I believe every post I've done has been specifically about Lily or her problems and dealing with them- and that's great. That's primarily what this is meant for. However, in this post I'm going to ramble a bit, I think.
I asked on FB today - "Remember when we were actual people, mommas?" I love my daughter to pieces, but I feel like I've lost a good portion of my identity to her. That's not necessarily a bad thing, its just something to reflect upon.
Even when she is at someone's house, I still think about her. I think I can't get shitfaced because she might need me. I call to check on her. I'm so exhausted generally that I don't want to go out and party or something. I just want to take a long bath, read a good book, and go to sleep.
I can't remember the last indepth conversation I had that didn't involve her. I used to know Arabic. I don't remember anything more than the basic greeting now. Its amazing the things that I'm not anymore. So I'm going to amuse myself and list what I still am.
1. I am an avid reader. (Baby or no baby, I need to at least read a couple chapters every day.)
2. I am opinionated.
3. If I were a jewel, I'd be a diamond. I'm ridiculously strong, and yet just hit me the right way/with the right thing, and I'll shatter into a thousand pieces.
4. I am a dreamer. When I'm laying in bed at night, I dream about what it would be like to be loved. What it would be like to be special. What it would be like to be something more than I am.
5. I am a potty-mouth. You have seen evidence of it. The F word is probably my favorite, but I have a triple-threat that I pull out when I'm really frustrated. Sh**! *stomps foot* F***! *stomps foot again* D***! *slams hands down on nearest surface* When I get to that point, people are generally backing away from me.
6. I am a believer in God. I have my issues with him. I hate him sometimes. I love him others. However, no matter how I feel about it, I believe that He exists.
7. I am a dog-lover, and a cat-hater. Well, I hate all the friendly cats. I like the aloof ones who only love you for your food.
8. I am someone who cares too much about things, but shows that I care too little. Defense Mechanism.
9. I am intelligent. Half my brain-power is on Lily right now, but I've intimidated more than a few people intellectually.
10. I am a sex fiend. I'm often too tired to do anything about it, but I love me some raunchy sex!
However, you know, none of those is as important as this one...
11. I am a mother.
My daughter is my present, and my future. The past is behind me. No point in dwelling on it. I've got enough to do just dealing with the present, and running from the future.
Oh, yeah..
12. I am sleepy.
The Feisty Lily
Thursday, December 16, 2010
Wednesday, December 15, 2010
Good news at last!
Well, as you all probably know, I've been struggling trying to get Lily medical coverage. It has been a huge worry! Medical bills have been piling up around my ears!
Yesterday, I got a call from Children's Homecare. The nurse told me she wanted to schedule Lily's synagis injection. I told her no. It wasn't a necessity, and Lily didn't have insurance yet. The shot is like $1000.00. She told me that Lily *did* have insurance. I thought it had to have been a fluke in their records from where Lily had insurance previously. She said she would verify and call me back.
Like 5 minutes later she called me back. She said that Lily had been approved for the shot through Medicaid. That she had Medicaid. It was on a monthly basis, but she had it. Well, I went home and was looking through my mail. I had a letter of approval from BCMH (the Beaurea for Children with Medical Handicaps). It stated that Lily was approved for BCMH, but her primary insurance provider was Medicaid.
Needless to say, I was extremely confused. Hopeful, but trying not to let my hopes get too far up.
Today I called Homecare back, and they gave me Lily's medicaid number. I called the Medicaid Consumer Hotline, and basically just said "I just need to know three things. 1. Does she actually have medicaid? 2. When did she get approved for this? 3. When do I have to reapply. Is it monthly?"
The answers were "Yes. November 1st. Its ongoing."
Thank you Lord! thank you thank you thank you thank you thank you!!
I was still confused because I never applied for Medicaid. I applied for Caresource and I hadn't even had that appointment yet. However, what I found out is this...
To qualify for BCMH, you have to qualify for Healthy Start/Medicaid. When Dr. Daniels' nurse put in the application for BCMH, Lily automatically 'applied' for Medicaid because any BCMH applications are kicked through Medicaid first because BCMH is a last resort payer. Lily qualified.
Again, Thank God!
So, I immediately got on the phone to call her oxygen company..only to find out they already knew. Homecare already knew. Apparently I was the only one that didn't know yet! Haha! So, this afternoon Wrencare will be coming out to give me some much needed supplies (like 2 50 ft oxygen cords and stuff).
Now I'm on the search for an O2 backpack. I want Lily to have a lot of mobility when we're out and about. The basic holder that they give us is just a shoulder-strap thing. I need a backpack small enough to fit Lily, but large enough to hold a portable oxygen tank. I might end up improvising with something. I just don't know what. Anyways, its not a huge concern. If nothing else, I'll get one of the adult 02 backpacks, carry it myself, and just give Lily a long cord and hope she doesn't trip too many people! LOL.
Oh, my goodness. I needed this. I needed this break. I needed SOMETHING to go right.
Everyone tells me I'm strong, but this last week has put me at my breaking point. Just at the "I can't do this. I can't take this. I can't.. I can't...I CAN'T!" There are still lots of things going wrong, but this one little thing is such a blessing. Well, its not little considering how expensive her medications are, but you know what I mean.
So, pardon me while I go do a booty-shake.
Yesterday, I got a call from Children's Homecare. The nurse told me she wanted to schedule Lily's synagis injection. I told her no. It wasn't a necessity, and Lily didn't have insurance yet. The shot is like $1000.00. She told me that Lily *did* have insurance. I thought it had to have been a fluke in their records from where Lily had insurance previously. She said she would verify and call me back.
Like 5 minutes later she called me back. She said that Lily had been approved for the shot through Medicaid. That she had Medicaid. It was on a monthly basis, but she had it. Well, I went home and was looking through my mail. I had a letter of approval from BCMH (the Beaurea for Children with Medical Handicaps). It stated that Lily was approved for BCMH, but her primary insurance provider was Medicaid.
Needless to say, I was extremely confused. Hopeful, but trying not to let my hopes get too far up.
Today I called Homecare back, and they gave me Lily's medicaid number. I called the Medicaid Consumer Hotline, and basically just said "I just need to know three things. 1. Does she actually have medicaid? 2. When did she get approved for this? 3. When do I have to reapply. Is it monthly?"
The answers were "Yes. November 1st. Its ongoing."
Thank you Lord! thank you thank you thank you thank you thank you!!
I was still confused because I never applied for Medicaid. I applied for Caresource and I hadn't even had that appointment yet. However, what I found out is this...
To qualify for BCMH, you have to qualify for Healthy Start/Medicaid. When Dr. Daniels' nurse put in the application for BCMH, Lily automatically 'applied' for Medicaid because any BCMH applications are kicked through Medicaid first because BCMH is a last resort payer. Lily qualified.
Again, Thank God!
So, I immediately got on the phone to call her oxygen company..only to find out they already knew. Homecare already knew. Apparently I was the only one that didn't know yet! Haha! So, this afternoon Wrencare will be coming out to give me some much needed supplies (like 2 50 ft oxygen cords and stuff).
Now I'm on the search for an O2 backpack. I want Lily to have a lot of mobility when we're out and about. The basic holder that they give us is just a shoulder-strap thing. I need a backpack small enough to fit Lily, but large enough to hold a portable oxygen tank. I might end up improvising with something. I just don't know what. Anyways, its not a huge concern. If nothing else, I'll get one of the adult 02 backpacks, carry it myself, and just give Lily a long cord and hope she doesn't trip too many people! LOL.
Oh, my goodness. I needed this. I needed this break. I needed SOMETHING to go right.
Everyone tells me I'm strong, but this last week has put me at my breaking point. Just at the "I can't do this. I can't take this. I can't.. I can't...I CAN'T!" There are still lots of things going wrong, but this one little thing is such a blessing. Well, its not little considering how expensive her medications are, but you know what I mean.
So, pardon me while I go do a booty-shake.
Thursday, December 9, 2010
Saying all the wrong things / Thank you for the Memory
There are certain things I'm told when someone finds out that my daughter has a chronic illness that drive me up the freakin' walls. I know people are trying to be reassuring/encouraging, but there are some things you just don't say. At least to me. Everyone is different, so I'll speak for myself only here.
Please understand that I'm currently going through the Anger part of the grief cycle. I can even identify now that my 'tone' is much harsher than it normally is. There might be strong language. You have been warned.
"You gotta stay positive."
No, really? You don't think I know that? You don't think I fight to stay positive every day? You try facing this every day, and staying positive. You stupid fuckwit. Why in the world would you say this to someone? What is is going through your head? Think before you speak, dingdong. If you can't say something reasonable, just keep your mouth shut. Ninety-nine percent of the time, if I'm informing you that my daughter has a chronic, incurable, illness, I'm not telling you because I expect you to say something profound, or to say anything at all. I'm telling you because I felt you needed to know for some reason.
"Well, they are coming out with new treatments for stuff all the time."
No shit, Sherlock! Thank you, Captain Obvious. Guess what? I knew that too. Chances are that I know more about the treatments in the pipeline than you do, because its my daughter. Idiot. Sometimes if something is blatantly obvious, you do NOT have to voice it. Trust me.
"Maybe she'll grow out of it."
If its incurable, chances are she's not going to fucking "Grow out of it". Enough said.
What you CAN say:
"Dude, that freaking sucks!"
This is one case where stating the obvious is okay. Its okay because you're not thinking too hard about it. Its okay because it does freaking suck, and sometimes just someone else acknowledging that is all that I need. When someone responds like this, my thoughts are along the lines of 'Thank you for understanding.'
"I'll pray for her."
This one too is perfectly acceptable. That one phrase offers comfort, understanding, and is nice and simple. Again, its one where you're not thinking too hard about it. Do you see a pattern forming here? Your initial responses sometimes are the best.
"Sorry to hear that."
Its simple, honest, and conveys understanding of the situation.
I honestly don't blame people for saying stupid things most of the time. I generally just kind of shrug an acceptance of their response when they say something I think is stupid. I just had to get my thoughts out here.
-------------
A memory:
I'd went to the babysitter's house to pick her up, and was greeted in her usual way. Her voice declaring "MOMMY" as soon as I'd opened the door, and her hands extended straight up over her head with a following demand of "UP". It didn't matter to her that I was still a few feet from her. When I denied her, as I initially do because I'm trying to look through her backpack to see if there's anything I need to share with the babysitter, crocodile tears flowed down her chubby cheeks. As usual, I laughed at her because we go through this almost every day. She knows she's going to get picked up and given loves, but she wants it done on her terms and no one elses.
I chatted with the babysitter, picking Lily up after a minute, and sitting her on my lap. As usual she squirmed and wiggled, wanting to get down. In Lily's world, "UP" at the babysitter really means "up long enough for loves, and then you'll let me down so I can rip and race for a few more minutes". She did eventually get let down, and after a little bit more conversation with the babysitter, I tried to get her coat on her.
Everything was pretty much business as usual until Bob walked in the house. Bob is the babysitter's husband, and Lily has him wrapped around her little fingers. As his lanky figure disappeared into the kitchen, she looked at me with those wide gray eyes, and solemnly asked "Cookie?"
"No."
"Cookie!" More insistent this time. Bob regularly gave her cookies, and she was bound and determined to have her cookie. It didn't matter that we were ready to head out the door, and she was inside a warm house wearing a warm coat.
"No, Lily. We're getting ready to go, and you aren't allowed cookies in your carseat."
"Cookie!" As I started to say no again, the babysitter spoke up.
"She thinks because Bob's in the kitchen, she can get whatever she wants." Her voice was rich with mirth. She knew my little red-headed heathen very, very well. What happened next almost made me bust a gut laughing.
The babysitter had just finished speaking when Lily stared at me with this Duh, Mom expression on her face, and said "Yeah!" What made it even funnier is that Lily doesn't just say "Yes" or "No". She adds tonal emphasis to the words. Basically, she packs that one short word with a ton of attitude. "Yeee-aAAah" She even threw in a decisive nod for emphasis.
Given that she's only 21 months old, I don't generally expect Lily to 'know' what someone is talking about unless it involves the words "bottle" or "diaper change". Sometimes, though, when she responds as she did in that situation, I really think that she does understand, and I don't give her enough credit.
All throughout the day as that memory has randomly popped into my head, I have at least snickered.
Thank you, Lily, for the memory.
Please understand that I'm currently going through the Anger part of the grief cycle. I can even identify now that my 'tone' is much harsher than it normally is. There might be strong language. You have been warned.
"You gotta stay positive."
No, really? You don't think I know that? You don't think I fight to stay positive every day? You try facing this every day, and staying positive. You stupid fuckwit. Why in the world would you say this to someone? What is is going through your head? Think before you speak, dingdong. If you can't say something reasonable, just keep your mouth shut. Ninety-nine percent of the time, if I'm informing you that my daughter has a chronic, incurable, illness, I'm not telling you because I expect you to say something profound, or to say anything at all. I'm telling you because I felt you needed to know for some reason.
"Well, they are coming out with new treatments for stuff all the time."
No shit, Sherlock! Thank you, Captain Obvious. Guess what? I knew that too. Chances are that I know more about the treatments in the pipeline than you do, because its my daughter. Idiot. Sometimes if something is blatantly obvious, you do NOT have to voice it. Trust me.
"Maybe she'll grow out of it."
If its incurable, chances are she's not going to fucking "Grow out of it". Enough said.
What you CAN say:
"Dude, that freaking sucks!"
This is one case where stating the obvious is okay. Its okay because you're not thinking too hard about it. Its okay because it does freaking suck, and sometimes just someone else acknowledging that is all that I need. When someone responds like this, my thoughts are along the lines of 'Thank you for understanding.'
"I'll pray for her."
This one too is perfectly acceptable. That one phrase offers comfort, understanding, and is nice and simple. Again, its one where you're not thinking too hard about it. Do you see a pattern forming here? Your initial responses sometimes are the best.
"Sorry to hear that."
Its simple, honest, and conveys understanding of the situation.
I honestly don't blame people for saying stupid things most of the time. I generally just kind of shrug an acceptance of their response when they say something I think is stupid. I just had to get my thoughts out here.
-------------
A memory:
I'd went to the babysitter's house to pick her up, and was greeted in her usual way. Her voice declaring "MOMMY" as soon as I'd opened the door, and her hands extended straight up over her head with a following demand of "UP". It didn't matter to her that I was still a few feet from her. When I denied her, as I initially do because I'm trying to look through her backpack to see if there's anything I need to share with the babysitter, crocodile tears flowed down her chubby cheeks. As usual, I laughed at her because we go through this almost every day. She knows she's going to get picked up and given loves, but she wants it done on her terms and no one elses.
I chatted with the babysitter, picking Lily up after a minute, and sitting her on my lap. As usual she squirmed and wiggled, wanting to get down. In Lily's world, "UP" at the babysitter really means "up long enough for loves, and then you'll let me down so I can rip and race for a few more minutes". She did eventually get let down, and after a little bit more conversation with the babysitter, I tried to get her coat on her.
Everything was pretty much business as usual until Bob walked in the house. Bob is the babysitter's husband, and Lily has him wrapped around her little fingers. As his lanky figure disappeared into the kitchen, she looked at me with those wide gray eyes, and solemnly asked "Cookie?"
"No."
"Cookie!" More insistent this time. Bob regularly gave her cookies, and she was bound and determined to have her cookie. It didn't matter that we were ready to head out the door, and she was inside a warm house wearing a warm coat.
"No, Lily. We're getting ready to go, and you aren't allowed cookies in your carseat."
"Cookie!" As I started to say no again, the babysitter spoke up.
"She thinks because Bob's in the kitchen, she can get whatever she wants." Her voice was rich with mirth. She knew my little red-headed heathen very, very well. What happened next almost made me bust a gut laughing.
The babysitter had just finished speaking when Lily stared at me with this Duh, Mom expression on her face, and said "Yeah!" What made it even funnier is that Lily doesn't just say "Yes" or "No". She adds tonal emphasis to the words. Basically, she packs that one short word with a ton of attitude. "Yeee-aAAah" She even threw in a decisive nod for emphasis.
Given that she's only 21 months old, I don't generally expect Lily to 'know' what someone is talking about unless it involves the words "bottle" or "diaper change". Sometimes, though, when she responds as she did in that situation, I really think that she does understand, and I don't give her enough credit.
All throughout the day as that memory has randomly popped into my head, I have at least snickered.
Thank you, Lily, for the memory.
Wednesday, December 8, 2010
Randomn Stuffs
I recently had to disconnect myself from a board full of people that I really cared about. I had to do it because I couldn't take it anymore. I couldn't take being around conversations about healthy babies. I couldn't take listening to people talk about how hard a time they were having because of their child having a cold, or chronic ear infections, or various other little things. I felt for them, I still feel for them, but I was getting to the point where I was wanting to scream at them.
I wanted to scream: SHUT UP! JUST STOP WHINGING! You have NO clue what hard is until you've had a baby with a chronic life-threatening illness. NO clue! You think ear infections are bad? Constant diaper rashes? Waking up all hours of the night still? Try looking at your baby and realizing that they could die any time on you. Try looking at your baby and realizing that the odds are AGAINST him/her even getting a chance to GROW UP.
I wanted to scream and cry. To throw things and slap people. Just from listening to their happy conversations. Just from listening to their very valid concerns/complaints. For those mamas who are coming to the board for support because they are having a rough time, I had to leave. I had to leave because I no longer had it in me to offer them the support that they needed. I had to be selfish, because I cannot be unselfish right now. I just don't have it in me. I care for all of them, and that's why I left. Because I knew, sooner or later, I was going to come out with a very hurtful rant...and I wouldn't even be able to say truthfully that I didn't mean what I said afterwards, because I would mean it. I would not be saying it to be mean or to be spiteful, but because its the truth.
That they don't realize how good they have it.
I worry about the other children who have health problems. A couple have heart problems, but thankfully they don't seem to be anything too serious. I know one mama's baby also has some type of thyroid problems. They are in my thoughts quite often. No baby should be sick. Ever. Also, there is the momma of the beautiful little girl with Autism. She seems to be handling it like a champ. I will always try to be there for her too.
......
I am so thankful for one particular friend. This girl is absolutely amazing. She's made bracelets and encouraged others to make bracelets for the Global Genes Project. She asks every day how I'm doing, how Lily's doing. She has done research on her own to find out more about Pulmonary Hypertension. She sent me a card one day recently that had me in stitches because it was so funny. She's willing to listen to me whine and grumble about how much life sucks right now. She is, in two words, F'king Awesome! I gladly give up my self-proclaimed title to this particular friend. Because that's what she is.
She wishes she could do more. She's doing so much right now. I don't even have the right words in me to express how thankful I am for her friendship.
I'm also thankful for the other mamas (and some dads) who pm me out of the blue just to see how things are going. I can't always respond to them because my day is that rough, but I feel better just knowing that they care.
-------
I'm pretty much constantly tired lately. I have trouble getting up enough energy to really play with Lily. I feel like I just want to sit on the couch and be left alone. I feel like of my immediate relations (Friends/family/coworkers) here in Columbus, I'm the only one who realizes how serious Lily's condition is. I'm the only one who is really watching out for changes in her condition. I won't say I'm the only one that cares, because I know I'm not...but I feel like I'm taking on all the worry without anyone here to share it with. Sometimes all I need is a hug from someone who gets it. I don't feel like I have that.
I've been grumpy lately. More inclined to anger easily. My 'fuse' is practically non-existant.
I really just want babied for a few days. Just cuddles, snuggles, chocolate, alcohol, and a big box of tissues to blow my nose on while I left myself break down and cry. Tangible things. Oh well. More's the pity.
---------
Oh yeah... I got laid last night. It was good.
I wanted to scream: SHUT UP! JUST STOP WHINGING! You have NO clue what hard is until you've had a baby with a chronic life-threatening illness. NO clue! You think ear infections are bad? Constant diaper rashes? Waking up all hours of the night still? Try looking at your baby and realizing that they could die any time on you. Try looking at your baby and realizing that the odds are AGAINST him/her even getting a chance to GROW UP.
I wanted to scream and cry. To throw things and slap people. Just from listening to their happy conversations. Just from listening to their very valid concerns/complaints. For those mamas who are coming to the board for support because they are having a rough time, I had to leave. I had to leave because I no longer had it in me to offer them the support that they needed. I had to be selfish, because I cannot be unselfish right now. I just don't have it in me. I care for all of them, and that's why I left. Because I knew, sooner or later, I was going to come out with a very hurtful rant...and I wouldn't even be able to say truthfully that I didn't mean what I said afterwards, because I would mean it. I would not be saying it to be mean or to be spiteful, but because its the truth.
That they don't realize how good they have it.
I worry about the other children who have health problems. A couple have heart problems, but thankfully they don't seem to be anything too serious. I know one mama's baby also has some type of thyroid problems. They are in my thoughts quite often. No baby should be sick. Ever. Also, there is the momma of the beautiful little girl with Autism. She seems to be handling it like a champ. I will always try to be there for her too.
......
I am so thankful for one particular friend. This girl is absolutely amazing. She's made bracelets and encouraged others to make bracelets for the Global Genes Project. She asks every day how I'm doing, how Lily's doing. She has done research on her own to find out more about Pulmonary Hypertension. She sent me a card one day recently that had me in stitches because it was so funny. She's willing to listen to me whine and grumble about how much life sucks right now. She is, in two words, F'king Awesome! I gladly give up my self-proclaimed title to this particular friend. Because that's what she is.
She wishes she could do more. She's doing so much right now. I don't even have the right words in me to express how thankful I am for her friendship.
I'm also thankful for the other mamas (and some dads) who pm me out of the blue just to see how things are going. I can't always respond to them because my day is that rough, but I feel better just knowing that they care.
-------
I'm pretty much constantly tired lately. I have trouble getting up enough energy to really play with Lily. I feel like I just want to sit on the couch and be left alone. I feel like of my immediate relations (Friends/family/coworkers) here in Columbus, I'm the only one who realizes how serious Lily's condition is. I'm the only one who is really watching out for changes in her condition. I won't say I'm the only one that cares, because I know I'm not...but I feel like I'm taking on all the worry without anyone here to share it with. Sometimes all I need is a hug from someone who gets it. I don't feel like I have that.
I've been grumpy lately. More inclined to anger easily. My 'fuse' is practically non-existant.
I really just want babied for a few days. Just cuddles, snuggles, chocolate, alcohol, and a big box of tissues to blow my nose on while I left myself break down and cry. Tangible things. Oh well. More's the pity.
---------
Oh yeah... I got laid last night. It was good.
Monday, December 6, 2010
Turning Blue
Last night, I laid Lily down on the floor for tickles. She flushed as soon as I laid her down, but it didn't really even register in my mind. Then I tickled her. Now, I know Lily has problems breathing, so I keep tickles very brief. I generally tickle for a bit, then let her catch her breath, and do it again.
This time when I tickled her (15-20 secs, max) and pulled my hands away...Lily was blue. Flushed red, and blue around the lips, temples.. I didn't freak out immediately because she was okay after I sat her up. Today I placed a call to the doctor...
The nurse's reaction that took my call was "Oh, my god." You NEVER want to hear that from a nurse. Ever. Anyways, she transferred me to another nurse, the one who works right under Dr. Daniels, and that nurse (Jennie) asked me a whole buncha questions, and said she'd call me back.
The results of the call back are we have to try oxygen 24/7 and see if that helps. If it doesn't, we have to put in a call to her pulmonologist. Its possible that Lily's left bronchus collapsed even further. If its not that, then its her PH.
I can't take much more of this. I really can't.
This time when I tickled her (15-20 secs, max) and pulled my hands away...Lily was blue. Flushed red, and blue around the lips, temples.. I didn't freak out immediately because she was okay after I sat her up. Today I placed a call to the doctor...
The nurse's reaction that took my call was "Oh, my god." You NEVER want to hear that from a nurse. Ever. Anyways, she transferred me to another nurse, the one who works right under Dr. Daniels, and that nurse (Jennie) asked me a whole buncha questions, and said she'd call me back.
The results of the call back are we have to try oxygen 24/7 and see if that helps. If it doesn't, we have to put in a call to her pulmonologist. Its possible that Lily's left bronchus collapsed even further. If its not that, then its her PH.
I can't take much more of this. I really can't.
Thursday, December 2, 2010
Just to hear you say that you love me...
I'd go and capture the moon
That's what I would do
Just to hear you say that you love me..
Just to hear you say that you love me..
-Fatih Hill, Tim McGraw
She was playing beside the computer, periodically looking over to see what I was doing. Occasionally, she was pressing buttons she wasn't supposed to touch, and she knew it. I had turned on music at dinner time, just to keep us entertained while we were eating, and left it playing afterwards.
There had been a few fun songs come on, and I'd laughed as she'd bopped her red-head to the beat, and wiggled her non-existant butt. For the most part though, I was wrapped up in what I was doing. Then, Faith Hill and Tim McGraw singing "Just to hear you say that you love me." came on. I peeked at her, just to see her reaching (yet again) to touch the power button on my computer.
"You little booger!" I exclaimed, and rose from the couch to snatch her up from what she was about to do. She squealed, and I moved us to the center of the floor. I took one of her tiny hands in mine, and began to rock back and forth to the song, occasionally singing along under my breath. She grinned, her gray eyes sparkling, and tried to move to the beat too. A few seconds later, the chorus sounded, and on the word "love", I laid her back in my arms a bit, and spun her around.
Giggles erupted. The word came again. Her cheeks were flushed with color, and she was clutching my hand with all her strength as we went around another time.
I pulled her back up as a verse began, and she looked at me for a second, then leaned forward and carefully wrapped her arms around my neck, and laid her head on my shoulder. Suddenly, I was nearly a boneless pile of goo. This was, I knew, one of those perfect moments that needed to be written down. I would do it later. Right now, though, I was going to enjoy every second of it.
I held her close, a hand on her back, and slow-danced carefully with her. This lasted for a good bit of the song. Then, my red-headed heathen, in all her glory, looked lovingly up at me, and reach out a hand to my face. With the greatest concentration, and barely a twitch of her lips to betray her intentions, she closed her fist around one edge of my glasses, and took them off my face.
"Oh, you think you're funny? Is that it? You think you funny?!" I cradled her to my body, and spun us in circles as I playfully tried to retrieve my glasses. She laughed as I repeated "Gimme! Gimme! Gimme!" It was on. I suddenly hefted her higher in my arms, and began to gently nip at her sides. As peals of laughter sounded, and she squirmed to get away, I stole my glasses back.
It wasn't much longer after that when we sat down, and the song ended. However, that particular memory that we made stuck with me the entire night, and I knew that today it needed to be written down. I'd written too much sad stuff lately. It was time for a happy.
That's what I would do
Just to hear you say that you love me..
Just to hear you say that you love me..
-Fatih Hill, Tim McGraw
She was playing beside the computer, periodically looking over to see what I was doing. Occasionally, she was pressing buttons she wasn't supposed to touch, and she knew it. I had turned on music at dinner time, just to keep us entertained while we were eating, and left it playing afterwards.
There had been a few fun songs come on, and I'd laughed as she'd bopped her red-head to the beat, and wiggled her non-existant butt. For the most part though, I was wrapped up in what I was doing. Then, Faith Hill and Tim McGraw singing "Just to hear you say that you love me." came on. I peeked at her, just to see her reaching (yet again) to touch the power button on my computer.
"You little booger!" I exclaimed, and rose from the couch to snatch her up from what she was about to do. She squealed, and I moved us to the center of the floor. I took one of her tiny hands in mine, and began to rock back and forth to the song, occasionally singing along under my breath. She grinned, her gray eyes sparkling, and tried to move to the beat too. A few seconds later, the chorus sounded, and on the word "love", I laid her back in my arms a bit, and spun her around.
Giggles erupted. The word came again. Her cheeks were flushed with color, and she was clutching my hand with all her strength as we went around another time.
I pulled her back up as a verse began, and she looked at me for a second, then leaned forward and carefully wrapped her arms around my neck, and laid her head on my shoulder. Suddenly, I was nearly a boneless pile of goo. This was, I knew, one of those perfect moments that needed to be written down. I would do it later. Right now, though, I was going to enjoy every second of it.
I held her close, a hand on her back, and slow-danced carefully with her. This lasted for a good bit of the song. Then, my red-headed heathen, in all her glory, looked lovingly up at me, and reach out a hand to my face. With the greatest concentration, and barely a twitch of her lips to betray her intentions, she closed her fist around one edge of my glasses, and took them off my face.
"Oh, you think you're funny? Is that it? You think you funny?!" I cradled her to my body, and spun us in circles as I playfully tried to retrieve my glasses. She laughed as I repeated "Gimme! Gimme! Gimme!" It was on. I suddenly hefted her higher in my arms, and began to gently nip at her sides. As peals of laughter sounded, and she squirmed to get away, I stole my glasses back.
It wasn't much longer after that when we sat down, and the song ended. However, that particular memory that we made stuck with me the entire night, and I knew that today it needed to be written down. I'd written too much sad stuff lately. It was time for a happy.
Tuesday, November 30, 2010
Being Thankful and Remembering Cora
The main part of yesterday was a horrible day for me. I had tears in my eyes quite often. I just couldn't get Lily's situation out of my head. I was sad. I was mad. I was wondering why everyone around me seems to have healthy babies, and MY baby has problem after problem.
I blamed myself. I still blame myself. I could have done things differently, or something.
I leaned on my friends, though, and they helped pull me through it a little bit. It still felt like I was preparing myself to say goodbye to Lily at any point though.
However, then I saw a post from one of my friends about Cora. Cora's mom had thought she was bringing home a perfectly healthy babygirl. Cora abruptly passed away from an undetected heart defect during breastfeeding. She was only like 5 days old. http://www.corasstory.org/. Today would have been Cora's first birthday. Kristin, Cora's mom, is an awesome lady who has pushed so hard to make testing for CHD a requirement. She's encouraged others to spread the word to pregnant friends about demanding to have a simple pulse-ox test done before they leave the hospital with their new baby. Its non-invasive, just a little band with a monitor in it wrapped around their toe.
Its something simple, cheap, and easy - and yet its not a standard test. Why? Why do we not have this test done when it could save lives? Its ridiculous!
I have to remember that I am blessed for each day that I have Lily in my life. That if 2 years or 5 years, or even 10 years is all that I'm meant to have with her, its still 2/5/10 years that I HAD with her. Kristin had Cora for 5 days. FIVE days! Take a look at your baby. Could you imagine only having that beautiful little presence in your life for five days? I have had several wonderful months with Lily so far, and I'm thankful for every single one of them.
When I feel like everything is dragging me down, I need to remember that I am blessed to have had the time with my daughter that I've had. That no matter what happens, I will have so many memories of her. That she has touched so many lives already, and she's not even celebrated her second birthday yet.
When you look at Lily, you don't see 'sickness'. You see firey-red hair, chubby little cheeks, and a bonfire of personality shining out.
(((This is Noah and Lily. They are 3 days apart. They had a very long playsession on Sunday)))
When I look at Lily throughout the day, for the most part I forget that she is sick. I see a normal little heathen who takes great joy in driving her mommy up the walls.
Then comes nighttime. With nighttime comes oxygen. As soon as I put the oxygen on her, everything comes crashing down on me again. However, even though Lily throws a fit when the oxygen is going on... I'm shortly confronted with this...
Oxygen on, hair up in pigtails to keep it from getting caught in her tender-grips, and laughing at seeing herself on the computer screen. You barely notice the oxygen. Again, all you see is the personality.
For someone who is unarguably sick, Lily has the passion and zest for life of five healthy children. For as sick as she is, she's hardly ever in a bad mood. My rugrat laughs and runs, gets into stuff she shouldn't, and requests tons and tons of mommy cuddles.
My friends tell me that they think of "Li'l Bee" often. So many of them check up on her to see how she is doing. She apparently melts quite a few hearts.
Its amazing how much someone who can barely talk can touch so many people.
Soon, Lily's story will be put 'in publication'. The Pulmonary Hypertension Association has asked me to write an article about Lily and the struggles that we have been through. I gladly agreed to do it. If Lily's story helps even one family of a little one who has been diagnosed with PH, I will write as much as they want me to write. It'll be in one of their PHA Pathways quarterly newsletters, and also listed on their site, in the "Journeys" section.
I still feel, in my heart, that Lily is not going to get a chance to grow up. Its this sick feeling in my gut that says you have to treasure every second, because you aren't going to have many more of them. I hope I'm wrong, but I don't think I am. Its not just the diagnosis of PH, either. Its something that I've felt ever since she was diagnosed with her initial health problems. I just don't tend to talk about it much.
---
Anyways, I was in a horrible mood yesterday. However, when I got home, the first thing I heard was "MOMMMMMMY!" "MOMMY!MOMMY!" and I had a little monster running straight at me for some 'loves'. Then, throughout the night, its like she knew mommy was having a bad night, because the trickster side of her was out in full force. She had me near tears a couple of times, just from doing things like poking a button on my computer, and then looking at me, with her lips in a perfect "O" of surprise, and sucking in a big breath of air like she'd just discovered something earth-shaking.
---
One day I want to put together a book of 'memories'. I want all of Lily's family, including those who are a thousand miles away, and only see her through pictures and words that I write, to be able to tell her about her life from their perspective. To let her know how special she is, and how she has touched them. I want her to have it /I want to have it.
Now, dammit, I gotta go, cause I've got tears racing down my cheeks.
---- But before I sign off... I just want to say Happy Birthday, Cora! You will never be forgotten!
I blamed myself. I still blame myself. I could have done things differently, or something.
I leaned on my friends, though, and they helped pull me through it a little bit. It still felt like I was preparing myself to say goodbye to Lily at any point though.
However, then I saw a post from one of my friends about Cora. Cora's mom had thought she was bringing home a perfectly healthy babygirl. Cora abruptly passed away from an undetected heart defect during breastfeeding. She was only like 5 days old. http://www.corasstory.org/. Today would have been Cora's first birthday. Kristin, Cora's mom, is an awesome lady who has pushed so hard to make testing for CHD a requirement. She's encouraged others to spread the word to pregnant friends about demanding to have a simple pulse-ox test done before they leave the hospital with their new baby. Its non-invasive, just a little band with a monitor in it wrapped around their toe.
Its something simple, cheap, and easy - and yet its not a standard test. Why? Why do we not have this test done when it could save lives? Its ridiculous!
I have to remember that I am blessed for each day that I have Lily in my life. That if 2 years or 5 years, or even 10 years is all that I'm meant to have with her, its still 2/5/10 years that I HAD with her. Kristin had Cora for 5 days. FIVE days! Take a look at your baby. Could you imagine only having that beautiful little presence in your life for five days? I have had several wonderful months with Lily so far, and I'm thankful for every single one of them.
When I feel like everything is dragging me down, I need to remember that I am blessed to have had the time with my daughter that I've had. That no matter what happens, I will have so many memories of her. That she has touched so many lives already, and she's not even celebrated her second birthday yet.
When you look at Lily, you don't see 'sickness'. You see firey-red hair, chubby little cheeks, and a bonfire of personality shining out.
When I look at Lily throughout the day, for the most part I forget that she is sick. I see a normal little heathen who takes great joy in driving her mommy up the walls.
Then comes nighttime. With nighttime comes oxygen. As soon as I put the oxygen on her, everything comes crashing down on me again. However, even though Lily throws a fit when the oxygen is going on... I'm shortly confronted with this...
Oxygen on, hair up in pigtails to keep it from getting caught in her tender-grips, and laughing at seeing herself on the computer screen. You barely notice the oxygen. Again, all you see is the personality.
For someone who is unarguably sick, Lily has the passion and zest for life of five healthy children. For as sick as she is, she's hardly ever in a bad mood. My rugrat laughs and runs, gets into stuff she shouldn't, and requests tons and tons of mommy cuddles.
My friends tell me that they think of "Li'l Bee" often. So many of them check up on her to see how she is doing. She apparently melts quite a few hearts.
Its amazing how much someone who can barely talk can touch so many people.
Soon, Lily's story will be put 'in publication'. The Pulmonary Hypertension Association has asked me to write an article about Lily and the struggles that we have been through. I gladly agreed to do it. If Lily's story helps even one family of a little one who has been diagnosed with PH, I will write as much as they want me to write. It'll be in one of their PHA Pathways quarterly newsletters, and also listed on their site, in the "Journeys" section.
I still feel, in my heart, that Lily is not going to get a chance to grow up. Its this sick feeling in my gut that says you have to treasure every second, because you aren't going to have many more of them. I hope I'm wrong, but I don't think I am. Its not just the diagnosis of PH, either. Its something that I've felt ever since she was diagnosed with her initial health problems. I just don't tend to talk about it much.
---
Anyways, I was in a horrible mood yesterday. However, when I got home, the first thing I heard was "MOMMMMMMY!" "MOMMY!MOMMY!" and I had a little monster running straight at me for some 'loves'. Then, throughout the night, its like she knew mommy was having a bad night, because the trickster side of her was out in full force. She had me near tears a couple of times, just from doing things like poking a button on my computer, and then looking at me, with her lips in a perfect "O" of surprise, and sucking in a big breath of air like she'd just discovered something earth-shaking.
---
One day I want to put together a book of 'memories'. I want all of Lily's family, including those who are a thousand miles away, and only see her through pictures and words that I write, to be able to tell her about her life from their perspective. To let her know how special she is, and how she has touched them. I want her to have it /I want to have it.
Now, dammit, I gotta go, cause I've got tears racing down my cheeks.
---- But before I sign off... I just want to say Happy Birthday, Cora! You will never be forgotten!
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