Tuesday, December 20, 2016


The beautiful lyrics in Les Miserables' "Suddenly" capture my feelings today and my love for my daughter Maya Grace who passed away peacefully on Sunday morning.

In the song, Hugh Jackman, who plays Jean Val Jean does an excellent portrayal of a man who is in the thrall of emotions over the prospect of being a father for the first time.

Maya Grace is my first and only daughter and I felt many feelings at a poignantly deeper level when she was born: amazement, grace and love. In her short six months of life she has brought so much love, light, and hope into my life. The lyrics to this song are beautiful and well express how Maya Grace impacted me as well as many who have witnessed her life and struggle. I am so grateful to God for allowing me to be her father and for teaching me through her. The lyrics to "Suddenly" are below:

Suddenly you're here
Suddenly it starts
Can two anxious hearts beat as one?
Yesterday I was alone
Today you are beside me
Something still unclear
Something not yet here
Has begun.

Suddenly the world
Seems a different place
Somehow full of grace,
Full of light
How was I to know that so much hope was held inside me?
What has passed is gone
Now we journey on through the night

How was I to know at last
That happiness can come so fast?
Trusting me the way you do
I’m so afraid of failing you
Just a child who cannot know
That danger follows where I go
There are shadows everywhere
And memories I cannot share

Nevermore alone
Nevermore apart
You have warmed my heart like the sun.
You have brought the gift of life
And love so long denied me.

Suddenly I see
What I could not see
Something suddenly
Has begun.

Thank you to all who have shared Maya's life with us.


Monday, December 19, 2016

Maya Journey: Our Mighty Girl

Maya Journey: Our Mighty Girl

I'm not sure if I have shared her nickname but she has most certainly earned it, Maya Grace, our Mighty Girl.

Last week our loved ones at Geisinger from the Janet Weis Hospital partnered up with the good folks at the Great Wolf Lodge in the Poconos and sent us on a very special family vacation.  With it being RSV season and Maya's "difficulty" riding in the car (she would scream out a snot beard every...single...moment in the car), we didn't get out much as a family, and honestly I dreaded the trips to drive the five minutes to Ollie's preschool.  So we took turns, one of us would stay home and snuggle with Maya during this event and the other would take the boys to that event and so on.  It was really enjoyable snuggling with Maya in a quiet house often watching a chick flick and painting nails, and we also missed being together as a family, not in our jammies.  It's sort of like Christmas every day, after a while it's like ok maybe I should wear grown up clothes.  But of course after a while you are like...no I definitely want my jammies back...life is hard:)

So Mindy our dear friend told us about the surprise trip and we were so excited!  I literally packed an entire suit case with just fun snacks, bought everyone Christmas jammies (I have a complicated relationship with jammies I guess), filled the car with baby gear and we were off.  Our sweet hospice nurse met us at the resort and for a couple hours each day sat with Maya in a seriously luxurious suite, she said it was a real hardship:)

Our amazing nurse Marianne and Maya 

For the first time in a long while we were able to just let go of all of our worries and stress and just have fun together as a family.  It was such a special trip for us because we were all together.

My favorite was story time in the grand lobby in the evening with ALL my kids, ok so we are in our jammies...also a bonus, out and about, but we could keep our jammies...see? perfect.

They even made it snow in the lobby. The whole trip was just so magical and fun. I could pretty much be the spokesperson for the place.  We do not know how we will be able to thank our friends at Geisinger for thinking of us and setting this up for our rascal family.

We will treasure the time that we had together on that trip especially.  The past almost six months have been admittedly sometimes stressful and harrowing, sometimes hectic and sleep deprived, sometimes with less patience for that rowdy crew pictured above then I would like (one time Henry threw a diaper at my face and I screamed like Satan), sometimes hilarious and loud, sometimes messy, (most of the time messy), sometimes filled with faith and understanding, sometimes dark and dreary, sometimes sleep deprived (wait did I say that already?!?), sometimes filled with song, sometimes filled with sorrow, but often filled with joy and thankfully grace.

Saturday evening after tucking the boys into bed we sat on the couch with Maya and a couple glasses of Martinelli's and clanked our drinks together holding Maya and relaxing together.  Maya, as she often does fell asleep in my arms and began to dream and I whispered her name and she smiled.  We put her to bed and said goodnight.  A couple hours later I checked on our sweet Maya baby who had taken her last breath and slipped peacefully into eternity in the early hours of the sabbath.

Nate and I held our sweet girl and wept...

and wept...

and wept.

Marianne (our angel nurse and dear friend) joined us in those early hours.  We woke the boys up and they each gave their sweet Maya baby one last kiss and said goodnight.

I wrapped her in her soft pink blankey and I watched as Nate walked her out with the funeral director under an umbrella into the rainy night. It will be hard to forget what that feels like.

We just love our Maya baby so much.  Oh how thankful we are for the lifetime of love we fit into six months.

Many of you did not have the opportunity to meet Maya in person and so I leave you with this little video:

Meet Maya video click here

So much love, until next time.

Sunday, December 11, 2016

Maya Journey: Maya's Birthday!!! (Part 1)


Well I'm writing about the day Maya was born five months after the fact so I will do my best to get the deets correct. ****I should also add that it has taken me a while to write about this because it was such an intense experience.  Also there is a little bit of TMI in there but you'll get over it:)

Towards the end of my pregnancy it was getting pretty uncomfortable to say the least. I had developed a condition called polyhydramnios, which meant I had a lot of extra amniotic fluid. The top of what is considered normal in the amniotic fluid index is 24, I would tell people I wasn't sure what the measurement was but that it must be in gallons. My number was 36 and toward the end it could have been in the 50s but I'm just guessing because I was literally having nightmares about exploding, that and I was scaring small children and was outgrowing maternity clothes and shoes! As I progressed I could feel Maya moving less and if I ever dropped anything on the floor it was gone forever. 

I remember my last ultrasound, there was a gargantuan belly and a teeny baby. It was a Friday afternoon and we were the last appointment.  Nate had to work so he met me there later. Dr.B and Allison sat and talked with me about how everything was going and gave us lots of compliments and talked about palliative care and how none of the other families that made the same choice as us ever regretted the decision. We also talked about how in my culture children born with disabilities are thought to have been especially valiant in the pre-mortal existence. Children with disabilities are so awesome they only need to gain a body and in Maya's case return home to Heavenly Father much sooner. We also talked about the sacred privilege and honor in parenting such a spirit. 
Later I learned of scary complications and scenarios that come with my condition.  If my water were to break on its own, for several reasons I was instructed to call an ambulance. I was pretty scared,  super super uncomfortable and even more excited to finally meet Maya. 
I remember telling Mindy that it would be so comforting if I could just be at the hospital like a hotel until Maya was born because I was so nervous. 
Perhaps that day or not long after that I was instructed to go to labor and delivery to be checked out.  Finally Nate finished up at work and we all loaded up in the van and headed to Danville.  That evening I was admitted because my blood pressure was too high...I was thrilled to stay at the hospital like a hotel just as I had wished,  this would be the first of many tender mercies. The boys were picked up by my dear friend Rebecca whom I literally had asked to be my on call labor day hero if things went unexpectedly,  and she certainly was and the boys had a blast. 
The plan was that I was to be induced at 39 weeks and my siblings Tom, Courtney, and Becky were going to come and be there to meet Maya and take care of the boys, it was going to be awesome,  but plans changed,  Maya would be born almost two weeks earlier.

I ordered a special gown to wear on the big day. I'm only 37 weeks here people!

The following morning it was decided I needed to be induced!  Finally we would get to meet Maya! I had packed decorations for the room to help welcome Maya and to make a joyful place for us to celebrate her with the boys.

Latex is not allowed at the hospital but everyone was bending over backwards to make things special and they just put an allergy sign up on the door. Mindy and Allison helped to decorate and actually when Mindy heard I was going to be induced she of course went on a 5am shopping trip to pick up all kinds of memory making crafts for foot prints and gifts for the boys. 

Excited for the big day we had been planning every detail of for months.

Nate and I did our normal thing where we crack jokes and reminisce about other times we cracked jokes. (It's what we do.)

Several hours went by and things were not progressing as quickly as hoped.  This was not uncommon for me but this time I was foregoing the epidural in hopes of speeding up Maya's seemingly treacherous journey. The doctor on call talked about how they wanted to break my water,  which typically is not a big deal but in this case it meant a tsunami, and more scary scenarios as a result. So naturally we were scared and not sure we wanted to do that so we called Dr.B, who is like our Dr. Dad, we really trusted him and wanted his guidance. After talking to him and praying we decided to just wait and see.  They took me off of the Petocin and I even got to eat and relax. After a couple hours the doctor checked me again and I had majorly progressed, everyone cheered because also Maya's head was down now and would prevent all those scary scenarios from being realized.  More tender mercies.  So we were getting ready to walk the halls again and I was excited for my water to break like a tidal wave and make a big scene but I didn't even make it to the door when it broke! It was a tsunami and it startled me so much I screamed. It was epic.  Back in bed and on Petocin I went. 
Shortly thereafter my sister Becky (on the spot dropped everything and bolted the 8+ hour drive from Detroit) and our very brave photographer arrived and I was so happy.  Tom and Courtney had planned to be there but were not able to get away as quickly.  
As I laid on the bed I felt like I was peeing and could not stop and I laughed and told Becky and then it seriously was not stopping and then we heard it pouring onto the floor!  I'm not exaggerating people,  then Becky started screaming in amazement and it still did not stop.  Our nurse and now my regular doctor (another tender mercy)  came in for the excitement. 

We were all laughing our heads off.  

So like angel nurses do they tried to clean me and the bed,  but it just would not stop!!! I was sure then that I had been right,  it WAS measured in gallons. 

Not long after that things stopped being funny and I told myself over and over I can do anything for one minute. Nate held my hand and another nurse and Mindy surrounded the bed and offered support.  At one point Maya's heart rate dropped very low (this was predicted and some docs recommend not having the heart monitor on because it can be stressful). We were aware that often Trisomy babies do not survive labor.  I began to break down and Nate held my hand tight and stroked my hair. At that point Mindy also whispered in my ear that I am strong,  that I can do this,  and that Maya needs me to be strong. I felt she was right. That room became a very sacred place. I remember closing my eyes and trying to communicate with Maya's spirit telling her to hold on. 

The pain became so strong and unrelenting when the contractions were right on top of each other. 

Minutes later along with lots of commotion  (let's just say the last five minutes or so I did not keep my cool:) Maya was born...alive!!!  She was a whopping 3 lbs 14oz!

Finally we met and could finally hold our sweet baby girl...did I say finally?... Finally. 

 Rebecca had been waiting with the boys and not long after that they could finally meet their baby sister (finally). Many tears were shed.

A few weeks earlier I had asked a friend of ours if he could be there for Maya's birth (shortly after) to help Nate give her a blessing but they had plans to be out of town for a few weeks during that time on vacation so he would not be able to be there. Well he just happened to be working at the hospital that day miraculously and was able to be there for the blessing. (More tender mercies).

I held Maya in my arms as her daddy and our friend brother Johnson laid their hands on her head and pronounced a blessing. 

One of the things promised to Maya was that her life would be significant. Certainly and without the right words to truly express, her life has been.

See that wasn't so bad.

More next time...