Saturday, October 7, 2017

Maya Journey: Glorious

Maya Journey: Glorious

I have been looking forward to writing this post for 4 months now. Our social worker extraordinaire captained a continuing education conference aimed for those who provide direct patient care in prenatal pediatrics and she asked me if I would be willing to tell Maya's story. I was all..."uhhhhh yeaaaaaaaahhhhhhh! doy." And then I pondered and ruminated about it for those 4 months until yesterday biggie.

One thing I have heard a couple times when talking about love, life and the grief that comes with losing a child, is the phrase "I can't even imagine." Maya's diagnosis, depending on where you read, is rare enough to show up once in every 8000 pregnancies and so I was thrilled to share a little bit about our family's experience the past 18 months or so to give a glimpse of the unimaginable.

It was an epic saga of our complicated relationship with hope, the intense feelings that come with loving a tiny person you give birth to and what it means to be broken.

The past couple weeks, leading up to this talk I tried to fight the good fight that you have to fight, when you are about to be a part of some good in the world. I think about the battle that goes on that we can't see, the one with angels whispering and inspiring for good and the darker influence of the adversary and his 'pinched minions' trying to convince us that we can't change, we aren't good enough and that you should just give up....right now, pretty sure there is some hissing and cussing and it's like So I was asking myself why I felt so uninspired, down and oppressed....Lightbulb! At this point I realized that is what was happening and thought "Get away from me turd faces!!!!!" or if you  want you can get biblical and say "Get thee behind me Satan!"

Either way if you start shouting at unseen beings to get away from you....EVERYONE will give you your space...not just the unseen:)

So the day finally arrived and I was given the opportunity to speak at the general session about my baby girl and rascal family for 45 minutes. All of those minutes my hand would not stop shaking...just click the button on the mouse to change the slide on the powerpoint!  Do what you're told hand! It was an honor for me that I will hold dear forever. Nate took the day off of work and gave me a pep talk the entire drive to the hospital (also 45 minutes and not the first pep talk) while I stared blankly in a major nervous freak out.

Me and my rock:)

There was a lot of love in that auditorium and I do not doubt that Maya was in attendance.  At one point I wanted to make sure the audience was OK because there was so....much....sniffling. All I could say was "hang in there guys, it's gonna get better..." Our social worker had a specific job to signal to me when I had 7 minutes left...yeah she was totally useless to me now, I knew I was probably out of time but she was just sitting there had one job! hahahaha.

I talked about the ups and downs that came with a diagnosis of that nature, making plans that are really out of your control, celebrating the little things, the value of pain and suffering and that we all need hope.

When I finished my talk, I felt so much peace and I'm not sure I have felt it so strongly before, I so welcomed it. In times that to me can feel pretty dark and dreary, I felt like I got to be a part of some good in the world. I could really relate to this song (that I may or may not have listened to 1000 times):

What I really want to share with you is a video I put together about our life with Maya. Be warned, you might feel things, and it is possible that water will come out yo face.

As we prepared and planned and prepared and planned and tried to strategize Maya's birth and potentially what could be only a few moments of her life, it was our dream and highest goal to be able to have her big brothers get a chance to meet their little sister. Enjoy.

So here's to hope in a sometimes dark and dreary world.

Much love and more next time.

Thursday, July 27, 2017

Maya Journey: Scars

Maya Journey: Scars

Anyone else wake up super early, drink their pre-jym mix (a.k.a fast juice) and watch bible videos to get pumped up for their work out?  I know...who doesn't do that?!? Which on a completely un-related note, if you don't know me, but you likely do, you know I am a weirdo in some super awesome ways. Normally I pop in the head phones and listen to music with lyrics close to "...You are kicking your own butt and you liiiiike it!!!" etc. but today I guess I needed a bit more. So my morning pump up took me in a different direction this a.m.

A month or so ago I wrote about my adventures in running and specifically the Ragnar race. I'm still learning a lot from that experience and wanted to share a bit more. I have also been preparing for a talk I have been asked to give at a perinatal conference about the life of Maya, so I have been doing some reflecting.

Remember this little ditty?... 

Well it was super hard to wash my sharpee tat but not in the way you would think.  I actually had to re-fill it a few times during the race because I sweat it nearly off and smeared it all over my arm repeatedly.  But as I stood in the shower delighted to lose a couple days of hard-earned stank, I held my loofah hesitantly over my Mighty like Maya and thought...well how clean do I really need to be? I didn't want to wash her name off of my arm, not because it looked did...I just didn't want it to go away.

I do not permanently tattoo my body, but I wished I had something on my skin to remember her. Maya was born naturally and so I do not have a scar from her birth, but oh... how I wiiiiiiish I did, one that I could run my fingers over and think about her exquisite life and impact on our family, one that was big enough to make others wonder and dare to ask “Maaan what haaaaappened there?!”

What if that’s how it worked? I think most of us have earned a scar at some point in our lives but what if every time you really loved someone or fought a battle for someone you walked away with a physical scar, a mark, not just on our souls (like it does) but something you could see and touch and love. I think we would all look pretty different and super die-hard awesome. Perhaps, scars would have a different meaning, and in a world where everyone is scarred up from relationships, from what happens when you love someone...the question wouldn’t be what happened, it would be who?.

Perhaps then as I am checking out at the store with my three boys exploding out of the cart running around the grocery aisles when I am asked by strangers "So are you going to try for a girl?" I could point at my giant scar and in an epicly awesome die-hard voice say "THIIIIIIIS was for my daughter Maya."

The boys in my life are amazing. As frequently as I appear dragged about by my "energetic" progeny...and by appear, I should probably say literally... they have been a salve for grief.  They know her name and they say it often in prayers, in small talk with strangers..."I have a sister named Maya, she died" (I actually really love those), and just random times at home.  One time seemingly out of nowhere Henry (the threenager) said "I miss Maya." 

When it comes to the "Who?" you don't want to forget, you don't want them to forget. 

So back to the shower and me pondering the shape and size of my scar...a thought came to me.  I remembered the Savior, and although often depicted hanging on a cross, I picture him in white, standing in his resurrected and perfect body.  

This time however....I remembered His scars.  I have heard the missionaries talk about how He chose to keep His scars but I had always pictured Thomas, examining the scars as proof. 

Suddenly I saw the Savior looking down at his hands and touching the scars, and thinking of me. 

Perhaps that is how it really is with Jesus Christ, not what happened to Him, but for whom. Maybe he looks at his scars and thinks...thiiiiiiis was for... Gillian.  

You may be thinking..."that was a lot more churchiness than usual"... it's ok, it's good for us.
So now...I face the day with faith for the fight and although I do not have a scar, I carry her with me.

Much love, and more next time.

Wednesday, June 7, 2017

Maya Journey: The Inner Wild

Maya Journey: The Inner Wild

Well it' been a while since I last felt the ability to share my thoughts and it has been a hard fought fight to get to where I am today. I think about what it felt like after returning home from Maya's burial and I am so thankful I made it past those first few months and it may take a while to look at those winter months the same way again.

But with the help and gentle inspiration from God, time, and loved ones, "in the depth of winter I found that within me lay an invincible summer."(Albert Camus)

So...I started to run.

I bought a treadmill and demolished a pair of sneakers I had for a decade and invested in shin splint tape and stretchy pants...because sometimes, when you are a man(wo) you wear stretchy pants in your's for fun.

And sometimes you wear your stretchy pants in your room while you run your demons out until you collapse on your bed, because you are convinced that YOU are still in there...somewhere.

My sister-in-law Diana, aware of my new love of running (a.k.a I got over my fear of letting go of the handles on the treadmill), asked me if I would like to join her in a Ragnar race. My usual and immediate response to things Diana says with the word "race" in it was an emphatic "No...huh uh, no way."  And then, I started thinking.....maybe!? And theeeeeen...I said Yes! There have been more than a few times I have gone with a good feeling as a propellant for action and this most certainly, defying logic, was one of them.

I told a friend I had signed up to run a 200 mile relay race and she said "Wow! Are you a runner?" to which I responded... "nope."

With maybe 5 weeks ahead of us, we began training. I looked pretty much awful 6 days a week...the good kind though, from a crazy amount of sweat and a decent amount of tears. I read constantly about running tips, how to lace shoes, how to run hills, the length of your stride, how to breathe, how to lean, I downloaded apps, I wore compression socks, I duct taped blisters, I high-fived myself and danced in the shower and I tried extra hard to listen to the voice that said "You can do this." Aaaaand I only had like 5 mental break on to victory!

Finally it was Race Day. Our team got to the hotel late Thursday night and Friday morning we were all up and in the van with our gear at 4;45am. I had figured that just signing up for the thing was going to earn a pat on the back from myself and any mileage I put on my shoes was more than everyone on the couch. I imagined that was why I felt good about putting my name on the roster.
It had been an exquisitely tough year and I thought doing this run would be a symbolic exclamation as we near Maya's first birthday in a few weeks.

I told Maya at her funeral that she would probably see us cry and be sad and that it was OK and that it would bring us closer to God. Well, no doubt Maya has seen me on some hard times since she graduated from her earthly body.  I have spent a good amount of time trying to will her photograph to snuggle on my shoulder. Maya's passing has hurt abominably.


So I pulled out a sharpee and scrawled "Mighty like Maya" on my arm, tucked a small laminated picture of my baby girl into my pocket and turned up the music.

If this song just played over and over I would be alright. They pretty much summed it up.

The Ragnar is a relay race with 200ish miles split up between 12 team members, with each person running 3 legs of the race starting for us at 5:15 am and ending the following afternoon. 

My first leg of the race was absolutely gorgeous.  The sun was shining and I was running down an open farm road in Amish country Pennsylvania waving at buggies and giant farm machinery as they passed by.  The view was joyous and I could not help but run with a giant smile on my face. Seriously...running...who knew?! I even finished my leg before our van got to the next exchange point! Normally as you finish your leg you pass the "baton" (slap bracelet) to the next runner on your team who charges off continuing the race. It was really fun having my team show up with excitement that I had gone faster than expected.

(Sometimes your van is posing with horses...which is what we were doing when we lost our runner earlier in the day)- Diana, Me, Sarena, Karl and Liz...(David not shown here as he is running around somewhere)

My second leg was in the late afternoon in the woods with rolling hills and streams. Most of my run was in solitude and I still felt so free and happy. It had been a while since I felt so joyful.  Diana and my team taught me to let gravity pull me down the hills and to not put on the brakes, so I was running full blast down the hills hoping I didn't spaz out and trip because I would have been pretty bummed to leave my face on the pavement. Flailing downhill really helped my pace. That could be the title of my running book "Yer Gonna Wanna Flail More." Coming around the last bend I saw the next exchange point in an open field and waved as the teams started cheering, then another runner came up from behind me. Before I go on, one thing teams count is how many runners they pass and these are tallied as "kills."   A couple decades ago I was a pretty competitive person, an athlete even, and at that moment, that person woke up and before I became a dash mark on someone else's van, I started SPRINTING! Then she started sprinting!!! It was epicly awesome and I WON!!!  And by "I won" I mean I beat one runner to one exchange point...but I WON!!!! Can we all just take a minute to think about how awesome I am?!......It's OK if you need more time.

(Sarena, Diana and I sporting our Ragnar Tats!)

My third and final leg began shortly after sunrise on Saturday morning.  Karl started our van off at around 2:30 in the morning followed by the other die-hards of the van: David, Sarena, and Diana. I think that this leg was the hardest generally for our van with the lack of sleep and these were also longer in distance and in the dark. Serious respect to my teammates. Also did I mention it was raining?! I wish I had more pictures to share of the craziness.  Karl ran on a trail in the middle of the night and was unrecognizable among all the blinking vested runners and beat us to the exchange, thankfully David was waiting and ready to go for his leg. Sarena also donned the headlamp and safety vest and charged through the rain and the night.  Diana took the rain gear to a whole new level and punched arm holes in a garbage was very derelicte! Liz was cheering everyone on while nursing what was probably a stress fracture in her foot. Finally it was my turn, Diana slapped the bracelet on my wrist and whispered "Maya said this is going to be a hard leg" and handed me Maya's picture. She was right. Although the scenery was gorgeous and peaceful, with not-so-gentle rolling hills through the woods, every time my feet hit the ground it sent shock waves of pain up my legs. I could feel my positive attitude whither. I started to get down on myself and I practiced apologies to my team for going so slow. And then...I stopped doing that and I reminded myself that I am super awesome and I kept running.

So what really happened? I learned a lot. When we woke up freezing after two hours of sleep and started preparing ourselves for the last leg, my father in law sent a video message to Diana and I that I was not expecting. He said "This is what it is all about, THIS is what you were dreaming of the whole time you were preparing to get ready to go to this, This is YOUR time as you are getting ready to do THIS leg and I'm glad it's you." I was reminded that I AM strong and that I can do this, and by "this" I mean life. For several months I have felt like life has been dragging me along on my face. I gave birth to my long awaited beautiful daughter and for five months I counted her breaths until she took her last. I didn't feel so strong after that. My last run of the race taught me to be more proud of the statement "and I kept running" than "I won."

I am so proud of myself for signing up for that craziness. I am thankful for the new and dear friendships I have made, and for my crazy team mates who cheered me on in the rain when I so needed it.

I am also so grateful for a God who takes time to teach and lift me up when I feel broken.

So...I am going to keep running, and I'm taking Maya with me.

"Brethren, shall we not go on in so great a cause? Go forward and not backward. Courage, brethren; and on, on to the victory!" (Joseph Smith D&C 128:22)

Much love, and more next time.

Wednesday, January 25, 2017

Maya Journey: Small and Simple Things (funeral post 2)

Maya Journey: Small and Simple Things (Maya's funeral continued)

When it was my turn to speak I did what most people do at a funeral and that's have a little show & tell...wait...OK so you can probably tell by now that this was not your typical funeral, with all the Christmas hymns, and now this:)

I held up several items that show just how tiny our Mighty Girl really was.  Maya was our little treasure that we had mostly to ourselves and not everyone really saw how small her little mortal frame was until I held up some of her doll dresses, boots, and leggings. Many chuckled when they saw her leggings that were made from a single adult sock, especially when I told them how Henry loved those leggings and was desperate to fit into them.  It isn't the same but here are a few pics to try and show her size.

 Maya wearing doll clothes:)

Teeny tiny in her crib, also wearing doll clothes...awe

OK the pink one is a pantyliner, purple is a maxi pad and the white one was Maya's diaper!!!! (She eventually made it to NB size, like a champ.)

These be the leggings...this picture so does not do them justice.

I looooove this picture!  Maya is at her largest here at 5 lbs 8 oz! (Working on her physical therapy)
5 months old in new born clothing. Also I feel like it should be noted that George was 9 lbs 8 oz the day he was first born!

"By small and simple things are great things brought to pass." (Alma 37:6)
 I have to tell you the context of this scripture is that one of the great things brought to pass is the confounding of the wise…I can’t tell you how many times this was the case with Maya.  Everything about her physical body was miraculous.
Maya, the owner of tiny shoes, wearer of doll clothes and diapers in a size we didn’t think possible, had a profound impact on our family.

Some lessons we have learned from Maya:

Maya taught us that there is reason to Hope, even when it seems that all is lost and the deck is completely stacked against you.

Maya taught us that one person can change the world.

Maya taught us not to wait for a special occasion and that every day is a celebration.

Maya taught us to feel. So often we try to keep our emotions at a certain level, right in the middle, nice and tame. Life with Maya wasn’t so. Life became intense and exquisite, exquisite joy and exquisite pain. And sometimes, like right now we feel both.

Maya taught us to slow down and appreciate life.  And that some things just… don’t… matter.
Maya taught us to Trust.  It is hard to learn that you can’t control things but it is also freeing.

Most certainly this sentiment is fitting for Maya:
"I am the daughter of a king who is not moved by the world for my God is with me and goes before me I do not fear because I am His"

Maya taught us that miracles happen and that God has a plan for each one of us.

With all these lessons, and I have to tell you, not easily learned, we were taught how to be strong like our Mighty Girl. and cozy. I wish I could crawl into this picture.

What was Maya’s life like?
It was very pink and cozy.  Maya is probably debating right now with people about what the world is like.  She may have some negative things to say about riding in the car but, as someone might try to convince her that the world is a harsh and tumultuous place, she might reply that everything was pink, soft, and fluffy, that you get 100 kisses on your head by your big brothers every day, milk whenever you want, you can stay up late with your mom and dad every night…EVERY night, (and more your mom), you get free mani-pedis, everyone wants to snuggle and tell you how precious and amazing you are, doctors and nurses stare at you in awe and every once in a while, someone will sneak you a taste of ice cream…shhh nobody tell the medical people here I just said that. (It was Mint chocolate chip….she liked it).

The boys are bonking heads all trying to kiss Maya at the same time.

Maya’s work is not done.  She has completed her mission with her physical body, and I suppose she may catch a nap before God puts her to work but if you know me, you know I picture angels differently.  Maya no doubt will wield a sword of righteousness conquering evil and inspiring us to do good. She will be working alongside her grandpa Greg, her great Nana, her great great grandma Grace, grandma and grandpa Richey, grandma and grandpa Skogerboe, great uncle Joe, Aunt Clara and Uncle Martin, grandma and grandpa Shade, her cousin Claire, and many other loved ones on the other side of the veil.  Pretty awesome right?

Ok, here is the hard part…
I wanted to say a few things to my baby girl:

We love you so much.  We want you to stay with us but we know that you have a mission to fulfill, I was sort of hoping your mission would be to wear tutus and play softball but I understand.

I’m proud of you.  You have done so much good in the short time you were here, and I don’t know that you will be able to truly see the impact you have had on so many people.  Your daddy blessed you that your life would be significant, and without enough words to truly express, it most certainly has been and will continue to be. 
I am going to miss holding my little five pound nugget.  I’m going to miss putting you in tiny little dresses and painting your nails.  I’m going to miss bouncing you and feeling you resting on my shoulder. I'm going to miss having arms only to snuggle you.  Please know that if you see us feeling sad, its OK to be sad, to feel sad, to cry, it is a sacred part of this life, it will continue to help us grow closer to the Savior and closer as a family. 

To borrow the words of Elder Holland:

"I testify of the holy Resurrection, that unspeakable cornerstone gift in the Atonement of the
LordJesus Christ! With the apostle Paul, I testify that that which was sown in corruption will one day be raised in incorruption and that which was sown in weakness will ultimately be raised in power. I bear witness of that day when loved ones whom we knew to have disabilities in
 mortality will stand before us glorified and grand, breathtakingly 
perfect in body and mind. 
What a thrilling moment that will be! 
I do not know whether we will be happier for ourselves that we have witnessed such a
miracle or happier for them that they are fully perfect and finally 'free at last.”

Oh how I look forward to that day, we love you Maya, and I say these things in the name of Jesus Christ, Amen.

Following my words, Nate delivered his talk entitled "The Value of Broken Things"
(See next post)

Much love and more next time...

Maya Journey: One Tiny Casket (funeral post 1)

Maya Journey: One Tiny Casket

Hey look at you, all brave, choosing to read something with that kind of title. :)

One thing I learned is that the last thing you want to do when you have to plan a funeral, is plan a funeral. When I was pregnant with Maya, as my due date was approaching I started calling cemeteries and speaking with possible funeral directors about the logistics. I learned about embalming and transporting a body, and all at the price of explaining my situation. It was just too hard so I stopped, but it became even more difficult when Maya passed away.  You are faced with lots of decision making when you are seriously incapable of doing so. I felt 100% decision paralyzed. So naturally there are some things I would have done differently but what can you do?

The funeral director told us that typically people do not have a viewing for children.  This made sense to me at the time, I thought it would be too hard for people to see a little one in a casket. We had a private viewing for family members before the service began. As Nate and I approached the casket at the front of the church and saw our baby girl dressed in white laying still, I was reminded of a powerful truth that I learned at the casket of my father 15 years ago, my baby girl isn't in that casket, just like what makes my dad, my dad, wasn't in his casket.

One of my tender memories from the services is gathering my boys and sweet nieces and nephew before the viewing and explaining to them why Maya looks different. Maya looks different because her spirit has left her body and she is happy and having fun with Grandpa in heaven. One of my regrets with the services is not sharing that experience with more of our dear friends.  When I stood at my father's casket, I knew that he was gone, like for real where did he go? (I wondered) That is when I learned first hand that death is not the end. Someday I will be able to rejoice more than grieve the passing of Maya because I know that we will see her again. Thinking of the reunion with loved ones who have passed on before, makes me feel joy in my heart.

Maya's beautiful casket with the inscription; 
Maya Grace our Mighty Girl

If you ask me, I think Maya's service was tearful but also joyful and I thought I would share it with you, cuz who doesn't like reading about funerals!? (wait...)

If you are awesome like me, you love December at church because that means Christmas hymns!!! Not only does everyone suddenly have a singing voice but they are pretty much the best hymns in the book. One of my favorites is "I Heard the Bells on Christmas Day," so good.  As we were putting together a program for Maya, suddenly all those Christmas hymns we love so dearly fit perfectly for the occasion.  The opening song was one of my favorite hymns: Away in a Manger. Even when it isn't my daughter's funeral the third verse makes me break down and pretty much sums up my prayers.

"Be near me, Lord Jesus; I ask thee to stay

Close by me forever, and love me, I pray.

Bless all the dear children in thy tender care,

And fit us for heaven to live with thee there."

George, my sweet 7 year old, gave the first talk. George prepared his talk earlier that day.  Nate sat with his lap top and typed as George directed, I was standing nearby getting myself ready when I heard George explaining how he felt really strongly that he wanted to share a specific scripture (and Nate agreed to type it) and then I saw George pointing at the screen saying: "Hey this part would actually flow better over here" and then I heard Nate agree in astonishment. (I was so impressed I took a picture:) Later George would proudly share that he wrote and edited his own talk:)

 This is what George shared:

"About eight months ago, my dad was telling us that our baby Maya was going to die and he was saying some really spiritual things. I don’t remember exactly what was said because it was so long ago, but I told my mom and dad that I wanted to write it down so I could teach my kids about what dad was saying.

This is what I wrote:

'It was the hardest thing my parents had ever gone through. My dad had to fire some people. The baby inside mom’s tummy was going to die. God gives us challenges to make us closer as a family. People either choose to get angry at God or get stronger.'

When Grandpa Greg died, mom wondered where people go when they die. Then missionaries came to her house and they told her where people go when they die. They go to heaven and I believe that
because of my mom and dad. If you don’t know whether something is true or not, you can ask God.

James 1:5 teaches us 'If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him.'

I was very sad when I heard that Maya died. When we die we will see our relatives again because of the atonement of Jesus Christ.

I say these things in the name of Jesus Christ, Amen."

Following George's words some of my dear friends sang Silent Night, (another Christmas hymn made even more sacred for us as we celebrated our daughter's brief life just a few days before we celebrate the birth of Christ), we could not help but think of our own tender infant as we heard the words sleep in heavenly peace.

After the song it was my turn to speak. The theme of my talk was "Small and Simple Things" which I included in the next post.

Much love and more next time...

Sunday, January 22, 2017

Maya Journey: The Value of Broken Things (funeral post 3)

Maya Journey: The Value of Broken Things (Maya's funeral continued)
(These are the words Nate shared at Maya's funeral and again at the cemetery.)

Months before Maya was born, Gillian and I went to have an ultrasound checkup and we were overjoyed to learn that we were going to have our first baby girl. At the same time we were shocked to learn that Maya had several health challenges which additional testing revealed all stemmed from a
congenital disorder known as Trisomy 18. Immediately we felt overwhelmed with uncertainty and questions. We didn’t know whether Maya would be born alive or not. We didn’t know how to explain what was happening to our three boys. This was the kind of thing that happened to other families, the kind of thing you witnessed from a safe distance on Facebook. This kind of thing didn’t happen to our family. Not to our daughter.

We learned that if Maya was born, she might only live a matter of minutes and so we carefully planned every possible birth outcome with our Geisinger medical team. If Maya had seconds to live we just wanted to hold her and briefly get to know her. If she had minutes to live we wanted to her brothers to hold her and get to know her. If she had hours I would give her a blessing. If she had days we would take her home. That was our ultimate goal and something we were grateful to eventually do. These past six months with Maya have been an unexpected blessing as we have been able to meet and bond with her.

One thing we learned about her after we put up our Christmas decorations was that Maya loved staring at the lights on our garlands and Christmas tree. Often I would try to bring her head up to feed her or rock her and she would jerk her small frame backwards so that she could continue to stare up at the lights.

(Here is a link to a sweet video of Maya and Daddy)

Maya loved to be touched softly. Rubbing her head and forehead would calm her down and make her sigh happily. Maya knew her mom’s sounds and her touch and would follow her voice by tilting her head backwards and moving her eyes. When I was holding Maya and Gillian walked into the room, Maya seemed to instantly know it and would move her head to look at her, which usually meant Maya would stare at her with her head upside down.

Maya has big beautiful blue eyes and we loved to look right at her and talk to her. In the last few days of Maya’s life we would stare into her eyes and she would baby talk to Gillian and me as if to explain how her day was going or to talk about concerns that were on her mind. We have come to love Maya so much and have experienced a lifetime of love condensed into a six month period.

(Teaching Maya how to Sunday nap)

It is unexpected to think that such a tiny person could make a lasting impact on so many people, but that is exactly what she did for those who served her and shared in her struggle, especially me.

These months with Maya have forever altered my perspective on so many things – I’ll name two:

1. The first thing I did not realize before Maya was born was just how much love and compassion there was in so many people, in all of you. Let me back up and explain that I am from originally from the west coast and two years ago, I took an HR Manager role at PepsiCo’s Gatorade production site, in Mountain Top. When my family and I moved here, I was warned from the person whose role I backfilled – another Westerner – that “Northeasterners can be blunt and cold”. My experience has been that this so-called Northeastern “bluntness” and “coldness” is actually better described as passion and sincerity. Over the past several months my family has been served in countless ways by you awesome Northeasterners – my home has been cleaned numerous times, countless meals have been provided, late night and early morning visits have been made, my children watched again and again there have been too many acts of kindness and generosity to my family to list.

Before Maya was born I had my share of cynicism about the world – too often I looked for ulterior motives. In a world that is driven by the bottom line I grew accustomed to believing that there’s a catch to everything and that people were never kind just for the sake of being kind, but sincere kindness and service is EXACTLY what Maya and I have received from each of you again and again when there was nothing we could give in return.

2. The second thing I have learned from Maya is that God values broken things. Maybe I have OCD or maybe it’s just human nature, but when I see something or someone broken, it is difficult for me to be satisfied until that thing or person is fixed or made right. As a parent and husband I feel secure knowing that I am in control of my family’s destiny; that I can provide for my family; that I can keep my family safe. Maya’s condition was one that, try as I might, I couldn’t fix. Maya’s condition was one that doctor’s couldn’t fix. It is easy to wonder why a loving Father in heaven would allow Maya to be born that way. Why would a loving God create broken people like Maya? For that matter, why would He allow suffering and strife at all? More than ever before, in sharing Maya’s life, I have learned that there is deep purpose in suffering. In Maya’s brief life she influenced for good everyone who met her. It is not merely positive thinking that allowed me to accept and even appreciate that God allows us to live in a broken world with pain, sorrow, and uncertainty where I myself am broken in so many ways. I am grateful to God that he allows his miracles to be manifested through broken me, broken you, and broken Maya. God has calmed the storms in my family’s lives again and again. He provided us peace in the midst of chaos, and hope and purpose in the midst of despair often through selfless acts of service to our family, again, and again. I don’t know exactly why God allowed Maya to be born with so many physical challenges and why he took her so soon, but I do know that He has taught my children, Gill and me more about ourselves and about his love for us and the eternal nature of our family in this way than by any other way. When Maya was born and every month afterwards we celebrated with balloons and cake and we will celebrate again when we are reunited.

(5 month celebration!)

 God teaches our hearts this central truth that families are forever and they do not need to end after this life and for that reason, despite the pain and sorrow of this life we can celebrate and thank God that family and true love never die.

In the name of Jesus Christ, amen.

Following Nate's talk our dear friend Kirk Johnson spoke about how we did not "lose" Maya but that she is ours forever.
Naturally after a talk like that we all sang Joy to the World if you can believe it:) In the songs we chose for the funeral are words pleading to the Lord to be near us and to bless our dear children, words of a silent and holy night, and also words to rejoice.
The timing of Maya's passing causes us to reflect more deeply on the birth and the life of Jesus Christ.  We brought Maya to be buried in California and we had to leave before dawn on Christmas morning, and although I would not have picked that time, what better day to travel to bury my child than on the day we celebrate the birth of He who redeems us from death and sin and carries our sorrow.

Maya's funeral took place 12-22-2016 at LDS Chapel, Wilkes-Barre, PA & her burial was 12-27-2016 at Clovis, CA Cemetery

So many thanks to all who made long and short journeys out to support us at Maya's funeral, open house in PA and as well as the open house and burial service in California.

Much love and more next time.

Sunday, January 15, 2017

Maya Journey: Good Grief

Maya Journey: Good Grief

This is not easy for me to share, and really I think this is more for me than you.   I am giving myself permission to feel grief. I don't want anyone thinking I am skipping around in gratitude (although I am feeling many things simultaneously, including gratitude, I ain't skipping). We returned from our trip to a home filled with empty baby clothes, blankets, bouncers, swings and beds. I don't think to this point I have given enough attention to this side of our experience. I will write about Maya's services a little later, when I feel more capable, but I thought I would share a little bit about the sacred gift of grief because I have to say, I am feeling it. I just read this talk that describes grief as the price we pay for loving someone, and I thought that was so beautiful, and although it hurts, I feel it for Maya.

Sundays, for about 6 months I spent most of them holding my little Maya scarf:) Just me and her, cozy and quiet, sacred even. We bought her an expensive baby swing and she had all kinds of snuggly blankets and loungers but she was most content held on my chest just under my chin, often in my shirt even. Maya had some possible hearing deficits and so I often spoke to her with my lips touching her face, or I would hum a gentle song in the same way. She was always very close.

When I think of this journey with Maya, from that first ultrasound, to this moment, it has been intense.  When we first brought George home from the hospital (our eldest), I remember it was Mother's day actually and he was sleeping and I was staring at him in complete terror. We were so freaked, hormonal, and felt overwhelmingly inadequate.  I remember we rented a movie called Hotel for we rented it on purpose...a movie called Hotel for Dogs, and that is what it seriously was about...not a clever name...also to be clear, we are not super into dogs or hotels.  It was just all we could handle.  We couldn't handle any additional emotions from a movie, we were at full that hotel was...with dogs. Now the need to watch Hotel for Dogs has become code for having a hard day and a need to not feel.

Maya has taught us a different lesson.  

I am reminded of a movie, that I haven't seen in almost two decades so I can't recommend it but the premise is there is an angel of sorts that watches humans but can't experience anything first hand, so he reads a lot of books and meets a woman who can see him and asks her to describe the taste and feel of things to him. So finally he falls in love with her and wants to become human and he learns that he has to literally fall from off a tall building.
Here is a link to that part of the movie (and if you watch it, you should be thankful it is the only clip without Sarah McLaughlin singing that pet adoption're welcome). The part I am taking forever to explain is when he opens up his eyes after falling off the building and he is all beat up and bloody...I think joyfully he says "I feeeeeeel!" (A lot of pain probably, but he could feel).

Our experience with Maya has taught (is teaching) us to feel, and that feeling joy, pain, sorrow, peace, happiness, are all sacred gifts as a part of our journey.
When Maya first passed away I felt like I had 5 arms, because I only had arms to hold her for several months.  Today, my fourth Sunday without Maya, even with so many more blessings than I can count, and with three of them snuggling in my lap, my arms feel very empty. I can't begin to express the depth of my grief and sorrow. It might look like a reverse care bear stare...feeling so many things simultaneously like I might explode. A friend sent us a figuring entitled "courage" and I have joked about how I stare at it in hopes of gleaning magical powers from it. Not courage to be strong, but courage to feel. 

I know I will see Maya again and although my arms feel empty and I long to hold my baby girl, I know God has a plan.  I also know that necessarily, sometimes His plan hurts (abominably).

"Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of - throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself.” (C.S.Lewis Mere Christianity)

 As God's child I feel very similar to George at bedtime bemoaning the night, the long wait for morning.  I have explained to him many times that we need the night, to which George responds, "It's just so loooooong, is there no other way?"

"Some nights are much longer than others, but the morning always follows. Death brings deep sorrow, but our joy will exceed our ability to comprehend when our reunion with deceased loved ones finally comes. Yet peace is not reserved for the next life only; we can feel peace now, even in the very moment we are feeling pain. How thankful we can be for the sacrifice of our Savior and the healing power His Atonement can bring us in spite of our grief. 'Weeping may endure for a night, but joy cometh in the morning' (Psalm 30:5)." (The Healing Power of Grief by Steven Eastmond)

Thank you for all of your acts of kindness, prayers, flowers, thoughts, cards, and many tender gifts. We have felt an outpouring of love and hope to send thank you cards to inadequately express our gratitude the near future:) 

Much love, and more later.