Wednesday, February 25, 2009

Deep Breaths

Today I had a visit with my first grader's teacher. She is so sweet. I knew the meeting was not going to be pleasant deep down. I know that Madeline is struggling and not where she should be. It is very difficult to not feel completely responsible. Bottom line, unless there is a real light bulb moment soon I believe she will be repeating first grade. Not an easy thing to hear. Considering I feel so responsible for it. The moves, the home situation being so unstable with Lillian and while I know most of this is out of my control (ie floods and health problems) it does not necessarily make me feel better. Hubby thinks I'm nuts. Of course, I tried not to have a break down in front of her, but hello you know me (well I'm a crier that's all I'm saying). She was very positive and extremely supportive. I can't imagine it's easy for teachers to have to have those conversations with parents. There are a few other avenues to check out to make sure there is not a medical issue with her vision and vision imagery, so still have that to explore and PTL she is not just ignoring this or chalking it up to focus problems. Basically, just a difficult situation to have to face. So, I'll just keep taking deep breaths, keep my eyes on the Lord and try not to slip under the surface of the water.

Tuesday, February 24, 2009

A little on the heavy side

It comes to my attention I seem to have lost some of my levity (now why on earth would that be? hmmm let us ponder) Seriously, I really am a happy person just a lot of "heavy" going around the house right now. or always or well you get it. Let me set the scene for you....four daughters in the kitchen supposed to be doing dishes...conversation is going like this.
"you hit me"
"NUH UHHHHH" screaming
"well you have a fat butt"
"NUH UHHH, your butt is way fatter than mine"
"whatever, you take up like this much room (hand gestures) and I take up like this much room"
oh here we go, nine year old enters living room in tears,
me "what's wrong"
her "you wouldn't care anyways"
ahhh, raising children.

Oh, and I'll just have you know, my 11 year olds life is OVER. The bus driver made all the students sit with their siblings.....AHHHHHHH.....what is the world coming too? I must write the bus driver and let her know she has ended the life of three young women. Oh yes, and the wee little daughter is playing with her feeding pump and trying to open the ports bc I'm not paying adequate attention to her. Have I ever mentioned she doesn't have any toys?

Oh yes, even better the 12 year old cannot believe I would insist on making her do dishes before completing her homework. Let's see, she's been home over an hour and just when I ask her to do dishes she needs to do homework on the computer no less. I AM such a good mother. You should have seen her face. Priceless. My life could be a mastercard commercial.

Monday, February 23, 2009

What people say

Yesterday I was able to attend church for the first time in months. It was such a blessing. I headed down to Sunday school and tried to jump in just as I always have. After the lesson, the leader of the class asked me about Lillian and how things were going. There was another woman in the class who has a son who is grown and on his own that has special needs. As I was talking I mentioned that we had spent 25 days in the last 2 months in the hospital. This other person chimes in, "well, we were there 3 months, I've got you beat" Ok, seriously, WHO says that to someone? Who tries to one up you on how long you've spent in the hospital? It has bothered me, I'm sure unnecessarily, today. She also made some other very odd remarks, doesn't it seem as though someone who's been through a similar situation would try to be more helpful? *scratching head*

There are some other items I really need to write about so I can get them out of my mind, but Little Missy is sitting here getting grumpy and needing her Mommy fix for the night, heaven forbid I'm on the computer and not paying complete attention to her.

Saturday, February 21, 2009

Where have I been

Yes you guessed it, we spent yet another visit at Hotel Riley. Lillian was admitted this time for diarrhea and stomach flu. She was having 10-15 dirty diapers for several days. I had taken her to the ER up there the night before only to be waiting in the hallway outside the waiting room bc there was no room. Needless to say, I chose not to keep her and all my other kids there to catch all the junk floating around. ANYWAY, she finally looks like her old self to me. This was a slightly more tolerable stay, but it was only tuesday through friday. I still believe the docs have horrible communication issues...but hey that's me.

I've come to realize that this is actually the worst (is that a word) and best time in my entire life. I think I must somehow live in denial about the set of circumstances I've been given. I think maybe it's a coping skill. It's a lonely place to be. I used to find myself in a somewhat different category due to the fact that I chose to have a large family. I KNOW I'm in a COMPLETELY foriegn land called special needs it just doesn't always occur to me until I'm sitting in a hospital letting the student nurse change my daughter's trach so she can gain that skill. What the heck??? Does it also seem that you tire of hearing people whine about their "normal" mundane issues? I try not to be to cynical, but most of the time I'd take mundane any old day. Overall, I think I do pretty well but oh could I become bitter if I let myself go there. For example, missing your friends that for some reason have no time for you or being annoyed that absolutely noone makes an effort to visit you in the hospital. Trying to understand it is difficult so I just try to excuse or accept it and keeping moving forward. Anyone feel my pain? Holla back.

Friday, February 13, 2009

My Burn Notice Fix Falls through

I only got to watch portions of my favorite show last night as Lillian began vomit fest 2009. It continues into today. A new chest xray shows improvement, so we stopped her antibiotic and are just holding the fort to see how things go from today on. Thank goodness we have re-runs and internet.

Thursday, February 12, 2009

Long night

This day is just dragging by. It is exhausting when your children are so difficult in the evening. You know, one of those days like you ask for the ten dishes to be washed in the sink and it turns into the battle of wills? Like when you sit down to eat dinner and noone does anything but bicker over the table? UGH. Probably doesn't help that I'm still in the dumps today. These are the days I go to bed wondering if I really am a good mother? Somedays my home just wreaks of good My Mother came over tonight and helped me work on the house a little. We made a little progress in my room, but beyond that, it' s like a drop in the bucket. I have like NO storage in my room so everything just sits piled in baskets. I hate that. I'm going to seriously overhaul my closet someday....I've forced the children to clean their rooms tonight and since I hear lots of friendly banter, I doubt ANYTHING is really getting done.
Tomorrow we finish filing our taxes so it will be rush rush rush, BUT, it will probably mean a dinner out with Matt and Lillian...I don't know though, I'm really leary of taking her out anywhere just yet. The good news today----BURN NOTICE FAVORITE show. I love ten oclock on Thursday nights!!! Think I'll go eat another piece of cake, I made a chocolate cake tonight and if you listen closely you'll hear it calling my name...

Wednesday, February 11, 2009

Hitting the Wall

Do you have those days where it seems like nothing else could happen? Today is my day. Starts with the school nurse calling to say one of my kids has head lice. Just what I need at this juncture. Do you know how taxing that is in and of itself? Hang up the phone with her and hook Lillian up with her feeding only to find that it doesn't appear as if DH has fed her her AM feeding. ?????? Break down ensues. I feel so completely overwhelmed. I'm not sure that I can make it through all of this. Thinking of things from recent hospitalization that just boggle my mind. As if your child being there is not enough to make you weepy, how about being trapped in four walls, not having your children or husband around you, not having anyone around. Just you, your sick baby and a host of strangers that are there for their "job". Take stock health care's not just a job, it's MY LIFE. Backtracking a little, I used to work at our children's hospital 11 years ago as a secretary. Since our recent admissions I've encountered some of the nurses I used to work with, which was kinda cool. Anyway, one night I was upset because I asked a PCA to stay with Lillian for FIVE minutes just so I could get a breather....well, she looks at my like I've arrived from another planet. She informs me, she'll stay, but will most likely have to leave her alone if needed for an IV job down the hall. Needless to say I was steaming. I ran down and right back up and she said "well you weren't gone long" and I said I don't want her alone and begin to cry. I have no desire to see or speak to any person on that floor....I'm later informed (by my former coworker nurse) that I'm quote "in the room bawling and won't talk to anyone". quote "they just don't know what is wrong with me" HELLL------LLLLLLOOOOO. Close to the end of her admission I'm once again losing all tolerance of this hospital and my baby being so sick and needing company and needing a break...well, I just get Lillian to sleep (who by the way hasn't had a decent night's rest in 2 1/2 weeks) when Respiratory walks in to do a treatment which causes her to cry a little, but I manage to get her back to sleep. RT puts up the bed rail (which didn't latch) leans his 6'3" 300lb body on and it come crashing down waking my daughter up and keeping her up until 130 in the morning. When he came for the next treatment he wondered why my temperment seemed hostile. (bc of course she was still awake). For a hospital that has such a high reputation and seemingly so specialized, they miss the mark on so many levels. I caught respiratory giving her the wrong breathing treatments just in time, I had a surgeon tell me that there really wasn't fluid around her lungs, (um, hello, her chest tube drained out an entire chamber of fluid like 200mls) I had to fight tooth and nail to get them to give her pain medication. I kept getting this "well we don't give kids in respiratory distress narcotics because it supresses their breathing" HELLO- she has a trach for heaven's sake. Nightmarish. You know the saying bored to tears...that's true. It really happens. How about your baby laying there and crying and not being able to move due to the pain she's in. I wonder if that's a good enough reason to cry? Switching doctors and having to adapt to the ever changing decisions of those people?

Coming home, a wonderful blessing, but then facing all that has "happened" in your abscence. Any Mom knows what I'm saying. Like what in the world did these people do while I was gone??? It's frustrating. I'm always the un-fun one. While I'm very glad Matt was taking them to do things and keeping them occupied, I'm also mourning the fact that I'm missing it. Missing my family. Coming home and remembering all the issues we still face. Wondering how things turned out this way. Crossing my fingers and hoping we are out of the woods for a while. I know this post is long and jumbled but so much bumping around in my head and not being able to really express it in the right way.

Monday, February 9, 2009

Where do I begin?

This has been a crazy two months. Lillian was discharged from the hospital today and we've been home since about three oclock. There are about a million different things I'd love to type about, my frustrations, my fears, but I think I will hold that for the moment. I'm feeling very blessed at this moment...did my IRL friend Finding Normal send dinner to my house tonight and make my evening incredibly easy??? Did another friend do my kids' laundry AND provide a home cooked meal for my family while I was gone? Did one of my kids' teachers bring groceries to my family? Did countless people say a prayer for Lillian each and every day? Did friends sign in and comment on her webpage to encourage and lift us up? Did we survive yet another long hospital stay? Did I feel so rescued when a friendly face greeted us in our hospital "suite" when I was feeling so low? The answer to all of this...yes. A resounding yes. Totally humbled.