Thursday, July 16, 2009

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.

10 comments:

The Leonards said...

Beautiful. We love you all. God is so good.

Foofie said...

Gina,
This post brought tears to my eyes. Watching from afar we continue to pray for dear sweet Lilah,You, Paul, and Garret. So many analogies, (never meant to diminish the significance of what's going on and the reality you continue to live) beauty from ashes, joy from sorrow, healing to the broken...the list goes on. I am inspired by the testimony of Love, God's love revealed in the way that you love your daughter and family. God's love on display as you give us glimpses into the range of emotion of your heart, and how he meets you there every step of the way.
It is a God story, loud and clear...

We continue to pray.

Thank you for sharing the life of your daughter and your family with us. Praise the Lord for it all, but particularly for this sweet celebration!

Abu Yossi said...

i once told someone in israel last year that the only thing i wanted was to be able to give lilah a kiss. i not only got that but am able to get to be an uncle to her. god is so good.

Elizabeth Browning said...

So precious! Please post more pictures of the birthday celebration! She is just too cute!!!

notes of em said...

thank you.
I love you.
I love your family.
thank you.

Johnson Party of seven! said...

AMEN, sister! She is a sweet breath of life! So precious! JOY! Pure JOY!

Gina- I got your sweet text and I was waiting for a quiet moment to call you and as you can see, it never happened. The last days have been a whirlwind as we were getting ready to come. We made it and I had a quick moment as Hutton watches Elmo and before we head back to CHOP for the night so I wanted to check in on Lilah. So glad I did. Very inspiring and made me focus on the big picture. Love ya'll to pieces!

Cade and Cora said...

Wow! Lilah is truly a miracle and you and Paul chosen as her parents perfectly! Congratulations! You never cease to amaze and inspire me!

daisyeyes said...

Yeah for birthdays, such a sweet girl (LOVE THAT SMILE!!!), miracles and for the beauty of your family's testimony!

Amy said...

Beautifully written... and I'm sure it comes easily when inspired by your sweet Lilah and an Amazing God! What a cute picture, by the way!!

Anonymous said...

How awesome that you have celebrated Lilah's first birthday! And what an added blessing the Cardiologist's report was--we rejoice with you. Donna Willis and family