Tuesday, January 31, 2012

I feel like with 3 kids in the house, we almost always have some 'night time issue'--if I make it through the night to a respectable morning time without getting up at least once, I'm always shocked.  One night this week our night time surprise was a midnight visitor.  I rolled over in the night and noticed Garrett sleeping beside Paul...he learned a long time ago that he would get a much more welcome invitation from his father's side than mine:).

The next morning, Paul and I woke up to the sound of a baby crying, but no Garrett in our bed (for the record, he has been known to wake Ada in the am, but this was not the case that day).  We were practically 'high-fiving' each other as we made the bed...celebrating that he had, on his own, without tears or threats from either side, gone back to his own bed.  Parenting success.  Yeah for us.  We are awesome.

At breakfast, we celebrated the little king....congratulating him on his mature decision to return to his own bed, when he says:
"Oh.  I did that because I wet your bed."


Thursday, January 26, 2012

What She Has, Part III

**just to clarify--none of this is 'new news', we found out Lilah had 1P36 deletion syndrome over three years ago, but chose not to share it at the time.

The news was the worst we had received so far....which is saying a lot, because in the course of the last 4 months, we had gotten some pretty bad news...time and time again.  I remember telling a friend that I felt like the sky was falling in, bit by bit--and the news that Lilah had 1P36 deletion syndrome was the final bit.  I'm sure everyone is different, but for us, this felt like the worst news we could receive.
Here is why it was far worse for us than any of the other diagnoses we had already been given:
-it was the reason for alllllll the other 'things'....the seizures, the structural anomalies, the low tone, the poor weight gain, the heart disease....they were not mutually exclusive anymore...and their sum seemed greater than the individual parts....and even though we knew they were not going to get better....now we knew.

-this diagnosis came with a slew of new things to worry about that, up until that day, we had not even considered (certain mental retardation, hearing and vision loss, non-verbal communication, etc)--and we already felt very maxed out in the worry department.

--the diagnosis felt like a death sentence....if not literal death, then certainly a death of hope.  Up until that day, we still held the slightest hope that she might be 'normal' (very sick, but 'normal'). now, we knew she wouldn't be 'normal'.

We didn't really keep her diagnosis a 'secret', but we definitely did not share it with anyone but close friends and family.  I knew we wouldn't keep it private forever, and it was nothing we were ashamed of, we I just needed awhile to process it.  I did not want 'it' to be what defined Lilah....before she had a chance to prove all the statistics wrong.  I did not want people I had never even met, googling pictures of 1P36 babies and comparing their pictures to my baby.

Most of that seems silly now and I wanted to share because God has written this child a beautiful story....and this is a part of that story.  I know that 'what she has' is not 'who she is'....she is the daughter of the King, perfect and pleasing in His sight.  I hope Lilah's life is and will continue to be an encouragement to others.

Monday, January 23, 2012

What She Has, Part II

And so...I studied the pictures of the kiddos with the syndrome I'd found on the internet, begging the Lord that this was not "it"and quietly knowing it was.

We went to the pediatrician the next morning and dealt with the constant health housekeeping of those days--adjustments of medicines and oxygen, coordinating services and physicians--and I was a nervous wreck the whole time, trying to get up the nerve to ask:

"So, about that genetic test you had run...have you heard?"

Our doctor said he was sure it was fine, but would call Children's and see if the results were in yet.

He came back in the room, nearly weeping, and said:

"Mr and Mrs Burch, I'm so so sorry.  Lilah has 1P36 deletion syndrome."

Paul, at that point was clueless about the implications of that diagnosis and I was, between sobs, sputtering an obscene amount of knowledge about this condition....rambling on about all the symptoms I had read about the night before.

Heart disease, heart deformities, seizures, hypotonia, loss of vision, scoliosis, loss of hearing, lung disease, significant gross motor impairments, fine motor impairments, inability to communicate, and...severe cognitive impairments.

By God's grace we were able to reassure our sweet friend and doctor that we weren't going to drive off the Henley Street Bridge.

Part III later....

Sunday, January 22, 2012

What She Has

The short backstory is:  when Lilah was admitted to the ICU (the first time) and her cardiologist (who we had never met) met us up there (on a Saturday) to tell us that she not only had an ASD (hole), but also a VSD (another hole), and LVNC (something wrong with the muscle)....I knew right then and there that she had a syndrome.  Because of my background in speech therapy, I knew that a child doesn't present with more than one structural anomaly by "chance" (usually). I think I blacked out at that point, because I only remember tiny bits of the next few days.

Anyway, a couple of months went by and we never pursued a 'diagnosis' because we were, literally, busy trying to keep her alive.  But, the Lord had provided a pediatrician for her who also 'happened' to be a genetic specialist and he knew exactly what to look for--so, he had specialized labs run for a specific syndrome during one of Lilah's hospital stints.  He did not tell us what the syndrome was he was looking for, only that the labs had been sent.

I am nothing if not practical and direct, which I say because the next part of the story is highly unlike me.  I am not prone to imaginative fears, or intuition, or any kind of 6th sense.  I do not Google unknown quantities-- 'number to pizza place', yes --'causes of a cough', no.  But, the night before a scheduled doctor visit (at this point we went 2x/week), I was laying in bed unable to sleep, and thought I'd surf the web. :) I typed what I thought were her biggest 3 symptoms into the search bar and the first thing that resulted was the name of some syndrome I'd never heard of--and a picture of a child that looked an awfully lot like Lilah.

You'll have to come back for Part II, because I just heard the princess chuck her glowworm out of her crib--which, in Lilah-speak, means "mommy, get in here now!!".  Duty (& privilege) call.  More soon....


If you are looking for the perfect gift for someone you love, or from someone you love....I have it!  I got these for Christmas and, I'm not kidding, I think they are the best gift I've ever gotten (except my engagement ring!).  They are giant, professional, wooden photos of my babes and they are gorgeous in person.  Seriously, works of art! Look how pretty:

Check them out here.

Saturday, January 21, 2012


My favorite moments as a mom are watching my children together.  I have no idea why, but it's just the sweetest thing ever.  Sometimes a lot of times, it makes me sad to watch Lilah with her siblings, because it's so obvious that she's in her little world--but most of the time, I love peaking around the corner to capture glimpses like this:

These sweet sisters love each other and one another's company.  They are always right on top of each other, sometimes to the point of annoyance for one or the other--which especially cracks me up.:)

Someone stealing pacis or pulling hair, ignites huge crocodile tears from the other, but they make up with giant, slobbery kisses:).

Wednesday, January 18, 2012

 This one is cute.
 And she knows it!

Tuesday, January 17, 2012

Happy MLK

I think MLK would be proud, because somewhere in the South, a little boy not only believes that the races are equal, but that black is superior to white.  America, we've come along way.

The boy is, of course, mine and, at 5 years old, he says his biggest dream is to be African American.  This cracks me up every time.  Garrett is not at all joking, and after a month of his father and I explaining how God makes skin in a rainbow of colors (and with the exception of Michael Jackson, you pretty much are what you are), he's just now starting to realize his dream will never come true.  Sigh.

On a side note, the fact that it has taken 4 weeks of almost daily conversation to explain something like this is overwhelming to me as a parent.

G has said so many hillarious things on the subject that I don't even know where to start.  It pretty much goes without saying that this whole thing stems from an obsession with basketball, because everything does.  I've told you all that bball is life around here right now, and I'm not kidding.  Someone asked him over to play the other day and Garrett looked them square in the eye and said, "I'm sorry, but you know how busy I am with basketball."  I bet you are not surprised to know that my basketball sports knowledge would not fill up a post-it note, but in the few ESPN clips and Youtube videos I've watched with my little fan, it's not hard to imagine how he would equate dark skin with skill.

Garrett's favorite player

That's the beauty of youth....he calls things like he sees them...free of predjudice or any preconcieved ideas....free of fear of offense or political correctness.  He can say anything he wants (within reason), and the boy says he wants to be black.  "Without stamps." (fyi, this is 5 year old speak for 'tattoos')

Here are a few other doozies of the last month,

"When I grow up, can I be African American?"

"I don't want us to adopt a brother, because he'd be african american and I wouldn't."

"Mommy, did you used to be African American?"

"I was hoping and thinking that when I got to slap the players hands before the game, I'd turn black."

"Daddy, will you draw me as an african american?"

"How about I go to Africa and get my skin painted?"  

Lets out the biggest sigh I've ever heard and says,  "I guess my dream is never going to come true."

Love that boy!! He's pure and innocent (except for all the times he's sinful and disobedient:).  I'm really, really thankful to raise children in this day and age instead of one before and hopeful that their children will never know a day of discrimination or inequality.

Sunday, January 15, 2012

Look what I came across today...a picture of Ya, exactly 3 years ago today.  She was fresh out of surgery for her G-tube placement and this was the first "real" smile that Paul and I felt like we had seen from Lilah (and, of course, it was for her daddy!).
One of the things that never ceases to make an impression on me, is the simultaneous 'good' and 'bad' (happy and sad, blessing and burden, etc) along this road--and this picture is no different.  It's heartbreaking seeing her so skinny (she was 6 months) and remembering such a hard time, but it's also a great reminder of the darkness from which the Lord has delivered us.

Thursday, January 12, 2012

Are these the sweetest hands you've ever seen, or what?  Tiny, little, rounded finger hands that are slow and delicate....I could seriously sit and watch her hands in action.  Lilah's hands still have baby dimples and, because she doesn't use them as much as a typical kid, they are baby soft and smooth.
She loves to wash her hands--which is about the way it works, because it is the hardest thing to do with her.  Her balance is too poor to sit on the counter and lean over and she's not tall enough to reach the sink from her wheelchair (yet).  So, I brace one foot on a step stool, have her straddle my leg, brace her ribcage with my elbows, and squeeze her little hands open with my thumbs....and turn the water on with my teeth (kidding).  And the other 50 times a day she get her hands cleaned with a washcloth in her chair.:)
We are cherishing this sweet miracle girl more than ever lately...what a gift she is!

Sunday, January 8, 2012

I'm not sure I'll ever get used to it...the feeling that wherever we go people are looking at us.  I know, I sound incredibly "junior high", but come with me sometime and you'll see.  When we take Lilah anywhere in her wheelchair, the sea of people part and everyone does a double take...trying to figure out what's up with this sweet little girl in a wheelchair.  I can almost see the thoughts in their head, "oh. is she? well, maybe? i don't know. poor little thing."  Because while she doesn't look obviously disabled, she is starting to look less and less 'normal', if only because she doesn't engage with those around her.

I'm pretty sure it's not all in our minds, because we aren't sensitive about Lilah or her wheelchair.  I know people mean well, that their stares are curious and genuine, not at all judgmental...but it still makes us feel, well, watched.  And, somedays, I just want to fade in the background...not having strangers study my family's every move.

I am guilty of it too.  Months ago, when I was leaving the mall, I saw a young man in a chair and he was leaving alone.  I watched him head toward his truck and was so darn curious about how that was going to work that I couldn't quit staring.  I watched, like a stalker, eyeing this man's every move.  And, then I sat there in my car and wept, because, while he managed to get in his truck,  attach his chair to a lift, and swing it into the truck bed, it wasn't an easy deal...he'd had to work so hard to just get 'in his vehicle'.

Anyway, my point is, that's why people stare...they are curious.  And, it's not bad....I think it must be an encouragement to see such a little thing, usually with a smile on her face, trying to push herself around. (fyi, if you are a starer, please smile at my child).   And surely, they are a bit more thankful for so many things that they take for granted.  So, as with many other things along this journey, I'm just going to have to grow thicker skin, and not leave my house without my lipstick.:)

Someone's Famous

A wise photographer spotted the cutest boy ever, in the front row of the TN/FL basketball game this weekend.  This picture was in their online sports pages and taken during the national anthem.  

I'm pretty sure there is not a bigger fan....Garrett is obsessed!! He wears that exact outfit every day (i'm not kidding--the only break in almost 2 months has been christmas eve service and it was a battle).  He eats, lives, breaths basketball.  Everything he does revolves around playing, watching, talking about, or suiting up for the game.

Monday, January 2, 2012

We have been keeping Lilah's "walker" (which is really a standing wheelchair) at school.  Unfortunately it's super heavy and awkward to get in the car and, although it breaks down into smaller pieces, that wasn't very realistic for everyday.  She can't stay in it as long as her wheelchair and she really needs both at school, so we just transport her wheelchair everyday.

 We brought it home for Christmas break and have been so glad to see Lilah's progress.  I sure wouldn't say she's 'walking', but she likes the positioning in this better than her wheelchair and she's more motivated and faster to move in it.  Most importantly she's happier for a little longer in this than her chair.

Lilah pushes herself around with the wheels, just like a wheelchair, but it positions her upright, so that she can theoretically bear weight on her legs (which she does very little).  The challenge has been finding a good spot to use it.  It has a very big 'footprint', so even though she is little, she bangs around the house in it, getting frustrated quickly with doorways and cabinets--even though our house is very handicap friendly.  

Wishing we lived closer to Papa, so that we could take her to his school gym this winter.  Thankfully, she gets to have some wide-open space at school!

New Years Resolutions

I always do these, but this year I'm feeling rather un-inspired.  I'd like to lose my baby weight but that feels super cliche, so I'm not even going to make it a resolution.  Surely, it'll be gone by 2013, right?? :) I looked back on my last years resolutions and give myself a B+, if only because I at least touched upon working on those resolutions.
In fact, maybe I'll just re-resolve those things, with a few tweaks.

1.  this is the year for +more+ organics.  i'm going to memorize the list of "dirty dozen" items and at least always buy those and dairy (is that on there?), which I already do, in organic.

2. try to start getting in some early morning workouts--this makes to tired to even type, so that's all I have to say about that.

That's it.  Hope you are feeling more motivated than I am in 2012:).  Happy New Year!!!

Sunday, January 1, 2012

A Year in Review

I'm kind of kidding, because I can barely remember what happened yesterday, much less all year.  But, I guess that's part of the reason I keep this blog:).  I looked back over the last year and a lot of stuff has happened--deep, I know.  For the first time in as long as I can remember, I don't find myself saying "it's flown by"....I have no idea why, but it seems like it's been a long year--not bad, at all, just long.

Here are some highlights....
1.  ADA!! by far the biggest highlight:) Can't believe I was pregnant with her last year and we didn't even know she was a 'she'.  Love her little heart so much and cannot imagine our family before her.  She is full of personality and it's so fun to think about who she'll be this time next year.

2.  Lilah learned to sit up on her own.  This was last March and it has really increased her independence--it's so hard for me to imagine before she could do this.  I get discouraged all the time about the 'tiny 2 steps forward, one-step back' deal with her development...but she really has changed so much in the last year.  She's much bigger and generally more healthy (from a virus standpoint).  Lilah is so much more mobile (in various ways) than she was a year ago.

3.  Garrett gave up his paci (ok, we took it away).  This is hilarious to me.....can't believe he was still using it a year ago.  He is such a big boy (but still so little) that it's hard to imagine--pretty sure basketball players (which is what he thinks he is) don't use pacis!

4.  Lilah started school.  This has been the biggest blessing for me.  I adore her teacher and the aides....they are such a great mix of loving and challenging.  She loves them too, looks forward to going, and is generally much happier afterwards.

There were other things...like that Paul started driving a company minivan (hehe) and I read all three Hunger Games books in a week, but those didn't really seem worthy of numbering:).  Burch family life is, as usual, the pinnacle of excitement--that's how we like it.  Above all, we are thankful for a great year...thankful for health, wealth, and happiness in all the ways that count and far beyond what we deserve.  Thank you Lord, for a blessed 2011.