Thursday, December 31, 2009

I can't believe it's 2010....I signed a check the other day "2002". I can remember when my parents used to do stuff like that and I would think 'they are so old', which, come to think of it, was exactly the look our babysitter gave me:). I can also remember celebrating (as opposed to watching football, which is what I'm doing now) New Years in my 'youth', as if it were some hallowed occasion, when in reality, my life was all about me, in that moment--what did I care what year it was, much less what I had 'accomplished' or 'survived' that year. Anyway, today I definitely feel a 'whew, we made it'.
Here are some year-end thoughts:

1. There is no freakin end to household chores....laundry, dishes, and mess wait for no one!

2. Everyone in this life has misery and sadness and crisis of some sort coming their's prudent to have your 'stuff' together to be able to deal with it.

3. There are people out there that enjoy the pain of running and there are people out there that enjoy the pain of a deep tissue massage. I am in group B. I run only for the mental health and jean size payoff.

4. Time does heal. Not completely, but it definitely dulls the sting and gives you time to learn how cope and prepare.

5. People do not intend to say incredibly hurtful, insensitive things...they just do, mostly without even knowing it. It makes me cringe to think of things that have probably come out of my mouth over the years that have had the same effect.

6. No mess on record holds a candle to 'snow globe from highchair' debacle. I thought 'vomit covering pile of 150 tiny animals' and then, 'playdough in dishwasher' were contenders. Oh no. We are talking water, glitter, and tiny shards of glass for days.

7. Everything in life is relative....everything. That's what makes human relationships so fun/confusing/difficult....every single person comes from a different reality. One person's good is another person's terrible. I'm going to do a documentary following several families and how their situations relate. I'm going to call it "Reality Check" and I can't tell you anymore because the producers are in negotiations. just kidding

8. God has a perfect plan for our lives....and the kicker to me's unchanging. He knows the plans he has for us and they are good plans. This might be total laziness on my part, but I'm clinging to that promise and trying to throw out any plans I might have had--ever. Because, this, this mothering of a child with so many challenges, is beyond any plans I had or could come up with. The comfort of knowing this is the plan of a sovereign, perfectly loving God allows me to lay my head down at night.

9. Apparently my life's calling is shuffling. Not cards. Things. Shuffling all the stuff that belongs to my family to it's appropriate place. You are what you do. I'm a shuffler.

10. 2009 has been a year of miracles, big and small. We are so thankful for sweet, steadfast friends and prayer warriors; for our families, who love and serve our children with such joy; and to our God, who continues to hold us tenderly in the palm of His hand and provide for our every need.

A new year is for taking stock, thinking of where you've been, and where you are going. But the honest truth is, right now I'm not ready to think about the hardness we've been through and fear keeps me from wanting to know where we are going. Today is good enough for me.

Happy 2010!!
We had a great Christmas...celebrated early with Paul's family and spend the week of Christmas in Indiana with my family. The kids, of course, were so fun...and even though we all tried to restrain our gift giving, it was still out of control!:) Here were some of the highlights--

Monday, December 28, 2009

you probably can't tell, but this is garrett "feeding" lilah. he was pretending, and i knew that...but i don't think she did:) look at those faces. the commentary was the best part...G saying 'hold still, sweet girl'

someone has a new trick....pacis, seatbelts, cups, and pirate hooks--all things that are fun to balance on your foot:)

just two babies enjoying some morning juice. except neither one looks much like a baby:( lilah's juice is thickened to the consistency of honey, fyi.

some of my very favorite moments as a mother (or "muda", says Garrett) are when my kids are enjoying each other. try to look past lilah's mullet....i took several well intentioned 'hints' from my "muda" and trimmed it.

Sunday, December 27, 2009

I will begin by apologizing if you happened to be shopping in the Newburgh, IN Schnucks grocery store last week. Garrett and I were 'loosely' shopping for somethings in the dairy case when I hear him pass a significant amount of gas and giggle.

I say: 'GARRETT, what was that?'
G: I was just gassin
**silence because i'm too shocked to know what to say and, clearly, a little slow to respond after looking away shocked because.......

when I turn back, precious boy has his pants and underwear down, and his neck craned down to look in said underwear. (remember we are in the middle of the dairy section 2 days before christmas, i.e. not alone).

His gaze caught mine that said "what the bleep are you doing????" and he very calmy replied:
"Checkin for poopy."

Friday, December 25, 2009

I love Christmas...who doesn't right? I love the music, the food, the parties, the cards, the cheer. Everything sparkly, fresh, I've thought this year alot about the "something new". It is my 3 year old's mantra--"I want something new". He says it often...rummaging around my purse or looking throughout my car for something else, something new, something different, something more.

The battlecry reached an apex this morning, as Garrett was in his element....riping through presents... "which ones are mine?", "do I have any more?", "I want something new!". Of course, I'm sure this is 'normal' child behavior, something all children do (don't tell me if yours don't)--but it makes my skin crawl! It sounds terrible to hear--makes my hair stand on end(not to mention embarasses me)---and confirms we are raising a spoiled brat.

In all my quiet time, siting in front of my tree, sipping cider with my feet up, and reading my devotional (this is a joke)....I have had a revelation: Garrett is no different than me, just more honest. Because that's why I love Christmas...the 'something new'. Not the new 'things', getting or giving presents. For me, it's the 'perfection'...the decorated houses, the shiny lights, the smiling faces. I know full well it's an illusion, but it draws in me every time. If I'm honest, it's not the celebration of the birth of Jesus (as I know it should be) that's gets me all warm and fuzzy--it's all the trappings. I get caught up in expectations of Christmas in my head. And, just like Garrett, it's never enough. I've recognized this flaw (and many others) within myself for years...trying to focus on what's real. The reason for the season and all that. But, at the end of the day, or the party, or the season, I still feel it. The "I want something new" void. It wasn't quite enough.
And, this is where the revelation part comes,.....that's okay. I think that's how God made us--to have a deep yearning for something more. To know and love the gift of Jesus, but also to thirst for not only 'something new', but for all things new. I recognize that the baby born to save me from my sins was the perfect gift, but it did not make things perfect. And I want perfect. I do, and it's okay. Jesus gives me peace, and joy, and freedom....but there is still a whole lot about this that is no where close to right, not to mention perfect.

And He who sits on the throne said, "Behold, I am making all things new."...
Revelation 21:5

So, this Christmas, I'm taking it easier on myself and my kids (yes, Lilah has a case of the 'something new's also). As great as this celebration is, and as sweet as my gifts, I know there is something more. Feeling like it's just human nature, trying to focus on that redeeming gift of a baby thousands of years ago, and looking forward to the day when Jesus comes again. To make things perfect and right and new...for eternity.

Thursday, December 17, 2009

Mr Garrett came through like a champ! It is over and he's doped up on a little thing called Lortab for 5 days...clearly I had underestimated the pain of removing a non-essential mass of tissue behind your nose. The surgery itself was barely long enough for me to go to the bathroom and as I rounded the corner to recovery I heard a scratchy, but very loud, voice yell "It's like a gun", excitedly! (obviously the pain meds were in full effect and G was feeling right at home, using his 'usually reserved for family-only' non-inside voice....can't imagine where he gets it:)?!). Anyway, the 'gun' was his IV, which quickly came out as a troup of nurses were scurrying around him like he was a diplomat. I am not joking, those women were swooning over those curly blonde locks!

Of course, as soon as I got the little patient home, he promptly barfed all over me, my wool sweater, my hair, the carpet, and his beloved animals. The fun here never ends people!

Wednesday, December 16, 2009

Sweet Garrett has two "moods"...the first, precious, obedient child keeps me from killing the one that screams "no one can look at me!" About a month ago, with my patience wafer thin, I called the pediatrician with very little history and I just wanted a doctor to see him. Of course when we get there, Garrett's gregarious as can be....sweetly chatting it up with all the nurses, who must be wondering why I have him in don't i have enough visits in there?. G couldn't have been any better of a patient, which again made me seem crazy that I had already told his nurse his only symptom was rottenness that we were there to rule out any illness that would prevent a total crackdown on behavior after Dr Peeden told us he was well, the beatings would begin.
It didn't quit work out that way....He had double, severe infections and one tube was out and the other was clogged (he had PE tubes in may). Dr. actually said that it was 'a wonder he's been sleeping or functioning at all."
The beatings were called off at that point and surgery set for new tubes, with the addition of adenoid removal. After 2 rounds of antibiotics and lots of crankyness, the saving surgery is upon us.
Garrett goes under the knife tomorrow at 9:45. I, ever the multitasker, am wondering if the nurses will let me in to clip his nails, cut his hair, and pop this huge blackhead, that I have been stalking, and bargaining for months, at the base of his nose. tmi, right?

Sunday, December 13, 2009

My waves (some gentle, some tidal) of sadness and grief over the last year usually roll in without notice. The sadness, fear, or just dull ache is often over something specific concerning Lilah's disease (if I dealt with all of 'it' at one time, it would sink me). Right now it about missing the baby I never had. Longing for a chubby, curious baby to snuggle up next to me. Expecting to find evidence of my 'baby' getting into things. Wanting to look over and see her exploring something besides what I dropped in her lap. Listening for sounds like 'talking'...."momma". The closest way I can explain it is, like phantom limb syndrome. I know it's not like she's gone. Lilah's very much a beloved member of our family and we wouldn't ever trade her situation for different. But in my heart, something tangible feels missing. Even though I know and want Lilah here, I feel like there is a baby missing too.
It's not near the darkest of my grief, but I share it for healing and because it came up today in church.
Not my grief specifically, and thankfully....since I already had to excuse myself to the restroom once to dry my tears (i almost always cry at church, i did not bring tissues, and i was surrounded by tiny babies who were strong, and bright-eyed, and ....i was jealous). Our pastor was talking on this verse:
I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. Romans 8:18
I have to say, this is usually one of those verses where I think I'm just not spiritual enough to trust that to be true or even want it. Why can't we do away all together with the sufferings?
And, I probably missed the entire main point of his message (b/c I was too busy wiping snot on my sweater), but he said "Suffering, whatever it is, and we all have it, is not going anywhere. And if you try to endure it alone, it will sink you." This was my 'aha' moment (ode to Oprah). Our culture tries to 'fix it and forget about it' when problems arise, making it doubly hard to deal with suffering that seemingly has no endpoint.
Things in our life have gotten so much easier from a logistical standpoint (easier feedings, no O2, less medicines, sitting up, having help, etc.), but all the grief remains. Maybe not all, but the remainder, I am learning, we will carry with us through this lifetime. This suffering is not going anywhere. I don't have to work to 'get through it' or 'get over it'. Some of it will just always be hard, terrible, heart-breaking. But, it doesn't have to be crushing or isolating or devastating.
Our family has been through more in the last year than I thought we'd be capable of doing and I know the only way it hasn't sunk us is that Jesus bore the burden. He carried us through days so dark, that I have little memory. And there have been such riches and glory on the other side. As terrible and hard as times have been, we would not change them. God's plan is exactly where we want to be.
I know my life will encompass much suffering beyond what I already know and I have absolutely no plans of going it alone.

Thursday, December 10, 2009

My Christmas cards went out today...finally. And, no, they are not handmade or anything exciting--it just takes me forever to accomplish tasks like that. This friendly post is to say:
1. if you didn't get a card from our family, it means I lost your address in a freak computer incident (I am not kidding, I deleted 1/5 of my list). e-mail it to me and you, too, can have a picture of the burches laying around your house collecting dust.
2. if you receive 2 cards from me, i'm sorry....i'm just disorganized like that.
3. if you live in my neighborhood, hold your horses. i will be hand delivering to save postage. and since i already bought enough stamps for all my cards, i will be using the virgin mary & child for all other mailings until halloween.

now on to the baking.....a 'task' i enjoy so much more than the cards.:)

Tuesday, December 8, 2009

We had some family pictures taken this weekend and although I can't seem to get the header centered, I thought I'd share my joy because there is nothing better than having beautiful pictures of your children! She came to our house, was super sweet and patient, and didn't bat an eye at all my bribes (and subsequent threats) to behave and SMILE! Best of all, we didn't have to sell the farm to pay the sitting fee and I 'get the disk' (a.k.a. the usually outrageous record of every shot taken). Merry Christmas to me....and to you, if you call Olivia at Backseat Photos.

Monday, December 7, 2009

I love this season and have been busy decking the halls...for the last 2 weeks. My assistants have their own ideas regarding help, and it's slowing my process down a bit. :) The assistants are enjoying themselves immensely...and that's what it's all about.

G has taken the stockings off the mantle and onto his feet many times.
They are his PJs, he says.

L doing some 'help' during some holiday cooking:)
sweet girl marvels at the lights...she is so excited!

Sunday, December 6, 2009

Why is it that things never really turn out quite like you expect? Our church had a Lessons and Carols Christmas service tonight. And although we have still not perfected our 'Sunday morning plan' (i.e. the 4 of us never show up together), we went for broke tonight (in the name of Christmas) and took both kids to a 6PM worship service. And we ended up...well...broke. Emotionally, that is. I had visions of basking in the love, singing hymns, loving on my children in the glow of the giant Christmas tree.
I know how ya'll love the comedy of errors that is the Burch family and church so here ya go:
We arrived late, of course. Because, in the first time since I can remember G slept until after 5pm and then insisted on a full course meal--both of which are independently extremely rare. So, we are late, park in 'special needs' parking, and sit wedged in the back corner in 2 folding chairs. Let me give you a heads up, that 2 folding chairs are not enough to accommodate 2 adults, 2 children, 4 coats, and a purse/diaper bag/magic sack the size of Texas.
I kid you not, in the first 30 secs Lilah had already dropped 2 pacis on the floor and G insisted he needed a drink. Paul took pass #1 by the men to our right with G and I started the dig in the magic sack for 'something new' for L. Pass #2 back to our seats brings an already whiny Garrett asking if I had Cheese-Its, because everyone knows you can't worship without a snack, especially one artificially cheese flavored. I did not have the requested snack, but he finally decided a candy cane and some Teddy Grahams would suffice. Between the rustling of the sacks, the chomping of the candy, and Lilah sucking on her teething ring, we were starting to draw some looks. I can't remember the offense, but Paul had to take G outside for 'a talk' (pass #3 & 4). At this point L is lunging for some unknown destination and G declares he's ready for Sunday School. I ask him if he's sure, he says 'yes', and feeling like I cannot pass thru our row again, we walk in front of the whole church to the exit. We are not 2 feet from the nursery door when he drops to the floor crying, like I'm about to send him off to Boy's School (which, by the way, I am now thinking about). He makes a huge scene, I receive several "I'm sorry" looks from passerby-ers, and we head back to the lobby. Which was convenient, b/c Paul had already bailed from the service with L (pass #5 & 6). We commiserated for a few minutes before deciding I should retrieve our things (pass #7 & 8, I can not even make eye contact with the poor men in my row by this time).
I get coats, purse, and scattered snacks/toys and we decide to cut our losses and go. Just go. Better luck next time. At least no one is crying. Good try. Yada yada. We are suited up and out the door and we notice the unthinkable--we have been blocked in. Seriously, you park in front of someone who is parked in 'special needs'? What if our special need had been a medical emergency instead of just parenting fatigue? Not that I'm bitter:)
Anyway, it was more of the same for the next hour, at which point we were all hungry and super tired. But, we did get to visit with some friends at the end of the service so there was some redemption. Also, I'm counting it a personal victory b/c I didn't go crazy and scream at anyone. Parenting keeps you humble, no?

Tuesday, December 1, 2009

Growing up, my family religiously hunted our Christmas tree on the day after Thanksgiving. We did not go without any member (and usually my grandma), dressed festively, and drove down the road from our cabin (where we had stayed for Thanksgiving). There was a small sign on white poster board alerting the public "Trees for Sale" and after you cut down your tree, you drove back up to the house, pointed to the area of the field the tree was found, and then payed a very fair price.
My family hit the field, spreading out different directions to find the "perfect" tree. The criteria for each of us was different. I wanted 'big'. My mom wanted one with 'holes' to put her big ornaments in the tree. My dad wanted a 'great shape'. And my brother could never remember where the one he picked was located, so his choices were out of the running. We would finally agree after each contestant had been argued and dad would lay down on the ground and cut down the chosen one with a hand saw. Then, we would pose around our tree and snap our family Christmas card picture. The ride home was filled with "I'm really glad we got that tree" "it's going to look great", "what a great tree". Very Clark Griswold.
In sharp contrast, this is how my family's tree selection went: On my way home from the doctor with Lilah today (why do I always seem to start sentences this way?), I pulled through Mayo Garden center, and had them tie a tree I had not even seen unfolded on the top of my van, while it was still running. Since they charged what it must cost to replant 100 trees, I figured it must be decent. And then, being the loving, patient mother that I am, and wanting them to really 'soak in' the festivities of Christmas....I decorated it by myself after the kids were asleep.:)

Saturday, November 28, 2009

So, I bought this stuff on Amazon called Germ Free 24. It's supposed to create a 'barrier' to germs that last through 10 handwashings. You spray it on and POOF...all your germ worries are solved. Although I do have a penchant for As Sold on TV stuff, I'm not normally one to hop on the gadget bandwagon. That is, I have a heathly bit of skepticism...until it comes to 'Germ Free'. Let me just tell you all....I was clicking 'checkout' before I had even finished reading the product description (because there couldn't possibly be any negative effects to some chemicals that coat your skin despite soap, right?). I was dreaming of anxiety-free trips to the mall and confident mornings in the church nursery...and spraying it on our hands like a wild woman. This is it, I thought. This is how we'll make it through the winter sickness free.
And then, 3 days after our protective bubble was implemented, Garrett came down with a cold, and then a stomach bug, and then croup. Bubble burst.
I'm learning a lot lately about 'control'--both wanting 'to control' and feeling like things are 'in control'. I don't feel like I'm a particularly controlling person (but don't ask my family:), but I still go through waves of it. Especially in the last year. It usually rears it's ugly head when I feel like I can't do it all--that I'm juggling too many plates....having a hard time regulating their speed and height....sure to drop one or all of my figurative plates at any moment. Then I get Crazy with cleaning or list making or germ prevention. Feeling desperate to control what I can.
Then, feeling frustrated to have to re-learn the same lesson over and over, I remember that it's not all up to me. God tugs my heart....reminds me to turn it over, to trust. What I'm learning is that all this 'control'--both what I think I can change and the things that are already 'in place' (family, home, jobs, etc)--is just perceived. Any of it could change in the blink of an we know too well. I feel like this is one of those things you hear people tell you your whole life, but never really 'get it' until it happens to you. Live in today. Don't take anything for granted. At least that's the stance I'm choosing to take instead of my natural inclination to live in fear of change.
Living in the moment, letting life happen, not trying to plan out the future...I'm one of the keys to my (relative) sanity. This Thanksgiving was worlds away from last years. We were able to travel, enjoy family, and give thanks for a year of miracles. As I bask in the glow of the calm, I do not take it for granted. And I know, and remind myself, God's love is the only constant...truly unchanging. His plan, however I perceive it, is perfect. And for that, I am most thankful.

Thursday, November 26, 2009

Oh so thankful! Happy Thanksgiving everyone.

Tuesday, November 17, 2009

I'm not exactly a 'dog-lover'. Actually, I would say "I hate dogs".....but that's so non-PC:). I have a mental list going of reasons I dislike the things (curiously, dogs love me, but that's another post), and this made #1,117:

I was running yesterday, enjoying a little Rhianna on my iPod (which, turns out, does not make me run any faster).....when I was sandwiched between a super-mean brown lab (is this a species?) and a passing car WITH A PIT-BULL IN THE PASSENGER SEAT!!! This might not have been that big of a deal, had I been paying attention to my surroundings, and/or seen either of the dogs or the car before THEY LUNGED AT EACH OTHER!!!! Jumping, barking, gnashing of teeth. Did I mention that I was directly in the middle? And hadn't seen it coming? And hate dogs? And thought they were going to eat me for Thanksgiving? Thankfully, Dog A was behind an invisible fence....but that did not save my cell phone (that I dropped), my pants (that I peed in), or the small children (who were playing next door) who went home with all kinds of new words.

Thursday, November 12, 2009

I ran across this on Veterans Day and thought it was worth sharing. Turns out flag folding is not just about making a neat little triangle.....who knew? Well, you all probably did--but, I didn't. And, I am somewhat of an expert.....seeing as how I served as a somewhat proud member of the Sharon School crossing guard, where we folded the flag daily (and a bird pooped in my perfectly coifed bangs on the walking trail, not that I'm bitter).
Back to the are the meanings of each fold:

The first fold of our flag is a symbol of life.

The second fold is a symbol of our belief in the eternal life.

The third fold is made in honor and remembrance of the veteran departing our ranks who gave a portion of life for the defense of our country to attain a peace throughout the world.

The fourth fold represents our weaker nature, for as American citizens trusting in God, it is to Him we turn in times of peace as well as in times of war for His divine guidance.

The fifth fold is a tribute to our country, for in the words of Stephen Decatur, “Our country, in dealing with other countries, may she always be right; but it is still our country, right or wrong.”

The sixth fold is for where our hearts lie. It is with our heart that we pledge allegiance to the flag of the United States of America, and to the republic for which it stands, one nation, under God, indivisible, with liberty and justice for all.

The seventh fold is a tribute to our Armed Forces, for it is through the Armed Forces that we protect our country and our flag against all her enemies, whether they be found within or without the boundaries of our republic.

The eighth fold is a tribute to the one who entered in to the valley of the shadow of death, that we might see the light of day, and to honor mother, for whom it flies on mother’s day.

The ninth fold is a tribute to womanhood; for it has been through their faith, love, loyalty and devotion that the character of the men and women who have made this country great have been molded.

The tenth fold is a tribute to father, for he, too, has given his sons and daughters for the defense of our country since they were first born.

The eleventh fold, in the eyes of a Hebrew citizen, represents the lower portion of the seal of King David and King Solomon, and glorifies, in their eyes, the God of Abraham, Isaac, and Jacob.

The twelfth fold, in the eyes of a Christian citizen, represents an emblem of eternity and glorifies, in their eyes, God the Father, the Son, and Holy Ghost.

When the flag is completely folded, the stars are uppermost, reminding us of our national motto, “In God we Trust.

Wednesday, November 11, 2009

Lilah made it though her sedated hearing test just fine and we were able to go home that afternoon. One of her PE ear tubes was clogged, so it was replaced before they started the 2 hour hearing part. The results were something I hadn't really thought about.....she has a mild loss in both hears, with a moderate high frequency loss. Basically, this means her results put her in the 'could go either way' category for amplification (hearing aids). I could live without 'another thing', but if she needs them it's no question. We'll know more in a few weeks.
Thankyou for covering her in prayers.

Sunday, November 8, 2009

The 'equipment' is piling up around here....standers, scooter boards, special seats, strollers, bath-chairs, braces (in addition to the more 'medical' stuff we already have O2, monitors, etc).
Lilah is definitely making progress with strength and sitting. Here is her new scooter board to try and encourage her to paddle with her arms or at least put weight on her arms to eventually get something/go somewhere. Not much forward progress, but at least Garrett is having fun with the demos.

she doesn't actually mind it, but she doesn't really give it a 100% either.:)
if her 2 favorite boys aren't's just not happening.

We are really good around here...not much blogging--just living. I feel like the tasks (especially appointments) have/are ramping up for the season of sickness that is upon us. I am so incredibly thankful that we have avoided major illness so far and am praying for continued protection for that little spongy heart and those weak lungs.

Speaking of heart....fantastic news from her cardiologist that both holes in L's heart continue to grow smaller and pose less of a threat to cardiac function. She actually said that the ASD (larger of the 2 holes, and the one we had planned on surgically closing, as a 'given') may not even need closure...ever! This is a totally unexpected gift of good news and if it weren't for all the other miracles surrounding Lilah's life, would make front page news around here. Her cardiomyopathy remains sobering, but we refuse to dwell on it.

She had a "swallow study" last week that confirmed she is still not safe to drink liquids. The combination of neurological delay and muscle weakness just don't allow her mouth/throat to recognize liquids and protect her airway. She continues to receive all nutrition via G-tube....something I do not anticipate to change. But, I would really love to see her enjoy a variety of food/drink as pleasure and social participation in meals. Right now she loves Cheetos, pizza crust, and puffs...but needs very close supervision.

She has a hearing test tomorrow (Tues), for which she has to be sedated for quite awhile. Please pray for this procedure, as sedation is always a bit more complicated for L than would be typical. We are not at all nervous that it will/will not turn out that she needs hearing aids....Paul and I have long ago adopted the game plan of moving forward with whatever she needs. She is not very vocal at all and we want to make sure she is receiving all the auditory input to which she is exposed.

Honestly, there are 'updates' on just about every specialist you can imagine, but I can only deal with some at a time:). Those will suffice for now.

I am constantly reminded of God's unwavering love for me, and my family, but especially Lilah. She is His first, He loves her perfectly, and not a hair falls from her head that He does not know. I am so thankful to be relieved of the burden of 'perfecting' her life or trying to 'fix' the broken. Don't get me wrong, there are days when the pressure feels strong, the work too much. But in my heart of hearts, I know the work has been done spiritually and her reward is in heaven. I rest knowing that Lilah will know perfection for eternity. The freedom of this knowledge is great....the ability to enjoy this remarkable girl.

Sunday, November 1, 2009

I'm learning the things that I'm most anticipating my child will love (i.e. trick-or-treating) are sometimes the things he could care less about (i.e. trick-or-treating). Seriously, G acted as if we had plans to 'tar and feather' him when I insisted that he wear the costume he's had for months on HALLOWEEN!!!! Call me crazy:). But, after knocking on all of 2 doors (and by 'knocking' I mean: me dragging him by the hand and saying "come on. this will be fun" in my most encouraging voice) and refusing to put his candy in his trick-or-treat bag (because....obviously, that was for his animals only), Garrett declared that "that was enough"....
and home we went. I'm counting it a 'W' though,'s all about the pictures. I mean memories. :) Check them out-->

Friday, October 30, 2009

We are 'marking' Halloween as a holiday around here if nothing else because we remember so clearly where we were as a family a year ago. His mercies abound and we are celebrating ways big and small! Here are a few pictures from today.

Monday, October 26, 2009

Yummy Fall Goodness

I am not usually one to think I have recipes worthy of sharing over the world-wide-web, but I get seriously into fall treats. If you haven't received any food gifts from me (if I'm your neighbor, bc I don't ship!)'s because I ate them. Sorry. Make your own.

  • 3 eggs, lightly beaten
  • 1 c. white sugar, 1c. brown
  • 1 cup canned pumpkin (or more)
  • 1 cup butter or margarine, melted
  • (I used 1/2 applesauce)
  • 1 tablespoon vanilla extract
  • 3 cups all-purpose flour
  • (1/2 whole wheat)
  • 1 teaspoon baking soda
  • 1/2 teaspoon baking powder
  • 1/2 teaspoon salt
  • 1 teaspoon ground cinnamon
  • 1/2 teaspoon ground nutmeg
  • 1 cup shredded zucchini
  • (squeeze out water)
  • 1 cup chopped walnuts
  • 1 c chopped fresh cranberries


slice golden delicious (lots) with skins on and place in iron skillet. top with pats of butter, honey, pancake syrup, cinnamon, and brown sugar. cook until you can't take it anymore (or it starts to look like applesauce). eat them here, eat them there, eat them everywhere. yum.
  1. In a mixing bowl, combine eggs and sugar. Add pumpkin, butter and vanilla. Combine dry ingredients; gradually add to pumpkin mixture and mix well. Stir in zucchini and nuts and cranberries. Pour into two greased and floured 9-in. x 5-in. x 3-in. loaf pans. Bake at 350 degrees F for 45-50 minutes or until breads test done. Cool in pans 10 minutes. Remove to a wire rack

Wednesday, October 21, 2009

L has a new bath chair!!! It's a 'normal' (i.e. non-handicapped) infant seat that I ordered online. Until last week, I'd been bathing her in the kichen sink, in an newborn tub, where both her head and feet hung over. Something about babies 'bathing' together warms a momma's heart.... and it's something I never thought I'd see. Which, speaking of something I never thought I'd see, is happening around here a lot these days--so often that one of Garrett's (more pleasant) phrases-of-choice is...... "I caaannn't believe it!".
Here are some things I'm in shock about lately:

1. L sat for 40 seconds, unsupported, today. She is sitting:)
2. We generate more trash than some countries, I am certain.
3. Why did no one warn me that 3 is so much more....uhm, challenging?!...than 2?
4. When will I learn there is no such thing as finishing my to-do-list?
5. L is off oxygen. (I will be praising this miracle until she's 30!)
6. Why is football season sooo long?
7. How is it that it takes me at least 2 hours to get out the door some days?
8. this is random, but...Why would Cover Girl make Ellen DeGeneres their cover model? Not
that their is anything wrong with her:), but she's not really my beauty inspiration.
9. The healing powers of Zicam (the nose spray). I have avoided many colds by faithfully using this when I feel one coming. The only small catch is: my doctor says there have been some incidents of olfactory loss...but I'm willing to take the chance!

As always, thanks for keeping up with our lives and praying faithfully for our sweet girl. It is such a privilege to be parents to any children, but we feel blessed in incredible, extraordinary ways. I can't believe how God has lead us out of the darkness of the last year into a joyful celebration of His love and miracles--but, I am more certain of it each day.

Tuesday, October 20, 2009

I've never been a runner. I was the girl who quit soccer in my youth because it was too much running. Later I decided that basically applied to all sports, and that's when I decided sports weren't for me. I did take up an enjoyment of gym-going in gradschool, looking for a way to replace the parties with a more suitable plan to meet people. I got hooked when I graduated and realized exercise was my only hope of survival for actually making it 9-5....and I dropped a few pounds, too. SOLD! When we had kids, my normal gym-going routine wasnt and I needed another plan. We bought an elliptical and I love it. But, child #2 comes and now I need to exercise in PEACE! So, running (darn it to pieces!) fit the order (fast, cheep, high calorie burner, etc.).
So I'm been running very slowly for a very few months and my husband suckers me in a *race*. The rules were 4K run, 30K bike, 4K run (i run, he bikes) and P insisted he was not in-it-to-win-it and that there would be soooo many less qualified people than you. And, a day to spend together in the outdoors sounds great, right?
Race day was freezing but I was prepared with my Mossimo stretch pants from Target and my zip up 'performance hoodie' also from the big T. I chose all black because, clearly, it would make me look fierce. I'm a bit nervous on the way, but calm myself by organizing my iPod, reapplying lipgloss, and folding my 2 papertowels that I always run with (to pat my brow).
We get there, late of course, and we see you have to park without eyesight of check-in. So, P goes ahead on his bike and I carry all our gear (this is amateur flag 1, everyone else had special 'gear bags'). I start trudging up this huge hill will all this 'stuff'', and it's so steep, and I'm carrying so much, that Paul has to come back for the car to pick me up. We arrive at the top of what I'll just call 'the mountain' and see people dressed like this, running sprints to WARM UP, and patting each other on the back with things like, "hey man, that was an incredible time at last weeks mid-week-double-marathon-in-the-artic-circle".
I contemplated making a run for the county line just so I didn't have to humiliate myself in this manner, but I didn't have time b/c I was too busy pinning together my running costume to make sure it didn't fall off and attaching my iPod perfectly....ooh and stretching. Time to start and they say "no iPods, it's against race-day regulation!"--and, also, the course is the 'mountain' I walked up to check-in. I almost starting screaming "boo! Hiss!" until I realized I was the only one hearing the news for the first time.
I was hoping for a gun at the start line, but my disappointment over that faded as I saw every other racer fly past me at lightning speed. By the time we reached the first "bend" I was racing all alone....but I kept going....with a serious "loser" chant playing between my ears. I finished 3rd to last! Paul did great. I am wearing my t-shirt with pride....telling everyone who will listen (clearly).....and telling myself to try new things.....because humility is good.

**This just in--the final results were posted and Paul and I finished 4th in our division!!!!
subscript: only 4 in our division:)

Monday, October 19, 2009

Love this girl...we could eat her up! And, she knows it and plays us like a fiddle--which pleases me to peaches because it seems so normal.:) Here are her latest poses....

Lilah in her 'stander' (to help her learn to bear weight on her legs) and her cousin Owen (who has apparently seen more exciting toys in his life) She has special leg braces and shoes that she wears to give her legs and ankles support and she 'wears out' in about 10 minutes right now.

L and cousin Maggie enjoying some 'encouraged' snuggles

happy halloween! L is going to be too big for that shirt by halloween! she has gained 2 lbs in 2 months!!!
look at her sitting!!!!!! she is supported here, but she sat unsupported for 40 seconds today!!!!! I think we are a long way from 'safe sitting' (i.e. won't fall over and hurt herself), but on the right path for sure. Watching her struggle so much to reach, get-to, and manipulate toys makes me sad for her that it's so hard, but it certainly reminds me not to take anything for granted. Seeing her breathing hard after turning pages of a book or a successful roll-over keeps me from complaining about much (or at least less). Sweet , precious us so much encouragement....always thought it would be me encouraging her!

Wednesday, October 14, 2009

random pictures here...but I don't want to forget them....
G has worn out his whoopie cushion (courtesy of my father) this summer...BIG fun. I always wondered why little boys in junior high were so fascinated with bodily noises and now I know the reason: when those boys were 3 and precious, their mammas laughed everytime. I can't help myself....he's still baby, but all boy at the same time. look at that face:)

posing on the 'stage' that is his sister's ottoman in "this is a cool shirt, dude" (cool shirt being vintage momma, dude also referring to momma) and 'webbing' like Spiderman.

these are leftover beach pictures of my sweet boys.

Equal coverage for sister coming soon!

Friday, October 9, 2009

Me and my two sidekicks have just returned from a week-long adventure to Indiana to visit my parents. Great fun was had by all (except P, who pretended he was pained by our absence). Here are some highlights:

1. On the way up, we stop at McDonalds for sustenance (if you can actually call it that), and most importantly, for momma to potty in a place that is NOT as gas station or the parking lot or her car (don't ask). My oh-so-precious-newly-three-and-owning-it sees the display of the kids' meal toy and declares/demands that he want the car with the blue stripe. I think "here we go" and begin explaining the dynamics of the not-happy-meal prize to G (who is, clearly, chosing not to hear me). To make a very long drama shorter, he recieves something other than the 'desired' (b/c of course, McDs has moved on) and throws a huge fit. I threaten his life and promise this is the last time I will leave the house without my spanking spoon and and emergency Excedrin...and then I haul him outside to explain my position further. When.....the McDs worker follows us out with not only 'the' car, but 5 others. My attempts to teach thankfulness and gratitude are destroyed. I will blame this good-intentioned worker for all my future parenting flubs.:)

2. We visited my ailing grandparents, where the kids showed off their current skills (G: pottying, roughing up L, and 'webbing' like spiderman; L: patting, clapping, peek-a-boo) and my grandparents fretted about like we were royalty. As one is in a wheelchair and one toppling over her cane regularly, I was saddened by their physical condition (won't even go into mental:), but their demands from the walmart deli case (5 slices colby-jack, 2 slices old fashioned loaf, 1/4lb ham) kept me on task. I have the feeling my weekly Kroger bill beats their yearly grocery tally. One of the benefits of having a sick child is a total perspective change....sick grandparents (that are so far away) would have broken my heart years ago and now I just think , "Ah, they are old. They had their time".:)

3. The West Side Nut Club Fall Festival. It's a legend. An experience....and G's first fair-type go around. He loved it! Swings...Slides...Old Fashioned Cars....the kiddie rides were much more prolific and favored than I annticipated. This is why I dropped a supbstantial amount of cash buying little bits of tickets at a time instead of the $15 bracelet. Lesson learned. You my have seen me there...I was the neurotic mom with antibacterial wipes in both back pockets:). By the time we were done riding the rides, the food lines were so long that we missed out on most of the 'delicacies', including chocolate covered bacon and fried twinkies.

I know you all are jealous of the exciting life that it ours:). But, honestly it does seem pretty normal, if not exciting, lately---and that is exciting. Things like medicines, therapies, and equipment seem normal....G & L are having a few sibbling squabbles(which cracks me up b/c I never thought I'd see it)....we are able to engage in life (albeit with a bit more difficulty). I am beginning to feel a bit of balance. She's easier to take 'out' and loves going anywhere. I'm going to apply myself to learning how to put some video on here so you all can take a glimpse of Lilah in action soon--her grateful spirit and gentle heart are contagious!

Saturday, October 3, 2009

So, I went shopping today and I'm feeling like I might as well have stayed in a dark room, smoking a cigarette and watching Married with Children (or the emotional equivalent; i.e., something totally depressing). Why is it that just when I decide I'm ready to part with a little cash, and my faded yoga pants and stretched out sweaters no longer pass as 'effortless casual' (think jJill).....there is nothing I want to buy???? Seriously, who is the deranged wo/man who comes up with the 'styles'. I am thinking someone like Tim Gunn from Project Runway.....who clearly does not understand, nor appreciate the (post-2-baby) female figure??? Sweater dresses were not my friend in the 80s and now they are my enemy--right behind leggings. And skinny jeans.
This is a similar vibe to my 'swimsuit dilemma' post, I realize--but it's a reoccurring theme for me in this phase of my life. Before I had kids, I was all 'Banana Republic' or 'Ann Taylor'...clothes that looked great and could be worn 5 times before a trip to the drycleaners. Clearly, dry-clean only clothes are not my favorite these days. There have got to be more options out there for people who are not ready for Chicos but are far past Express. I am a huge fan of The Loft...but it's like reading 5 books by the same author in a row...sometimes you get bored.
Also, where does a girl find some jeans that are a happy medium between Rachel Zoe and Michelle Duggar (the mom from 18 Kids and Counting)? I think I'm going to sign myself up for What Not to Wear....right after I start going to I-Watch-Too-Much-TV-Anonymous.

Wednesday, September 30, 2009

Garrett has started "school" again for the fall....bless his little teachers' hearts:). I thought we were in for a better year (as in, less traumatic 'drop-offs'), because he got off to a very good start. The bloom has, however, fallen off the rose and the peel-garrett's-white-knuckles-from-my-neck-goodbyes have started again. They tell me the drama is short-lived and he jumps right into "fine motor". (this, btw, cracks me up....the thought of my 3-year-old-boy 'doing' fine motor...obviously i'm doing something wrong at home:).
So, here are some delayed pictures of the first day. Backpacks, sacks, satchels, etc are huge around here. Life is all about packing and unpacking his 'stuff' that part was fun.

After I dropped him off, I headed to Target (which pulls my minivan towards it with a mighty power) to pick up a work-out mini skirt-- because clearly, I was the only preschool mom so behind on the trends. I couldn't pull the trigger, though...and decided I could just use my swim-mini to look cool for the next drop off (to pretend, like everyone else, that I'm going to work out instead of go to Target in peace and perhaps take a 10 minute shower). I digress....

Here is Garrett after a grueling 'first day' of school.:) It's hard to be 3.

Tuesday, September 29, 2009

look at this a million bucks, right? i was in the shower today and thought, it's been a long time since i took a shower expecting someone to burst in telling me lilah is having a seizure. and then i realized....i've quit worrying what it would do to garrett if i had to call an ambulance in the middle of the day...i no longer count her respiratory rate regularly...i've stopped hearing bells, whistles, beeps, and hums of machines in my sleep...i have not taken her to the doctor in almost 6 weeks...and i've quit expecting her to die. it seems crazy now, when i look at her--so much stronger and very much a part of our family's future.
lilah's doing great, and getting more of a personality everyday--loves to laugh, be read to, and mostly be held:)....does not want either parent out of her sight...playing peek-a-boo....blowing kisses. she's rolling over more and getting closer to sitting up. she still doesn't make many sounds, but is definitely starting to show some interest in signs (sign language).
her development is nowhere near typical, but it is soo far beyond what we were told to expect.
we are soo beyond thankful!:)