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.