Monday, April 27, 2009

look at this O2-free face!
Lilah is absolutely a Daddy's girl:)
Garrett trying to convince me that jelly beans give him muscles:)

Life is great.  Seriously.  I'm trying really hard not to let my "mood" be affected by circumstances, but it sure is easier to be joyful and thankful when things are going your way, isn't it? Lilah is off oxygen during the daytime hours and it has changed her life, my life, our life.  It is fantastic! Also, Paul and I left the kids and spent this past weekend here.  It was total freedom, relaxation, and...sleep!  I am reminded a lot lately of how quickly things can change.  Good to bad.  Bad to good.  Whatever--just proof of the importance of one day at a time.  As I return from a getaway with my love, kiss one baby's sticker free checks, and run my hands through another's precious curls....I praise the God of miracles for this day.

Wednesday, April 22, 2009

Listen.  Can you hear that? It's me....dancing on my kitchen table, shouting from the roof, and squealing with delight!!! woo hoo!!!! Today, April 21st, we were free!!! NO OXYGEN ALL DAY!!!  All the exclamations are annoying and I'm celebrating prematurely, I know.  I just can't help myself:).  It is amazing!!!!
I've been trying to talk myself into the idea that the oxygen tank was not that big of a pain in the donkey deal.  You know, it's just an accessory, or something like that. But, after experiencing daylight to dusk 'generator free'....I realize I was full of it.  No background noise that sounds like an iron lung.  No tangled cords.  No tripping on tubes.  No wraslin (this is the technical term) Ya to get the prongs back in her nose. She hung out on my bed while I showered and played with toys.  We went outside!  For the first time in 5 months, I was able to pick my baby up without thinking where is the tube, can I reach the kitchen, should we move the generator to another room?. I was able to care for both of my children's needs (as much as this is possible) because we were mobile. We were together all day because I could drag Lilah around with was amazing!
The ironic divinely mysterious thing is--I had just given it up. Given up the my life will be better when she gets off that oxygen thoughts.  Given up postponing life for the day when.  I had quit dreaming of all that we could do if Lilah were oxygen free.  I'm pretty sure it was more of a defeatist attitude than any sort of maturity, but a good lesson for me none the less.  The Lord continues to teach us to turn everything over to Him and remind us that His ways are perfect.
In other (huge) news, we went somewhere as a family!!! All of church on Sunday! It was really encouraging and not nearly as difficult (i.e. nerve racking) as I thought it would be.  I am so glad to have RSV/flu season behind us:).
Clearly, I am on cloud 9 around here.  Trying to give myself a pep talk about not riding the highs too just gives you that much farther to fall the next time bad news comes around.  But, oh the joy!

Sunday, April 12, 2009

We just got back from a visit to my parents for Easter.  My mom is definitely G's best friend and he always has such a great time there (as do we).  Here are just a few of our adventures....
My parent's cat had kittens!!! Garrett hauled them all around and they were such good sports.

My dad doing the classic "airplane" feed.

My grandma, Lilah's great-grandma.  She's tiny and makes L look huge:)

Egg dying!! G had an interesting technique..'.whole-hand-quick-dip'.

Swimming in the not-to-hot tub.

"Ahh-Ew".  This is how G says ah-o (how do you spell that anyway?)

Family pic.  Best we could do:)

Our little bunny (note the 2 bottom teeth).

Thursday, April 9, 2009

When I quit working before Garrett was born, I thought: This is it. This is what I've been waiting for. I had visions of leisurely mornings in my pajamas, playing with babies and sipping coffee before heading off to the gym. y e a h. r i g h t. I did get the pajama part right:).

Everyone always says how parenthood forces you to be selfless, but I've got to say....I am not feeling it. I am feeling more selfish as the days go on....thinking of all that I've given up, the sacrafice I make, the burdens I bear.

I don't delve into lots of "resources" for parents of special needs kids because a) I don't have time, b) I really, really do not want Lilah's problems to define her, me, or our family and, c) I am sick of people telling me that she's such a gift because Taking care of her is an incredible burden and it sucks!!!! For me.

I miss the days that I could watch the news without drifting into thought about whether her meds need adjusted, how to treat the newest sore, or when she got her last breathing treatment. I want to rock my daughter without the tether of tubes and machines. I am tired of planning my life around doctors and therapies. I wonder if I will ever be able to leave her. And, I am tired of being a prisioner to it all. I wish I didn't feel that way--it feels ugly, bad, selfish.

For those of you gasping in's ok. You don't need to call my husband (he knows) or a counselor (he'd say it's normal). I am not about to jump. And, it's only half of the story--of course I love her....she is not a burden. The truth is, she is a gift. Lilah herself is beautiful, joyful, and totally innocent. It's the suffocating burden of responsibility and tasks that I hate. I write this because it's (painfully)true, and I hope that I look back someday from a different 'place'. A place less focused on me. A place that is focused out, instead of in.

I am relating to the Easter story a bit differently this year. In a tiny, tiny way more aware what it means to die so that another might live. It makes me ashamed of my self pity--that Jesus died and rose again, for me. And that, lies my freedom.

Saturday, April 4, 2009

Tubes went great! Granted I don't have a lot of outside entertainment these days, but it was kind of fun....or funny, at least.  Garrett was absolutely hilarious and a perfect patient.  They gave him the "happy juice" and said he's be asleep or very groggy in 10 min.  15 minutes later he was saying "whuuuzzzzz uuuuupppp" and making eyes at the nurses, like a 20 year old at a keg party.  Other than a little post anesthesia crankiness, there was no aftermath, no recovery!  We are so glad to have it over and I'm looking forward to removing 1 patient from my list:).

here is Ya doing some 'tummy time'

my niece feeding her "lilah" through her belly

fyi, here is her tube. kind of hard to see on here.  there is a "button" on her belly (which is held in place on the inside with a water inflated balloon).  you open the top, put on the connection tube, and gravity pulls the food in via syringe.  

the paci posse....I was going to get rid of the paci when he was two...then L was born, then she got sick, and then I got he is going to have it until he goes to kindergarten:)

Wednesday, April 1, 2009

Today I have a lot of questions....

1.  why can I not get organized?
2.  are those "word verifications" on websites real words?
3.  why did Dante omit  'taking both children to overlapping dr appts during toddler nap time'  from his circles of hell? 
4.  can someone tell me a stress reliever that is not illegal, or unhealthy, takes little time, and
can be done with your children watching? (this is not a joke, really asking here)
5.  how come no one told me that coffeemate has calories? (at 3 cups/day, the math is not
6.  do people here really say words like "therpy" (therapy) and "swallered" (swallowed) and
"yuns" (you ens--- as in, "do you ens wana go to Cracker Barrell?).  I heard all of these in
the waiting room, right before I turned my ears off.
7.  will things EVER calm down here?  

We took Garrett for an ENT consult today and to make a very long story short, he's getting tubes tomorrow at 10 am.  Tomorrow?!   With all that we've been through over the last few months with Ms Lilah, this really doesn't seem like that big of a deal (but, I am learning--and will bring tissues for sure!).  That in itself kind of makes me I really so emotionally exhausted that I can't generate some stress/fear over my child's surgery?  I am most worried about how to keep him from driving me batty for juice in the a.m. (by the way, I just told him he could have all the juice he wanted now, but none in the morning and he started crying--good luck to me).
Lilah is doing great! She's gained a pound in a month (great for us--15.4lbs total!) and.... drum-roll please....she rolled over! She continues to perfect the monkey shriek and is really enjoying lots of toys.  I'm starting to shop for some more "activation" toys...she loves lights and music and mostly, herself!

*8)  why can I not figure out Blogger spacing ???