We made it through 2008! That in itself is a miracle:) We have had quite the year and it makes me reflective....here is what I am learning:

-my family and dear friends love me more than I appreciated and far better than I deserve.

-I love, love, love my minivan.  It is the best car ever created and no amount of teasing from 'haters' can dampen my zeal! 

-even the worst things are better by the light of day than the dark of night.

-life is short and fragile, and full of indescribable joys and wrenching pain.  none of us deserves either, nor are we exempt. 

-now that I have two children, I understand how it is possible to love two such different little people equally.

--you absolutely never know what pain people carry with them.  I'm trying to be less judgmental of the rudness of random strangers...maybe their daughter was just diagnosed with an incurable heart defect, too.

-I love Motown and Oldies music (in addition to Country, which I already knew).  It makes me happy.

-I love my husband more than I knew possible and am so thankful we are on the same team:)

-God is faithful and his love is perfect and what He wants from me is trust.

-joy is a choice and it's "cutting off your nose despite your face" to choose anything else.

We had a blessed Christmas.  With each passing day, we are less fearful and enjoying both Garrett and Lilah more fully.  As always, we covet your prayers.  We have seen miracles, big and small, throughout the past year and we are looking forward to 2009.

Christmas is here! Christmas is here! I love it for all the obvious reasons, but Christmas seems even more special this year...we are with family, my littlest angel is so happy, and my biggest angel kind of "gets" it this year. As I've mentioned earlier, we been forced to "slow down" in lots of ways and it's made us focus on all the important parts of Christmas without getting caught up in the business.

One of the things we have been focused on is trying to teach Garrett about the reason for season.:) It's hard to know what he understands because he's at the stage where he just repeats what he's been told. But, I think he's getting it...Garrett made the nativity angel say "hallelujah" and then he said "I love you Jesus". I am clinging to this moment in the midst of the terrible twos:)

The fact that God sent his son, purposely, to die for me hits even closer to home this year. It is incomprehensible to me. As someone who is facing the possible mortality of my own child and begging for her life, I can't understand offering my son to pay the debt of the human race. It is a love beyond reason..a love that gives us a hope and purpose.

For God so loved the world, that he gave his one and only Son, that we may not perish but have everlasting life.
John 3:16

Thank you for reading this...I take it to mean that you love us and intercede on our behalf. I am soaking up the love this Christmas-feeling loved well by my husband, our children, our family, and our friends....feeling loved perfectly by the best present ever given..this night...thousands of years ago. Merry, Merry Christmas!

Here are some rejected, although sweet, Christmas card pictures.  

I keep telling myself I've been too busy to blog, but the truth is that I've run out of words (those who know me well can quit laughing now).  Really, I feel kind of numb.  Paul and I have been saying that for months now, but I mean it this time.  It is the only explanation for hearing that Lilah has "developed pulmonary hypertension, has some fluid around her heart, has to go back on continuous oxygen, and will probably need a feeding tube" and not crying.  She is much better this week.  The oxygen has reversed the pulmonary hypertension, and the fluid is reabsorbing.  Most importantly, she acts like she feels much better the past few days.  It's so sad to me that, while I haven't come to 'expect' these things, I have kind of steadied myself to take them as they come.  I am learning it's one of the keys to survival of this game.  

It's like the game on that Japanese game show where the contestants are trying to make it to the top of the grease-covered mountain and these humongous balls come randomly rolling down.  There is no way to predict what is next or what it will do to you....some balls injure, some knock you flat, some knock you off.  It's impossible to know how the game will end.  But, I'm putting on my helmet, stretching out, and yelling "arragotchee" (the contestants yell something and pump their fist over their head before they begin.  I can't remember the actual word in Japanese...I made that one up.)  All this to say that the rollercoaster of good news/bad news sucks, but that sweet face is always worth it!

God continues to bless us richly in the midst of sadness.  We are so thankful for the sweet, loving way that Lilah is cared for by her doctors and nurses.  These people are amazing-they are kind and compassionate and friendly faces in the storm.  Lilah's doctors are hers because they 'happened' to be on-call when the crisis broke:)...a reminder to us of His sovereignty.  I'm sure it sounds crazy, but He has given us a great joy in this time as well.  The Lord is teaching us what truly matters...and there is a lot of freedom there--freedom to let all the other "stuff" go.  Most importantly, He gives us hope.  A hope to experience His goodness in this life, and the promise of restored, everlasting life.

Here is how you can pray:

1.  We are traveling!  I'm so excited...it feels really 'normal' and I can't wait spend Christmas

    with my family and have a change of scenery.  Pray for health for all of us and a peaceful visit.

2.  That she is comfortable.  It's sad enough that she has all these problems, but it kills us that

she could be in any pain/discomfort (from lung issues, reflux, etc.)

3.  For our insurance to approve a nurse to help on occasion. It stresses me out to

think we are the only ones who can care for her and it's more than a 'babysitter' could handle.

Paul and I are humbled by so many of you who have been praying for Lilah and our family. Thank you, thank you, thank you!

Look at this face....my sweet Garrett!  Having him is like having "in house" therapy.  He is happy, energetic, joyful, and loving. (I could go on for hours about all he says and does, but I will spare you)  I love this boy....so much that it breaks my heart (too).  My mom always says that "motherhood is not for sissys."  This is maybe not the most profound thing she has taught me , but it sure might be the most truthful.  Loving so deeply makes me vulnerable, raw, exposed.  Being a mom is hard and I have the distinct impression that it will get much harder for me.  But oh, the joy is worth it!  Now I have (get) to go play "where Garrett go?" for the 30th time...

The Lord is close to the brokenhearted, He saves those crushed in spirit.

Psalm 34:18

We found out last Thursday that a genetic test run the last time Lilah was hospitalized came back positive for an abnormality. This abnormality, which was most likely spontaneous at conception, has caused a deletion of a portion of one of her chromosomes.  As explained to us today at the genetic counselor, this "altered" DNA is present in every cell in her body and accounts for all of the problems with Lilah's health, and many more that will present as she grows.  Children with this specific (un-named) chromosome deletion suffer from moderate to severe impairments in nearly every area of development and life.  

It has taken us these last several days to gather the strength to both absorb and share this terrible news.  We are absolutely brokenhearted...crushed in spirit and praying fervently for His saving grace.  We are grieving all the plans that we had for our daughter and her life and looking forward with trepidation to all this diagnosis holds.  We feel strongly that we owe it to Lilah to hope for the very best and pray for a miracle, despite her grim "prognosis."

Certainly this looks nothing like the life we thought she would lead, but we are still confident that her disabilities are not an accident. She is a child of the Lord, He loves her even more than we do and He allowed this and has a purpose in it.  

His promises are the same for Lilah-

"For I know the plan I have for you,' declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future."  Jeremiah 29:11

Please pray for us, for peace, hope, and strength and pray for Lilah's life to be full of miracles.

-Gina & Paul

Lilah saw her cardiologist today and got a great report.  Her doctor was pleased that she had come through an illness without any negative effects on her heart function.  She was not nearly as cautionary as I had originally thought about Lilah getting sick.  Obviously she still wants us to be very careful, but Garrett can continue at Mother's Day Out--which I am so thankful for because it took us months to get him to like it and it wouldn't be very fun for me (or him) to drag him along to our countless appointments (Lilah had 16 doctor visits last month!!).  Heart wise, things are pretty much as good as they can be right now, given the severity of her condition.  She is still on oxygen, but Dr. Bremer says it's not because of her heart.  We are trying an inhaled steroid and hoping that gives her lungs the "bump" they need to overcome the need for the extra O2.

It has been a really hard week for me....really sad and totally overwhelmed.  It seems like Paul and I take turns as the comforter and the one needing the comfort as the weeks pass.  I'm sure this is no accident.  

I am constantly reminding myself to take it one day at a time, remain hopeful, and be thankful. I think I forgot to post this, but Paul, Garrett, and I all had normal echocardiograms! We have switched Lilah to some special, anti-reflux, liquid gold, formula...and...she is gaining weight!!!! I have been totally, crazily, obsessed about her eating, so this gives me some peace:) Also, although she is still very hypo-tonic  (low muscle tone), she is gaining more head control by the day!!  And, my mom is here, as great logistical and moral support!  Here is a sweet picture of her (before the oxygen) to remind you to pray:)