I picked Lily up from the sitter last night. Found out she was running a 102 temp. Ugh! Luckily, some tylenol really helped her. She seems like she's doing better today.
I can't wait to be off tomorrow. Do nothing but cook, play, and eat.
I'm excited for her. I hope she feels up to pigging out on all sorts of goodies.
I decided to a mini-list of things I'm grateful for:
1. My daughter - for all the troubles that she has, she's still a blessing.
2. My friends - I have very few friends that actually live near me, but the internet is a wonderful thing. I have so many friends who I can rant about men and various other things with, or just talk. Knowing they are there when I need them is a great thing.
3. My job - I don't particularly like it, but it does pay bills. In this economy, even having a job is something to be super, super thankful for.
4. Having a car that runs, even if she protests sometimes.
5. A roof over my head.
6. Food in my belly.
7. Pepsi. 'Cause Pepsi's just awesome.
8. Supernatural - because those two men have given me some very nice fantasies.
9. Outrageously printed socks. Just because everyone needs fun socks.
10. God - because....well, I don't know exactly. Just because.
The Feisty Lily
Wednesday, November 24, 2010
Tuesday, November 23, 2010
Things to Say
Some of things you say about your child that you would never expect to hear yourself say...
"I think Lily's part frat-boy and nobody told me."
My child is very gassy. To make it worse, when she farts, she will peek up at you and then bust out this huge grin. You know she's proud of herself.
I'm ordering a sign from MLP decals that has a no flames symbol on it, then below it says "Oxygen and OTHER gasses present" with a stick figure of a baby with a stinky diaper beneath it. I'm going to hang it on her door.
Something you would never expect to have to say to your child:
"Stop licking candy wrappers from the trash bin!"
Whenever there is silence in the house, and she's there...you know she's doing something she shouldn't. I just didn't expect her to dig through our daily pail of dirty diapers to find a twix wrapper...and lick the chocolate off. At least I hope chocolate was all that was on it.
--------
We got Lily's Tracleer yesterday. She started it last night. I have to put on gloves, get a pill from the bottle. Then, I dissolve the pill in 10 ml of water. Finally, I draw up 1.52ml of that suspension, and give it to her. They only make Tracleer in two strengths. The lowest strength is 62.5 mg, so obviously that's a little much for her.
Poor baby was miserable last night. Snotting so bad that she actually had to sleep without her canula, because it had mucous in it. We have others that we could have put on her, but figured it wouldn't do any good.
Today is a good day for me in terms of how I'm doing emotionally. It is a 'normal day' so I don't feel sad or anything like that. I'm eager to go pick her up and give her some snuggles.
----------
A friend of mine on facebook posted about how she loved that other March babies were doing so well, but it kind of bothered her because her child wasn't doing as well. Her child is a gorgeous little girl recently diagnosed with autism. She wondered if there was something wrong with her for the fact that she was disappointed that she didn't have a perfect 'normal' baby. I didn't say anything to her because I didn't know what to say. I wanted to say so much though.
Luckily another march mommy had the perfect words. "Its okay to grieve for the loss of normal."
I wished I could make her understand that I know what she means. That I grieve for the loss of a normal Life for Lily all the time.That you can still be happy with your baby, that you can still treasure every moment with them, and still grieve for what might have been, or what would have been. With Lily, I grieve for her because I can't see her participating in a lot of the active play that is a part'n'parcel of normal childhood. I can't see her riding a bike because of the toll it will take on her breathing. I don't think she'll ever be able to ride rollercoasters at Kings Island because it wouldn't be safe for her. I grieve for the memories we will never make because of this disease.
In some ways, I have it easier than this Momma, because Lily can communicate with me. However, I think its easier for me to put myself in her shoes than for the mommies who have perfectly healthy/normal babies.
I wish I could give her what I cling to - which is the knowledge that the memories that we make with our children are so much more special because we won't ever a lot of those 'expected normal' memories. That our celebrations are ten times more joyous because the struggle to get to that point for our babies was twice as hard, if not more.
I just didn't know how to say it to her.
However, I have faith in her- she is an awesome momma, and that little girl will rock some serious socks =)
----------------
I grieve for the loss of the life I wanted Lily to have. I grieve for the dreams that had already taken root within my heart. I grieve for normality, when I've never had it to begin with...
--------------
NO!
Lily, do you need a diaper change?
NO!
Lily, do you want some food?
NO!
Lily, come here.
NO!
Lily, are you sleepy?
NO!
......I take that back, I have had normal a couple times. LOL.
"I think Lily's part frat-boy and nobody told me."
My child is very gassy. To make it worse, when she farts, she will peek up at you and then bust out this huge grin. You know she's proud of herself.
I'm ordering a sign from MLP decals that has a no flames symbol on it, then below it says "Oxygen and OTHER gasses present" with a stick figure of a baby with a stinky diaper beneath it. I'm going to hang it on her door.
Something you would never expect to have to say to your child:
"Stop licking candy wrappers from the trash bin!"
Whenever there is silence in the house, and she's there...you know she's doing something she shouldn't. I just didn't expect her to dig through our daily pail of dirty diapers to find a twix wrapper...and lick the chocolate off. At least I hope chocolate was all that was on it.
--------
We got Lily's Tracleer yesterday. She started it last night. I have to put on gloves, get a pill from the bottle. Then, I dissolve the pill in 10 ml of water. Finally, I draw up 1.52ml of that suspension, and give it to her. They only make Tracleer in two strengths. The lowest strength is 62.5 mg, so obviously that's a little much for her.
Poor baby was miserable last night. Snotting so bad that she actually had to sleep without her canula, because it had mucous in it. We have others that we could have put on her, but figured it wouldn't do any good.
Today is a good day for me in terms of how I'm doing emotionally. It is a 'normal day' so I don't feel sad or anything like that. I'm eager to go pick her up and give her some snuggles.
----------
A friend of mine on facebook posted about how she loved that other March babies were doing so well, but it kind of bothered her because her child wasn't doing as well. Her child is a gorgeous little girl recently diagnosed with autism. She wondered if there was something wrong with her for the fact that she was disappointed that she didn't have a perfect 'normal' baby. I didn't say anything to her because I didn't know what to say. I wanted to say so much though.
Luckily another march mommy had the perfect words. "Its okay to grieve for the loss of normal."
I wished I could make her understand that I know what she means. That I grieve for the loss of a normal Life for Lily all the time.That you can still be happy with your baby, that you can still treasure every moment with them, and still grieve for what might have been, or what would have been. With Lily, I grieve for her because I can't see her participating in a lot of the active play that is a part'n'parcel of normal childhood. I can't see her riding a bike because of the toll it will take on her breathing. I don't think she'll ever be able to ride rollercoasters at Kings Island because it wouldn't be safe for her. I grieve for the memories we will never make because of this disease.
In some ways, I have it easier than this Momma, because Lily can communicate with me. However, I think its easier for me to put myself in her shoes than for the mommies who have perfectly healthy/normal babies.
I wish I could give her what I cling to - which is the knowledge that the memories that we make with our children are so much more special because we won't ever a lot of those 'expected normal' memories. That our celebrations are ten times more joyous because the struggle to get to that point for our babies was twice as hard, if not more.
I just didn't know how to say it to her.
However, I have faith in her- she is an awesome momma, and that little girl will rock some serious socks =)
----------------
I grieve for the loss of the life I wanted Lily to have. I grieve for the dreams that had already taken root within my heart. I grieve for normality, when I've never had it to begin with...
--------------
NO!
Lily, do you need a diaper change?
NO!
Lily, do you want some food?
NO!
Lily, come here.
NO!
Lily, are you sleepy?
NO!
......I take that back, I have had normal a couple times. LOL.
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