Sunday, November 30, 2008

A kept Woman

We have had a very pleasant weekend. Friends came down on Saturday (my very dear friend from my working days at Riley) she has four kids close in age to mine, so we had a very much needed and really good visit. Sunday we celebrated Lillian's birthday. I was so thankful to have each and every person that was here. I think in total it was 19 family and friends. It was a really good time and Lillian really enjoyed herself, I hope to post some pics soon!

My Mom sent me this in an email forward and I liked it so much I thought I would post it here. I'm glad to be a "kept" woman!
I Am a 'Kept' Woman?You see, there were a few times when I thought I would lose my mind,But GOD kept me sane. (Isa. 26:3)
There were times when I thought I could go no longer,But the LORD kept me moving. (Gen 28:15)
At times, I've wanted to lash out at those whom I felt had done me wrong,But the LORD kept my mouth shut. (Psa. 13)
Sometimes, I think the money just isn't enough,But GOD has helped me to keep the lights on, the water on, the car paid, the house paid, etc.., (Matt. 6:25 -34)
When I thought I would fall, HE kept me up.
When I thought I was weak, HE kept me strong! (I Pet. 5:7, Matt. 11:28-30)
I could go on and on and on, but I'm sure you hear me!
I'm blessed to be 'kept.'

Friday, November 28, 2008


We had a nice dinner with some family friends. Today, however, I'm paying the price. I feel like I'm being guilt tripped, but I'm determined to not doubt our decision and not forget what a nice dinner we had and how laid back it was. I did not cook and we had a nice leisurely afternoon. I think I ate 6 yeast rolls...YUM! Turkey is my favorite, I wish it wasn't such a labor to prepare or I'd cook it regularly. I think I will get out to some shopping today, although I do not look forward to the masses. Hopefully, they've gotten their "must haves" and are headed back home. I at least have to go order birthday cake for little missy and birthday wrapping paper for her. We are celebrating on Sunday. Of course I need to food shop as well. We always have snacks on birthdays. On her actual birthday, we gave her one of her gifts and when the girls came home from school, this is what happened...too too funny....

Now you know if I got those girls Mr Potato Head, they wouldn't touch him with a ten foot pole, but get for the two year old and look what

Tuesday, November 25, 2008

Happy Birthday Lillian Two Years Old Today

Thank you, dear Lord for giving me this child. Each and every day for letting her beat the odds. Proving you are the One who decides. Thank you for teaching me to rest in You. Thank you for her smile, her laughter, her sickness, and the times she is well. Thank you for letting her walk, thank you for letting her be able to take every single paper plate out of the basket and throw them around the kitchen. Thank you for letting her love her sisters and make them feel like they are the best in her life. Thank you for every part of caring for her even though I might complain. I am grateful for the last two years and all the years to come. Thank you for loving us enough to entrust her to our care. In Your Service, Michelle

Monday, November 24, 2008

Reflections of a Mother

Tomorrow will be two years ago that she came into my life and changed me. I remember the gaping whole in my heart when I awoke to remember she was not with me, but miles away struggling to survive. Coming to her bedside and reeling from what my eyes were seeing. Being her Mother and not being able to help her wanting her desperately back inside where I could protect her. Not being able to hold her or even be really close to her. Wishing it were me. Riding the roller coaster of emotions she would take me on. Sobbing into my pillow, needing my husband and needing my children. Watching her come off a vent and then heart failure, and back on a vent. Wondering if a vent would be her life. Making decisions, praying without ceasing. Finding a strength I didn’t know was there. In a cold, lonely room, feeling the touch of the Holy Spirit. Finding true friendships in the strangest of situations. Coming to grips with the reality of what lay ahead. Learning to be a parent all over again, wiping away anything I knew about raising a child. Finding such joy in the first smile. Living with the guilt of taking so much for granted. Living my faith so that others might see Christ in me. Seeing the harsh reality of those that survive and angels that earn their wings. Experiencing true grace. Loving her more than caring about how many nights I’d stay awake by her bed. Focusing on acceptance rather than expectation.


I’ll survive whatever comes next.
Happy Birthday my Love

Sunday, November 23, 2008

The Goal

All week I kept telling myself I was going to work hard this weekend and clean clean clean. I did just that. Even though I felt like I never sat down, I did get a lot done. Dining room table clean...there is a surface.....bedroom floor, can see it again...Still some to do, but there's some issues with storage in this house, so I'm thinking on that. Laundry almost done, I think I've done about 8-10 loads this weekend. Sheets, clothes, laundry was OUT OF CONTROL. With the puke fest Lillian has been having, cloth diapers and multiple clothing changes....EEK GADS. I cooked 4 meals this is mostly clean. Got to sweep but did not make it mopping. Clean dishes need to be put away but that can wait. I am looking forward to this week, Thanksgiving and Lillian's birthday. Much to do. Don't know if I mentioned the genetics appt, but we actually didn't go. As soon as I loaded Lillian in the car, puke fest began, which is her history when she is sick. Head over to the pediatrician and by then nasty junk was draining from her ear. She is still not doing very well. We've had to go on a pedialyte diet and today she is running a fever. Ironic since she's on antibiotics. Friday I had a total melt down, in the doc's office, in the Marsh parking lot. I cannot really explain my emotions, but it's not just that she has all these medical needs, she can't seem to get and stay healthy. It is a never ending, vicious, unfair cycle. It is taxing to see her so miserable. I can clean puke all day, but watching her have to suffer is the crapper of it all. This whole experience has taken a piece of me, I don't know if I can explain it to have it make sense.....

All in all, I felt like I got some things accomplished this weekend and it has given me a little peace to have a somewhat presentable home, you know, one that wouldn't totally embarrass me if someone came over. LOL.

PS- Vickie, Thanks a bunch for the award, however, I'm not savvy enough to figure out how to do the instructions that you left!! I'm just know enough to be dangerous!!!

Friday, November 21, 2008

Where are your pants???

Lillian decided she would take her pants off this morning and when I tried to get her to look at me, you can see clearly that she is giving me the sideways not going happen look....

She then kept attempting to put them back on ...
She then proceeded to completely turn her back on me.

Thursday, November 20, 2008

Too funny and GUH-ROSS

Against my better wishes, I went and made dinner. I made some garlic chicken with parmesan cheese, pretty easy,right? I decide I'll try something different and add some italian cheese blend to the top, mind you, I'm cooking without lights on. After the cheese melted, I took a taste and detected the strong flavor of mold, yes, mold. Flipped on lights, italian cheese blend (that I just bought) was molded and I had, yes, sprinkled it atop my delectable chicken. What does MOTY do? She scrapes it off and serves it, unawares to children. Cheese is made from mold right? Still can't get the taste out of mouth....eeeewwwww. Moral of the story, turn on the lights when you cook. Thank goodness I didn't dump the whole bag on. Just had to share.

Back to Sanity?

A new day. it is snowing hard here, though I don't know how long it will last or if it will amount to anything, but it is nice to see. I have had a decent day and am blogging before "crazy lady" takes (i'm really not crazy....) I got to go in to school today and chat with Finding Normal,( we totally need to get together outside of time constraints) man it's wild to talk to someone you feel like you've known forever but haven't really. As I was about to leave, I noticed a teacher going down the hall with turkey and one and only all time favorite school lunch, you know mashed potatoes, yeast rolls...mmmm, (wonder why I'm overweight?) I decided to day would be a good day to have lunch with one of the kids. Isabelle highly enjoyed it and I did too. It's interesting to see the whole process. I've never been a fan of the school lunch since my kids have been in school, I don't think elementary school kids should have all those choices. Plate lunch....that's my opinion.

I'm almost finished with Lillian's quilt that I started when I was pregnant. Just the rhythm of stitching helps me relax. Also, I'm dreading the upcoming surgery. Palate repair...*shudders at the thought* Mostly I'm dreading the hospital stay and the whole anxiety of feeling like I'm sending my sheep to slaughter. So far, nothings been as hard as her heart surgery. There's a story. As I was headed to the hospital, I got pulled over by a cop for running stop signs...didn't even know I had. I could not stop crying at her bedside. So not a good time.

I wish the supper fairy would come and make dinner at my house tonight and do some cleaning. Who has good recipes?? I'm tired of making the same things over and over again. I'd also like to shout out to any trach parents out do you get through bath times??? I am finding bath time exceedingly more difficult. I feel like I'm going to drown her. Do you know how hard it is to not get water in that area? Washing hair trying to avoid it? Open to any and all suggestions.

Ok, crazy lady moving in...oldest gets home from school wearing the same jeans as yesterday....HELLLLOOOO

Oh yes, in my sane moment I realize why my baby is cranky....ora-pred. Nasty, nasty drug.

Wednesday, November 19, 2008

Yo yo

Stop reading right here if you don't want to hear my whining. I think this week things will be better. This week we will be better off.........NOPE. It seems there is no end to the madness. If its not a medical issue its a financial issue. I know that there are people who have the same struggles. WHY CAN WE NEVER GET AHEAD???? Why do I feel like I SUCK at every----stinking----thing. It seems like every time we receive a financial blessing, it is followed by a financial disaster. Matt is most likely staying on evenings for awhile, which has already been a while too long. He has worked a terrible shift for quite some time now. Probably ever since he went back to work after Lillian came home. WHERE does it all go wrong???? AND I HATE HATE HATE IT. *BIG HUMONGOUS SIGHS*

Why is my two year old so grumpy and whiny tonight, why is she screaming through most of her therapies???? And why can't I do anything about it????

I should not blog at this hour...I've generally lost all good humor by now and do nothing but complain.

Tuesday, November 18, 2008


What am I thankful for...

My Family (even though it sounds like I'm not sometimes.) My husband who works very hard and each one of my girls brings something unique to my life every day.

Surviving Flood 2008- 6-7-08, home becomes surrounded by flood waters, make hasty very poorly executed evacuation. Wade through waist deep water with five children and rat terrier to safety. (not something I'd want to relive)

Finding New Place to Live--Find out previous home is deemed unsafe dwelling due to afore mentioned flood; must move immediately. Not an easy task considering half of the city needs a new place to live. And we are NOT your average family

GIVEN a car---lost minivan in afore mentioned flood.

Understanding Teachers- who seem to genuinely care about my kids.

Having another year with Lillian--though it has not been easy and Lillian is sick more than she is well, I would not trade a minute of it all.

OTC medicine--Really, I mean it...I love sudafed ( when the sinuses wreek havoc), tylenol, and ibuprofen

Finding Normal---My soul sister

God---who holds me up and helps me survive

Monday, November 17, 2008

Crappy Monday

I think I despise Mondays. I had a hectic weekend and Sunday nights I start to dread Monday. I know that I will be "single parenting" until Saturday again. (hubby works second shift) Rebecca has choir on Monday nights so it's always insanity trying to get homework done, dinner fed, breathing treatments done, feedings finished, make sure I have all the medical necessities and get out the door. Ten minutes in the car can seem like eternity. The kids were unusually grumpy this afternoon and once I've exhausted my "calm mother" approach, I'm screaming to be heard just to have some peace in the car----IN TEN MINUTES. Get everyone home get all in bed and begin to have that nagging guilt about what a "bad" mother I am. How I feel like I'm not doing a good job with them and how will they turn out when I've done so poorly.....sometimes I feel like I'm running in circles. Crappy Monday....can't wait until tomorrow.

A Couple Things

Age- My age has never bothered me. I'm 32. I have tons of grey hair, have since I was 20. My Mom went grey very young, so my sister and I are following suit. I am kind of to the place where I just don't care to color it. It's a lot of up keep, my hair grows like a weed. What I do mind is that fact that I have recently been compared to being like someone's grandma. Ok, so two of them were kids, but still. Does make a blow to the ego. Now, on a couple of occasions it has been adults. Someone actually asked me if I was Lillian's grandmother. (can someone please dig the knife out of my heart???) So I've been hung up on being called a Grandmother until about a week ago I went into a gas station and the cashier made the comment that she wondered if my Mom knew I was drinking coffee bc she knew I couldn't be over 18. I offered to pay her for the compliment, jokingly, but it did comfort me a bit, considering she was likely my age. I got out to the car and then realized I was probably being "hit on".....i think I'll take Grandma.

"Not Right"- My Mom, Sister and her Fam came over for dinner tonight. (my oldest was being delivered by my sister as she had spent the night) I made a large spread (noone helped with the dishes, btw) we were chatting and my Mom began talking about this woman and how much she admired her. She admired her because of how she treated these couple of adults that were "not right" at church. I spoke up and said, people will probably refer to my daughter that way some day, that she's "not right". It sounded so strange to my own ears. Even when the doctors told me that Lillian would be mentally retarded to some degree, it did not matter to me. (and by the way, when you are pregnant and people ask you if you want a boy or girl and you say all I want is a healthy baby...I got news, you don't care about that either. You LOVE your kids no matter how healthy they are, I mean seriously do you love them less???) It does seem strange to me though, that she may be known as the person who is "not right". Just sounding off, as it is rattling around in my head.

Saturday, November 15, 2008

Doesn't it boggle the mind sometimes?

Today it is nasty, windy, freezing cold and raining. I have not been to the store in about a month and of course Lillian has been horribly sick and I refuse to take them all to the Vortex (see previous post comments ) by myself. Cabinets are empty almost, scraping together meals for the last week, I know I have to go to the store today, but this also breaks my rule of going to Walmart on the weekends/evenings. Seriously, I HATE to go there on the weekends or Friday night. I think I will get up early, before the rest of the world gets up and go. I (big pat on the back) drag up at 0620, get my girl's treatment going and feeding and all that good stuff and sit up with her until about 730, wake up DH who I let sleep in, get myself ready and go. I grab some breakfast which was very nice...go to Walmart, Aldi, Bank, Sam's Club, Gas station, all of this in the lovely weather. Now, you can imagine how much stuff I have shoved into my van....and I've had to schlepp all of this stuff through the rain, pump gas in the biting wind, and it's almost twelve by this time. My pants are soaked about 6 inches up the back of my legs, my socks are soaked and literally, I can't feel my heels anymore. Schlepp all "crap" we can't live without into the house or start to and decide Matt can handle the rest. Guess what I get..."what are we having for lunch?" Really, truly want to pummel him. We go on about the day him eating a sandwich, there is a roast in the fridge that I have left too long so I set it out to get thrown away. Matt says, "can you boil that?" I'm like "why" he says "so I can take it to Paul (co-worker) so he can feed it to the wolves" Need I say more???? I'm going to be featured on that show, Snapped someday. I hope someone will try to defend my character....

Friday, November 14, 2008

Surviving Walmart

So I'd like to go back a few years to when my oldest was in first grade. Let me set this up...Oldest is 6 at the time, others follow as 5, 3, and 1. I, in my insanity, take all the girls to Walmart. Bethany had just started first grade and wanted a haircut. Well, there is a salon in there, so I think...ok, let's do it. Sitting in there, Bethany is in the chair, Rebecca is watching a video, Isabelle is beside me and Madeline is in the back of the cart right in front of me. So the whole back of the cart is parallel to me...picture it. I have opened a huge hair book, you know the ones that show all the hair styles/cuts and such. As I'm already stressing out bc I've made it out of the parking lot and into the store with four in tow...well, of course all the kids are talking and the stylist is trying to talk to me....AHHHH, well, I'm trying to read this book and somehow Madeline flops out of the cart onto this book into my lap within a second. OK, so I recover from the heart attack I've nearly had, hair cut is done, pay, go to get dog food which is just around the corner..."mommy, I have to go pee", "me too", UGH, so, trudge all the way back to back of store to family bathroom. Kids are yelling at each other..."let me go first", MOOOOOMMMMMYYYYY, I gotta peeeeee" I look down, baby is missing her shoe. Ok, where is said shoe??? Must be in hair salon. Trudge everyone back up front, (re-tracing steps) find said shoe. I decide this might be a good time to enlist another cart. Put two youngest children in one, let oldest push empty cart. (this would be a great place for pictures or drawings or something visual) I'm walking between staggered carts, oldest behind, Rebecca by my side (in front of empty cart) and pushing youngest two in other cart. Everyone now decides they are starving, I'm starting to have a blood sugar low and think...ok, this was the worst idea in history, time to cut bait and run, but I MUST have milk for children. So, I'm making the round as quickly as possible to get milk in cart and get the heck out of dodge, when Rebecca makes a sudden stop, cart runs up on her heels, which in turn runs same cart into Bethany's mouth. All I can think is get out of this store as quickly as possible. I'm going come on, let's hurry, let's get out of here....I'm almost running to the milk...Rebecca is hopping on one foot whaling, and I look back, Bethany is standing dead in the same spot whaling and holding her mouth. Drag unwilling children to get milk, people staring at me, kids yelling, "MOMMY you hurt me"........Vowed never to take four children to Walmart EVER again.

Fast Forward to Present Day, I'm in Walmart a month ago, have Isabelle, Madeline and Lillian. I'm trying to squeeze through the medicine aisles with the cart when I come up behind a young black woman who was basically thin, but kinda has this booty on her...well, her butt crack is sticking out of her jeans about two inches (not exaggerating) and she's standing straight up. Ok, seriously, who could not feel their buttcrack hanging out like that...ewww. I can't get past her and I notice Madeline, glasses on the tip of her nose looking this girl up and down. I'm biting my tongue, praying, please please please don't say anthing. Madeline pushes her glasses up, looks the woman up and down again, and has this befuddled look on her face, by this time I'm stifling my giggles, still praying. We finally get around the buttcr-I mean woman, and Madeline grabs her own shirt, yanks it down and pulls up her own pants. ROTFLMBUTTCRACKO.

I think I've survived Walmart....

Thursday, November 13, 2008

Hypocrite Much?

I spent a portion of the evening speaking with a friend, someone who knows what life is like for me....I kept saying, don't feel that way....I'm such a hypocrite...I have the same feelings. I'm overwhelmed, feel like I can't do enough, worry what others think (obsessively). Truth is, I should just spend time thinking I do as much as I can (I think). Noone is an island. We are not meant to do it alone, although at times it seems we do. Why do we do this to ourselves? Nature? Am I surviving? I think that'a all I'm doing, surviving. In just "surviving" I feel like I'm failing, when it truth, I'm just doing the best I can right now. We are our own worst enemies. It's uncomfortable to be in the unknown all the feel like I don't know what I'm doing or if what I'm doing is enough. Is there an end in, will there be more days like these, yes. Can I do a thing about it, no...just survive.

Wednesday, November 12, 2008

A New Day

I'm feeling better today and not so BLAH, PMS is playing a big roll in my swinging emotions, I'm sure. I'm just glad to be having a better day. I posted the most recent pics of my lovelies. I can't help but be proud. Yesterday we had "forever" day at our Children's hospital. I think to myself...'self, why do we go to this particular crazy clinic, we are always up there FOREVER and there is generally nothing accomplished...except throwing us a new feeding loop to jump around.' But, still I go....I like the doctor ok, it's just always crazy and then I come away feeling like....why did we do that?? I guess I'm feeling less stressed knowing payday is this week. I hate living week to week....but I don't really NEED anything, I just want to be in a better place. Todayis a school half day and all the kids are home and it's cold outside here. In other good news, gas prices are way down. I can't remember the last time it was under two dollars a gallon. Funny, I remember as a teenager getting gas for .89/gallon. Hard to believe sometimes.
We are coming up on Lillian's second birthday. I'm trying to figure out the theme and what we will do. Kind of a bummer that she doesn't even get to have cake...but we MUST celebrate. Birthdays are very important, I believe. I always make sure the kids have cake on their birthdays even if it's just us. The big 2 is also important as we were told that 70% of children with Lillian's "defect" do not live beyond age one or two. This is something I used to really be wary of. Every time she got sick I would wonder if this was "it". Maybe I've just closed my mind and decided I can't live on that, maybe I am living in today and not worrying about tomorrow. What good would it do me anyway? I can't change tomorrow and I know who holds tomorrow and if it was the last day for any of my family or my precious angel, I know where they would be waiting for me. Have to find a way to cope with it. Is it morbid to think on such things? Maybe. But until you've stood at the bedside of your child trying to cling to life, I don't think you could criticize. Her birthday coming up throws me into reliving the passed days. Her birth, the struggles, the victories, the life that is being lived in her capacity. Someday, when I don't have probing eyes, I'm going to relive in writing things I've never talked about, but another time. I need to express it. I guess there are many things I need to be doing, but will likely lay down on the couch, as Lillian had a long restless night. Wrapped up in a quilt vegging. A good way to spend a new day after a LONG day yesterday...

Monday, November 10, 2008

Throwing in the towel

Well, I've decided I'm going to try to take on another nurse. As much as I'd like to handle everything myself, I just can't do it. I need help and since I can't get any from the people that I should be able to count on, I'll have to pay someone. I really dread the whole thing, but at this point I'm stressed out beyond words. I'm mentally and physically tired. I think the mental aspect is probably much more difficult than the physical. I need a mountain dew...

Saturday, November 8, 2008

Headed for Action

Today has started out just lovely. I awaken to Matt screaming like a banshee (sp?). Always a bad sign. He was in a ripe mood. Kind of glad he went to work. He's decided to keep working evenings for a while, oh joy. Oh well, just gotta go with the flow. Anyway, I'm headed to a birthday party with all the girls and and will get to visit with some old family friends. Looking forward to it. I got some really cute clothes for my baby girl from Finding Normal, and they are SUPER cute! I LOVE hand me downs! This sounds pathetic, but I've actually bought clothes for the big girls on ebay for Christmas. Well, heck, I'm poor (financially) and my kids are starting to want name brand things and we just can't afford 30.00 for one pair of jeans......(not to mention that I think it's ridiculous) the funny thing is, that they look exactly like the ones in the stores...aeropostale, old navy, mudd, jeans look like they've been worn fifty times before being hung on a rack. Guess I better go, I hear the shower calling my name.

Friday, November 7, 2008


Ok, so I'm trying to set up my first blog page and my 5 are trying to drive me NUTS! Why did I think I could do this right now????