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.
Thursday, October 11, 2012
I am alive. I realize you probably thought I'd given up...and I guess I did, on many things, for many months. But don't worry, I keep the important stuff! My kids, my marriage, my faith....still very much intact. I think I just got to a point where I was tired of talking (quit laughing. totally serious.)--sometimes I feel like I live groundhog day (we all do)--same stuff, in some form or fashion, a different day. But I'm back (I know, I've said it before) and I'm sure I'll have lots to say.....until then, feast your eyes on my babies:).
Sunday, April 8, 2012
Easter 2012
We are alive, I promise. And thriving, I think--who really knows, though. Time is whizzing past so quickly that I rarely have time to take stock in things and certainly no time to write it all down here. But, I want to, and I know the time will come again where this is a great outlet for me....a place to share the funnies of the day or to sort out the fears that keep me up at night. But, for now, only pictures.
We had a great Easter--a sweet celebration of a miracle unlike any other--the death and resurrection of our Lord Jesus, so that we may have all we need for an eternity.
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| AnnaKate, modeling her basket loot |
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| this is about how it goes...the only reason G was cooperative is because he was the only one who understood the bribe |
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| the best i could do of a group shot |
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| Lilah on her favorite spot: daddy's lap! |
Saturday, March 10, 2012
I have seriously dropped the blogging ball....life is about juggling, and lately I've added in several new juggling balls--something had to go. But, I did want to update anyone who is interested.
My girls have had RSV and basically, been sick for 2 weeks. There is nothing quite as humbling for me as when my kids get sick...because no matter how well I've been holding things between the lines around here....it all gets shot to heck when I try to add in sleepless nights, doctor visits, ear drops, antibiotics, and breathing treatments. I am happy to report they are better. Whew.
Ada is on.the.move. I have no words for the delight (and exhaustion) that she is for us. Paul, Garrett, Lilah, and myself are all a bit obsessed with her:).
Garrett has had several 'things' to get ready for Kindergarten. Meeting with his teachers (they say he is 'ready'), meeting at his new school (which is so precious), and a meeting with his pediatrician for shots (i would like to apologize to the 2 nurses who likely needed ice packs after we left).
All this and a million little things that keep me running like a crazy (but very happy) woman.
My girls have had RSV and basically, been sick for 2 weeks. There is nothing quite as humbling for me as when my kids get sick...because no matter how well I've been holding things between the lines around here....it all gets shot to heck when I try to add in sleepless nights, doctor visits, ear drops, antibiotics, and breathing treatments. I am happy to report they are better. Whew.
Ada is on.the.move. I have no words for the delight (and exhaustion) that she is for us. Paul, Garrett, Lilah, and myself are all a bit obsessed with her:).
Garrett has had several 'things' to get ready for Kindergarten. Meeting with his teachers (they say he is 'ready'), meeting at his new school (which is so precious), and a meeting with his pediatrician for shots (i would like to apologize to the 2 nurses who likely needed ice packs after we left).
All this and a million little things that keep me running like a crazy (but very happy) woman.
Sunday, February 19, 2012
Presidents Day
It looks like I'm down to blogging only on major holidays (sorry I missed Whitney Houston Day). For one, my baby is on the move. F.A.S.T. For two, I've started a little side project that is taking all my computer hours.
But, I'll leave you with this presidential dinner conversation (don't think we are like the Cleavers, we usually talk about basketball or are too busy making threats to talk).
Me: Garrett, what would you do if you woke up tomorrow and George Washington was at our breakfast
table? (he had just told me he was his favorite, which is code for 'the only one he knows')
G: " I'd say "WHAAAAAT? Are you DOING here?"
"Then I'd sing, OH SAY CAN YOU SEE"
But, I'll leave you with this presidential dinner conversation (don't think we are like the Cleavers, we usually talk about basketball or are too busy making threats to talk).
Me: Garrett, what would you do if you woke up tomorrow and George Washington was at our breakfast
table? (he had just told me he was his favorite, which is code for 'the only one he knows')
G: " I'd say "WHAAAAAT? Are you DOING here?"
"Then I'd sing, OH SAY CAN YOU SEE"
Tuesday, February 14, 2012
Happy Valentines Day
I would love to have a full-time transcriptionist that follows us around and writes down what Garrett says. Here's an bit from this morning:
Me: "Happy Valentines Day!"
G: "You are my valentine, momma."
"Well, and myself. I love myself."
"I think it's important to love yourself"
Me: "Happy Valentines Day!"
G: "You are my valentine, momma."
"Well, and myself. I love myself."
"I think it's important to love yourself"
Tuesday, February 7, 2012
Happy Heart
We get a little uneasy around here right before a cardiology appointment, but last week's arrived before I even had a chance to worry. And, thankfully, Lilah's heart looked awesome! Her cardiologist was genuinely pleased and said everything looks as well, or better, than last time. Hooray!!!
Don't hear me say that her heart problems are gone, because the issues are still there, but Lilah's heart is doing an excellent job compensating and the function (the fill and empty of blood) is very close to normal.
Like soldiers after battle, Paul and I and her doctors love to talk about how sick she was 'back in the day'....shaking our head in disbelief that this is the same girl. "....wonderful are His works!" (psalm 139:14).
Happy Valentines Day, early!
Don't hear me say that her heart problems are gone, because the issues are still there, but Lilah's heart is doing an excellent job compensating and the function (the fill and empty of blood) is very close to normal.
Like soldiers after battle, Paul and I and her doctors love to talk about how sick she was 'back in the day'....shaking our head in disbelief that this is the same girl. "....wonderful are His works!" (psalm 139:14).
Happy Valentines Day, early!
Wednesday, February 1, 2012
Tuesday, January 31, 2012
I feel like with 3 kids in the house, we almost always have some 'night time issue'--if I make it through the night to a respectable morning time without getting up at least once, I'm always shocked. One night this week our night time surprise was a midnight visitor. I rolled over in the night and noticed Garrett sleeping beside Paul...he learned a long time ago that he would get a much more welcome invitation from his father's side than mine:).
The next morning, Paul and I woke up to the sound of a baby crying, but no Garrett in our bed (for the record, he has been known to wake Ada in the am, but this was not the case that day). We were practically 'high-fiving' each other as we made the bed...celebrating that he had, on his own, without tears or threats from either side, gone back to his own bed. Parenting success. Yeah for us. We are awesome.
At breakfast, we celebrated the little king....congratulating him on his mature decision to return to his own bed, when he says:
"Oh. I did that because I wet your bed."
Perfect:)
The next morning, Paul and I woke up to the sound of a baby crying, but no Garrett in our bed (for the record, he has been known to wake Ada in the am, but this was not the case that day). We were practically 'high-fiving' each other as we made the bed...celebrating that he had, on his own, without tears or threats from either side, gone back to his own bed. Parenting success. Yeah for us. We are awesome.
At breakfast, we celebrated the little king....congratulating him on his mature decision to return to his own bed, when he says:
"Oh. I did that because I wet your bed."
Perfect:)
Thursday, January 26, 2012
What She Has, Part III
**just to clarify--none of this is 'new news', we found out Lilah had 1P36 deletion syndrome over three years ago, but chose not to share it at the time.
The news was the worst we had received so far....which is saying a lot, because in the course of the last 4 months, we had gotten some pretty bad news...time and time again. I remember telling a friend that I felt like the sky was falling in, bit by bit--and the news that Lilah had 1P36 deletion syndrome was the final bit. I'm sure everyone is different, but for us, this felt like the worst news we could receive.
The news was the worst we had received so far....which is saying a lot, because in the course of the last 4 months, we had gotten some pretty bad news...time and time again. I remember telling a friend that I felt like the sky was falling in, bit by bit--and the news that Lilah had 1P36 deletion syndrome was the final bit. I'm sure everyone is different, but for us, this felt like the worst news we could receive.
Here is why it was far worse for us than any of the other diagnoses we had already been given:
-it was the reason for alllllll the other 'things'....the seizures, the structural anomalies, the low tone, the poor weight gain, the heart disease....they were not mutually exclusive anymore...and their sum seemed greater than the individual parts....and even though we knew they were not going to get better....now we knew.
-this diagnosis came with a slew of new things to worry about that, up until that day, we had not even considered (certain mental retardation, hearing and vision loss, non-verbal communication, etc)--and we already felt very maxed out in the worry department.
--the diagnosis felt like a death sentence....if not literal death, then certainly a death of hope. Up until that day, we still held the slightest hope that she might be 'normal' (very sick, but 'normal'). now, we knew she wouldn't be 'normal'.
We didn't really keep her diagnosis a 'secret', but we definitely did not share it with anyone but close friends and family. I knew we wouldn't keep it private forever, and it was nothing we were ashamed of,we I just needed awhile to process it. I did not want 'it' to be what defined Lilah....before she had a chance to prove all the statistics wrong. I did not want people I had never even met, googling pictures of 1P36 babies and comparing their pictures to my baby.
Most of that seems silly now and I wanted to share because God has written this child a beautiful story....and this is a part of that story. I know that 'what she has' is not 'who she is'....she is the daughter of the King, perfect and pleasing in His sight. I hope Lilah's life is and will continue to be an encouragement to others.
We didn't really keep her diagnosis a 'secret', but we definitely did not share it with anyone but close friends and family. I knew we wouldn't keep it private forever, and it was nothing we were ashamed of,
Most of that seems silly now and I wanted to share because God has written this child a beautiful story....and this is a part of that story. I know that 'what she has' is not 'who she is'....she is the daughter of the King, perfect and pleasing in His sight. I hope Lilah's life is and will continue to be an encouragement to others.
Monday, January 23, 2012
What She Has, Part II
And so...I studied the pictures of the kiddos with the syndrome I'd found on the internet, begging the Lord that this was not "it"and quietly knowing it was.
We went to the pediatrician the next morning and dealt with the constant health housekeeping of those days--adjustments of medicines and oxygen, coordinating services and physicians--and I was a nervous wreck the whole time, trying to get up the nerve to ask:
"So, about that genetic test you had run...have you heard?"
Our doctor said he was sure it was fine, but would call Children's and see if the results were in yet.
He came back in the room, nearly weeping, and said:
"Mr and Mrs Burch, I'm so so sorry. Lilah has 1P36 deletion syndrome."
Paul, at that point was clueless about the implications of that diagnosis and I was, between sobs, sputtering an obscene amount of knowledge about this condition....rambling on about all the symptoms I had read about the night before.
Heart disease, heart deformities, seizures, hypotonia, loss of vision, scoliosis, loss of hearing, lung disease, significant gross motor impairments, fine motor impairments, inability to communicate, and...severe cognitive impairments.
By God's grace we were able to reassure our sweet friend and doctor that we weren't going to drive off the Henley Street Bridge.
Part III later....
We went to the pediatrician the next morning and dealt with the constant health housekeeping of those days--adjustments of medicines and oxygen, coordinating services and physicians--and I was a nervous wreck the whole time, trying to get up the nerve to ask:
"So, about that genetic test you had run...have you heard?"
Our doctor said he was sure it was fine, but would call Children's and see if the results were in yet.
He came back in the room, nearly weeping, and said:
"Mr and Mrs Burch, I'm so so sorry. Lilah has 1P36 deletion syndrome."
Paul, at that point was clueless about the implications of that diagnosis and I was, between sobs, sputtering an obscene amount of knowledge about this condition....rambling on about all the symptoms I had read about the night before.
Heart disease, heart deformities, seizures, hypotonia, loss of vision, scoliosis, loss of hearing, lung disease, significant gross motor impairments, fine motor impairments, inability to communicate, and...severe cognitive impairments.
By God's grace we were able to reassure our sweet friend and doctor that we weren't going to drive off the Henley Street Bridge.
Part III later....
Sunday, January 22, 2012
What She Has
The short backstory is: when Lilah was admitted to the ICU (the first time) and her cardiologist (who we had never met) met us up there (on a Saturday) to tell us that she not only had an ASD (hole), but also a VSD (another hole), and LVNC (something wrong with the muscle)....I knew right then and there that she had a syndrome. Because of my background in speech therapy, I knew that a child doesn't present with more than one structural anomaly by "chance" (usually). I think I blacked out at that point, because I only remember tiny bits of the next few days.
Anyway, a couple of months went by and we never pursued a 'diagnosis' because we were, literally, busy trying to keep her alive. But, the Lord had provided a pediatrician for her who also 'happened' to be a genetic specialist and he knew exactly what to look for--so, he had specialized labs run for a specific syndrome during one of Lilah's hospital stints. He did not tell us what the syndrome was he was looking for, only that the labs had been sent.
I am nothing if not practical and direct, which I say because the next part of the story is highly unlike me. I am not prone to imaginative fears, or intuition, or any kind of 6th sense. I do not Google unknown quantities-- 'number to pizza place', yes --'causes of a cough', no. But, the night before a scheduled doctor visit (at this point we went 2x/week), I was laying in bed unable to sleep, and thought I'd surf the web. :) I typed what I thought were her biggest 3 symptoms into the search bar and the first thing that resulted was the name of some syndrome I'd never heard of--and a picture of a child that looked an awfully lot like Lilah.
You'll have to come back for Part II, because I just heard the princess chuck her glowworm out of her crib--which, in Lilah-speak, means "mommy, get in here now!!". Duty (& privilege) call. More soon....
You'll have to come back for Part II, because I just heard the princess chuck her glowworm out of her crib--which, in Lilah-speak, means "mommy, get in here now!!". Duty (& privilege) call. More soon....
Valentines
If you are looking for the perfect gift for someone you love, or from someone you love....I have it! I got these for Christmas and, I'm not kidding, I think they are the best gift I've ever gotten (except my engagement ring!). They are giant, professional, wooden photos of my babes and they are gorgeous in person. Seriously, works of art! Look how pretty:
Check them out here.
Check them out here.
Saturday, January 21, 2012
Sisters
My favorite moments as a mom are watching my children together. I have no idea why, but it's just the sweetest thing ever. Sometimes a lot of times, it makes me sad to watch Lilah with her siblings, because it's so obvious that she's in her little world--but most of the time, I love peaking around the corner to capture glimpses like this:
These sweet sisters love each other and one another's company. They are always right on top of each other, sometimes to the point of annoyance for one or the other--which especially cracks me up.:)
Someone stealing pacis or pulling hair, ignites huge crocodile tears from the other, but they make up with giant, slobbery kisses:).
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Someone stealing pacis or pulling hair, ignites huge crocodile tears from the other, but they make up with giant, slobbery kisses:).
Wednesday, January 18, 2012
Tuesday, January 17, 2012
Happy MLK
I think MLK would be proud, because somewhere in the South, a little boy not only believes that the races are equal, but that black is superior to white. America, we've come along way.
The boy is, of course, mine and, at 5 years old, he says his biggest dream is to be African American. This cracks me up every time. Garrett is not at all joking, and after a month of his father and I explaining how God makes skin in a rainbow of colors (and with the exception of Michael Jackson, you pretty much are what you are), he's just now starting to realize his dream will never come true. Sigh.
On a side note, the fact that it has taken 4 weeks of almost daily conversation to explain something like this is overwhelming to me as a parent.
G has said so many hillarious things on the subject that I don't even know where to start. It pretty much goes without saying that this whole thing stems from an obsession with basketball, because everything does. I've told you all that bball is life around here right now, and I'm not kidding. Someone asked him over to play the other day and Garrett looked them square in the eye and said, "I'm sorry, but you know how busy I am with basketball." I bet you are not surprised to know that mybasketball sports knowledge would not fill up a post-it note, but in the few ESPN clips and Youtube videos I've watched with my little fan, it's not hard to imagine how he would equate dark skin with skill.
That's the beauty of youth....he calls things like he sees them...free of predjudice or any preconcieved ideas....free of fear of offense or political correctness. He can say anything he wants (within reason), and the boy says he wants to be black. "Without stamps." (fyi, this is 5 year old speak for 'tattoos')
Here are a few other doozies of the last month,
"When I grow up, can I be African American?"
"I don't want us to adopt a brother, because he'd be african american and I wouldn't."
"Mommy, did you used to be African American?"
"I was hoping and thinking that when I got to slap the players hands before the game, I'd turn black."
"Daddy, will you draw me as an african american?"
"How about I go to Africa and get my skin painted?"
Lets out the biggest sigh I've ever heard and says, "I guess my dream is never going to come true."
Love that boy!! He's pure and innocent (except for all the times he's sinful and disobedient:). I'm really, really thankful to raise children in this day and age instead of one before and hopeful that their children will never know a day of discrimination or inequality.
The boy is, of course, mine and, at 5 years old, he says his biggest dream is to be African American. This cracks me up every time. Garrett is not at all joking, and after a month of his father and I explaining how God makes skin in a rainbow of colors (and with the exception of Michael Jackson, you pretty much are what you are), he's just now starting to realize his dream will never come true. Sigh.
On a side note, the fact that it has taken 4 weeks of almost daily conversation to explain something like this is overwhelming to me as a parent.
G has said so many hillarious things on the subject that I don't even know where to start. It pretty much goes without saying that this whole thing stems from an obsession with basketball, because everything does. I've told you all that bball is life around here right now, and I'm not kidding. Someone asked him over to play the other day and Garrett looked them square in the eye and said, "I'm sorry, but you know how busy I am with basketball." I bet you are not surprised to know that my
 |
| Garrett's favorite player |
That's the beauty of youth....he calls things like he sees them...free of predjudice or any preconcieved ideas....free of fear of offense or political correctness. He can say anything he wants (within reason), and the boy says he wants to be black. "Without stamps." (fyi, this is 5 year old speak for 'tattoos')
Here are a few other doozies of the last month,
"When I grow up, can I be African American?"
"I don't want us to adopt a brother, because he'd be african american and I wouldn't."
"Mommy, did you used to be African American?"
"I was hoping and thinking that when I got to slap the players hands before the game, I'd turn black."
"Daddy, will you draw me as an african american?"
"How about I go to Africa and get my skin painted?"
Lets out the biggest sigh I've ever heard and says, "I guess my dream is never going to come true."
Love that boy!! He's pure and innocent (except for all the times he's sinful and disobedient:). I'm really, really thankful to raise children in this day and age instead of one before and hopeful that their children will never know a day of discrimination or inequality.
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