The Pillows

Hello again.

Thanks to those who reached out (and kept reaching out :), and I’m sorry for the silence.

I haven’t been able to write, and thought for a while about taking down the blog, because the idea of a fading or stale anything  associated with Julianna is not acceptable. But, then someone reached out and told me that Julianna’s story helped them during a low and desperate point. And then I heard it again from someone else…

I always thought that she needed to be shared, and her story is not over. I’m not sure how,  when, and via which medium…and on many days, I’m just overwhelmed by grief and deficient on hope.

But today — there is this.

Thank you for reading, and for remembering  Julianna.

Michelle

 

Grief fallacy #1: Time heals all wounds

It does nothing of the kind.

So far, all time has done is create distance from the happiest time of my life: eighteen months of love and life and celebration and intent, the kind of life you create when you’re not sure how long it will last.

 

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Magical. (notice all the pillows). photo by Charles Gullung

 

Distance creates numbness, but numbness is not the absence of pain. It just masks the pain, and in some ways, that’s worse. A certain amount of numbness is needed to live in a world that my daughter has already left, but too much is dangerous. I know the numbness has been too deep when pain feels like a relief.

It takes my breath away, this pain, and it hurts in ways I cannot describe. I feel it in the weariness of my bones and in the heaviness of my spirit.

And there’s sharpness too, exquisite and intense emptiness when I realize (in yet another way), that she is really gone.

The other day,  a bag of pillows  did me in.

Julianna had about a dozen pillows on her bed at any given time. They were all grandma-made, mostly pink and came in a variety of shapes and sizes. The little flat rectangles cushioned her heels when she sat up in her Tumbleform chair. The long cylinders cradled her back and kept her in a less aspiration-prone side position as she slept. The medium rectangles propped up her arms when sat up in bed (only possible with the hospital bed and a plethora of more pillows, of course).

They were so important, these bespoke little pillows. They supported her small body and prevented bed sores and propped up weak limbs so that she could wave her forearms about and delight and direct. They had to be just right, and it was something that only the experienced Julianna caregiver would know.  How lucky was I to be one of them!  It was my privilege to know these things and to do these things. I miss these little acts, the thousands of tasks that were a manifestation of love for the girl with the loveliest of hearts.

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A five pillow arrangement. Her right side always needed support. (“stupid scoliosis!!” –JYS)

 

Memories flooded and tears flowed freely at the sight of these pillows. I held them close and took in their scent, but I  smelled nothing but a faint staleness.

I’m not sure what I was expecting. The pillows have been hiding in a closet corner for almost two years, and Julianna never really smelled like anything to me. Maybe that’s what happens when someone is so deeply a part of you: I can’t smell her any more than I can smell myself.

 

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The pillows — and other things I can’t give away.

I sat in my puddle of tears and imagined what she would say…Put them in the washing machine…let’s PLAY!!..I smiled as I ugly-cried.

 It always comes back to love. It’s greater than the pain; it’s what remains.

 

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36 thoughts on “The Pillows

  1. You don’t need to apologize for your silence. Even in your silence, we feel your pain, your anguish. I still feel her presence even though she is gone. I think of her when I see unicorns (and I see a lot of them these days), when I see a rainbow, a pink sky, a pink or bedazzled anything really. I am reminded of the joy such a little person gave to so many people in her short but meaningful and spiritual life. Don’t take this blog down, even if you don’t make any more entries. It is a testament to her and to your family that love is a super power. I sometimes come here and just look at that sweet little face and I often wonder how it was that she was so brave. Facing death, but living her life with grace and gratitude. Julianna Snow, you were a very special little girl, a fearless warrior. Be free, little one. You are dearly missed.

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  2. Grief is such a long journey… and to lose a child, and for that child to be Julianna it is hard! And it never is over, I have seen that eventually after a period of ugly tears, we start to breathe again . And sometimes an hour might pass without a wave of grief, sadness, anger or joy that she was your daughter. It happens. It is not a short path… and it takes time. Thanks for keeping us part of your journey! Love is a super power! ❤ Vicki

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  3. Michelle, please don’t apologize for not writing. Just know that when you’re ready, we’ll be here. ❤️ I think you should follow Julianna’s advice and wash the pillows. She was very smart. 😀

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  4. Think of you almost every day. I have J’s shirt in my closet – front and center – LOVE IS A SUPERPOWER. I decided that if that was good enough for J then it would be my mantra, hence the the shirt front and center in my closet. IT SETS THE PACE FOR HOW I DECIDE TO LIVE MY DAY……ALWAYS J INSPIRED.

    MMM – is it it okay to say – my heart aches for you………

    WE love you – all……

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  5. The post today was heart felt and needed by all of us who loved and followed Julianna’s story….the pillows touched my 💗.

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  6. I come here often, to visit. I love re-reading your past posts and am always grateful for any updates. You and your family remain in my prayers and J forever lives in my heart.

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  7. Julianna is so alive and making an impact. My kids and I wear the Love is a Superpower shirts all the time and it never fails we always get asked, and we always share Julianna’s Superpower Heart! I love when the pens come out to copy the web address. 💟 Julianna’s beautiful heart will continue to touch so many lives, God Bless you Michelle and your beautiful family. Hugs and kisses from Mesa, AZ 🙏

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  8. Yesterday I went to your blog to see if you had written anything new. You hadn’t, so I went back a year and read and re read your entries. Why? I don’t know. But maybe because Julianna was on my heart and so was your family. When I checked my e-mails last night it posted that you had written another entry. My heart jumped with joy and with relief that you are still carrying on even in the hardest, darkest times of your life. Why do I care for your family? I don’t know. But maybe because Julianna is still with you and you are carrying on showing all of us that LOVE will conquer this heartache that you daily have. Please know that Julianna had a message and she had a purpose in this life and you WILL see her again someday.—-Love and hugs from a mommy in NW Pennsylvania.

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  9. I often check your blog to see if you have written anything new and today brought a smile to my face to see pictures of Julianna.

    I often wear her pink shirt “ Love is a superpower “

    When I see pink skies, I think of Julianna.

    As you say it doesn’t get easier just harder and time doesn’t heal all wounds! I totally agree! Thank you again for sharing this angel Julianna to the world. 💜❤️🙏

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  10. Thank you. I had just been thinking about you. My sister lost her 37 year old daughter to what we believe was a homicide 14 months ago. Your words about grief are so true. You never get over a loss like this. You learn to live in a new reality, one with a daily sense of loss. You are not alone.

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  11. Michelle:

    I often think of your sweet Julianna and how wise, steady, kind, and full of imagination she was. She inspires me still today to always choose kindness, to find a way to add sparkles to everything and to treasure things we have.

    You inspire me as well. The way you write is so pure and open and I can understand what you are saying. The pain is so deep it’s actually physical. I haven’t lost a child but I work with parents who do and it helps me understand to a degree the depth of what they feel. And although it is no where near the same, I feel the loss and the sadness for the families and children and over time it builds up inside. To hear you speak of grief and how hard it is—somehow it helps others process it. It almost gives us permission to talk about it, to relate, to understand. I don’t know if that makes sense or helps. But your writing is amazing, as are you. My heart is with you💕. Leo

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  12. Grief doesn’t go away. Some days it’s less, some days it leaves you crying over a pile of stale pillows. We never know what will send us over the edge of grief on any given day.

    The best we can offer you is to tell you people are praying for you. Julianna along with the community of saints is praying for you.

    She knows her Redeemer lives and so do you. Throw yourself into God’s waiting arms.

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  13. I know that Love always wins from the love your family gave Julianna and the beautiful love she showed the world…she inspired thousands of people around the world with her courage and love. I know she is so proud of her whole family and awaits to see you again. thanks for your courage

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  14. Sending love and prayers from Kansas. I keep some of the blogs in my email, so as never to forget what a beautiful child this earth had in Julianna. No words or time will heal your wounds, but I hope and pray that the love you feel surrounding you from others will help in some way….. God bless you….

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  15. There is no wrong to how you feel each day. If we were all the same, grief would be a predictable matrix. Individuality makes each journey an unpredictable path.
    So today i was in an appointment at the va hosp (yuck in general lol) to talk about a future surgery that has been delayed far too long. I suppose no one likes hospital visits much, but thinking of all that J endured is humbling and makes my trivial problems seem like less.
    After the va appointment drove 33 miles to a truckstop just to sit down at a bland diner. I used to eat at truck stops a lot, you know, due to being a former truck driver.
    Then i checked your blog. Something told me to as i sit here and stare out the reaturaunt window at the scenery. Something told me to check. By the way, so much for email notifications, lol. Sometimes i get an email notification saying someone made a post, nothing indicated all the recent activity tho.
    Oah and at the hospital i talked to a Korean doctor for the first time. She was very nice and i felt she is very competent, which is a rarity at any VA hospital lol.
    By far, the best part of this day was reading your blog entry today. Thank you so much, you gave a grey day some color.
    I will post another comment later on that talks more about your thoughts from the latest entry. For now, i just want to tell you thank you so much for writing the entry. It feels like hearing from a good friend. Because it is 🙂 🙂 🙂

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  16. I check your blog frequently because Julianna is so missed, and I think of you and your family often. Sending you love and the promise that we will always remember your sweet Julianna.

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  17. Hi Michelle! First and foremost, i am so sorry that you have to endure so much grief over the very real and traumatic loss of your child beautiful child, Julianna. There is nothing that anyone
    could possibly say to make that grief and daily strife instantly go away. Moreover, there is utterly no advice on the planet that anyone could give you which would result in everything being okay. The course of your life is altered now, and you can never go back to where you were, to who you once were, and to where you want to be. An honest assessment of any strife requires that one process a lot of things that are incredibly difficult for one to process. It could take someone months to process things in order to see where one is on one’s path of life.

    It is difficult to know where one is when one is lost. One must be able to know where one came from and where one is going in order to not be lost. It is impossible to know either after such a traumatic event as you have endured. You likely know where you have been with a little more clarity than you know where you are going from here though. Imagine walking through a wonderful forest in a dream. You certainly remember where you came from, you may not know why you were just there though. As far as knowing what is ahead of you on the path, yeah, that is the most difficult of all for obvious reasons.

    You are an amazingly thoughtful and clear writer, Michelle. As i always do with great writers, I read the following that you wrote slowly and several times in order to try and understand you more: [“So far, all time has done is create distance from the happiest time of my life: eighteen months of love and life and celebration and intent, the kind of life you create when you’re not sure how long it will last.”] I can see that in many ways, you and your wonderful family have been in the previously mentioned forest with no way of knowing where you are going exactly, of what will happen next. And now, where are each of you and your family? Are you in different places in the forest? I hope not too different of places.

    I would imagine, Michelle, that you realized a long time ago that comments people leave on your blog are well intentioned but not very helpful in your overall processing of things. What i mean to say is that everyone writes in their own ways to try and comfort you and your family, but for the most part your blog here is giving to others, not getting help from others. I want you to know that i deeply respect your blog, it utterly helps others in many ways. Recent statistics indicate that approximately 57,000 children under the age of 19 die every year in the United States. So for other parents, family and friends who could potentially be greatly comforted by reading your words, there are 57,000 new parents each year. When you factor in siblings, family and friends, the count of people that your blog could potentially help increases in drastic numbers. Moreover, persons go through all kinds of things in life, and reading such a thoughtful and amazingly written blog from a wonderful person like you Michelle, it is a leadership and the voice of reason that persons can find in your amazing blog. The numerical statistics are certainly there, Michelle! Your blog matters, it is amazingly helpful to a wide number of different kinds of people. Oah, and Michelle, since you are my favorite blog writer of all time, in reference to how you started this blog entry, i would ask you to never underestimate the power of your words! I would suggest that there is no way your words could ever be fading or stale. Yes Michelle, time will continue on. I firmly believe that time NEVER makes us further away from a lost loved one, and i believe that with all of my heart.

    From your wonderful blog entry- [“Grief fallacy #1: Time heals all wounds”]. How true, how insightful and how amazing for someone who was there to teach others. There is no fallacy that can help one gather bearings in that previously mentioned metaphorical forest. On the same hand, there are plenty of excessively negative thought patterns that can hinder one’s coming to terms with such loss. How on earth can you possibly process things when there is so much out there both negative and positive to weigh? Honestly Michelle, you and your family are up against so much daily strife, it is utterly amazing how you deal with things, it is utterly amazing that you write your blog so profoundly well. I wish there was a video or audio of when you went on the last trip in Vancouver to speak about your experiences!

    Sometimes when i have processed things in the past, sometimes it profoundly shook me at how i never saw the simple answers that were right there in front of me. This happened several times. The simplest of answers are the most moving. I think when there are too many pangs of grief coming from every direction that it can cloud ones mind from seeing the simple but best insights after processing everything.

    When you allow yourself to feel the joy and life spirit of someone who is not there, well, it kind of keeps that person alive. I firmly believe that the best way to honor someone’s memory is to spend time each day in whatever state of mind that you know they would hope you are in. Even more so, i firmly believe that time does not separate you any further from a lost loved one. Perhaps even more so yet, i believe that just because you can not see someone, it does not mean that that person is not there.

    It is utterly okay to believe and feel however you want to, Michelle! Everyone has a seperate path in life, and you know things that no other person could ever know. There is utterly no wrong or right to how you feel, it is a process, not a strict school of thought. You are literally one of the smartest people on the planet, as your academic accomplishments obviously demonstrate. You are literally a great healer, Michelle, and that is as honorable as it gets. Sometimes under great stress from grief, sometimes you have to teach yourself how to be you again. Think about that please. It would mean the world to me if you did. 🙂

    Every time you write a blog entry, it means the world to me. Literally. It means the world. I always find comfort and strength in reading your words, Michelle! I am sure others feel the same way. Not just words, either. Your blog helps paint color to the grey forest. Your blog has always been so insightful, honest and profound. Your blog helps others, and there is no greater gift that you could give the world. So thanks, Michelle! I hope you have a good day! How about a bunch of good days! 🙂

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  18. Oah two things. 1) In reference to my last post i made a math error. Since 57,000 children pass away in the usa every year, and since most children have 2 parents, it is 57,000 x 2 new members of that club each year of parents who lost a child, of parents who could find strength in your blog. Divide that to daily, 114k parents in lets say a 364 day year, it would be 313 new parents EACH DAY that could be comforted from your amazing blog.
    And 2) In reference to me saying earlier that i did not get email notifications of your blog post, i simply checked the “Notify me of new comments via email” square below and hopefully that fixes things.
    Lastly, 3) Although i stated i would have 2 points, this third one is just a reminder that anything that locks your mind into something too negative has the daily potential of hindering your processing of things. So break the rules if you have to in order to get beyond thoughts that are too negative. For example, EVERY state of mind is certainly available to you right now at this very moment. So if you happen to be feeling a bit down, break the rules and smile. 🙂 🙂 🙂

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  19. If the pillows make you sad, break the rules if even for a moment and think of the pillows not making you sad. Even for a moment, there would be progress. All the small moments can guide your mind to somewhere else. So start with small moments if you have to. Oah, and that was NOT advice that i was giving you. It was simply what you already knew. 🙂
    p.s. I love the pink sky pic that shows up sometimes on top.

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  20. Good Morning! It’s Easter and i hope you and your family has a nice day. Just checking in to say im thinking about you and your family.

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  21. Love is a super power. I teach that every day to my preschoolers in the spirit of your daughter. She is held so dearly in my heart and has forevermore changed the way I teach, parent and look at life. Her life, love and lessons have shaped me, and how I shape the lives of the 20 children entrusted to my care.
    Please know you and your family are thought of, prayed for and remembered always. Your sharing is powerful- all of it- lovely memories and deepest pain. The human experience is all of it. We honor all of it with you.
    In solidarity-
    Courtney

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  22. Hope things are going reasonably well for ya. Im about 2 have surgery and was thinking of you and your family. Take care. 😊

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  23. Update- surgery went fine. So unusual, there had to be a neurologist there!! I never even knew they did that. I had thyroid removed and the neurologist was there to monitor brain/ certian nerves. Kinda cool, neurologists are awesome! 😊

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  24. Wow ur timezone function on this wordpress is malfunctionong. It say the tweet i did last was first and theynwere like 8 hours apart and it says 1 hour apart. No big deal, just thought inwould let ya know. Hope you and your family have a great rest of the day and have the same tomorrow. For what its worth, someone was thinking of y’all today. 😊

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