Christmas Cards...

It is hard to keep going forward in time, without... oh the cards I'm sending out this year... how they are NOT the cards I wanted to send. I'm glad to share her one last time and thank so many for their care... but each card hurts... Her sweet little face looking at me as I stuff each envelope. And as this year ends I see Time writing-over the time when she was here... The first snow this year...I remembered walking last year, staggering with my big belly, with Gwen.
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The sadness. I'm sad.

Groans to deep for words. That is my language now. Pain. Sadness.

And I feel like I failed her. I am sure of it. I didn't protect her. I did this. I lost my child because I didn't keep her protected and safe enough... she got sick. She shouldn't have gotten sick. Heart-mommies know better than to take out a two month old heart-baby into the world, among people and children. Not this heart-mama. I went to friends houses...I took her out...I exposed my tiny little baby. And created devastation that cannot be undone.

Her Aunt died while grieving her loss. For God's sake - Marie was grieving Gwen's loss and slipped and fell to her death. Then Winship... his heart couldn't handle losing his sister...

How did we care for her so well - took her to one of the best surgeons in the world and then carelessly expose her? And why did we have to loose two people we loved so much - along with our little Gwenyth Gumdrop?

How did this become our life?

It hurts so much. There is so much pain. And sadness. And anguish. And frustration with the finality that we have been handed. Three times. Nothing we can do - except wish we had done things differently, better, wiser and right.... if we had just done things right....I'd be sending out normal Christmas cards... with two living children pictured. Her Aunt and Uncle would be greeting us when we go to visit this Christmas.
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But here I am. Mailing cards. As if this is normal - to mail cards with a picture of your child that is no longer here... But, don't get me wrong - it feels good to share her and show her and let everyone know, she was really here, she was really here, she was really here and had her whole life ahead of her...

She was here last Christmas.

She was here. I remember walking in the snow...

yay for triggers

Black holes between hospitals.

I am in the midst of helping someone in one such black hole this morning (my poor mother-in-law broke her wrist while visiting this weekend and now she is between hospitals, the one here and her's way down in Chattanooga, and it is not fun and I am MAD at hospitals right now - twice in one year to witness something like this is unreal...and NOT okay. They can't be doing this to people...)

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but can't go there. Gotta keep going. Today is Lil's birthday!!! She is three today!!! Never mind other things that today is...I know, my heart knows, but I put it away - today is Lil's day. And on that note why the heck is Lil still asleep now - we are now VERY late for pre-school... what's going on and should I wake her?? Is she okay (and do you know how much it sucks as a parent to actually be worried enough on something simple enough as weird sleeplyness that BOTH of us at different times checked to make sure she was breathing - both feeling a little nutty and then to find out the other parent felt the same way - no saftey anymore. Everyday I fear loosing her - every - single - day - FEAR. Real thoughts about - what would I do??? Please GOD let me keep her, please don't take her too!!!! God? Someone? anyone? (and then I think -well, I know I would never do this again..so maybe it wouldn't be so bad. Nice huh?)
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I'm stressed.

Just a wee bit stressed. But probably more from staying up till 3:00 a.m than anything. dummy.

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but triggers - oh triggers - and the energy it takes to fight 'em off. I'm not doing so well - better wake her and get to preschool - I'm supposed to bring the birthday snack! Fail.

trying to keep the nose up

Sprial.

Down.

Can't go down. can't. Must keep up - steady - forward.

Carrying everything. But ignoring it. Mostly. Or trying to.

Today, sweet Lil walked into nursery school - after holding me for a while - she went to sleep so late and I knew she was going to be tired. She was. And today it meant she didn't want to let go of her paci or me. I held her (even as I was very late for my dentist appt. -first one since before Lil was born...). I kneeled down and held her and she held me with her strong little arms.

Soon enough she decided to join the class. I heard her then say Gwenyth's name to the teacher. And then I registered what she said as I peaked in to catch her looking down and holding out her shirt.

It is a little green shirt with a silver butterfly - the wings are hearts.


She told the teacher that her shirt was to remember Gwenyth with.


I told her when I gave it to her (knowing she wanted her own butterflies, like my earrings I have, to remember those we lost with...which is of course, another story) , this was her butterfly to remember Gwenyth with. That was two months ago now, I think. I am stunned that she recalled that and shared it today. I'm so proud of Lil - she is the world's best big sister - she takes such good care of Gwen's memory - I'm so proud.

...and sad that this is her role. This is the only way she gets to be Gwen's big sister.

Later, when packing her princess dresses to take to her friends house she said that maybe when Gwenyth grew up and got bigger that Gwenyth could wear her dresses. My brain scrambled. Uh oh. Does Lil think Gwen is coming back at some point? Is this where we learn that Lillian hasn't really understood this whole, "your sister is dead" thing?

I said all I could say - "But Gwenyth is not here anymore," as kindly as I could, with a somewhat questioning tone.

And without missing a beat she said, "Yes, but she's in heaven. And when she grows bigger there she can wear my dresses."

I told her with the happiest voice how wonderful that would be and that I'd love to think about how old Gwen would be with her, and think about when she would be big enough to wear these dresses.

Could I be more blessed? No. Two girls whom I love so much - it hurts. I love them both to tears....and sometimes like now - the sweet sadness leaves me no where to settle but overwhelmed with emotions - all other the place. My cup runeth over. But how do you describe this state of mind, what is it that my cup runeth over with? What is the word the encaptures the love for two girls balanced somehow between sorrow, pain, and thankfulness and joy?

possibly insanity?
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My red scarf - I found it when cleaning my closet this weekend. Red is Winship's color (don't ask - it's again, another story). The scarf is one that Marie also had, her mom gave us both the same one. So to find it - and see that it had Marie and Winship together - that I had forgotten it and there it was -a little bit of Marie- and of course, it is red - so I recall Winnie... I like wearing it and having it with me.

I carry them with me. Gwen was heavy enough. But they too, there isn't a choice -we carry them too - I carry and fight off all that is in my head - January. maybe January.
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I read a blog today about a little baby I'm following who is struggling for her life - and the photo today, that they posted - it reminded me so much of Gwen, that day - the day she left.

I kept trying not to look. But I couldn't help it - and that did it. Spiral. I saw myself going straight down - and I can't do that today. I can't.
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And so I write instead of getting to my enormous "to do" list on this one day I have while Lil is at a friends house.

But it helps. I'm not spiraling now. I have things to tend to that need time and brain power (one being addressing my Christmas cards - that have Gwen's picture and thank everyone for their love and care this year - I gotta get to those...I have to...).

I dropped some things off my head here and I'm not heading down into the ground anymore...

I can do this. I can keep it all at bay and be okay. I can fly straight through and stay on course.

(as if there is "a course")
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(The shirt above sold at The Children's Place)

rejecting

Christmas. This year.

Lil puts one of the first ornaments on the tree (a little bow that isn't even an ornament, but perfect for her age to place on the tree). She puts it on the tree and says, "this is to remember Gwenyth, Aunt Marie and Uncle Winship."

We haven't been doing anything of the sort lately - so it is amazing to see her do that on her own. And I'm always sure she is done with that sort of sweet thing. But she amazes us constantly and of her own volition - she remembers them with little rituals, out of the blue. It is sweet.

and sad.

I don't want them remembered. I don't want Christmas without.

And here it comes.

Myers sobbed for the second time this season. This time tonight, was after he heard "I'll be home for Christmas" playing. I think you can guess why that struck a chord.

I think I know why I've been stoic - why I'm holding in everything - because my husband is reaching his lowest since the events of Oct. I see it. I feel it. I add to it (without trying to of course). And he is sad and each day, sadder. The Holiday Season is affecting him in all the ways they warn about for those in grief. And they say, often times when one is up, the other is down, when a husband and wife are both grieving. And "up" is the wrong word, but you know what I mean.

And it is true. And I'm tired of that too. SO tired of the dance in this hell called "grief" where he and I rarely meet each other in the same plane of existence.

So to be honest - I've started to fear January a little - because I've packaged a lot away already and will keep doing so. But, it may feel really good to let go and fall apart at last, by then. Maybe when I'm taking down the tree and begin to feel a new year, full year, entire year, without, closing in...overwriting the time when she was here, when they were all here...maybe that is when I'll let go. I can see that as a strong possibility.

But for now...I'm sad in every cell of my body - but I'm rejecting it, willfully. I've too much to do for the Holidays and Lil's birthday, and a husband crumbling - it is way more than I can manage between the two.

And I can live this way. I can. It is okay. There is no choice. I don't have a choice. And I'm tired of how awful I feel - it is so exhausting to ache constantly in the pit of your stomach. So - I reject it all.

I do.

really.

this is me. rejecting. I do not accept the sadness I feel. Go. Begone. Away with you. I have no room or energy to deal with you... and you ask for all of my time and energy. So good riddance, you pesky, life-hindering, life-altering, mind-bending, unbearable sadness.

courage (with no roar...) but maybe?

Came across two songs just now...one played in the car as I was driving back from dropping my sweet Lil off at her little preschool. I've been oddly - I find - getting "signs" that now is the time to step out into doing the next thing, "doing it afraid" - but beginning to think about a younger brother or sister for Gwen. The second "sign" was today - the song...

"I won't live my life filled with doubt and fear in sight. Don't hear a word the newsman says. Some may wait for Kingdom come. I'm happy when my day is done. History waits for no one by the way."

Could I be getting to the point where I'm tired of the crappy feelings inside? Could I be ready to say, "screw it - I'm tired of it - this world sucks and I'm going to step right in anyway." I'm not going to pretend anything is rosy or I'm suddenly full of courage. But, I recall a definition of courage as "literally the amount of heart" - the roots of the word are related to the heart. So, with that - I will say - my heart is heavy, but pissed off - enough I think - that I'm ready to say "screw you," back to the suckyness in life. I'm going to be reckless - and try again.

I think.

Reckless because I'm "in the know" now - I know having children is all about deciding to let your heart walk outside the body (another good quote...I put it on Gwen's blog somewhere). Reckless because I'm not bliss about the whole baby thing - I'm onto it - I know what can happen. So it feels, for me, so unsafe - so reckless to go down that path again. I get genetics. I get chance. I get statistics and how they fly out the window when it is YOUR baby on the wrong side of the stats.

I was done with two. I was thrilled with two. I didn't love pregnancy (even as I had it fairly easy compared to some). I had the BEST - all-natural birth for Gwen, even with induction by Piticon at 37 weeks (how can I top that?). And everything that followed is now just photos and well - in a box (still in my basement - but I do have an urn...I'm getting there). I face nine months of fear and allllllll of this next child's babyhood. Life. Whole life. I fear for Lil every moment. So - again. No safety exepct to decide NOT to open our home up to a third child.

Reckless. Abandon. But isn't that all life is ANYWAY? Isn't that what I learned by now? Three people gone in a blink. And we all loved them (they were so loved - so many hurt in their absences- oh the heaviness). When you love you risk everything. Caring is reckless abandon. But, when it comes down to it - the alternative - well, you minus well fill up with nothing but anger and bitterness (all well and truly acceptable - there is MUCH to apply that to). But what's the point? And who has the energy - we, it seems, I think anyway, are designed with an inclination to love and be loved - it for sure, takes less energy.

So maybe I just ran out of energy. Maybe in some ways, this is the easy way out. Living and loving anyway. With the blinders off. Expecting pain.

Maybe. I think I'm thinking this. Or maybe it's just the coffee and no breakfast yet.

The other quote that speaks to me is "Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

And believe me. I'm not roaring here. But the idea of "Flirting with Disaster" comes to mind. I'm not venturing in this direction with any expectations except that every step will be with fear, but I think the bite is gone - the sting, of fear and doubt. What am I to fear? I've lost three (I've known Marie and Winship for 12 years -she was only 19 he 23 - they were my sib's too, they were). If I must loose more - I am helpless in it all - so why not risk it - and who knows - maybe Gwen will have a little brother or sister - here.

Maybe my children will grow up well and strong. Maybe the rest of their beloved Aunts and Uncles will stick around (please!!! God? Please). Maybe my children will survive their teens and early twenties. Maybe all of their grandchildren will be around to see them off, when their time comes, at a ripe, old, old age (oh, I look at old people and I am jealous....but that's another story another day.)

Maybe we will keep getting hit at every corner.

I don't know.

But, what the Hell? Life is only living. I have no place to go, besides the places in my head. But they aren't real. Maybe I can carve something decent out of my time here - even with my heart dragging its weight along, sick and tired of it all (all of it - the good and the bad - all of it).

I lost three. Go ahead life. You've done your worst. Please, be done. Please make this year your worst. And I know- I'm talking to the wall. Life doesn't work that way. Heartache is for the living. And here I am.

And it's okay. I can live with heartache.
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So I looked up the singer and found this song among his collection...and I think it applies to my Gwen pretty well - even though I am sure it wasn't written about child-loss I'm claiming it -except I'd rather see her down here...but it's okay - the message of the song still rings true - if she had to go then Love is the greatest healer and she's healed and full more than any of us here could ever be. Some children don't stay. Mine was one of them. Some children don't stay. Mine was one. And I know, with a heavy, heavy heart, how not alone she is - gone from here - with so many other little children.

She may be at peace, she may have been an "Angel flying too close to the ground" but I'll still be her advocate here - I'll not be at peace for her childhood gone, for her lifetime smaller than my heart believes it should have been, but I'll let her fly and try to take heart in that - that somehow her soul was too big for her little body - she needed wings -I gave her life by God's Grace- and that is no small thing, but she in the end - couldn't stay, and I pray that God did give her wings, that He is there, and I will see her again. In the meantime - today is another day and I gotta live it, for better or worse.

And yes, I'm learning to live alongside sadness. It honestly feels a bit like I'm insane. But I don't know how else to be. I can soak in the moment and appreciate beauty and goodness like never before and yet be sad, desperately sad even in the same moment - in every moment. And a little angry too. I just carry it all - and it's okay. It works.

My heart can handle simulations emotions and I'm okay with that.

Angel Flying too Close to the Ground

If you had not have fallen
Then I would not have found you
Angel flying too close to the ground
And I patched up your broken wing
And hung around a while
Tried to keep your spirits up
And your fever down
I knew someday that you would fly away
For love's the greatest healer to be found
So leave me if you need to
I will still remember
Angel flying too close to the ground
Fly on, fly on past the speed of sound
I'd rather see you up
Than see you down
Leave me if you need to
I will still remember
Angel flying too close to the ground
(sung by Raul Malow - written I think, by Willie Nelson)
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And a few more things from Gwen's blog - to share here. Worth posting twice.


"I will see you in the light of a thousand suns
I will hear you in the sound of the waves
I will know you when I come, as we all will come
Through the doors beyond the grave"
-Chapman Beth Nielsen
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There you were, and it was like spring -
like the first fair water with the light on it,
hitting the eyes.
Why are we made the way we are made, that to love
is to want?
Well you are gone now, and this morning I have walked out
to the back shore,
to the ocean which, even if we think we have measured it,
has no final measure.
Sometimes you can see the great whales there,
breaching and playing.
Sometimes the swans linger just long enough
for us to be astonished.
Then they lift their wings, they become again
a part of the untouchable clouds.

- Mary Oliver
--

I am not resigned to the shutting away of loving hearts in the hard ground.
So it is, and so it will be, for so it has been, time out of mind:
Into the darkness they go, the wise and the lovely. Crowned
With lilies and with laurel they go; but I am not resigned.

Lovers and thinkers, into the earth with you.
Be one with the dull, the indiscriminate dust.
A fragment of what you felt, of what you knew,
A formula, a phrase remains, --- but the best is lost.

The answers quick & keen, the honest look, the laughter, the love,
They are gone. They have gone to feed the roses. Elegant and curled
Is the blossom. Fragrant is the blossom. I know. But I do not approve.
More precious was the light in your eyes than all the roses in the world.

Down, down, down into the darkness of the grave
Gently they go, the beautiful, the tender, the kind;
Quietly they go, the intelligent, the witty, the brave.
I know. But I do not approve. And I am not resigned.

-Edna St. Vincent Millay

--

So every day

So every day
I was surrounded by the beautiful crying forth
of the ideas of God,

one of which was you.

- Mary Oliver

All over the place I go... wish I could get out of my head.

I'm okay. With Lil's birthday coming up and Christmas and my determination to try to live a little in this new normal... I'm okay. It is possible to function and be horribly sad. It is. It is possible to stuff it... and sometimes I wonder if I'll just wait until I'm 60 or something - then I'll be able to process all this in my head... and until then I'll keep trying to honor Gwen by being the best mom I can be to her and to Lil.

But -that said -I'm mad. I'm mad that this year has robbed me of grieving my sweet Gwen. Today my good friend - one who was there in the room with me after I lost Gwen - while I held her and held her - today this friend, she asked me how old Gwen would have been.

I had to think. I got it wrong. I finally figured it out - but nothing sticks in my head - so right now I have to think. She would have been 8 months old. I can't stomach that. I can't believe that. I also can't believe that I haven't been following... But how could I? With all that has happened my brain can't hold anything in it. I watch my brain not work - I actually see it not working. I retain nothing these days.

So I am angry that I have been robbed of being a good mother to my angel. I am trying to start planning what will happen for her birthday. But I've not really marked any anniversaries along the way - not really. So much so that I lost track of how old she was - and I think it is in part - because I don't want to know on some level. But it is also because it is more than just Gwen that my heart carries...

Yet when I think of the age she would be -- I think of what Lil was like at this age - I think about just what she might be like - and I loose an 8th month old child. So maybe it is a bit of both being so knocked out of time twice combined with not being able to handle thinking on all I lost of her...

I don't know how many months it is since she left either. Not off the top of my head. But really that is because I can't tell what month or year it is anymore. I was almost settling into things, I think (and whatever that even means) then October happened. And I was knocked off the grid again. And my memories from last year - the diagnoses and all that followed - are so strong - the last time I saw Marie - everything - it is not a year away at all - my brain can't separate then from now... I'm confused and exhausted in Time.

And I'm mad too, because, I don't have the bliss of ignorance anymore. I know two people - close family members - a brother and my sis-in- law who are expecting. I just found out about my brother. It is very early...I probably shouldn't even speak of it here - but so far as I know - they and no one I know wanders around this back ally in my life.

I'm mad. Because behind all my happiness for them - I'm scared. I'm smiling for them while in my head begging God - PLEASE, please spare them anything remotely similar to any of this... please God give them healthy children, please! I'm MAD because that is how I experience this happy time in people's lives - with fear and no safety.

I'm also MAD to have recently learned - that on Gwen's autopsy her death is labeled as inconclusive. I am told it says something like, "probably an infection and probably viral." But her death is considered unexplained. I learned that this week while at Lil's 3 year well check-up.

I'm mad that our meeting at UVA didn't leave us with an "inconclusive" impression -we thought they really believed the viral infection cause enough to conclude that. We knew they were not sure - no cultures existed to prove it - but we didn't know they considered it case-open. So it is a little harder to swallow - to know they aren't SURE just what happened. They KNOW it wasn't her heart. That's all we know for sure.

I'm mad that I know more than Gwen's doctors, still, about what she had. Her pediatrician, she is great, but she didn't recall that Gwen had a bone marrow analysis. It came up while speaking with me the other day and she didn't remember that, yes, Gwen had her bone marrow analyzed. Gwen's was a cinch since she already was having her bone cut so they could get to her heart - and with that they were able to be sure her neutropenia was auto-immune and not a problem in the marrow which was far more serious (Gwen's blood issue being called congenital autoimmune neutropenia -I believe - based on my own Google research. I still need to have a doctor actually give me that name).

I just feel a little uneasy when doctors don't recall details like that -that we knew for sure, there was nothing wrong with her white cells at the source. It seems like she should have known that. And there was another small detail that she didn't' recall - regarding a possible hypo-pigmented macule on her back. Both issues, the blood and the macule along with cysts on her ovary's that the autopsy revealed - are all consider random and of no consequence to the doctors - that is to say they were something but they did not contribute to her death.

I'm mad that the doctors never sat down face to face to discuss her case. I'm mad that the cardiologist at UVA never asked us for her records from the hospital where she died. Because of that, during our meeting, she couldn't tell us when Gwen died (we were not there when her heart stopped and I wasn't exactly looking at the clock after we arrived). She couldn't tell us if Gwen had been given an antibiotic and other small details that our brain dumped that day or never clued into during all the chaos.

So, now we have to go to our local hospital and request the records be sent to UVA - even as it was their helicopter team that was in charge of Gwen during her last hours (or however long it was, since again, I have no timeline from that day). I have been supposed to go do that errand since whenever we met at UVA (I honestly can't recall if it was Sept. or Oct.).

All her info will go in a database and maybe someday dots will be connected - but for now - she had these other issues but supposedly none contributed to her death and none are any concern for future children. I have one more doctor to quiz on this - and I will - but - for now I'm just mad that with all this information - we've got nothing but a sweet baby I can't hold anymore and fear every step of the way should we try for a third child.

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I want a week off from regular life- with no other responsibilities - so I can work through everything, everything - regarding Gwen, and Marie, and Winship. But life doesn't work that way. So I carry all this stuff and in little pieces of time here and there I sit with each of them and try to figure out how to let go and yet honor their lives well.