Saturday, March 8, 2014
Friday, November 29, 2013
Dear Ryder
Dear Ryder,
It doesn't seem real that you have been gone a year. I miss you. I miss holding your hand. I miss petting your chubby cheeks. I miss kissing your toes. Your eyes - they always seemed to know everything...I miss them the most. I spend a lot of time thinking about you...I am so very afraid I will forget something. If I had to pick my favorite moment - there was one particular time I walked up to your room - it was nighttime and you were in your bouncy chair - it was quiet, most of the lights were off and there was just a computer screen and I think the end of Baby Einstein's lullaby playing in the background. All of your IVs were stretched as far as they could go, around the crib so that you could face the doorway. You should have been asleep, but you were wide awake. I smiled at you, and it took you a second, but then you recognized me and you grinned back. You were waiting for me.
I spent one Sunday with the monitor cords and your picc line IVs stretched all the way across the room so I could keep you on the couch by the window. I covered all the wires up with blankets and you just looked like a healthy little bundle that didn't belong in the ICU. The sun was out - you weren't used to that kind of light so you had to keep squinting your eyes, and then you fell asleep. I watched you sleep for a long time. It was perfect.
Once, I was holding you up against my chest, and you were wearing just your diaper. You weren't strong enough to hold your head upright so I had my hand on the back of your neck to steady you and you rested your chin on my shoulder. You were trying so hard to look up and over - like you knew that there was something great to see if you could just get that little head up a little higher - you worked so hard my sweet boy. You never gave up.
I was hoping by now I would have more answers. Mostly, why couldn't we have you here just a little longer? But I don't know, and I won't. A little longer would never have been enough time anyway. I hope you know that we would have slept in that ICU next to you forever if we just had the chance to have even 1 more hour. I think about what you are doing all the time, but I don't know, are you still 9 months and 2 days old? Or will you turn 2 in February? For some reason I believe that you will grow to be 4 or 5, then stop, but I'm not sure why I believe that...Addy is very confident you have a crib in heaven and that she will one day have a bed beside it with me then your daddy on the other side. Is she right? I am confident I will know you when I see you again, but I am not sure how. Will you have those same beautiful blue eyes? Will you be waiting for me then, too?
I hope you know that we are so sorry for all the pain you experienced while you were here; we are sorry for any moment you felt cold, or hungry, or alone. I hope you know that we wanted to give you everything we could and if given the chance, we would only try to give you more. We desperately wanted to keep you as long as we could but we wanted you to know happiness, too. You will always be our warrior. We knew you were God's perfect gift and we are so thankful that you got to be ours. I loved every moment with you. I felt so blessed every time you took a breath, so blessed every time I watched a heart beat on the monitor. I have never felt so sure of my purpose here, than I felt being your mommy. I will always pray that you are warm, that you are happy and that you feel nothing but love. You will forever be on my heart, love, and I will be patiently waiting for the day I will hold you again.
I love you, all the time,
Mommy
It doesn't seem real that you have been gone a year. I miss you. I miss holding your hand. I miss petting your chubby cheeks. I miss kissing your toes. Your eyes - they always seemed to know everything...I miss them the most. I spend a lot of time thinking about you...I am so very afraid I will forget something. If I had to pick my favorite moment - there was one particular time I walked up to your room - it was nighttime and you were in your bouncy chair - it was quiet, most of the lights were off and there was just a computer screen and I think the end of Baby Einstein's lullaby playing in the background. All of your IVs were stretched as far as they could go, around the crib so that you could face the doorway. You should have been asleep, but you were wide awake. I smiled at you, and it took you a second, but then you recognized me and you grinned back. You were waiting for me.
I spent one Sunday with the monitor cords and your picc line IVs stretched all the way across the room so I could keep you on the couch by the window. I covered all the wires up with blankets and you just looked like a healthy little bundle that didn't belong in the ICU. The sun was out - you weren't used to that kind of light so you had to keep squinting your eyes, and then you fell asleep. I watched you sleep for a long time. It was perfect.
Once, I was holding you up against my chest, and you were wearing just your diaper. You weren't strong enough to hold your head upright so I had my hand on the back of your neck to steady you and you rested your chin on my shoulder. You were trying so hard to look up and over - like you knew that there was something great to see if you could just get that little head up a little higher - you worked so hard my sweet boy. You never gave up.
I was hoping by now I would have more answers. Mostly, why couldn't we have you here just a little longer? But I don't know, and I won't. A little longer would never have been enough time anyway. I hope you know that we would have slept in that ICU next to you forever if we just had the chance to have even 1 more hour. I think about what you are doing all the time, but I don't know, are you still 9 months and 2 days old? Or will you turn 2 in February? For some reason I believe that you will grow to be 4 or 5, then stop, but I'm not sure why I believe that...Addy is very confident you have a crib in heaven and that she will one day have a bed beside it with me then your daddy on the other side. Is she right? I am confident I will know you when I see you again, but I am not sure how. Will you have those same beautiful blue eyes? Will you be waiting for me then, too?
I hope you know that we are so sorry for all the pain you experienced while you were here; we are sorry for any moment you felt cold, or hungry, or alone. I hope you know that we wanted to give you everything we could and if given the chance, we would only try to give you more. We desperately wanted to keep you as long as we could but we wanted you to know happiness, too. You will always be our warrior. We knew you were God's perfect gift and we are so thankful that you got to be ours. I loved every moment with you. I felt so blessed every time you took a breath, so blessed every time I watched a heart beat on the monitor. I have never felt so sure of my purpose here, than I felt being your mommy. I will always pray that you are warm, that you are happy and that you feel nothing but love. You will forever be on my heart, love, and I will be patiently waiting for the day I will hold you again.
I love you, all the time,
Mommy
Saturday, October 5, 2013
A Celebration of Life
It is so incredibly foreign to write something on here. I am trying to figure out if I can compare it to something, but I'm not sure how best to describe it...it's not quite the same as a journal, I suppose it shouldn't be difficult to talk to yourself if you at one point did that regularly. The more I think about it, though, that is probably the exact reason this feels so awkward. I don't know what to say to myself. I started this blog for Ryder thinking that if there were bad days (as their most certainly would be) I wouldn't be able to repeatedly describe a setback to anyone and this would be any easy way to opt out of that. As time went on I spent a lot of time writing to convince the small part of myself that remained sad, afraid and very lost that it would all turn out perfectly if we never lost hope. And this helped. We never did lose hope in our little warrior.
I suppose then you have to ask, what does turn out perfectly even mean? I get very caught up on the loss - how can anything be "perfect" if a life is lost, if you have to give up so much? Our baby is gone. I can't think of words to describe the disappointment of asking, praying, begging, pleading for a miracle and not getting it. Especially when you can't understand why. But I focus mostly on what I was asking for last November. I wanted to bring my Ryder home for Christmas. But that doesn't make sense to dwell on either, since that was at least the thousandth miracle I asked for. I got nine months and 2 days full of miracles. What I think I have realized more recently is that what I really wanted was for it to turn out perfectly for me. Ryder's life was beautiful, and when his life ended, he became completely perfect - free of sorrow, free of tears, free of pain and his little heart has been made new.
We celebrated Ryder's life along with many other sweet lives that ended at Children's Mercy a few weeks ago...it was a nice ceremony and I am very glad we went but truthfully it was just as awful as you can imagine it would be. It was a group funeral of sorts. Grief is heavy and confusing because it is usually mixed with varying degrees of thankfulness, anger, pain, sadness, guilt, etc. so you can only imagine putting immeasurable amounts of that all of that in one room. There is no room big enough to hold that which very much made it feel humid in said room and very much like the ceiling would cave in, the oxygen would run out and we would all suffocate. But then we went outside and released hundreds of butterflies...amazing.
I suppose then you have to ask, what does turn out perfectly even mean? I get very caught up on the loss - how can anything be "perfect" if a life is lost, if you have to give up so much? Our baby is gone. I can't think of words to describe the disappointment of asking, praying, begging, pleading for a miracle and not getting it. Especially when you can't understand why. But I focus mostly on what I was asking for last November. I wanted to bring my Ryder home for Christmas. But that doesn't make sense to dwell on either, since that was at least the thousandth miracle I asked for. I got nine months and 2 days full of miracles. What I think I have realized more recently is that what I really wanted was for it to turn out perfectly for me. Ryder's life was beautiful, and when his life ended, he became completely perfect - free of sorrow, free of tears, free of pain and his little heart has been made new.
We celebrated Ryder's life along with many other sweet lives that ended at Children's Mercy a few weeks ago...it was a nice ceremony and I am very glad we went but truthfully it was just as awful as you can imagine it would be. It was a group funeral of sorts. Grief is heavy and confusing because it is usually mixed with varying degrees of thankfulness, anger, pain, sadness, guilt, etc. so you can only imagine putting immeasurable amounts of that all of that in one room. There is no room big enough to hold that which very much made it feel humid in said room and very much like the ceiling would cave in, the oxygen would run out and we would all suffocate. But then we went outside and released hundreds of butterflies...amazing.
And last, but not least, this February we are so excited to celebrate another new little life...a little boy who is already very loved. It breaks my heart to think he will never meet his brother (here on Earth) because I automatically picture all three of our babies being here at home with us, but I know he will carry Ryder's heart with him, forever. Do you see the perfect butterfly shape of that little heart? If only ultrasound showed color, I suspect it would show up yellow...
Saturday, August 3, 2013
The Quilt
It is still so heartbreaking to open up this page and not have an update to give you on Ryder. Even when it wasn't necessarily all good news, it was news nonetheless. He was here, he was active, dynamic, and always amazing...and even when the now wasn't perfect, it was hopeful. And all those not-so-perfect moments - those were all OUR moments. They were our gifts. So we will just start there - the update. Our little warrior would be 18 months old at the end of this month. I of course can't be sure of anything, but I do believe that he is toddling around, laughing and playing, just not down here with us. I think about what he is doing all the time, but I also take him with me everywhere I go. He was at the zoo today. I didn't see the yellow butterfly again - today only an orange one, but I could picture him perfectly running away from me giggling while we were trying to get on the tram and could almost feel him squirming in my lap trying to get free...
Addy, now she just won't stop getting bigger. She is playing soccer this summer and starts back to pre-K and dance class at the end of the month. She is full of surprises, songs and is just a spark of pure joy. I hope she never loses the mindset that the world is full of 2 kinds of people, her friends, and those she has not met yet, who represent future friends.
If you were wondering if I have seen any yellow butterflies fluttering about...absolutely yes, but not often, and never if I am searching to find one. The butterfly house in St. Louis for example - not a single yellow butterfly. But the afternoon before mother's day on my deck he did come to visit...
Most importantly for tonight, the quilt.
The day we brought our Ryder to the Park with all the Flowers, I gave a bag of treasures - Ryder's clothes, to my friend Jill...who delivered them to a group of amazing ladies, the Scott County Homemaker's Extension Association Quilter's Unit...who had volunteered to turn these tangible bits of my sweet boy into a quilt. They worked countless hours on this project and the attention to detail is truly incredible - carefully moving small embroidered animals from pajamas to the center of small square of coordinating fabric and re-stitching them, folding and pressing the tiniest of the onsies and adhering them to their own squares to fit aside the bigger clothes, incorporating bits of every little outfit I sent. The final product is beautiful, painfully beautiful in fact. It is perfect, and while I'd like to promise these ladies I will protect their work of art properly hung up, displayed or packaged, I am afraid that I won't be able to stop myself from loving it until the edges are frayed.
I don't know how to say thank you enough to Jill and this wonderful group of ladies. I am trying so hard not to cry on this lovely quilt and am failing miserably. And if this gift isn't touching enough, the second bag...the bag with every tiny remaining remnant of cloth saved for me, not even one thread or snap thrown out...and folded into the bottom of that bag...dated printouts from this very blog that they searched out and read to know the significance of the yellow butterfly that they then carefully stitched to the quilt's back corner....
Addy, now she just won't stop getting bigger. She is playing soccer this summer and starts back to pre-K and dance class at the end of the month. She is full of surprises, songs and is just a spark of pure joy. I hope she never loses the mindset that the world is full of 2 kinds of people, her friends, and those she has not met yet, who represent future friends.
If you were wondering if I have seen any yellow butterflies fluttering about...absolutely yes, but not often, and never if I am searching to find one. The butterfly house in St. Louis for example - not a single yellow butterfly. But the afternoon before mother's day on my deck he did come to visit...
Most importantly for tonight, the quilt.
The day we brought our Ryder to the Park with all the Flowers, I gave a bag of treasures - Ryder's clothes, to my friend Jill...who delivered them to a group of amazing ladies, the Scott County Homemaker's Extension Association Quilter's Unit...who had volunteered to turn these tangible bits of my sweet boy into a quilt. They worked countless hours on this project and the attention to detail is truly incredible - carefully moving small embroidered animals from pajamas to the center of small square of coordinating fabric and re-stitching them, folding and pressing the tiniest of the onsies and adhering them to their own squares to fit aside the bigger clothes, incorporating bits of every little outfit I sent. The final product is beautiful, painfully beautiful in fact. It is perfect, and while I'd like to promise these ladies I will protect their work of art properly hung up, displayed or packaged, I am afraid that I won't be able to stop myself from loving it until the edges are frayed.
I don't know how to say thank you enough to Jill and this wonderful group of ladies. I am trying so hard not to cry on this lovely quilt and am failing miserably. And if this gift isn't touching enough, the second bag...the bag with every tiny remaining remnant of cloth saved for me, not even one thread or snap thrown out...and folded into the bottom of that bag...dated printouts from this very blog that they searched out and read to know the significance of the yellow butterfly that they then carefully stitched to the quilt's back corner....
Tuesday, April 16, 2013
2013 AHA Kansas City Heart Walk
Saturday, May 18th we will be walking in the 2013 AHA Kansas City Heart Walk in memory of our forever heart warrior...
If you are free and not already on a team, we would love for you to join us! Just click on the link below, then "Join Our Team." It is a great opportunity for a fun family walk and I am sure I will be able to come up with something for a team Tshirt...
If you can't walk but want to make a donation to the AHA, that is great too! Every dollar counts.
http://heartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1033009&lis=0&kntae1033009=DCA2D4B0CB644EFC813532A6C84AE6B6&supId=0&team=5493045&cj=Y
Really delayed update: As promised, we finished all 3 miles of the heart walk. Well almost - Addy finished most of that walk on daddy's shoulders :) Thanks to very generous donations from family, friends, & coworkers we raised a grand total of $2,862.00! We will try to have a little more energy and top that next year but not too shabby I think.
If you are free and not already on a team, we would love for you to join us! Just click on the link below, then "Join Our Team." It is a great opportunity for a fun family walk and I am sure I will be able to come up with something for a team Tshirt...
If you can't walk but want to make a donation to the AHA, that is great too! Every dollar counts.
http://heartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1033009&lis=0&kntae1033009=DCA2D4B0CB644EFC813532A6C84AE6B6&supId=0&team=5493045&cj=Y
Really delayed update: As promised, we finished all 3 miles of the heart walk. Well almost - Addy finished most of that walk on daddy's shoulders :) Thanks to very generous donations from family, friends, & coworkers we raised a grand total of $2,862.00! We will try to have a little more energy and top that next year but not too shabby I think.
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| Always on our hearts. |
Saturday, March 9, 2013
The laundry
Sitting at Starbucks...just dropped off Addy at her friend Claire's birthday party. I can't believe she is big enough to go to a friend's house for her birthday--but I suppose Claire will have more fun playing with friends who don't have any mommy legs to hang on to. It is incredible to think about how many little moments go by like that when you aren't ready for them.
We had Ryder's birthday party as planned on February 28th. It actually felt so comfortable to walk in those doors again, like coming home after you've been away on a long trip. It had been just shy of 3 months but it was like I just walked down that hall last the day before. It is really odd the tricks your heart can play on you...I think the last second before I looked over at Ryder's old room I was sure that I would see his giraffe velcroed to the crib and I would realize this was all a really long dream. More miraculous things have happened, right?
It was great to see all of our "extended family" again and Addy had a blast. It took her about 8 seconds to warm up and then she danced for everyone, gave out a lot of hugs, and proudly announced she was going to be a nurse when she grew up...and a princess. Girl has goals. She didn't forget when she left to ask for a sticker at the desk, like she's done a hundred times before...
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There will always be things, and more importantly people, that it is impossible not to cling to when they are gone. Initially there is a lot of things that represent the people that you can hold on to - pictures and movies, that's a given. Clothes. Toys. How can you ever imagine you will treat a $3 plastic ball like it's gold, and then cringe when it's played with. Then you start hanging the toys on your Christmas tree and pack them away as if they were made of crystal. Chapstick. The tangerine kind, but one is not enough, because what if you can't find more when it runs out? So you buy $50 worth of it at Whole Foods. That is a lot of chapstick. And, of course, the laundry. Ross took out anything with baby poop on it and washed it right away - I'm not sure if he actually predicted the potential issues with poop laundry or if he was just being practical...but as of last week I have managed to snuggle any remaining Ryder scent out of everything else. The only thing left in the laundry bag now is a pair of socks. They are the ones he was wearing in the last picture Ross took of him kicking his toys hanging above his crib late on November 29th. I don't know what to do with those socks yet but for now, they stay in the bag...and now I will have to sleep with Ryder's teddy bear instead.
We had Ryder's birthday party as planned on February 28th. It actually felt so comfortable to walk in those doors again, like coming home after you've been away on a long trip. It had been just shy of 3 months but it was like I just walked down that hall last the day before. It is really odd the tricks your heart can play on you...I think the last second before I looked over at Ryder's old room I was sure that I would see his giraffe velcroed to the crib and I would realize this was all a really long dream. More miraculous things have happened, right?
It was great to see all of our "extended family" again and Addy had a blast. It took her about 8 seconds to warm up and then she danced for everyone, gave out a lot of hugs, and proudly announced she was going to be a nurse when she grew up...and a princess. Girl has goals. She didn't forget when she left to ask for a sticker at the desk, like she's done a hundred times before...
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| Raffie O'Newman |
Wednesday, February 27, 2013
First Birthdays.
Tomorrow Ryder would have celebrated his first birthday. Just looking at those two words- first birthday- breaks my heart. I imagine that every time from now on that I see a first birthday picture - the one with the cake smeared all over the sweet little face -I will have this same broken heart. Ryder's cake would have been ridiculous. 3 tiers...covered in giraffe spots with a big ONE on top. He would have loved it - I can picture his face just as if he were sitting across from me right now. Big (confused) eyes - wondering why everyone was looking at him and laughing. He would have had a few more months of physical therapy and I'm sure sitting up by himself. He is a Newman, so he would have no problem actually eating the cake. I would have probably tried to have a petting zoo delivered to our house for his birthday. Ross would have shut me down (gently), explaining that you just can't have a petting zoo in February. I may have gotten Ryder a bunny instead...or maybe just a pony.
Tomorrow we are still celebrating Ryder's birthday. But, not quite the way I planned every time he had a good day. Addy has school, Ross and I have clinic. Then after dinner, we are having birthday cake & ice cream at the only place we could possibly imagine celebrating Ryder - in the PICU. It will be really hard going back there. I won't be able to stop myself from looking over at his room. All of his rooms, but particularly his last room, the one where I gave him his last kiss, sang him his last lullabye and handed him over, literally and figuratively. I hope that the memory of his peaceful little face will be burned in my mind forever. I would give anything just to feel his weight again...a perfect little gift, all wrapped up, sleeping peacefully. For the first time in his 9 months and 2 days he was without any cords or wires tying him down to this Earth. He had the most wise deep blue eyes; I think he knew the whole time, he just couldn't tell me...It will be hard, but we can do hard things, and Ryder certainly deserves our best. I have no doubt he will be watching.
So what gift do you give for a first birthday such as this? Sometimes, there are no words, only photographs - so that is what we are giving with the help of Christy from Happy Chick Photography...
And thank you again to everyone who has already given a gift for other little heart warriors in memory of our Ryder - to the AHA, Congenital Heart Disease Families Assoc. and to Little Hearts - the Little Hearts donation list is pretty amazing, isn't it? Plus- your cash and checks we sent in later! Plus- Ryder's donation to the KC Zoo! You are all incredible.
RYDER JAMES NEWMAN
James & Nancy Allen
Vicki Lynn Altman
Joseph Bayer Jr.
Jennifer Boyd
Jilian Bueltmann
Kevin Burgert
Brian Burghardt
Lori Chenot
Denise Bratcher Cochran
Dept of Internal Medicine, University of Kansas
City Medical Center
Tim & Leslie Duesenberg
Leigh Eck
Albert Eid
Pamela Emert
JDuesenberg Financial
Jan & Jerry Ford
Kathryn L. Fuger
Sara Gardner
Marcie Goeden
Lori Falcone Gritter
Julie Heisinger
Richard & Regna Heisinger
Joshua Herigon
Aletha Hinthorn
Amber Hoffman
Mary Anne Jackson
Nancy Janssen
Matthew Johnson
Jane Knapp
Corey Koch
Molly K. Krager
Charles & Hillary Lawrence
Emmy Leone
Michael Luchi
Daryl Lynch
Heather Male
Keith Mann
Dwayne Martin
Kristin McIntyre
Melissa Miller
Emily Montgomery
Heather R. Moss
Jason Newland
Michael & Diane Newman
Amy J. Nopper
Barbara Pahud
Frank & Marcee Palazzo
Priyal Patel
Pediatric Associates Kansas City
Mr. & Mrs. Peterson
Elizabeth Pitts
Chris & Micholee Polsak
Barbara Pribil
Ben Raines
Roy & Judy Raines
Krishna Rangaranjan
Jessica & Adam Rich
Joan B. Schmitt
Tessa Singer
Judith Spear
Steven Stites
William Swinea
Ken & Celeste Tarantino
John & Janet Taylor
The Children's Mercy Hospital CCE
The Children's Mercy Hospital
The Children's Mercy Hospitalists
The Children's Mercy Nurses - Jacqui,
Kristina & Shea
The Children's Mercy Hospital, The Physicians
of Emergency Medicine
Alison Hannon Troutwine
Betty & Quentin Wade
Kimberly & Mark Whittlesey
Kenneth L. Wible
Kristi Williams
Addy celebrated baby Bitty's first birthday today and all her baby guests had carrots, taquitos (??)bread slices and cupcakes. Then "Mommy, when we have a piece of Ryder's birthday cake tomorrow, he's going to be eating some too in Heaven!" Their amazing little minds...and yes, I am sure the icing will be sweeter...
Thank you for loving our Ryder as we love him, every minute, all the time.
Tomorrow we are still celebrating Ryder's birthday. But, not quite the way I planned every time he had a good day. Addy has school, Ross and I have clinic. Then after dinner, we are having birthday cake & ice cream at the only place we could possibly imagine celebrating Ryder - in the PICU. It will be really hard going back there. I won't be able to stop myself from looking over at his room. All of his rooms, but particularly his last room, the one where I gave him his last kiss, sang him his last lullabye and handed him over, literally and figuratively. I hope that the memory of his peaceful little face will be burned in my mind forever. I would give anything just to feel his weight again...a perfect little gift, all wrapped up, sleeping peacefully. For the first time in his 9 months and 2 days he was without any cords or wires tying him down to this Earth. He had the most wise deep blue eyes; I think he knew the whole time, he just couldn't tell me...It will be hard, but we can do hard things, and Ryder certainly deserves our best. I have no doubt he will be watching.
So what gift do you give for a first birthday such as this? Sometimes, there are no words, only photographs - so that is what we are giving with the help of Christy from Happy Chick Photography...
RYDER JAMES NEWMAN
James & Nancy Allen
Vicki Lynn Altman
Joseph Bayer Jr.
Jennifer Boyd
Jilian Bueltmann
Kevin Burgert
Brian Burghardt
Lori Chenot
Denise Bratcher Cochran
Dept of Internal Medicine, University of Kansas
City Medical Center
Tim & Leslie Duesenberg
Leigh Eck
Albert Eid
Pamela Emert
JDuesenberg Financial
Jan & Jerry Ford
Kathryn L. Fuger
Sara Gardner
Marcie Goeden
Lori Falcone Gritter
Julie Heisinger
Richard & Regna Heisinger
Joshua Herigon
Aletha Hinthorn
Amber Hoffman
Mary Anne Jackson
Nancy Janssen
Matthew Johnson
Jane Knapp
Corey Koch
Molly K. Krager
Charles & Hillary Lawrence
Emmy Leone
Michael Luchi
Daryl Lynch
Heather Male
Keith Mann
Dwayne Martin
Kristin McIntyre
Melissa Miller
Emily Montgomery
Heather R. Moss
Jason Newland
Michael & Diane Newman
Amy J. Nopper
Barbara Pahud
Frank & Marcee Palazzo
Priyal Patel
Pediatric Associates Kansas City
Mr. & Mrs. Peterson
Elizabeth Pitts
Chris & Micholee Polsak
Barbara Pribil
Ben Raines
Roy & Judy Raines
Krishna Rangaranjan
Jessica & Adam Rich
Joan B. Schmitt
Tessa Singer
Judith Spear
Steven Stites
William Swinea
Ken & Celeste Tarantino
John & Janet Taylor
The Children's Mercy Hospital CCE
The Children's Mercy Hospital
The Children's Mercy Hospitalists
The Children's Mercy Nurses - Jacqui,
Kristina & Shea
The Children's Mercy Hospital, The Physicians
of Emergency Medicine
Alison Hannon Troutwine
Betty & Quentin Wade
Kimberly & Mark Whittlesey
Kenneth L. Wible
Kristi Williams
Addy celebrated baby Bitty's first birthday today and all her baby guests had carrots, taquitos (??)bread slices and cupcakes. Then "Mommy, when we have a piece of Ryder's birthday cake tomorrow, he's going to be eating some too in Heaven!" Their amazing little minds...and yes, I am sure the icing will be sweeter...
Thank you for loving our Ryder as we love him, every minute, all the time.
Monday, February 18, 2013
All the time.
Valentine's Day 2013 has come and gone...what a hard day to celebrate love...though I do so love my Addy and my Ross...and we really should be celebrating love all the time.
I can't believe it's been almost 3 months, but then again it seems like tonight should just be my night at the hospital again. I would kiss Addy goodnight and Ross goodbye. My computer would be there already, with my pillow and down throw - I would get a spot at the top of the ramp, hopefully (or I would forget where I parked again...I forgot where I parked all the time), I would stop at the floor 2 PICU desk and sign again for the bazillionth time and rush all the way through the old unit...then the new one, and then there he would be waiting for me. I never stopped being nervous during that walk until I could see his vitals again on the monitor...Baby Einstein would be playing Baby Da Vinci, the chest tube would be stretched across his crib with his silver beads and his ball hanging from it next to his left hand and hopefully he would smile at me when I said hi buddy and kissed his cheek. He would shake those beads with all his might. Hmm, what would we do tonight? I would change his diaper, wipe him down with his chlohexadine wipes (the ICU bath) and then put Sween cream on his little cheeks and tangerine chapstick on those little lips and I would wait for him to lick it off. That was my favorite. We would read some books and talk, and bat at some toys, and give kisses to all those toes, and when he fell asleep I would turn off the TV and lights and pet his head until I was too tired to stand next to him. Sweet little head...but maybe he would have his ETT out again? Be on the floor? I can't even think about the possibility that he could have been at home with us by now...I used to think about that all the time...
It is good to keep busy. When I am busy I don't spend as much time on the whys or what ifs...Addy however, has a very busy mind. Her little mind blows my mind..."all the time" as she would say. I'll throw some questions and comments out there for the abyss, and if the abyss has answers, please let me know...I try to give her answers but mostly I don't have any...
Mommy, why did Ryder have to go to Heaven? Why don't the other babies have to go to Heaven?
Mommy, how did Ryder get to Heaven, did he fly there? Did Jesus bring him there in his car seat?
Did you see Jesus take Ryder to Heaven?
Why was Ryder sick, Mommy?
Is Ryder going to grow up in Heaven?
Mommy, do we sleep in Heaven? I am going to have my bed next to Ryder's crib...and next to Mommy and Daddy and everybody.
Mommy, what do we eat in Heaven? Can I bring my Bitty there?
Mommy, why hasn't Jesus sent us any pictures on your phone of Ryder? Can I call him? When is he bringing him back?
Daddy, can we take Kiko's airplane over the clouds to visit Ryder? Why not?
Mommy, am I going to go to Heaven tomorrow-day? I don't want you to go there before me. Or Daddy. I don't want you to leave me.
I don't want to live in a new house ever, I want to just go live in Heaven with Ryder.
Can Ryder hear me when I talk to him? Can he see me in my room? In my bath? At my school?
Addy hasn't asked about the little white box in the front of the church yet. I am so thankful for that.
She loves her brother so much - such a good big sister. Now he gets to watch over her...all the time.
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| Love. |
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| Forever. |
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| All the time. |
Monday, February 4, 2013
Sunshine
Love...is the sun.
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| How adorable is this girl (and this guy) basking in the sunshine? |
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| Ok just one more...wait for it...butt ruffles... |
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| Addy enjoying a rare bit of winter sun with Ryder's polar bear (just to her left) |
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| Would you believe the sun came out right when we put these flowers in Ryder's vase? Raffie is loving it. |
Sunday, January 27, 2013
Waves
Tomorrow Ryder would have been 11 months old. 11 months.
Grief is something difficult to understand unless you are drowning in it. I have been reading grief books, books about loss, all written by people who lost a child. For the most part these books are just awful, really. I am not really sure why I am reading them; maybe because I feel so much pain sometimes I want someone to tell me it will be better. Or maybe sometimes I feel numb and want someone to tell me something I should be feeling. Probably the real reason, though, is that sometimes I catch myself being completely happy; and when I realize this I am overwhelmed with guilt and this hurts almost as much as the sadness, which prompts the sadness to take over once again.
Grief is like standing in the ocean. It comes only in the form of waves. Suddenly everything seems still, quiet, and then you get a rush...but it isn't sorrow...it's joy. Addy is my joy, when she laughs, when she sings to her babies, when she stumbles into my bed in the morning and says "I need to snuggle wif you." But just as quickly as that joy hits you and you bask in the thankfullness of your blessings and you have time to feel the sun warm your face, the wave goes back out to sea...and you stand alone again. Slowly you feel the joy slip away, and as you watch it retreat into the distance, and you feel empty again; you realize what you have lost. Even though you should expect this feeling, you never really know when it will come. I drove to work a few weeks ago maybe, and at a red light I stopped and looked over at a patch of grass, I wasn't thinking of anything really...but I saw Ryder sitting there! He looked at me and grabbed a handful of grass and examined it...and then put it in his mouth...and I cried the rest of the way to work. Why would a patch of grass do that? Ryder never even touched grass. In the beginning it isn't hard to deal with these waves because they are unexpected and nobody really expects you to deal with anything really...the difficult part is as time passes...when you know that the waves will keep coming and going. The loss isn't once or twice, it's over and over and over. It's forever. Every time you feel the wave of joy you know that what will come next is the pain. That knowing is hard, and nobody can really tell you if or when it gets better. You can only pray that it will.
It seems intuitive, but what I never really spent any time considering is what a parent actually mourns when a child dies. If your child is very young, a baby, or even a miscarriage, you mourn potential, the "future" or at least what your mind already created for you as dreams and expectations of this child. As the child gets older you mourn the loss of things that existed, their personality, their talents and traits, their physical presence. I sit in Ryder's bedroom sometimes and think about all the hopes I had for our life with him, but I cannot even imagine the pain of feeling his presence here in our house. I am sorry for Ross as he has to drive to Ryder's "home" to work everyday, and then leave without seeing him. I have been back there only once. The day after Ryder died. I sat for hours in the lobby. Thankfully, I couldn't wander up to the PICU again, since Ross had cut my security band off me the night before. It is so odd to think about - being back and forth to someplace soooo many times, for so long, for 9 months and 2 days, sleeping there every other night on the couch even...and then this place and all the people there are suddenly gone from your life too. It has been hard to convince myself Ryder isn't there. It's hard to convince myself that he isn't at Floral Hills either...he isn't cold and he isn't wearing his Christmas pajamas in a white box.
We went to Mexico the day after Christmas...it was a last minute trip to get away, just the 3 of us...VERY far away. It felt strange to say the least - I had not left Kansas City in over a year...and leaving the country, for that matter going anywhere more that a 10 min drive from a Children's Hospital was something that we had assumed we would never be doing again as a family. Of course, as soon as the plane took off I felt so guilty, so sorry, but I honestly would have given anything to be petting my little warrior's head, singing him a song, and sleeping across from him on that plastic couch just one more time. But, he was there with us...he sent sunrises and sunsets, and an amazing moon...
And it was really reassuring to stand in the actual ocean, to feel the cold of waves but also the warm of the sun. It was good to be together...and also to feel that we were not alone.
I miss you buddy...so much.
Grief is something difficult to understand unless you are drowning in it. I have been reading grief books, books about loss, all written by people who lost a child. For the most part these books are just awful, really. I am not really sure why I am reading them; maybe because I feel so much pain sometimes I want someone to tell me it will be better. Or maybe sometimes I feel numb and want someone to tell me something I should be feeling. Probably the real reason, though, is that sometimes I catch myself being completely happy; and when I realize this I am overwhelmed with guilt and this hurts almost as much as the sadness, which prompts the sadness to take over once again.
Grief is like standing in the ocean. It comes only in the form of waves. Suddenly everything seems still, quiet, and then you get a rush...but it isn't sorrow...it's joy. Addy is my joy, when she laughs, when she sings to her babies, when she stumbles into my bed in the morning and says "I need to snuggle wif you." But just as quickly as that joy hits you and you bask in the thankfullness of your blessings and you have time to feel the sun warm your face, the wave goes back out to sea...and you stand alone again. Slowly you feel the joy slip away, and as you watch it retreat into the distance, and you feel empty again; you realize what you have lost. Even though you should expect this feeling, you never really know when it will come. I drove to work a few weeks ago maybe, and at a red light I stopped and looked over at a patch of grass, I wasn't thinking of anything really...but I saw Ryder sitting there! He looked at me and grabbed a handful of grass and examined it...and then put it in his mouth...and I cried the rest of the way to work. Why would a patch of grass do that? Ryder never even touched grass. In the beginning it isn't hard to deal with these waves because they are unexpected and nobody really expects you to deal with anything really...the difficult part is as time passes...when you know that the waves will keep coming and going. The loss isn't once or twice, it's over and over and over. It's forever. Every time you feel the wave of joy you know that what will come next is the pain. That knowing is hard, and nobody can really tell you if or when it gets better. You can only pray that it will.
It seems intuitive, but what I never really spent any time considering is what a parent actually mourns when a child dies. If your child is very young, a baby, or even a miscarriage, you mourn potential, the "future" or at least what your mind already created for you as dreams and expectations of this child. As the child gets older you mourn the loss of things that existed, their personality, their talents and traits, their physical presence. I sit in Ryder's bedroom sometimes and think about all the hopes I had for our life with him, but I cannot even imagine the pain of feeling his presence here in our house. I am sorry for Ross as he has to drive to Ryder's "home" to work everyday, and then leave without seeing him. I have been back there only once. The day after Ryder died. I sat for hours in the lobby. Thankfully, I couldn't wander up to the PICU again, since Ross had cut my security band off me the night before. It is so odd to think about - being back and forth to someplace soooo many times, for so long, for 9 months and 2 days, sleeping there every other night on the couch even...and then this place and all the people there are suddenly gone from your life too. It has been hard to convince myself Ryder isn't there. It's hard to convince myself that he isn't at Floral Hills either...he isn't cold and he isn't wearing his Christmas pajamas in a white box.
We went to Mexico the day after Christmas...it was a last minute trip to get away, just the 3 of us...VERY far away. It felt strange to say the least - I had not left Kansas City in over a year...and leaving the country, for that matter going anywhere more that a 10 min drive from a Children's Hospital was something that we had assumed we would never be doing again as a family. Of course, as soon as the plane took off I felt so guilty, so sorry, but I honestly would have given anything to be petting my little warrior's head, singing him a song, and sleeping across from him on that plastic couch just one more time. But, he was there with us...he sent sunrises and sunsets, and an amazing moon...
I miss you buddy...so much.
Friday, January 18, 2013
Monday, January 7, 2013
The Park With All The Flowers
We have spent a lot of time lately at the Park...the park with all the flowers as Addy calls it. She hasn't asked yet why this park has no swings or slides but she seems content that we are going there to visit Ryder's Christmas Tree. We hope he would like it - very shiny, draped with his favorite silver beads (a replica, that is, hopefully he doesn't mind I have hoarded the real ones). His tree is guarded by 3 little soliders, one for Addy, one for Ross and one for me. They take their post seriously, we only caught one lying down on the job, but I think the snow was a bit much for him - he is back on his feet now. I have told myself a thousand times that Ryder isn't actually there in that park, but I'd like to believe he is watching us stand there, listening to us talk to him, and that he likes looking at that shiny tree. His little tree sits close to the road that winds around the "park" but not too far off the actual road where there is always a quiet hum as cars drive by. From his spot you can see beautiful sunsets, and the sunrises aren't too bad either. There are no big scary tombstones, only markers with vases and flowers, or I suppose anything else you can fashion that will stick in one of those vases to amuse an angel baby...
Standing there in that park is always sad, but I am thankful that most of the time the sadness also comes with a quiet bit of peace. It helps that it's winter now as I can be reminded that while we stand there in the cold, alone, in that park, he is warm. He is never alone. He can never again be poked, prodded, cut, ECHO'ed or cathed. He is loved 24-7, a task that we attempted down here but isn't humanly possible. We had to sleep sometimes. Ryder preferred to be up at 3am watching the hall and doing his best to make noise to beckon anyone he could find to join him at his bedside...and how could you resist those beautiful blue eyes, that perfect grin...
We are doing ok. There are bad days, and there will continue to be bad days for a long time, forever I suspect, but we still have hope and that is all that really matters. I feel very lost sometimes, and I know that is normal but with time we will figure out what we are supposed to do next. For now, I just have to go to work and come home to play afterwards, and that is enough. What will never fail to give me hope is knowing that there is a plan. I don't have to understand this plan but it is already made, so I don't have to worry about that at least. "For I know the plans I have for you...plans to prosper you
and not to harm you, plans to give you hope and a future." Jeremiah 29:11. Maybe you doubt that, but losing our Ryder, this past year, this life is not random. Maybe it seems random that Ross happened to end up in Missouri for medical school the same year as I did, or that we ended up married, or that we moved to Phoenix but then decided to move to Kansas City for residency - though we had no family that lived here. Then we stayed, and Ross was working at Children's Mercy - where Ryder would later be born, and spend his entire life...but we didn't know that yet, Addy came first, and then our Ryder...with only half of a heart...and he needed a fetal ECHO...and the cardiologist trained in Boston and knew of a fetal intervention that had only been done a handful of times...and I just READ a paper about that the night before...and then Boston, and then home and then he was here. Well he was supposed to be here February 21st but the whole c-section/cardiac surgery was postponed a week to wait for his surgeon to come back from abroad. And THEN he was here. He was amazing. He was perfect. And then he was gone...and Ross and I are standing together in the Park with All the Flowers next to Ryder's Christmas Tree...on the exact same spot we were standing 8 years ago before any of these plans were known to us. We were at my great-grandfather's funeral. He died on February 21st in 2004 (the year Ross and I would be married). Now how could such a plan be woven by accident? And that is only part of the plan...hope says there is a future...and though Ryder won't be treading the path with us down here, we will be carrying him with us forever.
Thursday, January 3, 2013
Thank you.
I still don't know what to say next...but we do owe you a gazillion thank yous...so that seems a good place to start.
Thank you so much to everyone who came to Ryder's service and thank you to those who helped with it. It was great to see all of you; your support has been nothing short of amazing. The willingness you had to stop what you were doing in the middle of a random Thursday and be somewhere none of us wanted to be for a reason none of us can even begin to understand was appreciated more than I can ever put into words. Some of you drove for hours to come...got speeding tickets on your way...drove solo with a baby in your backseat or left your brand new baby to be there. Some of you knew you could only stay for a few minutes, but you came anyway. Some of you have known us very well and some of you have not...some of you wiped our Ryder's poopy bottom at least once a week or changed his tubing more times than you care to remember...and some of you only saw his breathtaking smile via my pictures. Funerals are never easy -they are sad, uncomfortable, awkward really, and none of us knows what to say, or do, or what we need or want to hear. I know. But thank you for coming to be sad and uncomfortable with us.
Thank you for all of your messages - the calls, facebook messages, texts, emails, blog posts and/or any other means of communication I am missing. I know some of you couldn't be there with us and we thank you for thinking about us and caring. I responded to some of your messages initially but then sometimes I just couldn't - I read them all, sometimes multiple times but sometimes I felt I had nothing to say in return that was as perfect, helpful or meaningful as what you said to me.
The cards...thank you for all the cards - I am still reading them (and we are still getting them)...I love the messages, especially the cards that came with letters inside. The stories about Ryder, about butterflies, about angels and about peace - I loved them. I am not sure how some of you even got our address - the fact that you would go to all that trouble means so much. I did not forget to say thank you for the greenery either - the flowers were beautiful and we have 2 plants left at our house. Another plant has gone to plant heaven, sorry plant, I did not inherit my mom's green thumb. Thank you for the food, the sugar and caffeine especially...
From my Johnson fam - Ryder will have his name up by the Polar bear exhibit at the KC Zoo, what an awesome Christmas gift - to visit our Ryder's name next to Addy's favorite zoo friend - just perfect. Thank you for all the beautiful Angel gifts, Steve & Dena your angel has been confiscated by Addy to be Baby Bitty's "mommy" so she has been very busy. Given the timing our our goodbye these are a few of my other favorite gifts - thank you Julie, Bethany, Stephanie, Wathen, Aaron & Gen, Rita & Dev.
Thank you thank you thank you for your support for congenital heart disease in memory of our Ryder - we have already received a letter (filled front and back with names) of those who donated to Little Hearts online for Ryder - high school/college/med school/residency friends, family, neighbors and people we don't know personally. We sent money in from his funeral alone for over a thousand dollars. Donations were also made to the American Heart Association and Congenital Heart Defects Families Association in memory of Ryder. You all are just amazing.
Thank you for rooting for Ryder, for praying for him. Thank you for reading my updates, asking about how he was doing, and for all of your support along the way. Thank you for visiting with him and holding his hand, he loved holding hands. Thank you for reading to him, watching Baby Einstein with him and always making sure his silver beads were within reach. Thank you for putting tangerine chapstick on him when we weren't there - more so to see him delight in the taste as his little tongue darted out around that tube than for it actually healing chapped lips. Thank you for laughing at him with us when he repeatedly grabbed his nasal cannula and stuck it in his mouth all the while looking at you as if you were the one who kept putting it in the wrong place. Thank you for bandaging his wounds, giving his medicines, and watching his every heartbeat, right down to the last one. Thank you for being Ryder's (and our) family.
Thank you so much to everyone who came to Ryder's service and thank you to those who helped with it. It was great to see all of you; your support has been nothing short of amazing. The willingness you had to stop what you were doing in the middle of a random Thursday and be somewhere none of us wanted to be for a reason none of us can even begin to understand was appreciated more than I can ever put into words. Some of you drove for hours to come...got speeding tickets on your way...drove solo with a baby in your backseat or left your brand new baby to be there. Some of you knew you could only stay for a few minutes, but you came anyway. Some of you have known us very well and some of you have not...some of you wiped our Ryder's poopy bottom at least once a week or changed his tubing more times than you care to remember...and some of you only saw his breathtaking smile via my pictures. Funerals are never easy -they are sad, uncomfortable, awkward really, and none of us knows what to say, or do, or what we need or want to hear. I know. But thank you for coming to be sad and uncomfortable with us.
Thank you for all of your messages - the calls, facebook messages, texts, emails, blog posts and/or any other means of communication I am missing. I know some of you couldn't be there with us and we thank you for thinking about us and caring. I responded to some of your messages initially but then sometimes I just couldn't - I read them all, sometimes multiple times but sometimes I felt I had nothing to say in return that was as perfect, helpful or meaningful as what you said to me.
The cards...thank you for all the cards - I am still reading them (and we are still getting them)...I love the messages, especially the cards that came with letters inside. The stories about Ryder, about butterflies, about angels and about peace - I loved them. I am not sure how some of you even got our address - the fact that you would go to all that trouble means so much. I did not forget to say thank you for the greenery either - the flowers were beautiful and we have 2 plants left at our house. Another plant has gone to plant heaven, sorry plant, I did not inherit my mom's green thumb. Thank you for the food, the sugar and caffeine especially...
From my Johnson fam - Ryder will have his name up by the Polar bear exhibit at the KC Zoo, what an awesome Christmas gift - to visit our Ryder's name next to Addy's favorite zoo friend - just perfect. Thank you for all the beautiful Angel gifts, Steve & Dena your angel has been confiscated by Addy to be Baby Bitty's "mommy" so she has been very busy. Given the timing our our goodbye these are a few of my other favorite gifts - thank you Julie, Bethany, Stephanie, Wathen, Aaron & Gen, Rita & Dev.
Thank you thank you thank you for your support for congenital heart disease in memory of our Ryder - we have already received a letter (filled front and back with names) of those who donated to Little Hearts online for Ryder - high school/college/med school/residency friends, family, neighbors and people we don't know personally. We sent money in from his funeral alone for over a thousand dollars. Donations were also made to the American Heart Association and Congenital Heart Defects Families Association in memory of Ryder. You all are just amazing.Thank you for rooting for Ryder, for praying for him. Thank you for reading my updates, asking about how he was doing, and for all of your support along the way. Thank you for visiting with him and holding his hand, he loved holding hands. Thank you for reading to him, watching Baby Einstein with him and always making sure his silver beads were within reach. Thank you for putting tangerine chapstick on him when we weren't there - more so to see him delight in the taste as his little tongue darted out around that tube than for it actually healing chapped lips. Thank you for laughing at him with us when he repeatedly grabbed his nasal cannula and stuck it in his mouth all the while looking at you as if you were the one who kept putting it in the wrong place. Thank you for bandaging his wounds, giving his medicines, and watching his every heartbeat, right down to the last one. Thank you for being Ryder's (and our) family.
Monday, December 17, 2012
Ryder's book
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Monday, December 3, 2012
Service Information
Ryder's service will be Thursday, December 6, 2012.
First Lutheran Church
6400 State Line Rd.
Mission Hills, KS
12:00 Visitation
1:00 Service
Reception Following
In lieu of flowers, donations can be made in Ryder's name to Little Hearts: https://www.littlehearts.org/Content/Donations.asp
Sunday, December 2, 2012
The Yellow Butterfly
Back when Ryder was still in room 9 (in real world time that was last Spring) there was a particular misty day that I haven't thought about for a while, but I imagine now I will come back to frequently for a long time. Ryder was still on the ventilator from his Norwood surgery; he was still on a lot of drips, he was tiny. Very fragile. But he was stable that day. We had our room set up with the recliner in the back corner next to the ICU toilet which we used as a table, then on the other side of the toilet was another chair. We would alternate seats. We didn't have much in the room yet, just a basket of snacks from the hospitalists, a hospital blanket (for the person sleeping in the recliner) and our computers. This was back when I was still opposed to having much in the room, because that was a sign you were staying put and I was determined Ryder was leaving that ICU any minute and I didn't want to have to pack up a ridiculous amount of baby stuff. His room was waiting with his stuff at home.
To get from room 9 to the waiting room you had to walk around the main nursing station down the hall and then turn right to go through the double doors. That day a little girl was dying in a room on the left just before you turned the corner for the door. She was maybe 4 or so, and I don't know why she was sick, but I knew she was dying because a butterfly was pinned on her door. A yellow one. I've seen blue ones and green and red I think, and she got a yellow one.
Anyone who's been in the ICU for a few weeks knows what the butterfly means and it gives you the same flurry of thoughts every time - What happened? Why this baby? How is the family doing in there? I hope that child isn't hurting anymore. And you hold your breath when you walk by. And your heart breaks a little. Sometimes you don't realize it but you are crying when you pass the room. And you are so thankful that it isn't your room. And then you feel bad for thinking that.
I don't know why I had my good camera there that day. I didn't even taken any pictures of Ryder. And I don't know why I was looking out the window onto the courtyard from the waiting room...it was before they even started working on the garden that months later Ryder took his first breath outside in. But I did. And I saw it fluttering around, a big beautiful yellow butterfly.
I think my heart stopped. I know I forgot to breathe. I watched it for a few minutes, flittering and floating, sometimes coming close to the window so I could see it, sometimes flying up high between the windows so I thought it had left. I looked around a few times to see if anyone else was in the waiting room and had seen this sight. No. Watching TV. Then I was alone again. I went back to Ryder's room and got my camera. I waited. After a few minutes the butterfly dipped back down so I could see it again. And then I spent the next 20 or 30 minutes trying to take a picture of it...I was there at that window so long I can't imagine how many people walked by thinking I was insane, darting around trying to take a picture of something that I am certain only I could see. It actually made me smile, that butterfly - darting around so quickly trying to avoid getting captured. As soon as I would put my camera down and look again it would be there, right up against the glass and then dart away again just as I tried to focus on it. Despite all that effort, I only ended up with three very poor pictures of that butterfly.
Please trust me, it isn't dust or a moth you can see that speck of - it is a big beautiful yellow butterfly. I spent the next several hours staring down the hall at the butterfly pinned on the door. I can't tell you how much I longed to knock, to tell that family their butterfly was just outside the window, she was fluttering around and so beautiful. How could I tell them? Could I ask the nurse to tell them? It wasn't any of my business. Or was it? What if I was the one that was supposed to tell them? Should I show them my pictures? I just couldn't do it. I regretted that for a long time...and that night the room was empty and the yellow butterfly was gone.
On Friday afternoon, there was a yellow butterfly on Ryder's door. He should have gotten a blue one I think but it was yellow instead. I don't know what happened, it seemed fast, it's a blur. I remember lots of people, masks, machines, beeping. I keep seeing the rhythm on the monitor. I closed my eyes and I was holding him again, swaddled in a blanket. He was just as perfect as the day he was born. He has been perfect all along.
I realized yesterday that I didn't need to tell anyone about the yellow butterfly - she was there for me. She came to tell me to keep drinking in every moment. To make every moment special. To stay thankful and full of hope. To try to keep smiling because although my Ryder would always be a warrior, he was fragile and he would be looking to us for strength and protection. He lived his life in a glass world created just for him and it would only be through us, his parents, his sister, his family and friends, his nurses, his respiratory, physical and occupational therapists, and his doctors that would see happiness. And I think he saw that every day. There is a lot more to say but not now. I just wanted to tell you that when you look at that butterfly up close, she is more than a butterfly, she is an angel. And now, so is our Ryder.
To get from room 9 to the waiting room you had to walk around the main nursing station down the hall and then turn right to go through the double doors. That day a little girl was dying in a room on the left just before you turned the corner for the door. She was maybe 4 or so, and I don't know why she was sick, but I knew she was dying because a butterfly was pinned on her door. A yellow one. I've seen blue ones and green and red I think, and she got a yellow one.
Anyone who's been in the ICU for a few weeks knows what the butterfly means and it gives you the same flurry of thoughts every time - What happened? Why this baby? How is the family doing in there? I hope that child isn't hurting anymore. And you hold your breath when you walk by. And your heart breaks a little. Sometimes you don't realize it but you are crying when you pass the room. And you are so thankful that it isn't your room. And then you feel bad for thinking that.
I don't know why I had my good camera there that day. I didn't even taken any pictures of Ryder. And I don't know why I was looking out the window onto the courtyard from the waiting room...it was before they even started working on the garden that months later Ryder took his first breath outside in. But I did. And I saw it fluttering around, a big beautiful yellow butterfly.
I think my heart stopped. I know I forgot to breathe. I watched it for a few minutes, flittering and floating, sometimes coming close to the window so I could see it, sometimes flying up high between the windows so I thought it had left. I looked around a few times to see if anyone else was in the waiting room and had seen this sight. No. Watching TV. Then I was alone again. I went back to Ryder's room and got my camera. I waited. After a few minutes the butterfly dipped back down so I could see it again. And then I spent the next 20 or 30 minutes trying to take a picture of it...I was there at that window so long I can't imagine how many people walked by thinking I was insane, darting around trying to take a picture of something that I am certain only I could see. It actually made me smile, that butterfly - darting around so quickly trying to avoid getting captured. As soon as I would put my camera down and look again it would be there, right up against the glass and then dart away again just as I tried to focus on it. Despite all that effort, I only ended up with three very poor pictures of that butterfly.
On Friday afternoon, there was a yellow butterfly on Ryder's door. He should have gotten a blue one I think but it was yellow instead. I don't know what happened, it seemed fast, it's a blur. I remember lots of people, masks, machines, beeping. I keep seeing the rhythm on the monitor. I closed my eyes and I was holding him again, swaddled in a blanket. He was just as perfect as the day he was born. He has been perfect all along.
I realized yesterday that I didn't need to tell anyone about the yellow butterfly - she was there for me. She came to tell me to keep drinking in every moment. To make every moment special. To stay thankful and full of hope. To try to keep smiling because although my Ryder would always be a warrior, he was fragile and he would be looking to us for strength and protection. He lived his life in a glass world created just for him and it would only be through us, his parents, his sister, his family and friends, his nurses, his respiratory, physical and occupational therapists, and his doctors that would see happiness. And I think he saw that every day. There is a lot more to say but not now. I just wanted to tell you that when you look at that butterfly up close, she is more than a butterfly, she is an angel. And now, so is our Ryder.
Saturday, November 17, 2012
One year. Wow.
A year ago today we woke up in Boston. I checked in at "The Brigham" and was admitted to the OB floor where I had a spinal and went to the OR...
There, Baby Ryder floated around blissfully until he had fentanyl and a paralytic medicine injected into his very small in utero bottom via an amniocentesis needle. Then for several hours a team including Dr. Tworetzky, 2 other cardiologists, an OB, an obstetric radiologist, 2 anesthesiologists and a pediatric anesthesiologist as well as a nursing team worked on Ryder's heart. They went in via an amniocentesis-like procedure entering his chest wall and then his heart...on attempt 1 a small hole was made in the atrial septum but the stent couldn't be deployed...on attempt two the stent was deployed but flipped out into the right atrium where it bounced around and lodged in Ryder's tricuspid valve. Then with some quick thinking before it tore up his valve it was literally poked into the right ventricle with a cardiac cath wire. There it hung out. Then a debate ensued about whether to abort the procedure as Ryder's hemopericardium (blood around the heart) was drained out and his heart rate slowed dangerously low.... The very loud and [thankfully] confident interventialist went for round 3 as he said "Come on! Let's give this baby a chance!" There was probably a few choice words thrown around but I was laying very still (mostly because I was paralyzed) and quietly breathing, waiting to hear for Ryder's heart rate to pick up...and it did...and they poked another big hole in his atrial wall...and he lived.
I wrote on this blog November 17, 2011 "As with many things in life the procedure didn't go exactly as planned." Ha! I had no idea the ride Ryder would take us on for the next year...
Well our little miracle is getting his much needed ventilator rest this weekend...hoping to start cutting back on the support next week so we can see our smiling little guy again soon. As always, we appreciate all the prayers for our warrior. Remember...home. for. Christmas.
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| Photo courtesy of Wayne Tworetzky, MD, director, Fetal Imaging and associate in Cardiology, Boston Children's Hospital (professionally texted to Ross via iphone, of course) |
There, Baby Ryder floated around blissfully until he had fentanyl and a paralytic medicine injected into his very small in utero bottom via an amniocentesis needle. Then for several hours a team including Dr. Tworetzky, 2 other cardiologists, an OB, an obstetric radiologist, 2 anesthesiologists and a pediatric anesthesiologist as well as a nursing team worked on Ryder's heart. They went in via an amniocentesis-like procedure entering his chest wall and then his heart...on attempt 1 a small hole was made in the atrial septum but the stent couldn't be deployed...on attempt two the stent was deployed but flipped out into the right atrium where it bounced around and lodged in Ryder's tricuspid valve. Then with some quick thinking before it tore up his valve it was literally poked into the right ventricle with a cardiac cath wire. There it hung out. Then a debate ensued about whether to abort the procedure as Ryder's hemopericardium (blood around the heart) was drained out and his heart rate slowed dangerously low.... The very loud and [thankfully] confident interventialist went for round 3 as he said "Come on! Let's give this baby a chance!" There was probably a few choice words thrown around but I was laying very still (mostly because I was paralyzed) and quietly breathing, waiting to hear for Ryder's heart rate to pick up...and it did...and they poked another big hole in his atrial wall...and he lived.
I wrote on this blog November 17, 2011 "As with many things in life the procedure didn't go exactly as planned." Ha! I had no idea the ride Ryder would take us on for the next year...
Well our little miracle is getting his much needed ventilator rest this weekend...hoping to start cutting back on the support next week so we can see our smiling little guy again soon. As always, we appreciate all the prayers for our warrior. Remember...home. for. Christmas.
Thursday, November 15, 2012
Sphygmomanometers
Just thought I'd throw a medical word out there for kicks...not as fun to say as epistaxis (nose bleed) but still, why not say blood pressure machine if you are referring to a blood pressure machine. But I digress...
Ryder is stable today. That doesn't sound exciting I know, but it is a very good thing. Last night was not as rough as the night before, but I fell asleep and woke up to the lights on - never good. Not as bad as when you wake up and realize you missed some text messages, the last of which ends "Aren't you getting my texts?" but still...my reflex is to look first at the monitor and not Ryder...blood pressure 40s/20s. That is looowww. He got 2 boluses of albumin and they popped back up; then an hour later same thing. But, after that he sailed through the rest of his night without any big issues. He needed a little more oxygen this am but this was transient and now he is barely on any; just still needing the actual breathing work done by the ventilator. His blood cultures are still negative so it appears that the continued fevers are likely all viral so hopefully all things will continue to improve with time. He even woke up a little today, though still pretty sedated. But those pesky blood pressures...he has a normal one now but is on dopamine and a small amount of epinephrine (both keep blood pressure higher). I think a lot of it is because of his sedation but still, the tower of green lights on his IV pump pole is always scary.
What I keep looking at, though, is this blue balloon...
the child life department brought it in tied to a rattle for Ryder last Thursday when they heard he was transferring to the floor. It's mostly deflated now, tied to the back of his crib. I am thankful it doesn't say anything like good luck or congratulations...but there it is, still afloat, twirling around above the NIRS monitor. It was tied to the front of his crib until they moved it to intubate him again -I remember it was the first thing I saw walking into his room Tuesday afternoon. I so wanted to pop it and thow it away...stupid reminder that this wasn't how it was supposed to go this time. Stupid out-of-place balloon, floating around all day in complete denial that it no longer had anything to celebrate. But I didn't. That balloon is Ryder's, and every time he takes another breath there is reason to celebrate. That balloon isn't perfect, but I'm sure he doesn't care...nothing in this world is perfect. Although our little warrior IS perfectly amazing. He will come home, I know it. Home for Christmas. So..sphygmomanometer, keep those good blood pressures a comin!
Ryder is stable today. That doesn't sound exciting I know, but it is a very good thing. Last night was not as rough as the night before, but I fell asleep and woke up to the lights on - never good. Not as bad as when you wake up and realize you missed some text messages, the last of which ends "Aren't you getting my texts?" but still...my reflex is to look first at the monitor and not Ryder...blood pressure 40s/20s. That is looowww. He got 2 boluses of albumin and they popped back up; then an hour later same thing. But, after that he sailed through the rest of his night without any big issues. He needed a little more oxygen this am but this was transient and now he is barely on any; just still needing the actual breathing work done by the ventilator. His blood cultures are still negative so it appears that the continued fevers are likely all viral so hopefully all things will continue to improve with time. He even woke up a little today, though still pretty sedated. But those pesky blood pressures...he has a normal one now but is on dopamine and a small amount of epinephrine (both keep blood pressure higher). I think a lot of it is because of his sedation but still, the tower of green lights on his IV pump pole is always scary.
What I keep looking at, though, is this blue balloon...
the child life department brought it in tied to a rattle for Ryder last Thursday when they heard he was transferring to the floor. It's mostly deflated now, tied to the back of his crib. I am thankful it doesn't say anything like good luck or congratulations...but there it is, still afloat, twirling around above the NIRS monitor. It was tied to the front of his crib until they moved it to intubate him again -I remember it was the first thing I saw walking into his room Tuesday afternoon. I so wanted to pop it and thow it away...stupid reminder that this wasn't how it was supposed to go this time. Stupid out-of-place balloon, floating around all day in complete denial that it no longer had anything to celebrate. But I didn't. That balloon is Ryder's, and every time he takes another breath there is reason to celebrate. That balloon isn't perfect, but I'm sure he doesn't care...nothing in this world is perfect. Although our little warrior IS perfectly amazing. He will come home, I know it. Home for Christmas. So..sphygmomanometer, keep those good blood pressures a comin!
Tuesday, November 13, 2012
The Common Cold
We were all set for Ryder to move up to the 4th floor on Thursday. How exciting, and terrifying!!
Just waiting to get a bed...then the oxygen sats were lower...and then lower...and back on the nasal canula. It was such a bummer. It had been 2 + weeks without oxygen. So Ryder stayed in the ICU that night, he had a low grade temp, and then the coughing started. He had an ok day Friday but was a little more cranky Saturday. We thought it was from his vaccinations which he had just gotten. He did get to eat some sweet potatoes and green beans (and then tried to eat anything else he could get anywhere near his mouth) which was fun -he has clearly been working on those fine motor skills and can do his own oral care with a mouth swab. In fact, I have no doubts he could brush his own teeth already if he had any. Grandma GG gave him some bananas which he loved on Saturday night but his cough got worse and he had to get put back on a lot more oxygen. The last 2 nights he has been miserable, waking up every hr coughing, feeling yucky, congested and getting puffy. His viral PCR came back positive for rhinovirus and enterovirus. And today our little warrior was intubated for...a cold.
Despite our scrupulous hand-washing and the every-other-night alcohol-wiping down of his room he couldn't avoid the worst infection risk...US. It can always be worse I know, he could have something irreversible, could have had respiratory failure after he was transferred out of the ICU or at home, but nothing breaks your heart like watching your sweet little angel suffer and get tubed after you couldn't stop loving on him and gave him a cold. Because I live in a state of perpetual denial I just came to terms about an hour ago that he wasn't coming home for Thanksgiving. I really believed it was going to happen this time. But there is still 42 days until Christmas...so if you have the time for a prayer tonight and/or a letter to Santa, all we want for Christmas is our baby boy under the Christmas tree. Wouldn't that just be perfect? It wouldn't be the first miracle for sure. And to my Ryder, I am so sorry peanut. I am sorry beyond words.
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| Seriously, how handsome is this little butterball?!? |
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| Ryder, fighting the mean viruses |
Wednesday, November 7, 2012
Lellow
What an amazing week it has been so far...and our little warrior may just be moving to the floor tomorrow! Ryder had a good visit w/grandma and grandpa this weekend and I took Christmas pictures of he and Addy on Sunday - not going to lie, can't stop looking at them. He is wearing a little Santa hat and looks like a chubby elf. I could just eat him up.
The other fun part of our week was Addy's very first parent-teacher conference for preschool. She is such a big girl! Of course Addy has been "a delight" in school - she is so funny I don't know how it would be possible to not be entertained by her. She spends most of her day with "practical life" montessori activities - i.e. washing windows, polishing metals, sorting things. No surprise there. She is apparently very "busy". Maybe that is why she can't sleep at night...still thinking of all she has to do. She writes "lists" at home, an activity she of course picked up from me (and with help from the Frog and Toad story - if you haven't read it it's a good one - Toad starts his list after waking up with "wake up" just so he can cross it out). The lists are great, since she obviously can't write, but she makes perfect little squiggles on each line of a notepad. I can't even keep track of all the funny thinks she says. The other day she was talking about Ross -she still is processing the fact that he works at Children's and Ryder lives here but one has nothing to do with the other. She said I am going to see daddy in Ryder's room, but he won't be at work there because he doesn't do work. Funny.
It is so easy to look at our Ryder and see how far he has come; to see how much he has overcome, developed and grown. If you don't believe in miracles, then you probably haven't see any of my photos. Though no photo could compare to remembering how he looked after his first surgery or worse, how he looked when he had to be pulled of ECMO post-op day 3. Frail, blue, cold, battered. On full life support, surrounded by IV poles with so many pumps we lost count. So sad I couldn't even take his picture yet. Compare that to now. He is so perfect.
What I sometimes lose sight of is how much Addy has grown since Ryder has been here. Almost 9 months for a 2 (now three) year-old is an eternity. In the last 8 1/2 months she became a big sister. She moved daycare rooms and then stayed at home with our nanny (who we were hoping would be at home with Ryder), and she is now in preschool. She started dance class. She LISTENS in dance class. She has a new BFF neighbor who she actually will shrare toys with. She has learned all her letters, can [sort of] write her name and is doing great with numbers. She stopped wearing pullups for naps. She is awesome. We are so lucky to have her - can you believe a toddler who has been carted back and forth to a hosptial a million times, missed time with mommy and/or daddy, is forced to try and figure out why other kids have baby brothers or sisters at home and hers is still at the hospital and she never complains. She only cries about it when she can't come visit him. She is such a good big sister. She is getting soooo big. Sometimes, I forget that. And then the other day she said yellow. Not lellow. I asked her again what color her sun was - "yellow". Seriously?!? My baby girl can make a "Y" sound? What are we going to do. Wait until she says Ryder instead of Wyder. I will be a mess.
The other fun part of our week was Addy's very first parent-teacher conference for preschool. She is such a big girl! Of course Addy has been "a delight" in school - she is so funny I don't know how it would be possible to not be entertained by her. She spends most of her day with "practical life" montessori activities - i.e. washing windows, polishing metals, sorting things. No surprise there. She is apparently very "busy". Maybe that is why she can't sleep at night...still thinking of all she has to do. She writes "lists" at home, an activity she of course picked up from me (and with help from the Frog and Toad story - if you haven't read it it's a good one - Toad starts his list after waking up with "wake up" just so he can cross it out). The lists are great, since she obviously can't write, but she makes perfect little squiggles on each line of a notepad. I can't even keep track of all the funny thinks she says. The other day she was talking about Ross -she still is processing the fact that he works at Children's and Ryder lives here but one has nothing to do with the other. She said I am going to see daddy in Ryder's room, but he won't be at work there because he doesn't do work. Funny.
It is so easy to look at our Ryder and see how far he has come; to see how much he has overcome, developed and grown. If you don't believe in miracles, then you probably haven't see any of my photos. Though no photo could compare to remembering how he looked after his first surgery or worse, how he looked when he had to be pulled of ECMO post-op day 3. Frail, blue, cold, battered. On full life support, surrounded by IV poles with so many pumps we lost count. So sad I couldn't even take his picture yet. Compare that to now. He is so perfect.
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| Addy, big sis tattoo! |
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| Addy, taking being a big sis seriously!! |
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