Saturday, July 23, 2011

My little bug is 2 months old today! The first 3 weeks were great, the last week has been good, and the 4 weeks in between.....hell.  Just kidding, not hell, but very very hard.  If you've been reading my blog for awhile, you know that I'm all "having a sick kid gives you perspective".  I can hear my own words "after dealing with what we did with Lilah, a healthy newborn will be a piece of cake".  Ha.  Haha.  You know what that kind of glib confidence gives you right? A swift kick in the rear.

Because nothing makes you abandon all 'perspective' like a hysterically screaming infant that will. not. stop.screaming! Unless maybe it's a baby that spends all day long smiling peacefully, tricking you into thinking tonight will be different, only to start wailing uncontrollably the minute you start thinking about laying your head on the pillow. Ada alternated these 2 approaches--to keep us on our toes:).

I'll tell you people, I pride myself on being somewhat 'tough'...mentally at least.  Riiiiiight.  What I learned is that I'm the weakest of weaklings.  Powerless against the mental assault of an 11 pounder.  I have the utmost respect and sympathy for parents that deal with real colic...because whatever those 3 weeks were they took a serious (and thankfully temporary) toll on my health, wealth, and marriage.

Welcome back happy baby!

Tuesday, July 19, 2011

Birthday Bummer

We celebrated Lilah's 3rd birthday with a "Backyardigans" party, which means I had invitations printed, we had a cookie cake, and treat bags...all with her favorite faces....Pablo and his gang (pictured below).
I had no grand illusions that she would be all 'thanks mom, i love my party' because she didn't really have a clue that it was her birthday--or even what a birthday is, for that matter.  But, one of the thousands of things I'm still trying to figure out in this journey is how to keep life as typical as possible with an atypical child.  We want her to have every opportunity to experience as much of life as she is able.  There are very few activities that she likes and/or is able to be a part of these days.  I kind of thought a birthday party would be one of them.  Of course we want to celebrate her life and want her to feel celebrated.  She did not feel celebrated.  She felt scared, confused, and totally overwhelmed.  Fail.
The thing is, we basically just invited family, but with the Burch crew, it ends up being a lot of people.  People that she loves and sees regularly.  But, they are not all always at her house, surrounding her, singing to her.  We sang happy birthday to Lilah, because that's what happens when it's your birthday.  And her lower lip started to quiver, and her eyes filled with tears, and she looked at Paul and I with one of the saddest expressions I have ever seen.  It was as if she knew she should like it, but she knew also that she didn't 'get it'.  Broke my heart.  I felt like I had set her up--unintentionally, of course, but we had failed her none the less.

Birthdays are hard around here.  Just like most things in this path we are on, the emotions run the spectrum from extreme joy and thanksgiving to profound sadness and grief.  Of course we are overwhelmed by the blessing of her 3 years, but we are also more clearly aware, on 'milestone moments' of the trials that we have endured and the difficulties that lay ahead.

After the disastrous song and an even poorer reception of 'gift opening', I was having a little pity party for myself.  My sadness met total understanding when I saw my husband's face.  He told me, "you are sad because it's sad".  Paul is deep, I know:)...but he's totally right.  It sucks that Lilah is limited in the ways that she is.  It's terrible that the other little girls are running around trading charms for their bracelets and she is eating crayons.  This was not my plan for her and it is just plain hard.  As much as we feel like we've 'accepted it', I am learning that there is new acceptance to work on at each new stage.  And probably, more truthfully, I am never going to be "OK" with will always be hard.
  At the end of the party, she was happy as could be, watching her Backyardigans on the iPad....looking up to see if her mommy and daddy were enjoying it as much as she.  And I felt better.  We had not done permanent damage.  Lesson learned.  She is helping us navigate this path, isn't she?  Lilah may not talk, but you know exactly how she feels by the look on her face.  She has very few expectations and most of them are to be in the comfort of those she loves--and we do adore this girl! Lilah loves life and people with her whole heart....a love that is fierce and pure.  And she has taught us a lifetime of lessons in her 3 years.  
We continue to covet your prayers for her life--prayers that God will protect and bless Lilah, whatever that looks like--and most importantly, that His will be done in her life.  

Saturday, July 16, 2011

Happy Birthday Lilah

Our sweet miracle is 3 today.  It's offical, she is a baby no longer...but I will think about that tomorrow.  For today, we are celebrating the joy of her life.  What a 3 years it has been!:)

Wednesday, July 13, 2011

In this crazy world, there's an enormous distinction between good times and bad, between sorrow and joy.  But in the eyes of God, they're never separated.  Where there is pain, there is healing.  Where there is mourning, there is dancing.  Where there is poverty, there is the kingdom.
                                                      --Henri Nouwen

Like staring into the sun, I could not look upon Ada too long without tears for the first several weeks we had her home.  Tears of joy, obviously.  But, also tears of much more complicated emotions.  Emotions that were surprising to me, and not all together pleasant.  Having this perfect new bundle of joy in my arms bought memories of Lilah's infancy rushing back.  Memories that I had forgotten, or probably, more accurately, just pushed out of my mind.  Looking back, comparing these two babies....of course Lilah was sick, how could we have missed it, they are so different.  But, as I've said before, I don't beat myself up for missing it in those early was a blessing.  What strikes me more are all the tiny (and big) ways that Ada is strong, and curious, and she literally develops more by the day....and all the ways Lilah is not.
This is not your typical "I wish Johnny was smart like Mike" comparisons of offspring that every parenting magazine warns against.  This is more of a subconscious matchup of right and wrong.  They way things should be versus how they are, in my oldest girl versus my youngest girl.  A startling equation that spells out exactly what was taken from Lilah when those tiny bits of chromosome went missing.
And it has made me incredibly sad.  Missing what I missed out on in her infancy. Grieving what she will miss out on in this life.  Realizing in new ways how hard it is going to be to care for a perpetual child.  Knowing the day is coming that her 3-year-younger sister will run circles around her.

But that quote, by Henri whoever is spot-on.  The good and the bad hard times are so often intertwined.  Thankfully, the scale tips toward joy almost every time.

Friday, July 8, 2011

Pray for Hutton

During the worst of times with Lilah, the Lord sustained us and provided for Paul and I in surprising ways. One of those surprises was Paul running into a girl he went to high school with in the lobby of Children's Hospital, when Lilah was in the PICU.  "Coincidentally", Jill has a little girl with a major heart defect and she reached out to me as a friend when I felt incredibly alone in sadness and fear.  She became a fast and dear friend.  And today, her little girl, Hutton has gotten a new heart.

The greatest gifts Paul and I have ever received are prayers on behalf of our family...please give the same gift for this sweet angel.  Pray that Hutton's new heart 'takes', that there are no complications, and for a swift recovery.

Wednesday, July 6, 2011

Well, you might have noticed that I've been a bit absent from the blogger world lately.  It's not for lack of news, or updates, or thoughts, but more a lack of hands and time.  3 kids is no joke, you all.  Seriously.  It's the kind of busy that makes me feel like my head is rotating on my neck, I'm so occupied with what each of the 3 chickens are doing and tending to their needs.  It's great, don't get me wrong.  And, it's like Ada's always been here....except for the tiny part about me still not being able to mother all of them (well) at the same time.  It's a process, getting your feet under you when you bring home a new member.  We are all stretching and growing in the areas of patience and selflessness (hahahha)....and Ada is just stretching and growing (in body and lungs!).

Tuesday, July 5, 2011

4th of July

The only picture I got of Ada, who had the sweetest little patriotic outfit. She slept through most of the festivities:)

These boys are getting to be bigger and better friends each year...seems like I was pulling my little Garrett in his first parade just yesterday.

And he's off.... we of 5.  Out the door.  At an 'event'.

We had a great time and are so lucky to live in such a great neighborhood, full of rich traditions!