Monday, March 30, 2009

It's my bedtime. But I haven't slept well the past few nights--I have too much on my mind.
We have embarked on a new adventure, a new, expensive, crazy, dangerous adventure.
Zar and I went last Wednesday to the Infertility clinic. It was strange to explain things to the doctor who had not yet looked over our medical records. We have had two pregnancies. Neither of them were "Planned." Both resulted in a live birth. "So why are you here?" he asked.

The doctor was compassionate, and knowledgeable, and honest. He made lots of sighing noises while looking over our karyotypes. There were multiple long silences as he stared at his own drawings on the white board. He began our education in yet another language.
Charlotte taught me a new lexicon, on top of the dozens of medical terms I already had read about in school. Balanced Translocation, CTT (carry to term), trisomy mom, SOFT. Now it's ICSI (icks-si), FISH, Hyper Stimulation Syndrome, Lupron. Our lives, and our vocabularies, are never boring.

Nothing is for sure yet. We have a test or two to undergo before we make our decision. There are special considerations. So although we aren't committed, there is a lot to think about.
What keeps coming back to me, is even if we go through with this, and go into tremendous debt during a dangerous economic time, and even if I give myself shots every day for weeks, and go under anesthesia, and some embryos survive, and are healthy, and the transfer goes well, and the bed rest works, and the shots continue, and the test is positive...after all that I still have to be pregnant for 40 weeks.
Not to mention the possibility of miscarriage, or other genetic issues not tested for, or my high risk for hyper stimulation resulting in cantaloupe sized ovaries and a gut full of fluid. And the no guarantee. No guarantee! So don't ask me why I can't just have faith, get pregnant the old fashioned way and let the chromosomes fall where they may. Pre-Diagnostic In Vitro Fertilization takes lots, and lots of faith.
And money.

Tuesday, March 24, 2009

Ella got her pictures back today. Can you imagine a more gorgeous girl?
Thank you so much to Katherine Wallin for taking these for us. She has more of Ella on her blog at

Do you remember watching Disney movies as a kid, and loving them, and acting them out, and knowing every word in every scene, every song?
And when you look back, can you believe how very TERRIFYING some of those scenes were?
A friend at work said she had bought Pinocchio for her son.
"Oh I loved that one" I say..."except for the scene where the bad drunk boys turn into donkeys--haaaw hee haaaw hee! TERRIFYING! But man I wanted to BE that goldfish Cleo!"

And I loved Alice in Wonderland, which now of course I occasionally have nightmares about. Do you remember the part where she is standing on the trail thinking it will take her home, and some dog with a broom for a head comes and sweeps the trail away on either side of her so she is standing in the dark all alone on a little patch of purple? I remember feeling so homesick for her, so lonely. I could go on for hours about that movie, those creepy tweedle dee and tweedle dumb characters, the baby oysters getting eaten, the mean flowers, the stoned caterpillar....but I loved it.
Then of course there was Bambi and the sound of the gunshot ringing through the meadow that took his mother, and the strange fact that his father "The Great Prince of the Forest" was never really there for him until his mom died. And the dragon in Sleeping Beauty who rises from the thorn patch screaming "Now you shall deal with me, Oh Prince, and all the powers of HELL!" The Fox and the Hound had the hard lesson that sometimes you just can't be friends because you are too different...right? That's what I got from it...and the foxes mom got shot as well if I recall.
In Snow White the stepmother wanted her DEAD, just because she was pretty. And then she got poisoned when the woodsman failed to cut her heart out. Sheesh.
I cried during Dumbo when his mom had to rock him with her trunk hanging through the bars of her little boxcar jail, to the words "Baby mine, don't you cry..." which I still occasionally sing to my daughter. And why were those other elephants so mean anyway?

Alma told me last night of a show on now where they take classic children's stories and change them so the moral is totally lost--the tortoise wakes up the hare and they cross the finish line together, the boy who cried wolf was really best friends with the wolf and was telling the truth each time he called out Wolf, the wolf would just run away when his family came out...what the? That's just ridiculous. Whats the point?

There are hard truths in this world. People are unfortunately, unnecessarily mean, like all the characters in Alice in Wonderland, and the elephants in Dumbo. Death is a part of life--as taught to me by Bambi, every mother who died and left their daughter to be raised by a stepmother in every princess movie known to man, and Mufasa, of course. And there are scary things, unfair things, and the sooner you learn that the better, right?

I wondered allowed last night, if the Disney movies of my early childhood prepared me somewhat for the hard moments of my school years--when I was made fun of in kindergarten at least I could liken myself to Cinderella and my tormentors to the ugly, big-nosed jealous stepsisters--and not completely fall apart.

Is there something to be said for letting your kids be heartbroken, terrified and confused by brightly colored beautiful animated characters? Perhaps.

I cannot deny my Ella Cinderella. I kind of hope she notices the similarities in their names and feels special for it. (There were no princesses named Errr-in. Arg.) I cannot deny her Ariel or Simba or even Sleeping Beauty. I don't want her to take her first trip to Disneyland, see a big headed plush character coming in for a hug and say "What the heck is that?"

Did Disney movies prepare me for life's tough lessons? For bullying, for mocking, for homesickness, for regret, or being dumped, for multiple heartbreaks, for failure, for death?
Last night while driving home I was missing my baby girl, and imagining meeting her again and holding her smiling and laughing and knowing it was all worth it, and do you know what came to my mind?
Cinderella. She was singing "No matter how your heart is grieving, if you keep on believing, the dream that you wish...will...come....true!"

Sunday, March 22, 2009

A month has come and gone since Charlotte left. I have been told time and again that the first year is by far the hardest. Only 11 months to go.
And yet, I continue to have joy in such abundance that at times I feel guilty. Didn't I just lose a daughter? Shouldn't I be filled with such anguish that I can barely function? It is what I always expected. But life surprises me again.
Of course I cry. Of course I hold her picture against my chest, of course I stand in her doorway each night and just stare at her empty bed, of course little things hit me and break my heart--seeing a tube of her Elmo toothpaste in my overnight bag. Calling down to Zar "Call your mom and ask what time she wants the girls..." moving her monogrammed bow holder to Ella's room and telling myself the "C" stands for "Clips."
My heart will always be a little broken.
There is still
I say her name and smile and laugh, remembering.
I attribute every good thing to her--every found set of keys, miracle parking spot, good dream, I think "Thanks Charlotte!" even though she doesn't care where I park.
I see her everywhere. I seek her out. I go to church with Becky at the hospital, and the dear boy in front of us has her same knowing sly smile...and flat head. In the PICU I occasionally glance at the small space in bed 19 where she spent her last moments on earth, but it doesn't destroy me. I visit Becky's Ben there, who has soft skin like she did, and a g-tube like she did, and his big blue eyes are suddenly so full of knowing that I wonder if he sees her. And I think he does.
I am quicker to smile now, to brush aside small annoyances for what they are--small! So small! And most importantly, I don't want to waste another moment. There is too much to do, to learn, to make right to sit and be sad. There are people to talk to and babies to hold and things to be found and remembered. There are books and songs and mountain trails that want attention!
Unfortunately there is also laundry to fold and basements to organize, but even those things bring satisfaction. To be busy is key.
So even in the quiet moments before I fall asleep, when I'm tired and vulnerable and missing my nightly chores of filling the feeding bag, pulling up meds, and hooking up lines, I can thank Charlotte. Thank you for making me so much better, for giving me amazing perspective and teaching me what matters. And even though I ache for missing her, I know the morning will come.
My new motto:

Shared joy is double joy.
Shared sorrow is half sorrow.

or something like that.

Wednesday, March 18, 2009

Just had to. Sorry. But had to follow up my sad post, and my mind is blank.

One night I had a wondrous dream,
One set of footprints there was seen,
The footprints of my precious Lord,
But mine were not along the shore.

But then some stranger prints appeared,
And I asked the Lord, What have we here?
Those prints are large and round and neat,
But Lord, they are too big for feet.

My Child, He said in somber tones,
For miles I carried you along.
I challenged you to walk in faith,
But you refused and made me wait.
You disobeyed, you would not grow,
The walk of faith you would not know.
So I got tired, I got fed up,
And there I dropped you on your butt.

Because in life there comes a time,
when men must fight and men must climb,
When men must rise and men must stand,
Or leave their buttprints in the sand.
-Unknown Author

I don't think the Lord gets tired or fed up with us, no matter how stubborn we are being. But I also think He has a sense of humor.

Monday, March 16, 2009

I have a little trisomy group online. I used to get dozens of emails a day from the group. There were medical questions and concerns, triumphs and disasters. When I was pregnant and Charlotte was newly diagnosed, the first words of encouragement I received were from the trisomy group members. "Congratulations!" they'd say, and "don't be surprised if your little one decides to hang around and enjoy her family despite what the doctors may say." Later I asked them about birth plans and photographs, and then oxygen and airway floppiness, and apnea and feeding tubes, and preschool and wheelchairs, and airplanes and Make A Wish, and finally, my last post to the list was called "Down Tonight." Charlotte had about a month more to spend with us when I wrote "Down Tonight." It said simply that I was discouraged, and tired of hearing Charlotte cough in the night, and tired of her alarms going off, and sad that her oxygen need had gone up, and that I felt, deep in my secret heart of hearts, that she was getting ready to leave us.
I received lots of responses, words of hope and encouragement, and little online hugs ((((erin))))
and promises for prayers and good thoughts. And I got a few notes, from others who had lost their children, that said they had felt the same in the weeks and months before. Before. And now it is after.
I am Down Tonight again.
I cleaned off the counter top corner of Charlotte's little needful things. Honey for her cough, children's tylenol and motrin, various homeopathic cold remedies, bought with hope and a bit of guilt, benadryl I wasn't supposed to give her, but did, once or twice, in tiny 1/16 doses, hoping it would clear her dear little sinuses. Little bottles of hope and faith, put up in the cupboard for when Ella may need them.
Since Charlotte went, I turned the settings on my trisomy list to the digest mode. Instead of dozens of individual emails, I get one, with various topics, and responses, which sometimes I read and sometimes I delete. I joined the list "tri-wings" for parents, like me, who have lost their child who happened to have a trisomy. Tri-wings is lonely. There are very few triumphs on tri-wings. There are very few funny stories, there are no medical concerns, no announcements of hospital stays, of surgeries, complaints about bad doctors, praise for good ones, advice about adaptive toys, talk of medicaid, feeding tips, no everyday happy sad stressed exhausted chat.
Everyone on the tri-wings list is down tonight. It's all we have left to say.

Friday, March 13, 2009

I have thinking a lot about what to have engraved on Charlotte's headstone. I wanted it meaningful, beautiful, and not too cheesy. I had looked through pictures online of headstones for ideas, at hand drawn pictures of flowers, even at tattoo sites. Putting an image on Charlotte's headstone is my tattoo. Except it will last longer and won't stretch wildly or melt and collapse on itself in the coming years as I continue to age and turn to goo.
I had thought a little simple sprig of flowers would be cute, or a branch with flowers, maybe a bird. But it wasn't meaningful. Zar suggested a pair of glasses, her favorite toy, but I think it would be confusing and look silly. Yesterday I was laying on my stomach pulling books out from under my bed, and pulled out a little book by Carol Lynn Pearson, who I deeply admire--called "Consider the Butterfly."
So I did. I thought about it, and this morning I went into Charlotte's room to turn off the princess nightlight I switch on every night, and saw the above picture in a frame on her wall, right in the middle of a group of 9 pictures chronicling her life. The last space is still blank where I meant to put a picture of her and Ella, but haven't yet.
So I thought about the butterfly more.
Today at work, I was thinking about the book, and thinking about Carol Lynn Pearson, and how we have had some similar experiences in our lives, particularly that she lost a daughter to brain cancer 8 or so years ago. And here I've lost a daughter too. So I went to her website, to see what she's up to.
I found this quote:
"What the caterpillar calls the end of the world, the master calls a butterfly."
-Richard Bach
And I learned that in Greek, which Charlotte's uncle Jakey speaks every day to give people the hope and light and joy of the gospel, the word for "butterfly" and "soul" is the same. And I learned that a caterpillar actually changes it's DNA when it enters the chrysalis--changes it's DNA! Like my Charlotte, who's DNA was built with multiple errors, and missteps, and deletions...and now is perfect.
And now, sitting here typing this, I glance up and see the monarch butterfly made of feathers that was part of the first bouquet we received after Charlotte passed away from Zar's aunt Linda and cousin Katie. They came to see her in the hospital just an hour or so after she had gone. The butterfly is now on my mantle, hovering in a vase. And I recall the pink butterfly the nurses hung outside Charlotte's hospital room after she had gone, to let others know of our loss, so they would be considerate, and quiet, and not come barging in with a mop. So they would know that she had flown.
So, I haven't discussed it with my husband, but right now, I'm really considering the butterfly.

Monday, March 09, 2009


Dang it. I missed this day yesterday. I was going to write something. But for now I will repost this. It still holds true, but I would say the r word offends me more now than it did then.

Originally post March 2009
When I first brought Charlotte home, I was very sensitive to the r-word. I would hear it constantly, especially at work. Every time I heard it I would cringe and clam up a bit, and promise myself next time I would say "oh, like my daughter you mean?" But I never did. And no one ever seemed to realize what they had said. So I decided that I shouldn't be so sensitive, that the r-word didn't refer to my sweet beautiful heaven-sent daughter, but to some dumb situation, and I should let it go. And I have for a long time.
This morning the r-word was mentioned briefly in a staff meeting referring to protected groups and discrimination, and I almost, ALMOST piped up and said "yeah, I for one, find that word offensive." But I didn't.
But I thought about it all day, and got kind of annoyed. I stopped saying "That's gay" years ago once I thought good and hard about it. I don't want to offend anyone who is gay, or has family members who are gay, yet I don't want to offend anyone by asking them to not say "That's retarded?" I have a daughter who under the old jargon, was considered "retarded." That term annoys me, albeit moderately. But I know for a fact that I am on the mild side of this, that many mothers and fathers and siblings of disabled people HATE this term so strongly that they will get in your face if you use it innocently. Only once or twice, and only to close friends, have I pointed out the hurtfulness of this term.
So as a public service announcement, I proclaim the following:
To use the phase "that's retarded" is offensive. I can barely type it without feeling a little sick. I know almost every person who uses this term does so innocently, and doesn't even connect the term with people who are in some way disabled, but that's what it means. It means you think something is stupid, wrong, or my child was?
So cut it out.
I tell you this to let you know how it makes people like me feel. I tell you this because the movement to stop the use of this word is growing, and next time you use this word you may use it in front of someone not so polite and understanding as I am. And who knows, I may stop being so polite.
For myself, and for daughter, and for the millions of others out there like me, like us, I ask you to think before you use the r-word.

Sunday, March 08, 2009

Zar and I went to visit Charlotte's grave today for the first time since the funeral.
She has no stone yet, just a little mound of dirt in the grass. There were a couple dried carnations from the boutonnieres the pall bearers wore in the dirt. That was all. It was quite humble.
"huh." I said.
We brought tulips. We asked Charlotte if we could give one to Ava, the baby buried near her who was born and died just weeks before Charlotte was born. Charlotte said no, they were her tulips, but we gave her one anyway. We said we missed her, and we would get her a beautiful stone soon, and we went back to the car.
When I got there I put Ella in the car and saw, in the pocket of the front seat, one of the giant Disneyland lollipops Shannon gave Charlotte for Halloween, which I never let her eat because it would've been a crazy mess.
"Perfect" I said, and I ran back to her grave.
So now, instead of just a sad little mound of dirt, she has a little headstone. It is small for a headstone, and made of sugar, and is Charlotte for sure.

Friday, March 06, 2009

I went to the gym this morning. I fed Ella at just after seven and noticed Zar was still in bed, my ever so slightly used gym clothes were on the floor, and the gym is six minutes away. So I got dressed, pulled my hair back (I am so over putting on makeup or even washing my face before going to the gym) and zipped out the door while Zar protested that he had to leave for work pretty much immediately, even though he was still looking like a stubbly half asleep lump.
I did 25 minutes on the elliptical watching the news (belly dancing fest this weekend, another snow storm, big explosion in Bozeman) next to my former personal trainer, a beautiful tiny slip of a thing who used to caliper my arm fat for me. I am wearing ever so slightly used floppy gym pants and an XXL T-shirt proclaiming my love for Fish Lake. And bleach stains. Nice. I kind of want her to say hi, that she hasn't seen me around for some time, and whats with the ultra short not really worth it workout, so I can explain that I just had an 8 pound baby four (okay, five) months ago and lost my other daughter less than two weeks ago. So LAY OFF.
But she doesn't say hi, or even turn her pretty profile, but I am pleased when she goes back to her desk before my 25 minutes are up and I have to skedaddle out the door without so much as stretching, let alone lifting anything other than my ipod and car keys.
I get home at 8:06, and Zar is standing at the top of stairs in the garage door, pretending he always leaves the house this early and I have delayed him.
And it is so odd, I think, as I hang around his neck in the garage and he says our morning prayer (please keep us safe on the roads, free from harm, accident, or speeding tickets, and please help us to not be so sad and remember the good times) that a grieving mother such as myself would have the audacity to go to the gym.
"I didn't expect you back to work so soon" say half my co-workers last monday, 9 days after Charlotte went home.
I talk with Katie at Chilis about the funeral, what a tiny casket can cost, about the cheesy daisy engraving that was on the lid but covered by the tulips we picked out, and I can tell the people at the next table are listening, maybe a little shocked, and would be more shocked to know this funeral took place 10 days ago.
But life goes on. Work must be done, money earned, chips and salsa consumed, and 25 minutes of alone time at the gym is therapeutic if not all that effective. I miss Charlotte. Life is more quiet, less busy, and I am surrounded by wilting flowers and cards, but it does, indeed, go on.

Thursday, March 05, 2009

I have been asking myself these past few days why I am so blessed. I feel so blessed, in fact, that it makes me fear that I haven't been through enough and the last few years have only been preparing me for something more. 
Why was I blessed with three and half years with a beautiful, sweet, amazing child who wasn't supposed to live a day? Why was I blessed with knowing her, with seeing her grow, seeing her learn and love and progress? She should not have done any of that.
And I have been blessed with incredible friends who adored her as well, who take care of me and my family. I have an equally amazing family on both sides who treasured Charlotte and still do. I have more support than I can say. I am carried through everything. 
And before Charlotte went home, I was given another daughter, a beautiful little sister to Charlotte who comforts me beyond belief, and inherited all of her sister's little girl things so they didn't just become painful reminders. 
And in the end, we were all there, her whole family, to hold her and kiss her. She didn't go in the night. She didn't go in fear, in pain, amidst desperate what ifs and emergency telephone calls. She let us say goodbye and know we had done all we could do. 
And now, even though I can't hold her body, I feel her as close as if she was still in the room. And I think she is. 
I feel like the luckiest mom alive, and it truly does scare me. If this isn't more than I can bear, what more can I expect? 
All I can do is be grateful and try to pass on the blessings I have received, and hope the valley of despair isn't yet to come. 

Tuesday, March 03, 2009

The last time I held Charlotte, I knew it was the last time, and in fact she had already gone. I held her against my chest with her head on my shoulder and I said "oh I will miss this delicious weight." And oh I do.

Ella is a different weight, less by half (half her weight at five months!) and full of crazy baby energy, like a coiled spring. I am so grateful for Ella and her happy blue eyed smiles and I know she has saved us from unthinkable loneliness.
If she wasn't here for me to hold, missing Charlotte's weight would be unbearable. Even though it feels different, Ella is more like Charlotte than anyone else on earth. They are cut from the same cloth and I'm happy Ella's blue eyes echo Charlotte's, and they have similar crazy hair, and they both like scratching the sheets as they fall asleep.
I'm also happy Ella is all sweetness and easy smiles and contrasts with Charlotte's smugness and knowing sly grins. Ella reminds me of Charlotte, but not so much that I can't enjoy Ella's goodness while remembering Charlotte's Grace.