
 
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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.
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#15 of 45 Old 02-17-2009, 03:19 PM
 
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I hope today is as peaceful as it can be for you and Lily both.

Rachelle, mommy to 8 year old boys! 

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#16 of 45 Old 02-17-2009, 10:21 PM
 
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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.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#17 of 45 Old 02-17-2009, 10:34 PM
 
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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!
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#18 of 45 Old 02-17-2009, 10:38 PM
 
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#19 of 45 Old 02-17-2009, 11:06 PM - Thread Starter
 
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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).

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
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#20 of 45 Old 02-17-2009, 11:46 PM
 
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-Angela
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#21 of 45 Old 02-18-2009, 01:52 AM
 
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Sending all my love, beautiful Kathryn. And to all your little ones and your partner too. Your post melted my heart all over again. A million billion s.
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#22 of 45 Old 02-18-2009, 02:37 AM
 
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Here's me I married then we had dd15 , dd11 , ds10 , and then and now we and I blog!
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#23 of 45 Old 02-18-2009, 01:14 PM
 
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Originally Posted by Kathryn View Post
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).
: I'm so sorry to hear that. How was your day yesterday mama?

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#24 of 45 Old 02-18-2009, 02:44 PM - Thread Starter
 
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It really sucked, actually. I got 1/4 of one movie watched with her. The boys destroyed the house, Dakota was being just awful, and Lily cried ALL day, no matter what I did. I'm worn out and want to go back to bed.
Lily gets her cast off tomorrow, so I'm hoping that it will make her in less pain and less miserable, but I'm really doubting it.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
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#25 of 45 Old 02-18-2009, 02:59 PM
 
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OMG, you're the mom with the homebirthing video!
I remember that video too now that it's pointed out. Gosh, what a wonderful moment. I hope you give yourself time to rejoice in that. Juju's homebirth was so nice. His brain injury occured at birth (or before - I think before), so I always feel like I really shouldn't have enjoyed his birth so much or something. But I know it was a gift.

Juju's injury isn't as severe, but I know how you feel having your other kids developing so rapidly. My kids are good with Juju, but I wish they could be as close to him as they are to eat other. I have hope for that.
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#26 of 45 Old 02-18-2009, 03:10 PM
 
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I'm the same way...I enjoy Charlie and she's such an awesome kid, but I grieve SO MUCH for the child she was before her brain injury. And I never even met that child. I only knew her kicking around in the womb. I feel like the child I carried died and Charlie is someone else entirely. She's still the same person, but everything about her has changed...even her personality. I know she would have been a different child than she is now. She's so desensitized to pain and trauma and so anxious about doctors and hospitals. She's not as attached to me as she would have been, having spent 2 months in the NICU and not being able to nurse, and needing so much nursing care in the home.

Enjoy your day. It's ok to be conflicted and feel happy and sad at the same time.
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#27 of 45 Old 02-18-2009, 03:26 PM
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(hugs)
this made me cry too
im so sorry
she is beautiful!
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#28 of 45 Old 02-18-2009, 04:46 PM
 
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Much love to you

Mother is the word for God on the hearts and lips of all little children--William Makepeace Thackeray
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#29 of 45 Old 02-18-2009, 07:39 PM
 
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I'm really sorry that it wasn't a great day. Really sorry. I hope that tomorrow's de-casting relieves some of her pain and y'all can have some good chocolate movie time.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#30 of 45 Old 02-18-2009, 08:06 PM
 
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-pixie, my dear, and (A-88), N-98, Littlest-06/00-08/00, J-03 & Little Miss Cotton Ball Button-03 (SN), S-05, Hope-loss 09/09, Bean-loss 04/10, and littlePopcorn due feb. 8th -11.
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