Monday, June 3, 2013

Mind Over Matter

The "How's Quinn?" question has become a bit more frequent since her birthday.  And it is almost always accompanied by the Sympathetic Head Tilt, followed - in response - by the Sympathetic Head Bob.


The answer is not so easy.

Cognitively - you know, the part you'd think would be gone very quickly in a severe neurological disease - she's doing really well.  Better than really well - she's honestly doing great!  She is sooooo very much one.  

Bored of a toy?  Throw it across the room!  Unhappy with your current position?  Fling yourself backwards!  Want the toy your brother is carrying?  Lunge forward and just rip it right out of his hands!

even Colin - her beloved - gets the WTF face lol

Think your mom is such a moron?  Roll your eyes!  (no, wait - that's how she is sooooo 13.)

yeah, that happened
(photo credit: Forever Fireflies)

She's hilarious.  Honest to goodness hilarious.  She loves being part of everything.  She grins her toothy grin, yells and even squeals (well, squeaks) when she deigns to allow us to amuse her.  She scrunches up her face, yells and even screams (well, screeches) when she doesn't.

smiley lady
not-so-smiley lady
(photo credit: Nicole Renee Photography)

And last Wednesday, Quinn did the impossible.  She sat up.  All.By.Herself.


immediately following this photo, I promptly burst into tears

Sitting could be considered a 'physical accomplishment'.  And it is, to be sure.  But Quinn definitely did not perform this trick using her physical prowess.  Instead, she used her stubbornness.  This baby weighs 15lbs total, about 1/4 of which is her abdominal mass (due to the enlarged liver and spleen) - that makes her really less than 12 lbs.  She was 8 at birth and she's over a year old now.  Her belly is so big you'd almost think she is growing her own baby inside.  And her arms and legs are just itty bitty twigs.  But the part of her that is working so well - her brain, her personality... her spirit - is what is driving her forward and it's awesome to see.


The part that is less than awesome is all the rest.  Besides her weight, she is back to hardly keeping anything down.  Her hair began coming out in clumps due to malnutrition and malabsorption.  She is often irritable in between doses of Tylenol, and her abdomen is more than double the width of her shoulders (17" v 8").

Due to insurance, et al, the in-home palliative care visit was pushed back to May 14th - two days before Quinn's birthday.  The physician was very nice and seemed to hear our needs and our wishes for Quinn.  I spoke with her again just a few days later when Quinn had a terrible ear infection, just hours before we were supposed to leave for a weekend away and a pediatrician who was on vacation.  The response time was great, she called in an antibiotic without having to see Quinn and we were on our merry way.

I received a message on Wednesday of last week - the same day that Quinn sat up - from the coordinating nurse for the pall care team.  In it, she just said she was checking on Quinn to see how she was feeling.  It was late when I got the message and things were crazy here (otherwise known as Life).  She called me again Thursday morning before I had the chance to call her.  After I yammered on for about 10 min about the ear infection, the nurse indicated she had another reason for calling.

Apparently over the course of the previous two weeks, the palliative care physician had been writing up her report on Quinn.  Part of that included contacting Dr. Wasserstein - the (only) NPA expert - up at Mt. Sinai.  And it seems that the two physicians agreed on the thing they were now calling to tell me.

"At this time, Quinn's needs would be better met by our Hospice program."

Knowing something and Being Told something are two very different things.  Very different.  

For those unfamiliar, there are some pretty standard conditions governing hospice eligibility.  The overarching one - and quite frankly, only one that matters - is this:

A patient is eligible for hospice care when two physicians agree that the patient has a life expectancy of six months or less.

Six months.  She just turned one year.  That brings us to 18 months.  One point five years. Before Christmas.  Before Thanksgiving.  And less than six months - probably before Halloween.

We have known this.  We knew it from the start.  Quinn was just not following the same track as the majority of NPA children.  But oh my god, when someone tells you...  

The admittance nurse came the following day.  May 31st.  The irony that my daughter entered hospice one year to the very date I was supposed to give birth to her is not lost on me.

our first glimpse of Quinn, with the EDD of 5/31/2012

I have not been doing well with the news. Kind of not at all.  I actually had my first real public "losing it" this past Saturday.  It was the first time ever that I actually said to Brett - and followed through - that we had to leave.  Like rightthisminute.  


I suppose there will be more of those to come.  Before.  During.  After.

But right now, there's still This.  And I'm really trying very hard to concentrate on the This.

This
And This
(photo credit: Forever Fireflies)
And especially This

23 comments:

  1. My heart is breaking for you, sweet Eileen. I wish so that it was different. I wish I had words that would ease your heartache. I can only send all of the love and good thoughts I have. Xoxoxo

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  2. I have to write to you and tell you that I love you and your family and we don't know each other. I applaud your ability to continue to write for us readers so eloquently, I think about you and Quinn constantly and you are hands down the strongest woman and mother I have yet to encounter. God bless you. xo

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  3. you and your family are in our hearts and minds. the world really is a better place because of your daughter. thank you for being so honest and generous. a true inspiration.

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  4. Although we don't know each other, I look forward to reading your blog and I think about Quinn and your family often. Thank you for sharing your story and for sharing Quinn with the world. What an amazing family and an even more amazing little girl.

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  5. Eileen, I cry with you. This should not be. my heart was so full looking at all of her pictures, all her personality, but also so empty wishing she could stay. I am so sorry. we love you guys. love ,Chelsea

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  6. Oh Eileen, my heart is breaking with and for you and Brett and the boys. I so wish that this was not so. All I can offer is long distance love - of that you have all that I have. Thank you for sharing your beautiful, beautiful girl with us. xoxoxo

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  7. Your strength in sharing your sweet girl and her adventure is amazing. You are all in my daily thoughts and prayers

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  8. Eileen, I love how you describe everything about Quinn. My Zoe was the same way. Especially when it came to describing her belly. I tell people "she was two and she looked like she was 9months pregnant". I so know the feelings you are experiencing right now. I went through the same thing with Zoe and with our little Seth. We knew the odds were stacked against both of them from the beginning but we always had that little piece of hope we hung on to. Especially when they would do something "they weren't suppose to do". But then the day came we had to be told the news we had known all along, but didn't want to be "told".
    Please know you and your family are always in my thoughts and prayers!

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  9. Those pictures of miss Quinn are the essence of hope and happiness. I loved and soaked up everyone Eileen, you captured her spirit perfectly. I am so sorry you and your family have to go through this heartache. We are here for you and love you all. Xoxo

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  10. My heart aches for you as a Mom, as a human being. I will continue to keep your beautifully amazing family in my thoughts and prayers.

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  11. Oh Eileen, I am so sorry. I cannot fathom how you are feeling, how you are holding on...and yes, I know I was one of the sympathetic head-nodders. I cannot believe you are at this point, even knowing it would be coming...it isn't supposed to be NOW. Many hugs and prayers for you all. She is such a beautiful little girl, what a huge personality.
    Kara

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  12. She is so gorgeous and her soul really does come through so strongly through those pictures! A soul that strong is never, ever, ever going to really leave you, Eileen. Sending love, support and prayers from the Corn Belt.

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  13. You are an amazing mom and Quinn is such an extraordinary little girl. Beautiful pictures with so much heart and personality. Thank you for sharing. I am so sorry for what you and your family are going through. I will keep you all in my thoughts and prayers.

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  14. My heart hurts for you deeply which is probably only a glimpse of what you're feeling. I wish no child/momma had to go through this. I am so sorry. I hope and pray that you are able to soak up all the "this" moments that you possibly can. Sending you many hugs and prayers.

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  15. Eileen...I just want to say that you guys are in my thoughts and prayers all the time...Quinn is such a beautiful little girl and I love seeing her pictures. Hugs...

    Denise

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  16. You know how they never say to take the lord's name in vain---well there comes a time for everyone when a "jesus f christ" should not only be forgiven but allowed if to only release the some negative energy and focus better...this might be your time---I formally submit in writing that I am willing to take the rath on your behalf for this sin and the ensuing weeks of endeavoring to be extra good and nice in order to redeem myself.

    My heart hurts for you all.

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  17. Your courage, your family's courage, and Quinn's courage are a daily inspiration to me, though I am so sad that you are inspiring under these circumstances. You make me want to be a better mom and person, Eileen. My thoughts and prayers are with you.

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  18. I started following you about four months ago after reading about Quinn's bucket list. I found your blog and immediately fell in love with your courage, your dedication, spirit and the love you have for your family. I bookmarked your page and every once in a while I like to check in to see how Quinn is doing....What she has accomplished....and to see her beautiful smile.

    Today, I sit at my work desk with uncontrollable tears rolling down my face. As a mother, I can only imagine how you feel and I ADMIRE your courage. You have given me strength as a mother to endure all and to smile through the tough times. You have inspired me to look at life differently and I thank you for that.

    Thanks for sharing Quinn with all us. She is an amazing gift from God. You are forever in my prayers.

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  19. Eileen, just because 2 doctors agree on the 6 month guideline, does not mean the clock runs out at 6 months. Quinn's spunk and determination may take her on her own journey, and even well past 6 months. You have always seen the silver lining in everything, continue to look for it as it will be there. Sending all our love and hugs.

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  20. Dear Elieen, i can understand like mom that what you are feeling. But there are a lot of miracles of Lord i believe the Quinny will be miracle for all of us, please be strong and continue what you did, doing and will done for Quinny. I love you all, God loves you and also God loves so much Quinn and be sure that he will care about everything. I can tell you about the child in America that had a hole on her heart. All doctors told negative things but the family of this child always prayed to Jesus prayed that he could save her. And... Once they went to the doctor again everyone shocked they did not find that hole on her heart. And that was so amazing. This story told us our pastor i believe that Quinny will be miracle. I just loved all this pictures about her. Love to see on her shine of the LORD. She is just amazing beautiful girl that i ever known. Do not think about what the doctors sad just think about everything good on your family and on Quinny. That is amazing that he sat by her own. May God Bless you and i pray that God takes all fair and bad thinks on you family and specially on QUINNY. WE LOVE YOU GUYS>>>QUINNY YOU ARE AMAZING...

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  21. I have very little to say....your lovely daughter has touched me beyond words.
    As a mother, my heart breaks for YOU. All I can say to you is, although you can't see us, understand that you have a silent army of moms standing right behind you. We are here. We are here for you.

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    1. I love that! You are right, Nancy! We ARE a silent army!

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  22. Giant hugs being sent your way (virtually, of course). I wish more than anything that I didn't know the exact feeling that you described...the knowing, but not really KNOWING until you've heard it and finally let the words sink in to the very depths of your heart. I am so, so sorry. I am teary just writing this. Just know that we're here for you and willing to support you in any way.

    Quinn is such a beauty and her (beyond her years) personality -- more the attitude -- is captured so perfectly in each picture. Love, love, love the proud mommy moment watching her sit up and chuckled at her "WTF" face : )

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