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.

Ryder's Movie...

 

Ryder's Movie

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.



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.