allysonbrown.com – Riding the Wave

The Luckiest, by Ben Folds

I don’t get many things right the first time

In fact, I am told that a lot

Now I know all the wrong turns

The stumbles and falls brought me here

And where was I before the day

That I first saw your lovely face?

Now I see it everyday

And I know that I am

I am, I am the luckiest

What if I’d been born fifty years before you

In a house on the street where you live?

Maybe I’d be outside as you passed on your bike

Would I know?

And in a wide sea of eyes

I see one pair that I recognize

And I know that I am

I am, I am the luckiest

I love you more than I have

Ever found a way to say to you

Next door, there’s an old man who lived to his 90’s

And one day, passed away in his sleep

And his wife, she stayed for a couple of days

And passed away

I’m sorry, I know that’s a strange way

To tell you that I know we belong

That I know that I am

I am, I am the luckiest

I wonder if the full moon has anything to do with my inability to sleep. The past few nights I lay awake, thinking and thinking.

I’ve had insomnia before during stressful periods in my life – I think we all get it. It is a chronic condition these days, but unlike my past experiences not being able to sleep, this time I feel like listening to it. I know that this, too, will pass.

So, under the dim light of a partially-covered-by-cloud full moon, I write.

I’m using the title of my friend Robin’s blog, as I can’t think of a more appropriate way to sum up how we are feeling.

We are consumed by grief. We function, even laugh out loud and make silly jokes, but every minute of every day seems to be filled with our loss of Hannah. I burst into tears, just thinking of her sweet hand, or remembering a fond moment that was so simple – the everyday things for a parent. We all do. Wes said to Grandma Marilyn yesterday afternoon, “I just wish I could see Hannah.” Oh Wes, I am so with you.

Easter yesterday was especially hard. We stayed home, and had such a nice time talking and being with our neighbors. Hannah’s passing has opened the opportunity to be vulnerable in more new ways – with those we don’t know but who live around us. And the wonderful weather and egg hunts brought everyone outside. The same questions we’ll face our entire lives came again. What if Hannah could be with us, not sick? What would she be doing, with her now 17-month-old self? Would she be one of the runners, who goes fast after the shiny eggs? Or would she have been a wanderer, getting focused on the pretty flowers growing in a clump next to an egg? Would she have worn her sweet flowered dress, with a new clip in her hair? Would she have loved the taste of a Peep or more like her brother, focusing only on chocolate? We will never know. And it breaks our hearts.

It is such a dichotomy – this pull between grief and gratitude.

We are still so overwhelmed by the outpouring of love we felt at Hannah’s memorial on Saturday. From the moment we stole glimpses out the window before the ceremony started, of the cars circling the parking lot for places to park, and the fire and Medic One trucks shiny and powerful – we were in awe that our sweet Hannah could bring so many people together from every part of our collective lives.

We are grateful for each person that joined us – and know that between me and Greg, we only spoke with perhaps 1/3 of you. We can’t wait to see the video and read the memory book – more opportunities over time to take in the evening. [on a side note – if you took photos from the evening, could you at your convenience email them to me? We’d love to see you celebrating with us.] We truly thank you for being in our lives, showing up for this moment (even by a card or email if you couldn’t be here in person), and reaching out to us over the coming days, weeks and months as we figure out what our lives look like in this next chapter.

As I’m sitting here, I can hear an Airlift Northwest helicopter pass overhead. We sometimes hear and see them making their way to Children’s Hospital. My heart goes out to the family that in enduring what we know feels like the most excruciating pain. That uncertainty of facing your child’s illness, and not knowing. Not being in control. And yet life does go on, just as everyone says.

I will be making a few more posts on both the website and Caring Bridge tonight. These will be the eulogies written by the doctors we have grown to love over Hannah’s short life. We were blown away by their capacity to try and heal our baby, and equally moved by their capacity to care for us in the process. Their words touched our hearts – and will forever be a part of our daughter’s legacy. Thank you to them and each person that helped us create the exact memorial that we had hoped for to honor our sweet baby Hannah.

I’ll be wrapping up Caring Bridge in the next day or two. I have a great impetus – they are offering the option of creating a book with all of the journal entries, photos, and guestbook write ups. So, by the end of the day on Tuesday, it all goes to print to be forever placed on paper. If you would like to add a message to us – please sign the caring bridge guest book one last time on the guestbook link if you are on CB now, or at www.caringbridge.org/visit/hannahmcnutt. And thank you for all of the wonderful words throughout the past year and a half. I’ll continue to write on www.allysonbrown.com, and you can make comments there and sign up to follow that blog by filling out the email address section on the right. No spam, I promise!

One final note on this entry tonight. Our benches are happening and they are now funded! Thank you for the outpouring of gifts to the Hannah McNutt Memorial Fund. We have raised enough money online and in person to cover the cost of the benches, and the photo attached on this post is the plaque that will be in the bench at Rockaway Beach Park on Bainbridge Island in the next few weeks. Discovery Park will be coming shortly with the same message. These are definitely in honor of Sweet Baby Hannah, but I hope that you know that they are also in honor of you. Thank you. Any funds collected above the bench costs will be used to support organizations that meant so much to us, including Soulumination – the non-profit that took those amazing photos of our family that we have used again and again to tell our story.

Grief and Gratitude. Yep, we are there with you and we get it.

Hannah McNutt Memorial – Jonna Clark Eulogy

Hannah McNutt Memorial – Mark Lo Eulogy

Hannah McNutt Memorial – Sharon McDaniel Euology

Hannah McNutt Memorial – Alexa Craig Euology

Words for Hannah – Janet Smith Euology

Celebration of Hannahs Life – Final Char Barrett

A quick reminder that the celebration of Hannah’s life is this Saturday, 4/7 at 6:00 PM at the Burke Museum at UW. We hope you and your family will join us.

Hannah Vail McNutt Memorial Announcement

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The sunset after Hannah's Passing from the ferry to Bainbridge by John Haskin on 3/21/12 at 7:20 PM

It has been so easy to write about Hannah’s life, but I’ve struggled with how much I want to share in writing about Hannah’s passing. Here goes…

Greg and I knew all along that our job was to listen to Hannah. We continue to feel that our level of intervention and care giving was right for her. Many times (it feels like countless times, in fact), we performed CPR, gave her rescue medications, waited for the medics to arrive to whisk her away in our laps on the gurney. But we also knew that there were clear boundaries for us that seemed to fit with our sweet Hannah.

As we watched the degeneration occur over months with her strength and cognitive capacities, we knew, too, that her inside was degenerating. If her once mobile hands could no longer reach to her mouth to suck her thumb on their own, what was happening to her swallow? Her digestion? Her breathing?

We learned quickly over the past month that everything was slowing down – hypotonia. Low muscle tone impacts both the limbs and outside that we see every day, as well as the inside of our bodies. Concurrent to Hannah’s smile fading, so was her ability to move food. Even though her suck and swallow remained strong, her frequent urinary tract infections, constipation and ultimately inability to empty her bladder were all symptoms of the muscle degeneration.

So, over a few days we knew we were facing issues. She didn’t poop for over a week – yikes. She ate the same, but nothing was coming out (neither urine nor stool). As I wrote about before, we put in a Foley catheter to empty her bladder – it was insane how much urine she was holding. We also started a huge dose of mineral oil to get her bowels moving (Miralax was no longer helping on its own).

On the morning of 3/21, Hannah woke, was very tired, and then had a monster poop. HUGE. Her heart rate and breathing slowed down a lot, but recovered after giving her oxygen. She never really woke, but we’d seen that before. Grandma Marilyn and Aunt Gigi were with us, as was our Nanny Anna and Wes, getting ready to go to school.

Hannah slept all morning, and we weren’t able to rouse her. This was unusual for her. Mid-day, we asked our Hospice nurse Elise to come, as well as Dr. Eldred, our pediatrician and family friend. Both were so wonderful and supportive. By this point, Hannah was breathing in a steady, rhythmic way – like a very loud snoring. Still no arousal, still no response. We decided to remove the catheter – I felt that we could always put another one in, but we just wanted her unplugged so that we could hold her. Elise suggested Greg come home to be with us.

Later in the afternoon, our nieces Carly and Rachel came by on an unplanned visit. We’re so glad they could be with Hannah a bit. Wes came and went, giving Hannah kisses. Grandpa Greg came to coach Wes’ T-Ball team practice, so he, Wes and Anna went out to the ball park. Greg came home.

I took Hannah into my arms and started rocking her throughout the afternoon. I sang to her, and had strong flashbacks of being in the NICU at Swedish with our newborn. After an hour or so, I decided to take her off of the monitor that kept beeping when her heart rate or oxygen levels would get out of range. At that point, I just wanted to be with my baby. I also removed the tube in her nose that allowed us to give her medications if we needed.

For hours it was just me and my peanut. We moved over to the sofa, and I put my feet up and held Hannah, kissing her over and over. She loved to be held chest to chest, with her head on my right shoulder, turned to the side. She was still breathing her steady, loud, raspy breathes.

At some point I began singing to her again – our song – “Annie’s Song” by John Denver. I started singing that to her hours after her birth, and ever since, it has been hers. We fondly call Hannah “Hannie”, so it felt so natural. I’d been singing it to her on and off throughout the day. This time in particular, I was singing it slow and clear, and about halfway through, I felt her exhale. I waited. It felt like forever, but it was only a short time. She didn’t inhale. After another short pause, I called for Greg, who was in another room. He came in, and I could feel Hannah’s heart beating.

Greg joined me on the sofa, and put his hands on Hannah. After a bit, her heart stopped beating. Marilyn came in and helped us understand that we might see a few coughs as her body relaxed. We felt this, and then the most incredible experience. Three times, Hannah sighed with the sweetest little sound – her voice. There was a tone to it – the tone we’d heard so many times when she was content. So soft. So sweet. So peaceful.

Marilyn came in later and we listened with a stethoscope and knew she had passed. We were quiet. We all felt so blessed to have been a witness to this amazing passing. I can’t put into words what an honor it was to hold Hannah as she gently crossed over. Unbelievable.

A shortwhile later, Wes, Anna and Grandpa Greg came home from T-ball and got to see Hannah. They burst into tears – it felt so sudden to them. After a bit, Anna and Marilyn both commented on the sunset. They went out and took some photos. The sky was gorgeous. As Auntie Cindy said, “it was like Hannah opened up a box of watercolors and painted the sky!”. So true.

We sat for a few hours together, holding her and stroking her head. I didn’t want to get up, for fear of losing that warmth. And even more, cracking open – unraveling after so much lovely time, just me and Greg talking while I held our baby.

On the one week anniversary of Hannah’s passing, I woke up really sad. Every morning, I’ve been feeling Hannah’s presence, then realizing that she isn’t with us. On this morning, the absence was profound.

My sister Angela and her 3-year-old daughter Katie were staying with us from California, but I couldn’t shake the tears. Anna our nanny helped Wesley get to school, and I encouraged Angela to take Katie to the zoo. When the house was quiet, I had a nice, long cry. I felt so sorry – for myself, for Wes, for Greg, for Hannah. I felt angry for the first time since Hannah’s death – so mad at the situation.

I decided the best thing to do was to go for a walk at the beach. I decided to go to Discovery Park, the same place I went for Hannah’s first birthday. It took me about 30 minutes to drive to the park, and I cried the whole way. It was pouring and windy, and I thought that I’d likely get soaked, but decided to continue to the park.

When I arrived at the parking lot, I was the only car there. Usually the park is filled with people, but the rain and cold scared them off. I checked email on my iphone, and plugged in my headset to listen to music. I had planned to listen to Adele the whole time – good cry music for sure. When I went to change the playlist, I couldn’t adjust it. The music was on the Black Eyed Peas, one of Wes’ favorites for his impromptu dance parties. I tried over and over, and couldn’t change the artist. So, I decided that I was meant to listen to this silly music.

I laughed from the minute the first song started. I don’t think you can cry and listen to will i am. I have never actually listened to the lyrics before, but I am so glad that I did. Hilarious (and raunchy!). I walked with a big smile on my face. Not what I was expecting, but such a fun, fast-paced soundtrack to my walk.

Once I started walking, the rain stopped, and the sun started peaking through the clouds. Everywhere I looked, the sky was dark grey. But on this walk on the far west shores of Seattle, the rain slowed and sun tried to come out. Amazing Hannah!

The sky over Puget Sound at Discovery Park

Discovery Park is an old military base turned nature preserve. I walked past the old chapel and beautiful officers homes to the rolling fields that meet the bluff above the beach. As I walked, I found beautiful vistas with benches looking toward Bainbridge Island. I took a lot of photos – perhaps one of these could be the bench for Hannah’s Memorial?

The bluff transitions into a trail that winds its way to the beach. As I smiled and listened to some pretty amazing songs (I think “Latin Girls” had the best groove and the worst lyrics), I thought about all of the things I used to do and stopped doing over the past few years – most of all, hiking. I remember bringing our dog Maggie to Discovery Park as I trained for my trek in Nepal. She and I went almost every weekend, and often took this same trail down to the beach and back up. I made a vow to myself to begin hiking again, and to bring Wes to this trail.

When I got down close to the beach, I could see it was a fantastic low tide. The sun was still peaking through the clouds, and I could look across the sound and see the area where our house is on Bainbridge Island. Our house is easy to spot from across the water by the marker of the homes below it on Broomgerrie. There is one house in particular that is a large, white lighthouse – it is easy to see with the naked eye.  I liked knowing that I couldn’t get any closer to the island than this point.

As the trail ends, you walk along the road to the entrance to the beach. I realized as I got there that there are no benches on this part of the park. Aha! THIS is where Hannah’s memorial bench should go. Perfect. I can imagine a mother or grandmother resting on the bench as the kids play on the beach. It couldn’t be better.

the perfect spot for a bench

I went out onto the beach and found a big stick. On the sand, I wrote HANNAH with a big heart around it. I stayed on the beach awhile, taking pictures and thinking of our family. It felt so right to be down there, sending my love up to our little one.

I followed the trail back up through the woods, appreciating the hike and realizing that I’m really out of shape! I was so glad that I wasn’t listening to Adele – I needed the fast paced music to keep me going. “My Hump” fit the bill perfectly.

When I got back to my car, it was pouring again. Tons of rain, and huge gusts of wind.

I am so glad that I listened to myself, sought refuge at the beach and once again had to let go of my expectations (sorry, Adele!).  Ah, Hannah. Continuing to teach me these great life lessons. Thank you.

Later in the evening, Wes had T-Ball practice. I joined grandpa (aka Coach), and had a fun time with all of the kids. At one point, it started hailing. Hard. The kids ran for the big tree at the side of the field. Wes said, “I think this is Hannah playing a trick on us!” The hail stopped, then started again. We all laughed and once again went under the tree.

At 7:02, grandpa, Wes and I were driving home from practice. We were wet, and hungry, and we all looked up at the sky, remembering the beautiful sunset from last week.

Oh, we miss Hannah, but are so grateful to find her in nature – everywhere we look.

We have finalized the plans for the Celebration of Hannah’s Life on Saturday, April 7 at 6 PM. We are so glad that we can host it at the Burke Museum at the UW. This wonderful place is filled with dinosaur bones, artifacts, local cultural history and just feels really, really good. We want children at the event – the sounds of laughter will make this memorial special for all of us.  I know we’ll be holding Wes closer than ever.

The only downside is that we have to wait until the museum closes for the day to host our party. At 5 we’ll start setting things up, and our hope is to have delicious Cupcake Royale bring their cart and serve our favorite – Baby Cakes.

The celebration for Hannah will include songs by our friend Johnny Bregar – if you don’t know his music, he is one of the most talented children’s musicians around, and his music has special meaning to us and has been our favorite throughout Hannah’s life.  http://johnnybregar.com/

The service will begin at 6, but feel free to come a little early and wander the museum – we have the entire main level to explore starting at 5.

Attached is the flyer announcing the memorial – please share with others that you think might want to join us.

Hannah Vail McNutt Memorial Announcement

We’re working on the details for Hannah’s Celebration. Hoping to plan something for 4/7 in the late afternoon in Seattle (we want to have a celebration that includes all of our friends, family and children – now is a time to hold our children even closer!). Please save the date and we’ll let you know about the details.

Attached is the formal obituary. We love, love, love our sweet Hannah and miss her terribly.   Hannah Vail McNutt Obituary FINAL

We set up a memorial fund at USBank in honor of Hannah.  Donations can also be made online by clicking the below button.  The funds will be used to support organizations that helped our family, and we plan to create places to rest and view the Puget Sound on Bainbridge and Seattle in honor of Hannah.  We hope to have benches on either side of the water.

We are deeply saddened to let you know that Hannah passed away last night at 7:02. That beautiful sunset we enjoyed last evening? It was her making we’re quite certain. Hannah couldn’t have had a more peaceful passing – in Allyson’s arms while singing to her.

We’re in the process of writing more, but for now, we wanted to let you know.

Thank you for all of your love and support. We’ll be seeking more as we navigate our lives going forward.

With love,

Allyson, Greg and Wes

It as been awhile since I pulled an allnighter.  Hannah is finally asleep – she was uncomfortable all night.

The time gave me the opportunity to play with plugin apps for this site.  I think I figured out how to link updates to Facebook.  Let’s see if this worked.

Hannah had som phenobarbital and is finally asleep. I’m right behind her – good night.