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Yesterday was the one year anniversary of Donna's open heart surgery. To put it simply, I have felt all the feels. ⁠⠀
⁠⠀
The last two months have been a wild ride. At the beginning of November we learned that Donna had not only stopped gaining weight, but was losing weight -- rapidly. She had dropped almost a whole pound since mid September. ⁠⠀
⁠⠀
A slew of tests, procedures and doctor visits ensued. But by the end of the month, she was down yet another pound. My already peanut-sized girl, who was barely pushing the 20th percentile, was plummeting off the charts. I could hear the troubling tone in the doctor's voice the day we left her clinic to embark on more tests, more procedures. The day the word 'NG tube' was mentioned again. One year removed -- to the day -- from the last time we left the hospital with an NG tube.⁠⠀
⁠⠀
It felt impossible not to be scared. It felt impossible to not think that we were headed into surgery again. I had just lived this. Had I not? Again I desperately prayed that I wasn't watching my daughter wither away...⁠⠀
⁠⠀
(Continued in comments)⠀

Instagram post 2194557868184127645_40343717

Santa Claus! 🎅🏻

Instagram post 2176595362903760521_40343717

BABY NUMBER 4 COMING JULY 2020! 😱

Prophecy is not a word that occurs in common conversation. It almost exclusively belongs in the Old Testament, right? But as I look at this little doodle I made shortly after Nick and I were engaged (over 10 years ago) my eyes narrow a bit and head tilts ever so slightly to the side. I feel the hairs on my arms prickle and a tingle run up the back of my spine... Is that not our house? The old farmhouse with the fence out front? The barn to the right with a second drive? The garden planted directly out back? Over looking the field of crops? Surrounded by big old trees?
The likeness is uncanny.

As each of our children were born this little doodle would come to mind. This silly little doodle that somehow stuck around all these years. And as we neared making the decision that we were done growing our family, I again thought of this ridiculous doodle. Why did it challenge me so?

I’m gonna be honest, it’s been a rollercoaster of emotions since we found out baby number four is on the way. But when I look at this drawing? The word that permeates my mind is: prophecy. The Lord reminds me during this time of unknown and uncertainty, that while I don’t know, he does. That while I am uncertain, he is.
And always has been.
I feel immense joy and peace in knowing that this is not just a plan some younger version of myself devised for our family, but that this is God‘s plan for our family. And holy crap FOUR KIDS.

So! Who’s ready to weigh in? Is it going to be a girl or a boy?! My money’s on the prophecy. 😉

Instagram post 2170633246942374155_40343717

A little over a year ago now, I put down the book I was reading. This book.
It’s become symbolic really... Because with it I also somehow put down a host of other things: my mental health, my physical health, my words, my writing, my art and — most importantly— my call to share our story, as it’s happening. Raw and real and unedited. “Good here too.” These are the words that have echoed in my mind, thundered in my heart and the ones I’ve felt on the tip of my tongue for quite some time now. Far before I both picked up and put down this book. “Good here too.” These are the words that grow wilder and stronger with each passing day that I keep them locked inside. Because it’s easier, safer, neater for me to avoid them than attempt to do them justice.
A little over a year ago now, I put down the book I was reading. This book.

But on the day that I picked it back up, as the sun cracked open the morning sky, I read: “I drive out of dark and into morning glory.
I awaken to the strange truth that all new light comes out of the dark places, and hasn’t it always been? Out of darkness, God spoke forth teeming life. That wheat round and ripe across all these fields, they swell as hope embryos of the black earth. Out of the dark, tender life unfurled. Out of my own inner pitch, six human beings emerged, new life, wet and fresh.
All new life labors out of the very bowels of darkness.
That fullest life itself dawns from nothing but Calvary darkness and tomb cave black into the radiance of Easter morning.
Out of the darkness of the cross, the world transfigures into new life. And there is no other way.” (One Thousand Gifts, Ann Voskamp)

Would you believe me if I told you that those words were waiting for me? Tucked easily, safely and neatly alongside the bookmark that sat untouched for hundreds of days. Words just for me. Light I found while in the dark, that spoke straight into me in an absolutely, undeniably, God given way. Truth that enumerates my own “good here too.” That compels me to stand up, clear my throat and breathlessly state another truth that God has placed on my heart for so, so very long: **CONTINUED IN COMMENTS**

Instagram post 2151807410915017276_40343717

She started on the blanket. Would you look at her go?! Cue Google search for: how to get grass stains out of a baby’s sleeper.

This girl... The girl who had her clavicle broken during birth. The girl who has had her chest cracked open to reconstruct her complex heart anatomy. The girl who goes about her day coping with severe mitral valve stenosis — despite having a reconstructed heart. The girl who still faces future reconstructive heart surgeries. The girl who has two left patterned lungs. The girl who has a stomach, colon and liver on the opposite sides of her body. The girl with malrotated intestines. The girl with two spleens, instead of one. Both of which are non-functional.

The girl that suffered congestive heart failure. That stopped gaining weight. That stopped growing. The girl that struggled to breathe. Struggled to eat. The girl that I clutched to my chest in the middle of the night as I heaved silent sobs in a hospital rocking chair. The glow of monitors the only thing illuminating our faces and that night, my soul. The girl that, for the first time, painfully displayed just how sick she really was. Maybe even still is... The girl that has gross motor skill delays. Takes medication multiple times a day. The girl that has a cardiologist, hematologist, immunologist, gastroenterologist, nephrologist and physical therapist. The girl that has a fever protocol. A medical binder. An emergency sheet.

This girl... Would you look at her go?! What would it look like if more of us lived our lives blind to ‘The Things That Hold Us Back’? Would we lose more? Would we fail more? Would we hurt more? Or would we all have more grass stains on the seats of our pants?
Here’s to leaving our blankets of comfort and safety behind us, for the adventure that lies ahead. Here’s to taking notes from the girl who lives blindly to ‘The Things That Hold Her Back’. And here’s to countless more Google searches for: how to get grass stains out of the seat of your pants.

Instagram post 2137203881495330409_40343717

DONNA UPDATE:

Donna's echocardiogram yesterday morning showed that she is stable since her last echo two months ago. There are still increased pressures on the right side of her heart caused by the mild regurgitation and severe stenosis of the mitral valve, but (same as last time) she remains asymptomatic while on Lasix. Dr.Hahn feels good about having her back in THREE months — the longest we’ve ever gone between cardiology visits — for another echocardiogram to see where we are at, pushing open heart surgery out again. Great news! #babydonnajean #heterotaxysyndrome #chd #heartwarrior

Instagram post 2126251419318496210_40343717

Nick and I went through a bunch of wedding photos last night and found this gem. 😆 Nine years later: perhaps a little wiser, but not a lick cooler. 😂
Love you forever @a_madminute
Photo credit: @shelly.blanton

Instagram post 2116990512377201002_40343717

🎶... Bounce bounce bounce, bounce bounce bounce... 🎶 😎💁🏻‍♀️#adulting #keepingitreal #letterboardquotes

Instagram post 2114087154591139876_40343717

Nothing like starting kindergarten with your partner in crime. 😉

Also, for the record, Wyatt was a total pro. Literally didn’t even say goodbye. Lol. 😂🤣 #weewyattgraham

Instagram post 2114083218454746342_40343717

Wyatt’s first day of kindergarten! 📚🍎 It’s worth mentioning that, when putting together this sign, Wyatt specifically told me that it needed to say, “first day OF kindergarten, not just: first day kindergarten... MOMMY.” 🙄😆 Clear goals, assertive and adept at grammar at 6 years old. I love this little boy!

P.s. Where’d my baby go? 😭 #weewyattgraham #myblantonboys

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Instagram post 2217794540816291297_40343717

Yesterday was the one year anniversary of Donna's open heart surgery. To put it simply, I have felt all the feels. ⁠⠀
⁠⠀
The last two months have been a wild ride. At the beginning of November we learned that Donna had not only stopped gaining weight, but was losing weight -- rapidly. She had dropped almost a whole pound since mid September. ⁠⠀
⁠⠀
A slew of tests, procedures and doctor visits ensued. But by the end of the month, she was down yet another pound. My already peanut-sized girl, who was barely pushing the 20th percentile, was plummeting off the charts. I could hear the troubling tone in the doctor's voice the day we left her clinic to embark on more tests, more procedures. The day the word 'NG tube' was mentioned again. One year removed -- to the day -- from the last time we left the hospital with an NG tube.⁠⠀
⁠⠀
It felt impossible not to be scared. It felt impossible to not think that we were headed into surgery again. I had just lived this. Had I not? Again I desperately prayed that I wasn't watching my daughter wither away...⁠⠀
⁠⠀
(Continued in comments)⠀

Instagram post 2194557868184127645_40343717

Santa Claus! 🎅🏻

Instagram post 2176595362903760521_40343717

BABY NUMBER 4 COMING JULY 2020! 😱

Prophecy is not a word that occurs in common conversation. It almost exclusively belongs in the Old Testament, right? But as I look at this little doodle I made shortly after Nick and I were engaged (over 10 years ago) my eyes narrow a bit and head tilts ever so slightly to the side. I feel the hairs on my arms prickle and a tingle run up the back of my spine... Is that not our house? The old farmhouse with the fence out front? The barn to the right with a second drive? The garden planted directly out back? Over looking the field of crops? Surrounded by big old trees?
The likeness is uncanny.

As each of our children were born this little doodle would come to mind. This silly little doodle that somehow stuck around all these years. And as we neared making the decision that we were done growing our family, I again thought of this ridiculous doodle. Why did it challenge me so?

I’m gonna be honest, it’s been a rollercoaster of emotions since we found out baby number four is on the way. But when I look at this drawing? The word that permeates my mind is: prophecy. The Lord reminds me during this time of unknown and uncertainty, that while I don’t know, he does. That while I am uncertain, he is.
And always has been.
I feel immense joy and peace in knowing that this is not just a plan some younger version of myself devised for our family, but that this is God‘s plan for our family. And holy crap FOUR KIDS.

So! Who’s ready to weigh in? Is it going to be a girl or a boy?! My money’s on the prophecy. 😉

Instagram post 2170633246942374155_40343717

A little over a year ago now, I put down the book I was reading. This book.
It’s become symbolic really... Because with it I also somehow put down a host of other things: my mental health, my physical health, my words, my writing, my art and — most importantly— my call to share our story, as it’s happening. Raw and real and unedited. “Good here too.” These are the words that have echoed in my mind, thundered in my heart and the ones I’ve felt on the tip of my tongue for quite some time now. Far before I both picked up and put down this book. “Good here too.” These are the words that grow wilder and stronger with each passing day that I keep them locked inside. Because it’s easier, safer, neater for me to avoid them than attempt to do them justice.
A little over a year ago now, I put down the book I was reading. This book.

But on the day that I picked it back up, as the sun cracked open the morning sky, I read: “I drive out of dark and into morning glory.
I awaken to the strange truth that all new light comes out of the dark places, and hasn’t it always been? Out of darkness, God spoke forth teeming life. That wheat round and ripe across all these fields, they swell as hope embryos of the black earth. Out of the dark, tender life unfurled. Out of my own inner pitch, six human beings emerged, new life, wet and fresh.
All new life labors out of the very bowels of darkness.
That fullest life itself dawns from nothing but Calvary darkness and tomb cave black into the radiance of Easter morning.
Out of the darkness of the cross, the world transfigures into new life. And there is no other way.” (One Thousand Gifts, Ann Voskamp)

Would you believe me if I told you that those words were waiting for me? Tucked easily, safely and neatly alongside the bookmark that sat untouched for hundreds of days. Words just for me. Light I found while in the dark, that spoke straight into me in an absolutely, undeniably, God given way. Truth that enumerates my own “good here too.” That compels me to stand up, clear my throat and breathlessly state another truth that God has placed on my heart for so, so very long: **CONTINUED IN COMMENTS**

Instagram post 2151807410915017276_40343717

She started on the blanket. Would you look at her go?! Cue Google search for: how to get grass stains out of a baby’s sleeper.

This girl... The girl who had her clavicle broken during birth. The girl who has had her chest cracked open to reconstruct her complex heart anatomy. The girl who goes about her day coping with severe mitral valve stenosis — despite having a reconstructed heart. The girl who still faces future reconstructive heart surgeries. The girl who has two left patterned lungs. The girl who has a stomach, colon and liver on the opposite sides of her body. The girl with malrotated intestines. The girl with two spleens, instead of one. Both of which are non-functional.

The girl that suffered congestive heart failure. That stopped gaining weight. That stopped growing. The girl that struggled to breathe. Struggled to eat. The girl that I clutched to my chest in the middle of the night as I heaved silent sobs in a hospital rocking chair. The glow of monitors the only thing illuminating our faces and that night, my soul. The girl that, for the first time, painfully displayed just how sick she really was. Maybe even still is... The girl that has gross motor skill delays. Takes medication multiple times a day. The girl that has a cardiologist, hematologist, immunologist, gastroenterologist, nephrologist and physical therapist. The girl that has a fever protocol. A medical binder. An emergency sheet.

This girl... Would you look at her go?! What would it look like if more of us lived our lives blind to ‘The Things That Hold Us Back’? Would we lose more? Would we fail more? Would we hurt more? Or would we all have more grass stains on the seats of our pants?
Here’s to leaving our blankets of comfort and safety behind us, for the adventure that lies ahead. Here’s to taking notes from the girl who lives blindly to ‘The Things That Hold Her Back’. And here’s to countless more Google searches for: how to get grass stains out of the seat of your pants.

Instagram post 2137203881495330409_40343717

DONNA UPDATE:

Donna's echocardiogram yesterday morning showed that she is stable since her last echo two months ago. There are still increased pressures on the right side of her heart caused by the mild regurgitation and severe stenosis of the mitral valve, but (same as last time) she remains asymptomatic while on Lasix. Dr.Hahn feels good about having her back in THREE months — the longest we’ve ever gone between cardiology visits — for another echocardiogram to see where we are at, pushing open heart surgery out again. Great news! #babydonnajean #heterotaxysyndrome #chd #heartwarrior

Instagram post 2126251419318496210_40343717

Nick and I went through a bunch of wedding photos last night and found this gem. 😆 Nine years later: perhaps a little wiser, but not a lick cooler. 😂
Love you forever @a_madminute
Photo credit: @shelly.blanton

Instagram post 2116990512377201002_40343717

🎶... Bounce bounce bounce, bounce bounce bounce... 🎶 😎💁🏻‍♀️#adulting #keepingitreal #letterboardquotes

Instagram post 2114087154591139876_40343717

Nothing like starting kindergarten with your partner in crime. 😉

Also, for the record, Wyatt was a total pro. Literally didn’t even say goodbye. Lol. 😂🤣 #weewyattgraham

Instagram post 2114083218454746342_40343717

Wyatt’s first day of kindergarten! 📚🍎 It’s worth mentioning that, when putting together this sign, Wyatt specifically told me that it needed to say, “first day OF kindergarten, not just: first day kindergarten... MOMMY.” 🙄😆 Clear goals, assertive and adept at grammar at 6 years old. I love this little boy!

P.s. Where’d my baby go? 😭 #weewyattgraham #myblantonboys

Instagram post 2109140438607640945_40343717

Every coo, every crease, every crinkle. I’ve relished their presence. Adored their existence. Basked in their warmth and glow. And yet, we are here. At the crest of your babyhood. I am a walking cliche. Surely I must reek of its perfume. How are we here already? How are we here so soon? “Take heart, my dear.” This is what you have taught me above all else in your first year of life. To summon courage, to muster strength. To find the light or be it. To love and laugh without abandon. To be both fierce and kind. And when life takes from you a whole heart, you whole heartedly take it back. ❤️ #babydonnajean #chd #heartwarrior #heterotaxysyndrome #becauseheterotaxy #goodheretoo

Instagram post 2108540539369863653_40343717

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