#ifyoudontknownowyouknow

I have tried to post our March  so many times. I have draft after draft. All incomplete thoughts- memories, accounts. Everything. All of it so I can’t forget or think it was just a nightmare. Or a dream. March was absolutely filled with stellar and amazing *amazing* firsts and dreams.

Lily milked and

named cows ( Charlie 1 and Charlie 2 twin calves)

She catwalked…. Little did I know this would be the last

time she could…. Or was it? 

    

and she got *fancy* 

Her forever wish to get slimed was *magnificent*

The

joy

On her face was priceless.

http://kcaslimed.com/uploads/edited/kca23344-0307__09_59_41.mp4

Lily had a *dream* American Girl expirience. I wouldn’t have been able to pull off  that kind of magic by myself *ever*…..

    

Lily went back to school to her favorite people in the world

  

She flew over her school and home in a helicopter… And her Ryerson family  blew US away with their love

         

     She made her Holy Communion and was confirmed Lily LaRue Peregrine Anderson. Named after the Patron Saint of children and those stricken with cancer. One of his feast days, ironically, is Lily’s diagnosis date….

https://www.youtube.com/watch?v=XMLAOkvDfG4&index=12&list=PLbN0kHM-zPcnA8rx9ZfQ26reBpavpp_DG

The gifts and outpouring of love have been life altering and beautiful.  The kind of beauty that stuns one silent; in reverence. Such beauty in the world…..

And didn’t it feel like, for a moment, we were going too fast? Manic? Greedy? Like maybe we should wait? And was is ” too much”? Right??? I felt it.. 

I was wrong.

And I sit here now and wonder why I didn’t do more…. How did I run out of time? 

Why did we run out of time?

How?

Why?

There was this:

  

Then this ….

    

Hospice happened…

  

I get a whirlwind of WTF is this ” comfort care” paraphernalia in my face: drugs, o2 tanks, aids and nurses and people telling me they are here to help with *this*~ and even though I was physically present in 2 very clear meetings, I assured myself it was a lie. and I can guarantee you, I don’t know what THIS *IS*……

I had only told family Lily was sent home to die…..This was why we were in a meeting with all of her doctors and team. There were words that needed to be said out loud and clearly to us. They needed to tell us that she was going to die…. 

 And that’s not even completely true- I just told my family  to “come now”… I don’t feel that was a lie . I’m sorry I couldn’t say the words to everyone. I insisted this be a happy home. No questions. No tears. Come with your best joke; game face ON. I avoided questions because I was looking for my own answers….. I needed to find  our next step. I wasn’t going to ” wait” for anything…

So then Lily gives a big f.u. To hospice….and walks. 

And then hydrocephalus happens…

and now we are here…..

And I’m not too sure where “here” is.

Lily can’t walk.  Today is 6 days I haven’t heard her voice. When I would ask her ” what’s my name? Say my name”!! She says “barbara” and laaaaaaugh …. In the sweetest, funniest voice *ever*. Every. Time.

No one will ever understand how much I missed that or what I would do to hear it again.

You. Don’t .KNOW….. you do not know what I would do to make this happen…. You will never know. I hope you will *never ever* know my desperation.

The shunt gave us time. It didn’t give the miraculous expectations I had in my minds eye. . But I am forever grateful we did this so I would never look back with regret.

And there’s the word that haunts me. Regret.

I’ve lived the last 11 months past diagnosis going into every ridiculous, incomprehencable decision knowing I had one shot and was not allowed to ever look back.

We have traveled thousands and thousands of miles.

Thousands.

And I feel like a failure….

On may 3rd, 2014, Lily was dead at the bottom of a pool. A “random” stranger – this angel who no one knows what he was doing there or why he was there- no video, barely a report…. wasn’t a guest….revived her. Brian watched him bring her back. I sat with her as she screamed at the ambulance peeps to get away from her in volume times 100… And she was SO mad! So stubborn. Not scared- she was pissed off that there were things on her and she couldn’t move bc they strapped her down. They thought broken bones, concussion? Did she slip and fall in? This a child who *swims*. But that yelling was *good*. It was STRONG. They thought she was going to be just fine. Her voice was crystal clear. ” Get OFF of me”!! She told them, “You are in SO much trouble”!!!!! 

We thought our biggest problem would be maybe junky lungs and a 24 hour observation and how are we going to explain to them they can’t go to Hershey Park tomorrow? Lily was REALLY going to be mad! 

Did this stranger come because I wasn’t there? I am prideful enough to believe so…. Do you know I don’t even know what he looks like? Some guy with wet brown longish hair….could have been bald. He is a blur. And so our journey began when they found the mass in her brainstem. On May 4, 2014 at 12:50 am.  No broken bones. Not even a bruise. A DIPG tumor the size of a lemon. Quiet. Dormant. No symptoms. 

Just. There. Waiting….

The question I asked Brian and then he reiterated to her team was” why bring her back to drown again? Why isn’t she the exception – this amazing once in a lifetime miracle? Why did she come back if this was going to happen again? “. And Brian did ask them when they came back into the room. They wanted to give us privacy. We were just told there is nothing else they could do. We had ” decisions” to make…  And Dr M said maybe it was to give US more time. That this a gift.

The gift of time.

This stupid  hourglass of sand. This absolute bullshit where we don’t get to say time out.

Don’t get me wrong- I never thought of it that way and I see the beauty in it.  But my timetable is totally different. 50/79 years would be just fine.

Days and hours is bullshit.

It unfathomable.

I watch her breathe. Every night. I stay up- so scared I will *miss* it.

Miss. It.

And now you see where I am.

I’m in a place where I cannot justify- where nothing makes sense. I try to be ” normal”. But I forget what that is.

I may or may not post our past. I don’t know what I will do tomorrow or later or an hour from now.

I just don’t.

I try to feed her. To entertain. To keep her happy. Comfortable. I need some of you to do that for me too. But it’s getting harder. Harder to feed her. Her jaw locks up. She chokes when she drinks . She sleeps more. Too much…..

She’s *there*. She *knows*.

I made her a promise I would fix this. I’m trying. So.hard. I’m looking and seeking- where who when? How!!

I cannot give up.

No fucking way.

I will baby bird feed her. I will do her excercises. I will do whatever I have to…. And that’s when I find our next step. We will live at the clinic in another country for about 5 weeks and see how the treatment goes. This 5 weeks will determine the next 5 months/ 5 years? We will leave after Easter…TBA

This was made for me. One if the best most precious things I’ve ever owned. It’s Lily’s fingerprint.

An individual,  one a kind gift. Very much like Miss Lily LaRue.

I don’t know a world without her in it. It would be a lesser one indeed. 

And so we fight.

 it is a monstrous thing, to slay a unicorn. “… Harry Potter…JK Rowling

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22 Comments Add yours

  1. Kelli Shiels (McGarrity) says:

    Oh Barbara . .. I Love you and cry my heart out ,reading this forever wishing I could change this for you and your family. You have ALWAYS been a beautiful soul and you made me dizzy watching and reading all the things you have accomplished thus far, with the greatest amount of awe. The GREATEST. . . .

    Liked by 1 person

    1. I went through all this. My god I do know. I wish I didn’t. I kept a blog like you and I wrote honestly as much as I could. Perhaps a little British restraint but I wrote the truth. When you feel ready you can read it but not now. Just be with your beautiful girl. http://Www.butterflyboyoisin.wordpress.com

      Like

  2. Regina says:

    An amazing little girl who is lucky to have such a strong, fierce Mama. Barbara I’ve followed *this* terrible *thing* Lily and your family have been going through. What lessons you’ve taught so many about pure love and family. Lily has been teaching us too… how we should all slow down, laugh more, enjoy the simple things, love deeply. In pictures I see the love between her, Brady and Jasmine. The love and bond between her and her Daddy. I see the strength, trust and pure love with her Mama. This *booboo* just sucks …. I’ve learned we are not doing enough to help *fix* so many families and wonder each day now what can I do to help.

    I have never met Lily in person BUT please thank her for teaching me so much. And I pray for your family each day and for others that they may never have to experience a *lifetime* in such a short time. You are strength for Lily when she is weak, you are her *voice*, you are her teacher of so many gifts. I pray for you and her Dad that you have whatever you need to get through *this* with your precious children. For all your family and friends.

    Liked by 1 person

  3. As a mom who also met DIPG through my only daughter, I understand and feel your pain. There is no solace, no comfort. We pray for the doctors to be wrong, we pray that we are the one to beat the odds, we watch in horror as the cancer takes away so much. But the spirit of our beautiful daughters remains strong. Our love never ebbs, but stays strong. We watch in disbelief and try to jam a lifetime into months, weeks, days…..it is not fair. We too suffer as we cannot will a change. Eventually our prayers turn to demands. We ask for miracles, we scream for some kind of justice. Then we ask for comfort, for peace. After more than three years later, I still ask for miracles… I pray for this to change. God be with you, and your family, and especially with Lily. The road you are travelling is grueling and so difficult, but many are with you and you will never be alone. We will forever be in your corner and we will continue to fight for childern like Lily, like my Alyson, until others will not have to suffer this journey.

    Liked by 1 person

  4. Claudia says:

    Sitting here in tears as I read your thoughts..I think you are doing everything that is right in this horrific situation…It brings back memories of the last time I heard my grandson’s voice just days before he went to sleep forever. I know that there is nothing anyone can say to ease any of the pain and thoughts you are having. Lily knows you have done everything for her. I send you and your family and all those close to Lily hugs and positive energy to make it through each day of this journey and beyond. Lily is a gift that you have shared with so many and I know that my life is a bit better because of it, thank you.

    Liked by 1 person

  5. Rebecca RN says:

    I sit here after reading this gut wrenching post and can do nothing but sob. I pray for you and your family every day. I pray for Lily’s miracle and your peace. No parent should EVER endure what has been thrust upon your family.
    I cannot even fathom. Much love and prayer for you all from Cincinnati.

    Liked by 1 person

  6. Katie says:

    I’m a mom that knows your pain. My daughter Elizabeth battled with a brain tumor and those last months were so difficult. I’m friends with Patricia K. who is a cancer mom like us that you are friends with. I can help you and you can reach out to me or Patricia to understand better how I can help.
    God bless,
    Katie

    Liked by 1 person

  7. Patty McGinley says:

    I feel your pain. My heart breaks for you. All I can say is– love her, do all you can, and just be there. When it is her time, its going to happen, and you won’t have regrets. You are a good mom. We miss you.

    Like

  8. vashni says:

    Oh Barbara, I know. I know of the beauty and I know of the awful and ugly. You are not a failure, you did nothing wrong. When will we realize that the threat is within our own bodies? Your are am amazing, caring thoughtful mother to your babies. Much love to you.

    Like

  9. Maureen Machado says:

    Thank you for bringing all of us on this journey with you, Barbara. Not a day goes by that I don’t see something, or hear something that reminds me of Lily and makes me stop and lift her up in my prayers. Love to all of you, today and every day.

    Liked by 1 person

  10. Sara says:

    Reading this brought me to tears. I keep praying for a miracle and will continue to.

    Liked by 1 person

  11. you do not know me. I do not know you. But I am with you everyday watching your struggles. Watching her struggles. & I am watching you be the strongest mommy you can be. God bless you. God bless Lily Larue. My heart breaks for you & your family. I have shed my own tears watching & reading. But one thing is for certain… & that is that Lily Larue knows true love!!! She knows & feels the love around her. Be proud of that! God bless!!!

    Liked by 1 person

  12. Simon says:

    I am so sad to read this; No parent should ever have to face this, I pray for a cure every day for all DIPG kids.

    Liked by 1 person

  13. RevL says:

    Words will not justify what cannot be expressed and I have no right to try for the possibility of choosing poorly. But please try to consider sometimes how many strangers send you love and blessings and energetic comfort. Maybe publish the book you are writing, for it Will touch and inspire all who would be graced by your words. You are beautiful. Lily LaRue is a most spectacular teacher. There is profound wisdom in little her that just radiates from her eyes -even to way out here, to one of those strangers. Blessed be who you be.

    Liked by 1 person

  14. Cathi Puglisi says:

    I *KNOW* and yet I have no words. I know your desperation – trying to make sense out of senselessness. I’m here and I love you – always. Praying fiercely for Lily …. And you … And your family. I’ve prayed and prayed that you would never EVER know my terror – I’m still praying and sending love. Angels of mine are yelling fiercely …. I love you more than you know.

    Like

  15. Dianne Pollaro says:

    I cry with you, Barbara. My heart breaks for you and your family. I’ve prayed and prayed for a miracle too, for sweet little angel, Lily.
    Our prayers and love are always with you all.

    The Pollaros

    Like

  16. Kathy Hedden says:

    I do not know your little Angel Lily or your family….but my heart goes out to you all. Where I live we have a brave young man who is also dealing with DIPG. My prayers to Lily and your family..God be with you…

    Liked by 1 person

  17. Nancy Coyle says:

    You and your family are truly amazing. I pray for Lily, I cry with you. There are no words to help. Lily is an angel.

    Like

  18. Carmen Rivera (Dave's mom) says:

    All my love and prayers to you, Lily, and your family.

    Like

  19. Christine O'Grady says:

    Barb and Brian, Tim and I pray for your family and Lily every *SINGLE* day.
    Love, Tim and Christine O’Grady

    Like

  20. Sharon F. says:

    I’m So sorry for your loss. I hope your precious girl is now experiencing the same peace she felt in Beverly’s yoga classes. My heart goes out to you and your family.

    Like

  21. Maria Lyubman says:

    I did not know you or Lily but I just read through your blog and bawled my eyes out. You are incredible, Lily is incredible. I wish you strength. Sending millions of hugs and prayers your way. Lily is an angel and will watch over all of you.

    Like

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