Having another baby after severely disabled child? - Mothering Forums
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#1 of 6 Old 02-24-2010, 08:21 PM - Thread Starter
 
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I don't post as much on here as I used to, so many of you all may not know me anymore.

Short run down: Lily is one of triplets and was born typical. At 4 1/2 months old, she had a very severe global anoxic brain injury caused by RSV meningitis. She is completely non-mobile, legally blind, non-verbal, is 100% GJ tube fed, will be starting TPN soon, and so on. Physical ability is like a 0-3 month old. (www.caringbridge.org/visit/lilymathis1)
I am currently pregnant and due in June with our 5th baby. Two of our other children are Autistic as well.

She is generally a very happy child and prefers to just be left alone, in her little comfy corner of the couch. However, she has really bad days where I'm not even able to put her down and even then, she's usually crying when I'm holding her. This doesn't happen often, maybe once a week or so.

I wasn't worried about this before, but have suddenly gotten hit with a slight panic. How am I going to do this with a new baby? How have other parents done this? Is the new baby just sometimes shafted or is the disabled child just sometimes shafted?
I had to deal with three newborns at once and 'turn taking' with them, but this is kind of different. I can't sling both a new baby and Lily and trying to hold a 23 lb rag doll while nursing a newborn is going to prove difficult.

I am her CNA and won't hire a nurse or CNA to care for her (have tried in the past for over a year, not interested in trying again). Same with respite care.
I have hired someone to help with laundry already and we're doing little things to help take some of the household weight off of me.
My dh also plans to take the summer off of school (he's a full time student), but I don't know how much that will help.

Any good tips from parents that have been there through this?

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 6 Old 02-24-2010, 08:57 PM
 
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Havent been through this but I wanted to offer ((((HUGS))))!

I hope this doesnt sound silly, but did you see that thread a week or so ago about the Signing Time mom, Rachel Coleman? Her dd is 9 and has CP and she wears her in a sling. Well I know that she has Leah, who is deaf and they are a couple years apart. I know shes probably busy but maybe try emailing her?

wife. dd1 : dd2
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#3 of 6 Old 02-24-2010, 09:22 PM
 
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No advice. I just wanted to say Congratulations!
I subscribe to and read your caringbridge journal, and you are an amazing, strong woman. I don't know how you're going to do this, but I know you have a tremendous amount of love for your children. And I know you are going to figure out a balance, just like you always have.

Sorry I'm not more help.

You can find me on Facebook. PM for info.
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#4 of 6 Old 02-24-2010, 09:51 PM - Thread Starter
 
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Thanks!
We're super excited, I'm just starting to have a little freak out. :

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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#5 of 6 Old 02-24-2010, 10:00 PM
 
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Also wanted to say congratulations and that you are an amazing women

Dirt worshiping, creatress Mama to Rowan and Alden - home birth loving, no circ, no vax, extended breast feeding, cloth diapering, baby wearing, cosleeping

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#6 of 6 Old 02-24-2010, 10:13 PM - Thread Starter
 
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Quote:
Originally Posted by Lindsay1234 View Post
Havent been through this but I wanted to offer ((((HUGS))))!

I hope this doesnt sound silly, but did you see that thread a week or so ago about the Signing Time mom, Rachel Coleman? Her dd is 9 and has CP and she wears her in a sling. Well I know that she has Leah, who is deaf and they are a couple years apart. I know shes probably busy but maybe try emailing her?
I did see that, I even linked it on my FB page. So very awesome of her.
I would e-mail her, but her Lucy is able to do much more than my Lily can (head support wise), so I'm not sure if she'd be able to offer any tips at all. I'm unable to wear Lily anymore due to her total lack of head control and the fact that her left hip is dislocated (and other must be in a certain position).

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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