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....

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.

Always on our hearts.


 

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...

 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.

Raffie O'Newman

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.

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.


Love.

Forever.

All the time.

Sunshine

Love...is the sun.

How adorable is this girl (and this guy) basking in the sunshine?

Ok just one more...wait for it...butt ruffles...

Addy enjoying a rare bit of winter sun with Ryder's polar bear (just to her left)

Would you believe the sun came out right when we put these flowers in Ryder's vase?
Raffie is loving it.

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.