Last letter to Margot

I wrote and read her this letter our last hour in the hospital.

Dear Margot, 

Right now you are in the hospital.  Your daddy and I are here with you.  I've kissed your head a thousand times. I've nestled my lips into the bottoms of your sweet "rosy toesies."  I've said "I love you" so many times they are the only words I have left.  They are the only words that are important.

I'm sorry, Margot.  I'm sorry for everything that's ever hurt you and I'm sorry for all the things you won't get to see with me.

You are perfect.  Such a good little dancer and singer and sleeper and eater. You love the piano so much.  Your first steps were the cutest first steps.

There is no daughter in the world that is more delightful and full of sweet sunshine.

I'm writing to tell you goodbye.  And I don't want to.  It's not the way it's supposed to be, but I can't change it or fix it and god knows the whole world has gathered around you to try.  

So Mommy is doing her best.

I love you Sweet Margot.  Be happy.

Love,

Mom

Thank you

We couldn't imagine having a traditional funeral and burial for Margot.  But we did want to gather family and friends together to honor what an amazing person she was.  We picked the closest date we could, sent a few emails and everything naturally fell into place.  

The Kessler Theater was the most amazing venue for our tribute.  Jeffery, Paul and Melissa took care of everything for us and with such grace and sympathy.  Chris Holt, Salim Nourallah, Doug Burr and The Beaten Sea played such stunning and thoughtful music.  I asked The Beaten Sea if they could play the lullaby I sang to Margot every night of her life.  They couldn't, due to time restraints.  But at the end, Benj stepped up to the mic and played it and I really can't express enough how meaningful that experience was for me.  Click here to watch the video.  

Brix was our speaker and lead the moment of silence.  He's a neighbor and friend and a constant source of comfort, chocolate and homemade cinnamon rolls.


D Magazine made mention of the Memorial.  

All of our friends (that could) came.  Family flew in from all over and many met for the first time.  Our home burst at the seams with love and support. Thank you all for the dishes and coffee pot and booze and food and dish washing.

My dad has been here from the beginning as a source of comfort for us and a caretaker for Penn.  Kathleen organized an army of chefs that has kept all of us fed.  Not just fed, but fed so very well.  There are so many cards and notes of love.  I have a stack of cards from those who have donated to Children's Hospital in Margot's name.  My high school will now have the Margot Rose Scholarship for the Arts.  

Mary came all the way from North Carolina and has been here every day as an old friend who knows me really really well.  She helped me pack up Margot's room which is the hardest thing I've had to do so far.  

It goes on and on.  I doubt I will get to thank each of you personally for everything you've done for us.  I don't even know if I will try.  So, let this be a start.  From someone who is not very good at accepting help, I have had so much help.  And loved it and needed it.  Your hugs are healing.

I miss Margot.  We talk about her every day.  Everything is a reminder.  I can still smell her.  I'm devastated.  But our family is holding tight to one another as we walk through the darkest parts of this tragedy.  Thank you for helping us along the way.


**photos by Kathleen Thompson

Memorial for Margot Rose Miller

Please join us in a memorial for Margot Rose Miller on Tuesday, August 17th at 7:00p.m. at the Kessler Theater.  The Kessler is located at 1230 West Davis Street, Dallas, Texas 75208.

Salim Nourallah, Chris Holt, Doug Burr and The Beaten Sea will be honoring her with music.  Dress is very casual.  I suggest your happiest t-shirt.  It's okay to bring your children.

Please share this information with anyone who would like to come.  We love you.

You can read her story by scrolling back through this blog.


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We love you, Margot Rose

Dear Friends and Family,

It is with my deepest regret and agony that I give you this last update.  Our sweet Margot is passing and will no longer be with us.  The swelling in her brain was too much.  She had just turned one year old.  You can backread on this blog and my Flickr to see what an amazing little girl she was and how happy she made so many people.

Her organs are healthy and she will be an organ donor.  It is our hope that she can help many other babies be happy and healthy.

Our family is grieving heavily.  Although we know you are also grieving and want to reach out to help us, we ask that you do that in spirit and refrain from any Texting, @tweeting, direct tweeting and Facebook messaging us.  We appreciate your continued thoughts for our family but it is simply too difficult to look at the content on our social networks right now.  We ask that you be very sensitive to young Penn and not ask him any questions or ask him how he feels.

We also ask that you refrain from sending flowers or gifts of that nature.  If you would like to honor Margot with a gift we request you donate to Children's Hospital of Dallas where she was given excellent care by capable and human doctors and nurses who did everything they could to heal Margot and support our family.

Service details are uncertain, but I will update you as I know more.

The love we have for Margot is beyond measure as is our loss.

Sincerely,
Carissa, Daniel, Penn and Family

I love you, Margot. It's going to be okay.

If you've been following my Facebook or Twitter accounts, you know that we are in the hospital with Margot.

Yesterday evening at 6p.m. Margot was happily crawling about the kitchen while I made dinner.  She began choking on something, coughing and gagging. I had her on her stomach and tried to help her get it up.  When that didn't work I tried to use my finger to swipe it out.  I could only feel something very far back.  Then she started turning blue and gasping.  I ran to my next door neighbor who is an ER doc and told Penn to find my phone to call 911.

My neighbor began back and chest compressions and the ambulance arrived quickly and took us to Baylor. They could not get her oxygen through a tube because of the obstruction.   She had an emergency tracheotomy in ER, but went into cardiac arrest twice and required paddles to bring her back.  Once she was stable there she was transported to Children's Hospital in Dallas.

After they got her stable she went into surgery to remove the foreign object, sew up the first tracheotomy hole and put in a new one.  We are undergoing a lot of tests to determine if there has been any organ or brain damage due to the lack of oxygen.  Her first CAT scan showed no signs and her organs seem okay with the exception of her liver being a little off.  She passed the part of the neurological exam that she could pass in her state and at her age, but it did show that her lower brain stem function was in tact.   She's been having seizures today and had one EEG this afternoon and is having an all night one tonight.

She is on a lot of medication and sedatives.  She has woken up a few times and opened her eyes, but she can't focus or track.  She's very hazy.  I'm certain she responds when I sing into her ear, "Margot Bear is a cutie bear, is the cutest bear I know."

I had dropped Daniel off that morning at the airport to go to California.  He received the message when he arrived in Los Angeles and turned around, caught another flight and came back home.  Poor sweet man.  Penn rode in the ambulance and was there the whole time.  His Papa is taking care of him now at our house so we can stay at the hospital.

I'm just sharing the basic details for the moment and to be honest, it's difficult to say this over and over again.  I can't seem to do anything but cry and pet her sweet head and hold her little hand.  I want to cuddle her and hear her laugh and give her the pink puppy.   I want my sweet Margot.

I also want to thank all of you for your generous outpouring of love and offers to help.  It means the world to us.  Apologies if we can't keep up on responding to the texts and emails, but know that we do get them and we are very grateful to have your support through this.

Time for Bed, Penn

Margot has steps!

Margot took her first steps today and thanks to technology you can relive this moment with me over and over again!


She had her one year checkup yesterday and came up 22 pounds and 30 3/4 inches and in case you were wondering, yes that means she's really showing off her daddy's tall genes right now.  If you happen to note this in front of Penn please also comment about how much he is growing too.  He wants to be tall like his Mr. Daniel and Uncle Tyler and with all the talk of how big Margot is and the fact that she sleeps in his white t-shirts, he's starting to get worried.

Sometimes I paint things

Sometimes I paint things, originally uploaded by carissabyers.

Text reads, "Intuition takes me there. Intuition takes me everywhere," from the song "Intuition" by John Lennon.

I spend my days wondering when the editing and email and cleaning and child rearing will give me a break so I can play with the watercolors some more. Art isn't always about the masterpiece at the end. These are fun. Someday I'll be old and it won't matter if I'm caught up or not and I'll paint one every day.

a.k.a. The Gloved Photographer

For the past six months or so I've had a boo boo on the tip of my right thumb that wouldn't heal.  I thought it was  from a papercut.  Two months ago the same symptoms on my thumb showed up on my left thumb, index and pinky finger.  I spent some time wrapped in itchy, scaly, blistery pain, band aids and finger cots until I finally decided to go to a dermatologist.

He said it's all too small and localized to be eczema.  He thinks I have an allergy.  The first thing he said IS HE THINKS I'M ALLERGIC TO MY CAMERA.  He thinks it's the black rubber.  Or possibly, it looks like a nickel allergy.

I've prided myself on not being allergic to a damned thing for 31 years.  Now that I am nice and comfy in my profession I find out I could be allergic to it?!  I'm to try this fancy cream and if that doesn't work he sent me home with a pamphlet on a patch test which will prohibit me bathing for three days.  Boo hoo.  Boo hoo.  Boo hoo.

Random Endorsements

Last weekend Kate Mackley and I busted into the free composting class late and toting FOUR children.   [insert big silly grin here.]  BUT, we were there and we learned a lot about composting and gardening from the nice teacher.  We also got a free and really nice composting bin valued at $91!  I implore my fellow Dallasites interested in gardening or a greener approach to your organic trash to take advantage of such a seriously great opportunity.

My work assignments have me discovering some great Dallas gems this week that I will continue to attend off-duty.  The first is The Story Book House.  The walls are full of original Dr. Seuss, Eric Carle, David Catrow, Nicoletta Ceccoli  and other mind blowing children's art and sculpture.  The shelves are full of only the best in children's literature.  Story time is Tuesday, Thursday and Saturday at 10:30.  I'm bubbling over with enthusiasm for this place and it's devoted and fun and highly informative owners.

I shot the new restaurant, Horne & Dekker and YOU HAVE TO GO THERE!  It's possible dinner might not be as fun as my shoot was, but it is owned by two guys who love details, food , their restaurant and doing it right.  The hilarious website copy alone should get you there.  I'm told there's a can of Whoopass set aside for me.  You better not steal it like D Mag did.  :)  Or if you do, at least make a funny video.

I also shot the kind man behind The Ross Akard Gallery.  Go visit at the Fairmont and check out a lot of great art and a space that supports the local artists.

What are you doing?