look... a mama picture sighting:)

her new "stander" to help her with 'weight-bearing'. she likes it and we are still on the learning curve associated with new equipment

admiring a b-day present

sweet snuggles from brother...he loves this girl!

goggles from a "poo.poo present". we recently potty trained...not sure i will ever have the energy to post all of the hilarious stories/ conversations surrounding this event.

Today's the day...the big 1st birthday! It was big, and emotional, for me when Garrett turned one, but nothing like this. Maybe because I had never had true doubts that he would live to see it (unless you count that one, sleep-deprived phone call to the on-call nurse when I asked "do you think he'll live through the night?"... in regard to his first stuffy nose. While I'm sure that call made for some great water-cooler-laughs, I now have a little thing called perspective:). I feel like the standard 'it's my child's birthday' comment is: "I can't believe she is 1!"-- but the honest truth is this year has seemed like 5, or 10, or a life-time, actually. I guess because everything changed. Good, bad, better, worse, best, worst....Lilah's first has been a year full of such a range of emotion. I can truly say that we have been through the fire (at least the first wave) and been brought to the other side. Her birthday is a celebration of her life, our mutual survival, and all the lessons we've learned along the way.

We have been given a great hope for her life. Not just an assurance that she will live in a perfected body for eternity, or hope that she may live a good long while on this earth, but hope that her life will matter....that she will thrive, enjoying people, simple pleasures, some of the beauty this world has to offer. We are beginning to recognize her place in our family....planning for her to be a genuine part of our lives in the years to come--wanting to do everything that we can to make her life the best it can be. I am realizing that many of the 'walls' I had around my heart in her early days are dropping....I think I was afraid to "emotionally invest" in her....just 'taking care' of her instead of discovering her....wanting to dampen a growing love for her....fearful that if I felt anywhere near what I felt for my other child, the "what if"s and

"when"s would kill me. But, sweet Lilah has dug her way so deep in our hearts now that the hope for our time with her far outweighs all the other stuff.

And there is a lot of stuff....but God has continually provided for Lilah and our family's every need....loving us in a way that defines "sustaining". Paul and I have, many times, felt Him carry us....making it possible to make it through the days, allowing us to feel only what we could handle of such an overwhelming situation--doling out the realities moment by moment and revealing His mercies with the dawn of each day. He has given us an assurance that no part of her, or this, is an accident. The Lord has drawn us to a point of utter dependence upon Him....resting in the peace He gives when you trust. And I have to say, it feels really good...

This sweet birthday girl is a miracle! Lilah continues to far surpass the expectations for her health and development. I don't even like to talk about our 'expectations' for her, because, looking back, I feel like I sold her short, not believing what was possible. But, she is an absolute joy...delighting in the small things and complaining very little (especially given her list of possibilities). Lilah has the most gentle, sweet, thankful spirit I have ever known. She loves any attention, kisses, her Daddy, Mommy, and brother (in that order), baths, powder under her neck, baby dolls, singing to her, and biting with her new teeth. She clearly has her own personality, which becomes a bit more demanding each day:). Lilah has taught us more than we can even grasp....somehow lifting the veil, revealing what really matters. We are changed by her, thankful for her, and strangely, wouldn't alter one moment of the last year. I've heard it said that, The measure of one's life is how they've loved and encouraged others. If this is true, Lilah Burch could write the book... at the tender age of one.

The Lord is good and He continues to bless us beyond what we hope or imagine.

The birthday girl had a cardiology appointment today. She has oodles of appointments, but this is the appointment. The one that really matters. In the early weeks and months after she got sick we has so many 'bad news' appointments--appointments where we would hear that she had developed a new problem, needed more medicine, or had fluid around her heart. Often, we'd be 'blind-sided'....feeling like she was doing well and hearing otherwise. Even though Lilah has many concerning 'health issues', her heart is the biggest and the scariest for us.

Her amazing cardiologist reiterated Lilah's "miracle girl" status today....telling us her heart was doing so well that she could discontinue 3 of her medications!!! Actually, Dr. Bremer felt like the only cardiac drug she needed right now was a blood pressure medication. I am speechless!! The problems with her heart are not small ones, and the fact that it is functioning well, allowing her to grow, learn, play-- is not by accident. It is the power of the prayers of so many, and the blessing of a God that has called her for His purpose.

We are overjoyed by such sweet news--the perfect birthday present!

Not that you care....but if you do....here are some things that are 'changing my life' these days (figuratively, of course):

1. Lemon Pinesol. I have this friend who was once caught vacuuming her draperies at 3am...above her husband's head. She's 'that kind' of clean. She taught me this trick where you fill your sinks with warm soapy water and pinesol. It is the perfect antidote to my 'let it go' summer philosophy...makes your house seem very clean. As Garrett says, "just try it."

2. Lipgloss from Bath & Bodyworks....says something on the label about apothecary and peppermint...I'm too lazy to get up and find out...but I'm sure a friendly salesperson will direct you right too it. Makes you feel like you just brushed your teeth. I think I've developed somewhat of a 'nervous tick' with it because the other day I was using this perfect lipgloss when the doctor walked in to tell me something and I kept squeezing...while listening....until a dollop of it dropped on my pants. Great impression.

3. Greek Yogurt it's like that episode of Seinfeld where they find out the 'low-fat' frozen yogurt was not. Now I can't remember if that was really an episode or real life. Anyway, it's that good and I'm going to keep eating it until I can't zip my pants.

4. Dustbuster. Despite numerous suggestions from my MIL that I needed one, I held out. Now I'm going to start giving them as baby shower gifts--the versatility is amazing. I haven't gotten out my vacuum in a month:). It makes me laugh every time I use it b/c I think of another friend who used to dustbuster her husband's pillow (to remove a-wall head hairs, of course) after he left for work. That kind of clean is beyond me....way, way beyond. But, I realized I had gone too far when I dustbustered G's shirt the other day (after dinner, and without warning) and both he and L bursted into tears.

5. My minivan. No, I am not the Toyota Sienna spokeswoman (but I wish they'd hire me!), but it just gets better and better. I once heard of a woman who sent her child to school with a 'lunch' she packed totally from snacks she found in her minivan. I believe it! If a crisis arises, I am ready...that thing is like a traveling fort, snack bar, entertainment station, and dressing room (just to name a few). It makes me feel powerful.:)

I know...I'm incredibly deep and contemplative. But, prepare yourselves, L's birthday is next week and I'm feeling some serious emotion welling up! Thinking about having "Yeah for Ya" buttons and "We survived" t-shirts printed. We asked her, and she doesn't want a party, so don't feel like you weren't invited.:)

Today in the E.R. (it's just wrong that I start stories like that now).....I heard this conversation:

woman in tight, white, improperly-undergarmeted t-shirt, huffing like she had just climbed Everest, and holding the remnants of her extinguished cigarette (which I assume she was saving for later): "we need help" as you are saying this in your head, you should use the countriest accent you can muster and pretend you are missing a few teeth, just for authenticity.

oh-so-helpful-compassionate-check-in woman* (*who had watched me struggle in the door with crying baby, diaper bag, purse, and a pile of x-rays and not offered to help. said woman now on my hit list) "what's the matter" say this in disgusted-I-want-to-go-home tone.

woman: "them kids was playin the damn sparklers in the yard and the dog, trying to git the sparklers, got hold of Timmy's hand and gnawed it all up."

sure enough, i look over and see timmy (who is probably 4) holding up his finger, which is dripping blood on the waiting room floor. i'm pretty sure i could see the bone and IT WAS NOT EVEN WRAPPED UP!!! Check-in woman did not skip a beat before she said "can I make a copy of your insurance card?".

If you are worried about our visit, it was in relation to the children-only stomach bug lingering over here. Sweet Lilah was feverish and super unhappy, and none of her doctors pull any punches in her treatment. I am considering it a hugely successful day because we didn't have to arrive via ambulance (2 prior times is plenty for me, thanks), we got to go home, and she is sleeping peacefully now!!!

Happy 4th of July!!! A rampant stomach bug passing through the extended Burch children threatened to dampen our fun, but it passed and we were able to enjoy all kinds of festivities. Sweet baby Lilah was the last (hopefully) to receive the virus and stayed home with her Granny. Big festivities always make me a little weepy lately...looking at other baby girls her age crawling in the grass and sneaking food from their brother's plate, seeing little ones toddling away from the group, watching big girls dance in the talent show...it always hits me unexpectedly. Wanting her life to be filled with all things normal, easy, and fun. A deep sadness in knowing that there are so many things she will miss and experiences that we will have where she can't be included.

We had a great 4th of July! Family, food, festivities....all the makings of fun:). This year I was especially thankful for a country where my children receive the very best in medical care....where we are at least making marked strides toward equality....where we can worship God without fear....where I can wear whatever I choose...where my children are fed and (relatively) safe. I am grateful for all who have paid the price for these freedoms.

Tubes are 'in', adenoids are 'out'. She did great with the sedation and coming off the ventilator!! We spent the night in the ICU, which is never fun, but it was quick this time. I hate being in the hospital...it feels like prison to me and I don't like the reminder of how sick she really is. I answer the same questions about her 'complications' and list of meds a million times and every time the reality of it hits me like a ton of bricks. But, as one 'professional' told me, "wow, she looks sooo much better than she sounds on paper!" uhh, thanks...I think.

Thanks for all your prayers, offers of food, and sweet messages. I'm looking forward to some serious celebration of freedom...hope you all are, too. Happy 4th of July!!!