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.
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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.

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.

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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.

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Oh yeah... I got laid last night. It was good.

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.