Our Lilah girl has been gone from our arms for 5 1/2 months, but we celebrate her 8th birthday tomorrow. The night Lilah's was diagnosed with her heart conditions (at 7 weeks), her cardiologist gave her a 50% chance to survive the night. Lilah fought for 7.5years-and she finished the race well (2 Timothy 4:7) . We are afflicted in every way with the loss of her sweet spirit, but trust the Lord to uphold our family. We covet your prayers.
Happy Birthday Lialh!!
Friday, July 15, 2016
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 sweetestsitters 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.
During that time, my parents retired and moved to Knoxville. And we had the sweetest
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.
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.
Saturday, March 26, 2016
It is not over yet
It will be better tomorrow. Almost a mantra in my family. My mother would tell me...after an academic defeat, a bruised ego, a cheerleader cut, a broken heart. And it is true. Even in the darkest of nights, the sun rises again. In fact, the darker the night, the brighter the light. And I would know--we have had some damn dark nights...or what I thought were dark nights until the black hole that has been Lilah's absence.
It is darker than I imagined and I like it, as weird as that sounds. It seems right. I want to sit in the devastation. It feels good to me to grieve. I want to wail and moan and wallow. I want to keep my head down. When she died and our circle came to be with us when the funeral home came, to take her body away, I could not lift my eyes to meet theirs. I did not want to see their sorrow, their love, their encouragement that I could endure. I did not want to endure--surely there is no life without 1/4 of my heart.
Grief is profoundly selfish. It seems like it's all about me...all about Lilah...all about our loss. It feels like the extreme sadness will never be different than today. But by his grace, he reminds me...tomorrow is coming.
This night over 2000 yrs ago, I imagine the disciples did not want to endure either. They were sure their king was dead. Certain they had been wrong to follow a man that found himself hanged on a cross. I bet they could not imagine how God could right the wrong--but they did not get it and barely do I. And still the Lord says...
Lift your eyes to Me--It is not over yet.
Friday, March 25, 2016
Lilah's Eulogy
I write again (after 4 years) as an act of will. My God reminds me day and again that my girl is His girl and our story is His story, and, as all of His works...it is beautiful. I will start with her Eulogy, which was nearly as perfect as Lilah....
Good morning. My name is Drew Miller, my wife and I have had the distinct pleasure of being friends of Paul and Gina's for over a decade now, and I am so honored to be able to share with you this morning. But here's the thing, I don't have a clue how to do this. How do you stand up and attempt, over the course of a few brief moments, to communicate the life that was Lilah Burch? To say that words are inadequate doesn't even begin to describe the limits of language. As I thought about this moment, about what I could say to honor and celebrate Lilah, I was continually struck by this truth of her life: she never. spoke. a single. word.
Yet here we sit, our lives having been forever changed by her. Do we wish we could have heard her speak? Absolutely! But did she need speech to communicate? Absolutely not. You only had to walk in the room an her precious face would beam with joy. She would kick those dainty feet up and down, she would clap her hands together, and if I was lucky she would give me one of these ("daddy sign") but she usually saved those for her daddy. In that moment, walking into a room with her, it was as if she could communicate a world full of truth and love with a simple look, a gesture, a smile.
There were, of course, times when she was focused. Intent on keeping tabs on the latest happenings of her backyard friends, maybe you have heard of them? Pablo, Tyrone, Unique, Tasha, and Austin--The Backyardigans. In fact, I can guarantee that Lilah was personally responsible for the success of that show! You did not want to get between Lilah an her iPad!! She could be in the hospital, tubes and needles, nurses and doctors, but when you got this ("iPad sign") you had better find her iPad! Lilah also had a ferocious appetite that was centered most around gourmet finger foods, especially Cheetos. If there were no cheetos to be had, her paci would suffice, but if that was nowhere to be found, she was going to find something to chew on! If she could get her mouth near it, it was fair game!
These are the things that we will never forget about her. But the thing that will truly live on, Lilah's legacy, if you will, is the unconditional love she had for her mother, her father. For Garrett and for Ada. For her friends, for lucky fools like me.
Paul and I were talking the other night and he shared something with me that I want to share with you. When Lilah was born, before there was any indication of the struggle that was to come for her, Paul claimed the verse I read, Jeremiah 29:11, to be Lilah's verse. Weeks later, when they received Lilah's diagnosis, Paul did the reasonable thing, the thing that I would have done and you would have done. He questioned God. He read this verse from Jeremiah and he sat dumbfounded. How could God promise this, "not to harm you, to give you hope and a future" yet here they sat, with a child that would never walk, would never talk.
Then a marvelous thing happened. Paul and Gina began to experience God's love in a way they could never have anticipated. God used Lilah to display His unconditional love to them. He didn't do it through a strong and sturdy body, he didn't do it through an A+ student on the honor roll who lead her soccer team in scoring. He didn't do it through eloquence and language, he chose to show his love to the Burches through the frailty and brokenness of a beautiful little girl that touched more people in 7 1/2 years than most of us will in 70. Why? I don't have any idea. But I do know this is the way God tends to work, through weakness, through frailty, through the things that the world around us would have us dismiss and ignore.
And that part about giving her a hope and future? Lilah is experiencing hope in all it's fullness at this moment. Not hope like, I hope the Vols win today or I hope I get a new puppy for Christmas. Hope as in a promise that has come to fruition. Lilah is experiencing, at this moment, all of the hope, goodness, and prosperity of Heaven as she rests in the arms of her Heavenly Father.
Lilah Marie Burch was born July 16th, 2008. She was 7 1/2 years old when she went to be with her Creator this past Monday, February 1st, 2016. Lilah left behind her parents, Paul and Gina, her big brother Garrett and her little sister, Ada. She also left behind her grandmother, Mary Katherine Burch, her Grandparents Diane and Harry Steinsberger, and was proceeded in death by her late Grandfather, the Reverend Robert C. Burch. Lilah also has a myriad of Aunts, Uncles, and cousins, as well as a great-grandmother, all part of her story.
But the story that will forever live on the in the heart of Paul and Gina, her siblings, her extended family, and friends like me is this; She was weak, but He is strong. And through His strength and power, shown in her beautiful, marvelous, broken body, we experienced love unknown. That is Lilah's legacy. May we all strive to leave a legacy of love the way that Lilah Marie Burch has done.
Good morning. My name is Drew Miller, my wife and I have had the distinct pleasure of being friends of Paul and Gina's for over a decade now, and I am so honored to be able to share with you this morning. But here's the thing, I don't have a clue how to do this. How do you stand up and attempt, over the course of a few brief moments, to communicate the life that was Lilah Burch? To say that words are inadequate doesn't even begin to describe the limits of language. As I thought about this moment, about what I could say to honor and celebrate Lilah, I was continually struck by this truth of her life: she never. spoke. a single. word.
Yet here we sit, our lives having been forever changed by her. Do we wish we could have heard her speak? Absolutely! But did she need speech to communicate? Absolutely not. You only had to walk in the room an her precious face would beam with joy. She would kick those dainty feet up and down, she would clap her hands together, and if I was lucky she would give me one of these ("daddy sign") but she usually saved those for her daddy. In that moment, walking into a room with her, it was as if she could communicate a world full of truth and love with a simple look, a gesture, a smile.
There were, of course, times when she was focused. Intent on keeping tabs on the latest happenings of her backyard friends, maybe you have heard of them? Pablo, Tyrone, Unique, Tasha, and Austin--The Backyardigans. In fact, I can guarantee that Lilah was personally responsible for the success of that show! You did not want to get between Lilah an her iPad!! She could be in the hospital, tubes and needles, nurses and doctors, but when you got this ("iPad sign") you had better find her iPad! Lilah also had a ferocious appetite that was centered most around gourmet finger foods, especially Cheetos. If there were no cheetos to be had, her paci would suffice, but if that was nowhere to be found, she was going to find something to chew on! If she could get her mouth near it, it was fair game!
These are the things that we will never forget about her. But the thing that will truly live on, Lilah's legacy, if you will, is the unconditional love she had for her mother, her father. For Garrett and for Ada. For her friends, for lucky fools like me.
Paul and I were talking the other night and he shared something with me that I want to share with you. When Lilah was born, before there was any indication of the struggle that was to come for her, Paul claimed the verse I read, Jeremiah 29:11, to be Lilah's verse. Weeks later, when they received Lilah's diagnosis, Paul did the reasonable thing, the thing that I would have done and you would have done. He questioned God. He read this verse from Jeremiah and he sat dumbfounded. How could God promise this, "not to harm you, to give you hope and a future" yet here they sat, with a child that would never walk, would never talk.
Then a marvelous thing happened. Paul and Gina began to experience God's love in a way they could never have anticipated. God used Lilah to display His unconditional love to them. He didn't do it through a strong and sturdy body, he didn't do it through an A+ student on the honor roll who lead her soccer team in scoring. He didn't do it through eloquence and language, he chose to show his love to the Burches through the frailty and brokenness of a beautiful little girl that touched more people in 7 1/2 years than most of us will in 70. Why? I don't have any idea. But I do know this is the way God tends to work, through weakness, through frailty, through the things that the world around us would have us dismiss and ignore.
And that part about giving her a hope and future? Lilah is experiencing hope in all it's fullness at this moment. Not hope like, I hope the Vols win today or I hope I get a new puppy for Christmas. Hope as in a promise that has come to fruition. Lilah is experiencing, at this moment, all of the hope, goodness, and prosperity of Heaven as she rests in the arms of her Heavenly Father.
Lilah Marie Burch was born July 16th, 2008. She was 7 1/2 years old when she went to be with her Creator this past Monday, February 1st, 2016. Lilah left behind her parents, Paul and Gina, her big brother Garrett and her little sister, Ada. She also left behind her grandmother, Mary Katherine Burch, her Grandparents Diane and Harry Steinsberger, and was proceeded in death by her late Grandfather, the Reverend Robert C. Burch. Lilah also has a myriad of Aunts, Uncles, and cousins, as well as a great-grandmother, all part of her story.
But the story that will forever live on the in the heart of Paul and Gina, her siblings, her extended family, and friends like me is this; She was weak, but He is strong. And through His strength and power, shown in her beautiful, marvelous, broken body, we experienced love unknown. That is Lilah's legacy. May we all strive to leave a legacy of love the way that Lilah Marie Burch has done.
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