Riding the Wave – a new home for Hannah’s Updates and Thoughts on Life

Riding the Wave

Grief comes and goes

like waves in the ocean.

There will be stormy times….

there will be calm times….

Grief comes and goes.

Welcome to allysonbrown.com – I thought it was time to separate my thoughts and writings that I usually muse on Caringbridge to a separate site.  I’ll continue to update the Caringbridge site for Hannah with medical and health issues, but I will now focus writing about our broader life here.  Please feel free to follow this site and the Caringbridge if you like.

Writing has been so therapeutic for me – I always loved writing, but with the challenges facing our family over the past few years, it has been an outlet that provides so much to me.

I am working on what life in the future will look like for me.  I know that my role as mom, wife and friend are most critical.  I also know that my professional self is a significant part of who I am.  I realize that life is truly like riding a wave – the waves come and go, and we can either succumb to their forces and drown, or learn to read and ride.  That is my choice – to  ride the wave.  Thank you for all of your support.

Overview

When you play in the ocean, you learn that you have two options – you either ride the wave and approach the power of nature with humility, patience and confidence, or you drown.  So it is with our story of Hannah’s life.

We have learned to ride the wave that for us presented itself as an undiagnosed metabolic condition, beginning with seizures and code blue at 4 hours after birth, to  over a year  of continued daily challenges, vigilance and what feels like insurmountable obstacles.  We know that Hannah’s life most likely will be a short one – her encephalopathy and degeneration are constant reminders that our beautiful daughter won’t get better.

Yet what we know now as a family (and each of us individually), is that it is possible to find joy in these waves.  Each day we wake, not knowing if we’ll have a calm, smooth day or a day filled with gale-force winds.  We have found that no matter what, if you can let go of the need for planning and structure and just be flexible, life will be okay.

This “Riding the Wave” project is my opportunity to tell the story of our lives so as to help others.  Originally started as a Caring Bridge blog, my hope is to bring these thoughts and experiences to a much broader audience, and in turn help organizations that have given us so much support during this process a tool to tell both their story and amazing impact on our lives.

 

This entry was posted in Uncategorized. Bookmark the permalink.

8 Responses to Riding the Wave – a new home for Hannah’s Updates and Thoughts on Life

  1. Jeanie says:

    Beautifully done, Allyson. I look forward to all your posts.
    Much love,
    Jeanie

  2. Maura says:

    Allyson,

    What a brilliant idea to start your own website. I was at a birthday party last night for a friend who turned 13. We all gave her a flower with a wish for her future. A few of the wishes that I remember include: may you have a good hiding place when you need one (when we first started, she hid for a brief moment under the table); may we be with you for the next 13 years of adventures; may you always feel the love that you feel now, wrapped around you. Those seem appropriate here as well. May this website be a “place” where you can go when you need it; may we be with you (albeit virtually); and may you feel the love from your community to support you on your journey.

    You are in our hearts and minds.

    Maura

  3. Lisa Hughes says:

    Allyson,

    You are truly a talented writer and so open and honest. Thank you for allowing us into your family in this way.

  4. Susan says:

    Your warmth and honesty come through so clearly in your writing! I feel similarly to you – that the letting go (of expectations, of structure, of plans for the future) opens you to the experience of these little people. A difficult task and a great challenge for me.

    Well done, Allyson.

  5. DarciU says:

    All of your family has been such an inspiration to me and my family Allyson! Your candor and humor and above all deepest respect for Hannah has indeed changed the way we approach our daily lives. Thank you for having the courage to be so honest with us and your writing is an outlet for us all, I thank you for that as well!

    Much love from the Ulins to the McNutts!!

  6. Christina says:

    Your new space for sharing a window to your heart and mind is truly awesome.
    I can really “hear” your voice and strength – all the lessons you have learned from Hannah and from being a warrior mom.
    I wrote this 6 years ago – maybe you would like to hear it as it shares your affinity for wave action?
    My body salt, my life changing
    Water filling the space
    Trapping sand
    Providing a sheltered cove
    Water leaving the space
    Where my feet can lead me
    The energy delivered
    Awakens the ancient self
    The quiet thought
    The unanswered why
    My genetic memory is stirred
    I also await the tide
    Obey the moon
    Specific needs for specific life
    Time passing in rhythm
    Carving out my space
    I move forward
    Backward
    Side to side
    Within and without
    Clinging to my rock
    My journey touches yours
    As we affect one another
    My heart amorphous
    In the sea

    Always our thoughts and love with you and the family,
    Christina, Sean, Liam and Piper

  7. Anne says:

    Hi Allyson,
    When I friended you on FB, I had no idea what was going on for you and your family. I had seen Tracey P. D.’s post about your blog and I thought, “oh, I bet that will be interesting”…I didn’t even know you had moved to Seattle. Ever since I heard from you earlier this evening, I have not stopped reading your Caring Bridge posts. I am speechless. I don’t even know if you remember me from the Gottman class. But I sure remember you and Greg, fondly. I’m glad to reconnect and please know that I’m sending love and appreciation to add to what you already have an abundance of. I feel like my life is changed forever…thanks for sharing. XO

  8. Kurt G says:

    Allyson and Greg, you dont know me and we may never meet. I am not an eloquent writer like I have read of on your blog and on this website, but I felt compelled to share my thoughts. I am a friend and co-worker of your sister Angela. We (Angela and I) are among a group of people that have an affinity to help those in need. I like to think we are a “special” group and I am proud to be part of it. By your recognition of your local fire dept and EMS, I can assume that you had a good experience with our group, as stressful as those times were, I am sure. I have only been briefly kept up to date about Hannah’s short earthly life. I want you to know that the wave you have been riding has engulfed many many people that you don’t know, most you will never hear from, but many that have said a little prayer or comforted Angela (who you should be very proud of). The wave is headed back your way filled with love, sorrow, strength, hope, understanding, faith, and comfort. My hope is time will eventually make the grief fade while allowing the memories to remain bright. God Bless you for being fantastic parents. Kurt

Leave a Reply

Your email address will not be published. Required fields are marked *