Sunday, August 30, 2009

I hate Sundays. It's incredibly spiritual of me-I know. But I always have. I think it started with the school know, the dread of starting the school week. And since in my mind I'm still a 'young adult', I've never elvoved past the melencholy of Sundays. It seems like the end of all the fun and the beggining of I love the weekends now because it means Paul is home, sleep, meals out, no laundry....teamwork. But, I still dislike Sundays because they signal an end to the weekend (man that was quick) but mostly because it means we have to mobalize and "get to church". This is terrible for many reasons I could name (or complain of), but to give you an idea....I will just tell you about today (which was, by far, the most successful venture we've had in 1 year).

I will spare the details of getting ready, but it basically involves me dictating orders (this sets a great tone, right?) from the shower on how to start getting the kids ready. By the time I am out of my 2.3 minute shower, the whole family is waiting on oItalicur bed for further instructions. G is already crying because I don't want to go to my class and I AM wearing my spiderman pajamas and WAIT JUST A MINUTE LILAH (who would regularly nap, but was being forced into something pretty, and pink, and smocked). I am trying to decide how wet is "too wet" for church hair and if lipgloss, and mascara counts as "ready. Paul is all "what shirt do you think" and I am all "which ever one is faster". Garrett lags behind the race to the door because he's gathering up toys he wants to take with him, as if he's going off to war....which, in his defense is how he views sunday school. After a spanking (it would not be pre-worship without one) for refusing to get in his carseat, we make it to church (late) and snag a visitor/special needs spot (don't anyone tell me if you don't think we qualify).

We arrive during the first prayer to find the back 10 rows roped off (to promote a more intimate feel)...I have a feeling the powers that be might rethink that strategy after the poor row 13B had to suffer through a fussy, un-napped infant and a 2 year old who paced the row behind them asking for 'something new' 16,385 times and then rustling all the ziploc snack bags he found in my purse. At that point Paul and I start exchanging meaningful glances and it is non-verbally agreed upon that L is too noisy and should be taken out. Good bye Paul. After thuroughly enjoying the kneeling portion and then finding the songs unmoving...the little prince declared he was "ready" to go to class. I hop from my seat to usher the guy back there before he changes his mind and miracle, he goes in like a champ. (If I've failed to mention this before....tears,leg clinging snot, screams, chase scenes....that's usually how he rolls).

On my return to the sanctuary, I heard my baby crying and found a very frustrated dadda and very sweaty Lilah. I took her to a secret roccking room and then snuck back into the sancuary to *gasp* hear the sermon. I snuck up to the balcony because sweet L snores like a water bufaloo and I was afraid no one would be able to hear (because I couldn't:). At that moment I realized that Paul and I were actually worshiping in the same room--definate progress. It's still really hard for me to be surrounded my other kids Lilah's age, especially as their development widens the gap even more. I can't help my self from watching a little boy climbing the pews, or sweet pudgy arms reaching out to say "I love you momma".

The final moment of notice came when P retrieved G from the nursery and , from the balcony, I could see sweet Paul's face pouring out praise for G's successful day and then I hear Garrett say, loudly, "I WANT MY NEW CAR NOW!" I laugh for 20 minutes because a. I'm slightly embarassed that all of my church knows the secret to my parenting genius (ha!) is bribery and b. if that's all it took for a good day at sunday school, why the hell did I not think of it a year ago????

I shouldn't say I hate Sundays...right now I'm snuggled up against my man watching football (boo!) and eating whirly-pop.....and that's pretty great. I think I just need to adjust my expectations about what Sundays should be. Current vision looks something like this.....sleep in, have great, slow coffee, hang out with husband, shower, church on time with greetings before and visitations afterward. lunch anywhere. home to read paper, take nap. repeat. maybe exercise. My new goal is just to make it in the building, fairly clean, and with everyone still claiming the family.

Thursday, August 27, 2009

Lilah saw her beloved cardiologist, Dr Bremer, and received a glowing report. Her VSD (hole between l/r ventricles) is 'tiny' and her ASD is 'looking good'. We heard, for the first time, that surgery to close the larger of the two holes is a 'maybe' instead of a certainty, someday. The blood was flowing through her heart in appropriate directions (not mixing blue and red blood as before). Her cardiomyophathy (diseased heart muscle) looked unchanged--we did not expect any change here. Paul and I use the phrase all the time "it is what it is", meaning there is nothing you can do about it--she was born with a genetic map for 'messed up' heart muscle (along with lots of other things) and no amount of anything will change that muscle. But...right now (and without much medication) the muscle of her left ventricle is pumping normally. As Lilah's mother, I don't get to hear "normal".....well, ever. So that was my favorite part!
Actually, it's all my favorite--what great reassurance that she is doing well (at least from a cardiac standpoint).

There were a few tiny "we'll keep an eye on this" kind of things, but I really am learning not to worry until I know I should be. Swine flu does not have a hold on me! :) Or maybe I'm just so desperate to send G to preschool AND dramatically reduce L's sick visits over last winter.....that my 'power of positive thinking' is going into over drive. Really, I think I'm beginning to figure out that worry is pointless--there is a God (it's not me) and He knows the number of all of our days. Which works out great for me...because I don't have time to worry and am pretty sure I am powerless over the pig flu. (*I feel compelled to remind everyone that my grandma is concerned that this H1N1 flu is giving the swine a bad name. Don't discriminate again pork people--what would that do to the economy??)

All kidding aside (for 1.2 seconds), our continued gratitude for any and all prayers offered for Lilah and our family is the most humbling thing that has ever happened to me--that so many know and care about her is mind-blowing. The Lord hears our prayers and has blessed her life.

Tuesday, August 25, 2009

Garrett, apparently afraid that the horns growing out the top of his head will be captured on film, refuses to have his picture taken....unless you pretend to be taking a picture of one of his prized cars. :) I want all my Hoosier friends to notice the IU pride!

sweet Lilah with one of her 'therapists'....."social" is definitely her strongest skill!

She's not really sitting up as well as this picture suggests, but making progress. I love this picture....she looks like she's doing some serious 'work':)

The update around here is good....busy, but good. I feel like a medical professional sometimes...and I love the work of 'dealing with patients' (i.e. my children) but hate all the 'other stuff'. I could fill several days a week organizing all the interventions, doctors, phone calls, medicine ordering, insurance, nurse questions, scheduling, therapies, and so on, and so forth. I don't like it, I'm not good at it, and it never freakin ends. Just like anything, it gets easier...more managable...less overwhelming...yada yada. I miss the days when my mind was filled with the news (and by news, I mean 'celebrity gossip') instead of the things of today.

Sunday, August 23, 2009

This is just something I wanted to share with the group (haha) and am far behind on my random thoughts..... I bought this for Garrett this summer:

And by 'bought', I mean 'search out on the www, ordered from overseas, and payed more than was worth'. Somewhere after the time change, after the transition to big-boy-bed, and before potty-training... "mr. independent" (I use this term loosely, as he is still the child who would crawl inside my shirt if he smelled a nursery or unknown sitter within a 5 mile radius) started getting up with the chickens!! And me and Lilah, who also gets up at an unholy hour. So it wasn't so much that he was waking me up, it was just that I felt he needed to be sleeping longer-- I won't bore you with all the details on why I thought this to be true. Besides, everyone knows that true parenting genius involves trickery, superstition, bribery, and threats to get your child to sleep longer than they want and/or need to survive.

This is funny (to me) because I was so excited about this clock (sheep sleeps during set sleep times, and hikes during nap times--a stroke of genius, right?) and like most of my 'ideas', didn't quite pan out in the way I had envisioned (i.e. obedient and silent child waiting in bed until sheep starts hiking). The first night he said "ok", but woke up the next morn way before scheduled time and I made him stay in bed until time (screaming). The next night I checked on him in the night and the clock was shut and shoved under his pillow. The third morning he again woke up early and I said , "Garrett, where's your clock? What's sheep doing?". Garrett: "Ugh, nope. I turned that clock off". The equivalent of giving me, my controlling ideas, and the stupid sheep clock the finger.

And, like so many things...just when I was about to sell him to a band of traveling gypsies, he started sleeping until a respectable hour....all on his own. So, if anyone wants a 'sheep clock'....I'll sell you mine for a discount.:)

Wednesday, August 19, 2009

Prayer Request

We know first hand that God hears the cries of his people. Please pray for a friend of mine's newborn baby, Maggie, as she is flown from Knoxville to Philadelphia today for open heart surgery. Pray for peace and strength for her parents.

Sunday, August 16, 2009

We met in a bar. Charlie Peppers...the night after a Florida football game. It was a sea of faces but my eyes met his, and I fell off the cliff. The rest is details...we were married less than 11 months later, 6 years ago today. At first we were always a little skittish about telling people, or certain people maybe, that we met in a bar--how many times do single people hear they are 'not going to meet the-real-deal in a bar'? Six years, 2 kids, and a lot of other stuff later....this feels like "the real deal":).

Last September, the day Lilah was transfered from a regular bed to the ICU at Children's...the day we were told she was in heart failure with multiple cardiac defects and likely much more....I remember thinking--"Our marriage is screwed. It will never be the same." I'm sure this seems odd, but I'm a big-picture person and the impact a child with special needs can have on parents and their marriage is not an easy one. Later in the day, when L was stabilized and the spinning of the room had slowed, Paul left me with my mom and went out to "get some air". Here we go...he's running already I thought.

My sweet husband returned a short time later, eyes red rimmed, and took my face in his hands. He looked me in the eyes and told me, "We are going to get through this together. We are her parents and we have been entrusted with her life for a reason. God has not left or forsaken us, and we will make it, whatever is ahead." Or something like that. The point is it was exactly what I needed to hear...from a man that is exactly what I need (and what I want).

We really do mean it when we say this last year has been such a blessing and one of the biggest ways has been strengthening our marriage. We have clung to one another (at times feeling like passengers on the Titanic and at others like climbing partners who took Everest) and kept each other going (usually passing one another, as if on alternating escalators of emotion).
Anyone can survive the easy times, but the honest truth is that life is full of hard times and marriage is work. The great thing is when you love the one you work with:).

Monday, August 10, 2009

There are many levels of hell in parenthood....I know this because I'm mentally creating a 'scale'. Stretch marks are on the low end....your toddler throwing a wall-eyed fit in the middle of Target being mid-range....with the tippy-tip-top of the scale being a stomach virus, in the middle of the night, while your husband is out of town, and your baby needs her paci 3 times and wakes up at 5:45am. And I know this because I am now seeing the light after a near-death experience with the kind of virus that scrapes your insides out with a machete and shoots them out both ends of your body. That's all I'm going to say about that (already too much, I know). At least now I have the upper tier of my parenthood-hell-continuum mapped out.

On a slightly related note, I am reading (and by reading, I mean listening to on my iPod) Born to Run. It's a very interesting story about a 'running tribe' in Central America that plays this game where they run for 2 days, kicking a little ball back and forth. After a wild night of partying. Wearing a robe and wooden sandals. I either wasn't listening or haven't gotten to the part about the point of this running game (a side note: Paul says I was listening on 'shuffle' which means the chapters were not in order. and I didn't notice. ha:)....but I did hear the part where the author quotes a tribesman (or someone--- the details are not important) as saying this game is like the Game of can't control it and you can't predict what's coming, all you can do is adjust.
That's some wisdom there. Running must be good for your brain. And, If I hadn't lost most of my functioning brain in the virus-related events, I'd make some sort of analogy to my life. All I know is...I can relate. To the adjustment part and the lack of control part and the inability to predict part....not the 2 day run!

Sunday, August 9, 2009

beat the heat

it's too hot for me to have constructive thoughts....except those longing for fall. but, as you all know, i'm never too wiped out to share pictures of the most beautiful babies on the planet:). here are some things we are doing this summer. enjoy!
boating with my parents and Uncle Jeff

sweet Ya enjoying an afternoon nap on the boat

this is one of my many attempts to keep this little girl cool...a battery operated fan hanging by a clip (fyi: she was holding another one and playing with the foam blades).

the best of cream!