Tuesday, April 12, 2016

The Haze

As it turns out, I have very few memories between here and here.  Most of Lilah's life has been a haze for me.  Glimpses here and there, mostly highlighted in my mind by hospital stays.  And that's probably why I have no memory of the two years between when I stopped writing the last time and when she got 'really sick'...because she was pretty healthy and living life.  Of course this is relative--Lilah was, by no stretch of the imagination, "healthy".  But she (and we) enjoyed a really sweet period of health.  I think we actually went 2 years without a single hospital stay--or at least that's what I'm guessing since I can't remember the time between when Ada started walking running (summer 2012) and when Lilah's stomach ruptured (spring 2014).  That is amazing, and even as I type it, I hardly believe it.  She spent over 2 months of her first year in the hospital and the remaining years were peppered by days and nights at Children's Hospital.  At last count, she saw 15 specialists.  She had, what seemed, almost every thing wrong with her "earth suit" as you could imagine--so the memory of 2 "peaceful years" is astounding to me.

During that time, my parents retired and moved to Knoxville.  And we had the sweetest sitters angels that helped us manage the madness here.  Paul's brother and his family moved back from Israel.  My brother got married.  I started working because I needed to, mentally.  Garrett started kindergarten and Lilah did too.  She had the sweetest teacher, and the best aides, and the funniest bus driver.  I fed her "meals" through her G-tube, while I nursed Ada.  She went with us everywhere and Paul and I didn't have a real conversation in 18 months.

I do remember, during those years, that I would roll out of the bed and into my sneakers.  Not kidding.  #hitthegroundrunning  We were treading water.  Barely.  But I will always remember, even though I can hardly recollect, that those were the sweetest years of my life.  It will never get any better this side of heaven, and we knew it.  Our babies, our family, together.

I could write for days about the ways God prepared us to be Lilah's parents (I probably have written about it before).  And, looking back, He used those two years to heal us up from the 4 before--when she was always sick--and to prepare us for the two ahead, when she got too sick for us to care for her without help.  I am so thankful that we got to have Lilah for her 7 1/2 years, but I am especially grateful for the years free from nurses and hospitals...the years where she could sit up on her own, chuckle at an especially funny Elmo episode, and eat a few goldfish.   It was such a gift.  ...Let my life overflow with thanksgiving for all he has done (Colossians 2:7)  I am thankful, and I am heartbroken.  I am profoundly sad.  All of these things can be...at the same time.  Right now, I look in the mirror and know that the scale tips massively to the side of grief, but by God's grace I look forward to the day when those scales even out.  Even beyond that day, we covet your prayers and are so grateful for  the ways that so many people have come alongside of us, as we figure out how to live the next day without our sweet girl.

Wednesday, April 6, 2016

Back when Lilah was little, I started writing because I had so much in my head and I wanted to capture it--to remember the sweet mercies of the Lord and remind myself of the miracle that was each day of her life.  I was overwhelmed in every sense of the word and it was therapeutic for me...to 'hash-out' on (virtual) paper my thoughts, feelings, and perspective on this life I had been called to live--that was so very different than my plan.

To be honest, I have not had the courage to re-read a single post (except one a friend directly sent me about the time Garrett wanted to be black). I think it is much the same as the reason I can barely stand to look at old pictures of myself (besides the pounds and the wrinkles)....I see the reflection of a woman who is innocent and carefree...I read the words of a woman who thinks that that was as bad as it got...a woman who had no idea of what was ahead. And right now, I have no more pieces of my heart to break, so I cannot look back.  But I will someday.  And I will be grateful.

It is an act of will to write again.  I do not want to.  I cannot write and be fake--and what is real is really real.  Hard and raw and painful and maybe private, I don't know. But deep down, I have this nagging sensation that I have to put the words down.  Partly because I know I will not be the same person in 10 years that I am now....and I think it will be beautiful to remember today.  Partly because I can't afford my counselor.  every.  single.  day.  But mostly, because I am afraid to forget.  Afraid to forget the long days and the short years, the feel of her hand in mine, the softness of her hair, the curve of her back...the days that Lilah was in my care.

The last 8 years of my life have simultaneously been the most excruciating and the most fruitful. I have already forgotten much more than I like and I'm going to start recapturing what I can
remember...starting here.