A Perfect Sunday

Two weeks ago, I woke up and looked at my phone: Orlando.

Such darkness in this world.

I’m a news junkie, and I usually read these stories — if only to honor the innocents. I couldn’t do it that morning, though. It was too much. I made a conscious decision to turn everything off and just be with Julianna.

On Sundays, I usually stayed home with J while Steve and Alex went to church. This was just another Sunday, but it seemed extra good.

I had extra energy that day, and we did everything she loved. We used chalk dye and colored her Barbie’s hair (rainbow colored, of course. J couldn’t let any of the chalk dyes feel left out). We made a funny looking flower out of fabric and a pencil (I’m not artistic, but add glitter, and J was happy). We played…how I wish I could remember what stories we made up that day.

We read Calvin and Hobbes and Fancy Nancy – the one about the wedding of the century. We watched…one of her shows. I wish I could remember which one it was. I hate that I don’t remember every detail, but maybe it’s because the day was so full.

We went on a walk. She picked me a flower. I decided to change out the wreath on the front door to something more summery. (Wreaths were kind of a thing with J. When we changed one out, she insisted on studying it, even if it meant keeping the front door open on a blustery day. This was a new wreath, and I would have been sad if she never got to see it. )

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She wanted to watch me cook in the kitchen. I hardly ever cook these days! But that day I did, and she watched as the blender pulverized cauliflower into “rice.” We agreed, it was pretty cool.

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Cauliflower fried rice.

One of her nurses (the one who had been with her the longest) came over for a few hours. She doesn’t usually work on Sundays, but this was an exception. J got one last good playtime, treatment and bath from a beloved nurse.

It was a perfect Sunday, and then it went horribly wrong. It became the worst Sunday of my life – and the last of hers. Just over twenty-four hours later, we lost her.

I started that day by deciding to shut off the news, and I haven’t been able to go back. I think it’s important to be informed, to be a “citizen of the world” and try to do good, but I’m discouraged. There is so much darkness out there, and my instinct remains to preserve all that is good and kind and loving: all the things that came naturally when focused just on Julianna.

To be honest, I’m angry. I hesitate to share this, because J was never one to get on a soapbox (except about messy hair). But I am angry about the ridiculous amounts of money spent on (fill in X, Y and Z – pick your poison) and the attention given to (pick again. There are lots of examples.)

Every day, children die. Some don’t have enough food. Some have diseases that don’t even have a name, let alone a treatment. Some are physically alive but emotionally neglected – what will become of them?

There are children and families who are fighting with desperation and courage. They make impossible decisions and hope for another good day with the ones they love. The strength to carry on during these kinds of days is supernatural.

And there are angels among us: peacemakers, nurturers, facilitaters. They sense a need and they help, generously and with love.

These are the stories I want to read about. Why can’t these stories be the ones to change the world?

 

Spend some time learning these stories (I am posting both with permission).

Meet David Spisak, a true hero.

David found love at age eight, and what a gift! He died a few months later from cancer.

 

(His mom and I connected because we both knew what it’s like to share our kids with the world and receive criticism from others who don’t approve of our impossible choices. This should never happen, but now I have a friend for life – because of our beautiful children. )

 

The journalist who brought David’s story won an Emmy. Strong work! Read it here.

 

Also, meet Jacqueline Dyer.

Like Julianna, she has a severe form of CMT. She loves pink, and she has a brightness in her eyes and face. Her parents also call her “J.”

This other J also likes mermaids. Last week, we did something that brought me such joy:

This tail was lovingly made for my J by a kind stranger. It let my J’s imagination soar (see this). Now it is with another girl, and the chain of love continues.

 

 

Please…fill your mind with these stories. Spend your time, your talents helping someone who is struggling. Use your money to fight CMT, to fight cancer, to lend a hand. Listen and learn from children. They are our best teachers.

 

Another Perfect Sunday

Two weeks after our last perfect Sunday with Julianna, we travelled to the Oregon coast. The ocean heals, and so does love. We connected with family, and we celebrated a wedding.

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Photobombed by the bride! Do you see awkward unicorn?

There are some things in this world that are perfect: hold them tight.

23 thoughts on “A Perfect Sunday

  1. The news is full of so much negativity, it would be so much better to help children like Julianna. To be talking about cures instead of which celebrity made millions in a day. It’s a sad world but I will try my best to always help others, in memory of the bright light that is Julianna. From your friends Pedro,Sujin, and Jessica.

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  2. I love this blog entry. I don’t mean to sound overwrought about it or anything. It just speaks to me in ways you may not have consciously intended. As a result, I also can’t help but think that God played a hand in making sure you and J got to have that “Perfect Sunday” together before he called her home. You played together, she got to see the new wreath, and you even went outside together and she picked out one last flower for you. That resonates with everything Steve shared in his letter about making a moment, and all of you made many more moments with her over those last 18 months. That’s exactly what she needed. And, in the long run, those memories are exactly what you’ll need, too. May God bless all of you, and these stories of J, as well…so they reach others and give them hope, love, and inspiration. But most of all…love. It is a superpower after all…

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  3. I love the awkward unicorn…..Life presents us with many challenges, moments, brief synapses…they all equal to Golden Memories. Those are the ones that carry us along and bring a smile to our faces when we least expect it. J is a precious Angel and Im glad I was able to get to know her through your stories. Through the eyes of a child, simple unwavering strength and love.

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  4. Oh, don’t watch the news. There’s no need. It is so much abstract anguish. Life is concrete and present and what we do with and for the people that surround us. There’s so much love -and grief- arround you right now. Just embrace that. It’s enough and it surpasses any human being’s capacity. There will be a time to worry about people far away, just not now. I send you a really big hug and blessings to your hole family.

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  5. It’s great to see that you were able to have such a full final day with Julianna – and that your family is continuing to ‘live’ in the face of the sadness that there must be.

    On your other points, I think that in many ways it’s difficult for most people to sincerely empathize with children (and their families) that have to deal with terminal illness – not to mention all those who suffer abuse in so many forms. This is part of the reason that what you’ve done with your blog is so important – you actually let the world into your lives to share in the joy and suffering that you experienced with Julianna, and for me at least, this has 100x the impact. It’s easy to read a 1200 word article, or watch a 3 minute segment on CNN, feel sad for a moment, and then move on without giving any additional thought to it – because it still feels abstract and distant. I can’t blame the media for this, they have to follow the constraints placed by the marketplace – but the results are a lot of sterilized stories with little impact. Had it not been for this blog, I’m pretty sure I would have forgotten Julianna’s story by this point. I’m very grateful that this wasn’t the case.

    WHO statistics say that about 320,000 children between 1-59 months die of non-communicable disease each year, so roughly 900 every day world-wide – and this obviously excludes kids who have passed their 5th birthday. This is in addition to the 4-6 million who die of other, mostly preventable, causes. That’s a lot of heartbreak and sadness, but it’s still a small enough number that most people (at least in the ‘developed world’) aren’t directly affected. I knew these statistics before seeing Julianna’s story (well, the latter one) – but they’ve never been (in my mind) more than sad statistics in a world full of problems that are too big for me to affect. It takes an emotional connection to inspire action, and I think your words have done that for a lot of people.

    Take care

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  6. First, good bye to fried rice Mondays and hello to cauliflower fried rice Mondays. Second, thank you for sharing your and other stories. They are beautiful and it is hard to read them and at times I feel like my faith is tested. Nevertheless we need more positive stories, even if some are heartbreaking. I will pray for more perfect Sundays for you and yours.

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  7. Michelle, you are such a beautiful lady and a wonderful mum. Your post just made me cry because you are hurting so bad and I just want to give you a hug and take away your pain. Please do not be too hard on yourself, you will feel terrible emotions but the one thing you MUST cling onto is that you, Steve and the whole of your family & friends did absolutely everything you could to make Princess Juliana’s life as amazing and wonderful as you could in difficult circumstances It was clear that even in the most terrible of days for you all, Julianna was able to laugh, joke and most importantly smile whilst making her lovely comments to make you all laugh again. Julianna was such a special little girl, she will not be forgotten. I can’t tell you how many times I have thought about her so please take comfort in that she is travelling the world as an angel on her unicorn, flying through the clouds with the biggest smile ever. Princess is no longer in pain, she is free but will always live on in your heart and all of us whose hearts she has touched. Take care dear Michelle, we are here for you xxxx

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  8. I echo the sentiments of Neil Spicer & JMC – the first few days (on receiving the news & the flurry of tea parties & tributes), I found myself caught in sheer amazement & surprise at how we made it just in time to autograph my book (again, thank you – could never thank you enough!) I couldn’t believe it – it was like, you know, catching The Last Train, any later and there’s No More. That kind of ‘phew-we-just-made-it’-ness.

    But now, I can’t help wondering if God had it all planned – so J could autograph it in time, that yet another someone (ie me) would have something to ‘treasure forever’, by which I will ‘think of (her)’ when I read it. Then Perfect Sunday, then home to Heaven.

    & yes – I can only attempt (feebly) to guess what it must have taken, to share your story with news outlets, to even put your address online as a means of contact. I mean – writing for yourself/friends & family is easy, allowing your blog to turn into a news coverage is Not. I say “allowing”, because you had every autonomy/right to decline speaking to the media – but you didn’t 🙂 which takes tremendous courage (esp as an introvert – from one to another, hi!) to share yr story with the whole world.

    And I imagine that putting your mailing address on the web is a delicate & calculated decision – sure, you potentially get great returns (eg the strangers who send you lovely, from-around-the-world, stuff), but the risks are just as great or even greater too (ie I would be hesitant if it was me, cos I think it would have its threats too. Just like how people leave mean comments/emails, I suppose there is a chance they could potentially use it to send mean letters too .. I hope not. Mean letters with a circle and a line through it!!)

    But because you have done all these – that’s why Julianna means so much to us – that she isn’t just ‘5-yr-old CMT girl’, ‘terminally ill Washington girl’, ‘kindergartener from Washougal’, or any other vague term. She’s JULIANNA, my warrior (mermaid)princess virtual friend, who cannot/does not hold her horses .. because she has ponies 😌

    So yup – I take great pleasure & privilege in considering J (& by extension now, her family) a virtual (young) friend .. all because you have courageously shared her with us/me! That’s why I still follow your story/instagram, that’s why she doesn’t just turn into a sob-story-statistic after five minutes.

    Your courage to be vulnerable (& as is your ability to put your experiences into the right words) is such an encouragement, Michelle! ❤ Much, much love. Keep J's story alive, & I hope A is coping well – therapy unicorn is so Awkward, that I think he's kind of cute. Glad that he's there for your family xx

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  9. Harli Housel, a five year old girl was found with her little brother and dad…all dead the dad still clutching them. 161 people died that day. May 22 2011. Like Will Norton, who had just graduated high school and was on his way home to his graduation party. On one of Will’s Twitter accounts his last tweet is still there- “im graduating today”. Sara Norton has the Twitter of SaraStyleBlog and she quit posting after a while. It was an EF-5 tornado. I survived, people around me did not. Twitter account itsjessicayall was Will Nortons girlfriend. She is still here. Thousands of pets died that day too. It was a matter of minutes. The hospital was hit badly, schools, stores, entire housing areas. Bodies were all over – parts I should say. Literally all over. It is something I can never forget. My point? I know loss,too. You are not alone. I love your family! Others have got through it, you are doing so too. Michelle, Steve, Alex, I love you so much!! You are NOT alone! ❤️

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  10. Julianna was an amazing girl. So bright, so amazingly cute in words and actions. Such an uncommonly beautiful person. I can absolutely guarantee you that Julianna would not want you to be sad, to hurt. In time, that sinks in. In your darkest hours, please remember that you were really there for Julianna, you loved her and she was not alone. In baby Julianna’s mind, she had a wonderful life and was so happy!! ❤️ You are an amazing mom. You are an amazing dad, You are an amazing brother. You want to talk about superheroes? Let me tell you something. To Julianna, you were amazing superheroes!! Never forget that!

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  11. Thanks so much for sharing. Julianna (and you!) are teaching us what our real priorities need to be. Love is a superpower!

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  12. so great to see you out and about. How is Alex doing? I lost my mother when I was nine. It was horrific and affected me so much. I wonder how he is? Hugs and hugs to all of you.

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  13. Michelle thank you for keeping us informed I look every day to see if there is any news. I find myself looking at all your blogs. My favorite is stink eye love to hear her voice as she moves across the floor with her walker she was so pleased with herself. Praying that it gets a little less painful for you and your loved ones. We care!

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