Wholehearted Parenting

Hannah HandI was just searching our computer looking for an old email message. What came up instead was an email that had the attached story.  What Happens_Die

After Hannah passed away, I heard the story of the soul’s journey as told by Kafka from a few folks.  Here it is again, written so well.  We have always said that Hannah’s life was so profound and she did such meaningful work in her short, 16 months.  I love this explanation (“And then Kabbalists said, when a young child dies, don’t cry too much, because in all likelihood that soul needed to come to earth for just a brief time in order to be purified so it could join God in paradise.”) Not a day goes by that I’m not in Hannah’s presence – her life is still being lived by all of us who were touched by her.

Maura 2 monthsLife is very full for us.  Maura is a vibrant, dynamic little being – she is already showing us her energy and strength.  At 10 weeks old, she is working very hard on being present – from following action with her eyes, to finding great delight in sitting up on her own, working on holding fingers and standing, and just starting to explore her voice.  She thinks Wes is just about the most awesome person ever.  Wes and his friend carpool home each day, and literally argue about who gets to sit next to Maura.  They both have their tricks for how to get her attention, stop her from crying, see if she’ll smile, etc.  It is very sweet to see this bond already so deep.

Marilyn camera 12-13 050Every day I am reminded of what a joy and trial it is to be a parent.  The work is so hard at times, and yet the rewards are so great  – often from the simplest things.  I can stare for hours at Mimi’s sleeping face, and am so grateful to nurse her and feel her sweet skin against mine.  I am in awe of Wesley’s wisdom at 7 years old – he connects to concepts that I honestly don’t think I was even exposed to as a child, and he asks deep, thought provoking questions that lead to conversations I love having with him.  And, like most parents these days, we deal with screen time limits, expectations, and all of the other realities of parenting.  Balance is never easy, and I struggle on a daily basis with these things.

I was reminded this week of a book I read a year or so ago by Brene Brown, called “Daring Greatly“.  The focus is on vulnerability, and it hit home with me in many ways for stepping into life.  One of the things she discusses is wholehearted parenting – being fully present and available for your children.  Being vulnerable and allowing and encouraging that in our families.  I found online this great image of her “Wholehearted Parenting Manifesto.”  I keep it hung up in my closet so that I can see it every day.  I am reminded of this again as I think about our sweet, strong-willed Mimi and our future together.

Wishing all of you happy holidays and good times with your families.  I’m ever so grateful for ours.

 

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Our Sweet Hannah is Three

Bella Baby Hannah and Mom black and white0001Today is Hannah’s third birthday.  At 12:42pm, we welcomed our wonderful baby girl into the world.  Not a moment goes by that we don’t think of her and feel her deep meaning in our world.

Recently I was looking for our Flip Video camera (a little handheld video device that we used a lot before we got Iphones).  I found it in a box, and turned it on to see if it still worked.  There were 29 short home videos on the camera, most of Wes being silly with dance parties, etc.  The last 2 videos were taken on 11/4/10 – one during Hannah’s birth and the other about 30 minutes after she was born.  We were so happy – Greg and I are beaming with our sweet little girl in our arms.  I remark on the video how surprised I am with how perfect she is.  I can’t believe our good fortune.

Now I look at this video and hear those words with a whole new lens of what good fortune is.  We were so blessed to have Hannah in our lives.  The heartbreaking reality of her disease made each day with her so very, very precious.

It is hard to believe that we’ve now had Hannah in heaven longer than we had her with us on earth.  She continues to be our teacher, providing wisdom and grace far beyond what I ever imagine possible.

Yesterday Wes, Maura and I were walking home after brunch.  We were talking about Hannah, and within a minute a hummingbird came to the bush in front of us and sought out the few flowers that were still there.  Our little sign from nature that Hannah is with us.

We love you and miss you sweet Hannah.  Today we will go to your bench, send up balloons (including one from your baby sister) and again thank you for being a part of our family.

Bella Baby Hannah and Mom black and white0003

 

And our song for sweet Hannah…

Annie’s Song by John Denver

http://www.values.com/inspirational-stories-tv-spots/122-Annie-s-Song

You fill up my senses like a night in a forest
Like the mountains in springtime like a walk in the rain
Like a storm in the desert like a sleepy blue ocean
You fill up my senses come fill me again

Come let me love you let me give my life to you
Let me drown in your laughter let me die in your arms
Let me lay down beside you let me always be with you
Come let me love you come love me again

 

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Three Weeks with Maura

14-14_brownWe have had a whirlwind three weeks with our sweet girl  Maura.  She is a strong little person – physically, emotionally and spiritually! 

Her body is so strong – the crazy kicks and movements I felt while pregnant are now evident during Mimi’s waking moments.  She is always going, hands moving, legs peddling, wiggling and holding her head up as high as she can.  This little one is a mover and shaker – so glad to have Wes here to help keep her company!

She also has a very strong personality – we’re liking the dual name approach to her – the serene, calm Maura meets the wacky, feisty Mimi – she is either off or on – and when she’s on, watch out!  She is quick to anger and thankfully quick to quiet.

And spiritually she seems to be a very old soul in this little, new body.  Already she is looking deeply into our eyes, able to hold her gaze for a long time.  She is a rich little person with a story to tell!

We’ve had a lot of visitors – family and friends coming to meet our new little one and we are so grateful for the support.  Our friend Tracey set up a mealtrain for us – if you live locally and would like to drop off a meal, we’d love it and would love to see you.  You can sign up here https://www.lotsahelpinghands.com/c/709881/

We already have hundreds of photos of Maura and our family.  Below are some of our favorites from the past few weeks.

Please reach out – we’d love to hear from you!

baby Maura 008

The morning of Maura’s birth

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Maura’s first photo

  06-06_brown 07-07_brown 08-08_brown 09-09_brown 10-10_brown 11-11_brown baby Maura 010 baby Maura 012 baby Maura 013 baby Maura 024 green camera 10-13-13 007 green camera 10-13-13 037 green camera 10-13-13 044 green camera 10-13-13 055 green camera 10-13-13 067 Iphone 10-12-13 004 Iphone 10-12-13 015 Iphone 10-12-13 020 Marilyn's Camera Maura 9-13 013 P1110070 mommy cam Marilyn's Camera Maura 9-13 098 Marilyn's Camera Maura 9-13 091 Marilyn's Camera Maura 9-13 069 Marilyn's Camera Maura 9-13 045 Marilyn's Camera Maura 9-13 040 Marilyn's Camera Maura 9-13 033 Marilyn's Camera Maura 9-13 022

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High Tide

Kingsolver quote and photos Well, we’re entering the final stage of bringing our new baby into the world. This little being is very active – it has been from the beginning. I’m in awe of the movement – the patterns of wake and sleep; the response to stimulation – voices, scents, what I eat, temperature; the way it is working itself down to join us very soon.

We’ve been nesting – cleaning the garage, going through closets, doing some home improvements to make space for this new little person. Today I was going through the bookshelf in our bedroom, looking at all of the books I collected during Hannah’s life and shortly after – books on grief; on loss; on being vulnerable; on karma. Tucked into some of the books were notes, cards, letters. Most of these I have placed in a special box where we’ve collected so many of the wonderful words that you shared with us as we grieved the passing of our sweet baby.

Today I found this picture from a magazine – with the image of the woman running into the surf, facing the waves. What perfect timing. The waves of labor should start pretty soon – I can tell that my body is ready. The baby seems ready, and our family is ready, too. Grandma Yellow Trucks is here now, Wes’ best pal and confidant. The fridge is stocked, laundry is done. The sun is out and the moon is full.

As the quote says, “High tide! Time to move out into the glorious debris. Time to take this life for what it is.”

We’ll let you know when our newest family member is in our arms. Can’t wait to look into those beautiful eyes and get to know this new, precious life.

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High Tide

Kingsolver quote and photosWell, we’re entering the final stage of bringing our new baby into the world. This little being is very active – it has been from the beginning. I’m in awe of the movement – the patterns of wake and sleep; the response to stimulation – voices, scents, what I eat, temperature; the way it is working itself down to join us very soon.

We’ve been nesting – cleaning the garage, going through closets, doing some home improvements to make space for this new little person.  Today I was going through the bookshelf in our bedroom, looking at all of the books I collected during Hannah’s life and shortly after – books on grief; on loss; on being vulnerable; on karma.  Tucked into some of the books were notes, cards, letters.  Most of these I have placed in a special box where we’ve collected so many of the wonderful words that you shared with us as we grieved the passing of our sweet baby.

Today I found this picture from a magazine – with the image of the woman running into the surf, facing the waves.  What perfect timing.  The waves of labor should start pretty soon – I can tell that my body is ready.  The baby seems ready, and our family is ready, too.  Grandma Yellow Trucks is here now, Wes’ best pal and confidant.  The fridge is stocked, laundry is done.  The sun is out and the moon is full.

As the quote says, “High tide!  Time to move out into the glorious debris.  Time to take this life for what it is.”

We’ll let you know when our newest family member is in our arms.  Can’t wait to look into those beautiful eyes and get to know this new, precious life.

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Cracked Open

IMG_1491Today I started a prenatal yoga series.  I’ve been hesitant to start doing yoga again.  I’ve tried a few times since Hannah passed away, and each time it leaves me so vulnerable – I feel so exposed and the waves of emotion seem to hit hard and strong.  When I’m doing yoga, I can’t get Hannah out of my mind.  She is so present there – in each breathe; in each pose.  I feel her strong presence and a love for her that makes my heart ache.

Today was no different.  The yoga class brought up my deep connection to her, and my fears surrounding the little life that is growing.  I know this baby is healthy.  I know that what happened to Hannah was a “spontaneous mutation” – that the odds of winning Power Ball are higher than having another situation like that.  And I know that we have done everything in our power to have a happy, healthy baby.  Yet still…

I’m going to keep going to yoga.  I’m going to let myself sink into our sweet Hannah, feel the waves, and let the baby we are welcoming feel them, too.  Over time, I know that integration will happen and the emotions I feel in yoga will transition to a sense of peace.

Wes fondly refers to the baby as “George,” so now that is our pet name for the little peanut.  We don’t know the gender, and I’m hoping my will power will hold out and we’ll wait to meet him/her in September and can celebrate not only the baby’s health, but also get to experience the wonder of learning if it is a boy or girl at that time.

While in Shavasana (resting pose at the end of the class), I had Hannah and Wes on my mind, and the baby dancing in my belly.  I could feel the thumping kicks of George’s little feet and I felt the grace once again of this life that we all get to live.

I came back to my office and saw a post on Facebook from Seattle Children’s with a new video made by all the volunteers that do so much to raise needed funds for the organization.  The song, “Aint No Mountain High Enough” is exactly how I feel about my children.  I would do anything for them.  Include crack open so that I can be fully present for them and for us.

http://www.youtube.com/watch?v=LgC9TyWmXPY

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Mother’s Day Love

1000000256Grateful for family this Mother’s Day.  Generations together, celebrating our lives, cooking dinner with each other, growing with every experience we share.

Hannah is as present as ever…like every day, we look at her photos, remember her sweet life and our wonderful memories of our amazing girl.

Allyson ScottsdaleWe carry her with us as we celebrate the upcoming arrival of the newest baby McNutt, due September 28.  So far, baby is healthy and active – I’m feeling great and we are basking in the glow of knowing in about 19 weeks we’ll get to once again hold a little one close.  As the Beatles sing in “Golden Slumbers,” it feels like going home.

Golden Slumbers

We’ve kept this pregnancy quiet but with great news from our recent ultrasound, we are happy to let you all know our family is growing.  We’ll continue to post as we get closer to our date and are as always, thankful for your love and support. 

Sunset in ScottsdaleGreg and I recently had the opportunity to get away together for a long weekend in Arizona.  The beautiful Scottsdale sky gave us warm, luxurious days and glorious sunset-filled evenings.  We drank it in, honoring all that we have experienced over the past few years, growing together and loving our kids. 

Each sunset still brings us to our sweet Hannah – we are instantly connected to her.  As I hiked Pinnacle Peak one very warm morning, I was followed by yellow and white butterflies – and as always had a great little conversation with our girl.

 

 

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The Dance

balloon being releasedHannah is with us – every moment of every day.  I can still feel her, imagine her sweetest soft skin and her little kissable mouth.

 One year ago tomorrow she passed away.  I have been thinking so much about the fact that she would be just over two years old right now…but it feels like it has been a decade since I was pregnant with her.  At the same time, the year has flown by – I can’t believe it has been a year.

 What seems an amazing, perhaps ironic twist – we just learned that the genetics team at Seattle Children’s Research Institute has been able to diagnose the gene mutation that caused Hannah’s sickness. 

 For a year, the team has been studying her gene sequence (and ours as well) to see if we might get an answer.  We have it.  We meet with Bill Dobyns, the researcher that has been leading the effort next week to get the details, but it appears Hannah had a “spontaneous mutation” of gene ATP1A3.  They know that it was a spontaneous mutation rather than a passed on condition because neither Greg nor I have the mutation.  Thankfully that means that Wes does not have it either – somehow this gene mutated in Hannah.  I’ll share more in the coming weeks as we learn, but attached is a link to an article that helps lay things out in the simplest terms I could find:

http://www.dukehealth.org/health_library/news/gene-discovery-set-to-help-with-mysterious-paralysis-of-childhood

 What is very unusual for us is that the onset so early in Hannah’s life is not a common trait of this genetic mutation, nor is the severity of the condition – in fact from what we understand, the way that this mutation attacked Hannah has only been seen in mice and not documented in humans.  There are not currently any therapies to treat this disease, but each case that is diagnosed helps to deepen the understanding and leads to new research.  Perhaps a family that has a child with similar symptoms to Hannah’s can test for this gene mutation and have an answer to what is happening to their child.

 I have many times referred to Emily Rapp, the mother of Ronan, a little guy with Tay-Sachs disease (she is the author of the “Dragon Mom” article).  After his diagnosis at 9-months-old, Emily wrote a blog about her experiences knowing that her son would not survive.  She has turned her blog into a wonderful memoir, “The Still Point of the Turning World”.  I have the book but am not able yet to read it fully.  I have read and listened to a number of her interviews, and she spent time with NPR’s Terry Gross this week talking about her book and experiences.  http://www.npr.org/2013/03/18/174419920/still-point-a-meditation-on-mothering-a-dying-child

 Having a diagnosis gave Emily time to process letting go – we had that, too, but it took us much longer to get to a place where we knew we would focus on Hannah’s comfort because nothing else was working.   For us, time was truncated into a few months of comfort care.  After a year of trying every type of seizure medication, we couldn’t help control her epilepsy.  Now we know it was due to this gene mutation.  

 We hope that part of our sweet baby Hannah’s legacy will be to help document this gene mutation, and offer another clue for Neurologists to investigate when a baby presents like ours.

 So tomorrow, we hold each other close.  We go to the edge of the water to Hannah’s bench, look out to the city, release balloons with our special messages up to heaven, and continue to dream about our wonderful, amazing baby.

 This little girl below moved me – I don’t even know where I found this image, but it was in my photo stream on my Iphone as I was browsing today – I must have saved it close to a year ago.

This is how I picture Hannah – in a field of flowers playing and dancing – our sweet 2-year-old lover of life.

Hannah at 2

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Valentine’s Day Love

 IMG_1990

Hannah is always on my mind, but this morning, I am feeling a longing for her that is again bringing me to tears. 

I’ve been so busy in our lives these past months, just like labor and delivery, I can remember the good times, but so much of the dark, sad days are there, but not at the surface.  Thankfully our recall brings us to the good times.

I was searching for this photo on our computer today and found hundreds of videos – some of Hannah, but more of Wes that first winter of our sweet girl.  I see in these videos not the trauma and heart ache, but the fun – the love that we all shared.  It warms my heart, and I know that we had such wonderful times together, even in the storm of our daily lives.

Hannah Talking Video February 2011

 

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Sweet Child o’ Mine

Christmas at SCH 20100001 What a month!  Life has been at a break-neck pace the past weeks, between holidays, Wes’ 7th birthday, time with family and the One Call for All campaign I’ve been leading (which broke $1 million last week!).

 Wes and I have been doing dance parties a lot these days – we put on Pandora, choose “Rock You Like a Hurricane” station (thank you Scorpions, or as Wes calls it, “thank you Godzilla music!”), and dance around the living room.  Inevitably the playlist goes through the classic 80s rock hits, with a little Bon Jovi, a lot of one hit sensations, and a fair deal of Guns ‘N Roses.  I always get a little nostalgic when I hear “Sweet Child o’ Mine”…brings me right back to those fun days at Alpha Phi.

 I don’t think I’ve ever listened to the lyrics until this recent reconnection – I always hear Axl’s voice and the guitar solos.  I’m grateful once again for Wes helping me connect in ways I never imagined.

 She’s got a smile that it seems to me
Reminds me of childhood memories
Where everything was as fresh as the bright blue sky
Now and then when I see her face
She takes me away to that special place
And if I stare too long, I’d probably break down and cry
Whoa, oh, oh, sweet child o’ mine
Whoa, oh, oh, oh, sweet love of mine
She’s got eyes of the bluest skies
As if they thought of rain
I’d hate to look into those eyes and see an ounce of pain
Her hair reminds me of a warm, safe place
Where as a child I’d hide
And pray for the thunder and the rain to quietly pass me by
Where do we go?
Where do we go now?
Where do we go?

singing with grandma

 This month has also had the biggest emotional storms we’ve felt in a while.  Hannah’s first Christmas was spent at Seattle Children’s.  We have very vivid memories of her there with us, Greg spending Christmas Eve night so that I could be with Wes; me and Marilyn at home on Christmas morning, unwrapping gifts, and packing up to go to the hospital.  One of my favorite photos of sweet Hannah was on Christmas afternoon at the hospital, in grandma’s arms.  We didn’t know then the path we were on – we thought whatever it was would pass…we’d find a solution.  She was vibrant, happy, aware of us around her.

 Hannah Christmas 2011

Hannah’s second Christmas was very different.  While we weren’t in the hospital as the year prior, Hannah was a changed baby.

  While we knew the toll of her disease and treatments were causing degeneration, living in the day to day, I didn’t see the outcomes as clearly as I can see them here in the photos.  I think Hannah became our angel baby well before she passed.  It was like she went inward – and had such incredible peace.  It looked like she stopped fighting and found peace just being.

 We recently read Dr. Eben Alexander’s book “Proof of Heaven.”  His story is an interesting one, and while Greg and I are skeptical about a little of his story, I believe in so much of what he describes…I believe Hannah’s life was meant to be the way it was.  My hope is that with each seizure, Hannah was able to take a little journey to the divine – to have a break from her reality and to check out heaven just a little bit.  And I believe (or perhaps better to say hope more than anything) that this brief stay on earth is part of a bigger journey.  Our sweet teacher.

 During the holidays, I would have moments where a memory would come into my mind, and I would burst into tears.  The most poignant was at the Seattle Center with Wes.  We were at the Center House waiting for Geeg and Anasophia to join us for a snack before the Nutcracker. Wes and I were eating and playing, enjoying ourselves.  There was a dance performance up on the center stage – a group of kids from a suburban dance studio doing a bunch of numbers.  They reminded me of growing up dancing, and we were enjoying ourselves very much.

 At a table adjacent to us, a family sat resting and enjoying themselves.  A little girl, probably about 4 or 5, was next to the table, swirling and twirling to the music.  She was in her own world, and I could see she saw herself as a ballerina.  Her parents were laughing and talking to each other, not noticing her, and she was perfectly content in her beautiful dance world.  I thought of myself at that age, and how my imagination would take me into the same magical dance world.  And then I thought of Hannah, and not the little baby that we knew so well, but that hope of her – what we (as all parents) dream of when we’re expecting our children.  And just as I began sobbing, Geeg and Anasophia came up behind us.  The moment was so fast – to go from delight to sobs…and that’s how it goes these days.

During that same week, I received a post on Facebook from followers of Kahil Gibran.  I get daily quotes sent to me, and they always have stunning images.  However none has struck me so deeply – mainly because the baby in the photo looks so much like Hannah.  It isn’t one of our photos, but I swear it is her.

  Angel Baby

And then to sleep with a prayer
for the beloved in your heart
and a song of praise upon your lips…Kahlil Gibran

We are wishing all of you peace in 2013.  Our focus will be on taking care of ourselves, finding moments of laughter, being kind to ourselves, and continuing to be thankful for all that life has given us.  Hannah continues to be on my mind all of the time – not a moment goes by when she isn’t with me.  And I am so grateful.

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