Happy Birthday Little Angel

Dear Sophie:
Yesterday would have been your 3rd birthday. It is so hard for me to imagine what you might have looked like so grown up. Everyone said you looked like Suri Cruise when you were a baby and when I see pictures of her now, I wonder.....I'm sure you would be much cuter since Daddy and I are so much better looking than Tom and Katie!!! I do know that you would be so big..talking in full sentences, sleeping in a big girl bed, potty trained, playing with little friends....I really wish I could see you today.
Daddy, Rachel, Annie and I celebrated your birthday on Sunday at the cemetary with cupcakes and balloons...did you catch the balloons like Daddy hoped you would?
Time goes by sweet darling, and I still miss you every single day. Sometimes I worry that I am not sad enough anymore...I have to believe that you would want us to be happy, to celebrate you and honor your life by living ours to the fullest. We are trying.
I hope that you continue to visit Annie, and while you're at it creep across the hall and snuggle with Mom and Dad. I'd give anything to hold you again.
Happy Birthday tiny boo
Love,
Mommy

I am thankful

As I sit here this Thanksgiving Day reading my post from last Thanksgiving, I am so thankful that I have come so far in the past year. I am thankful that I feel thankful for anything, because I think a year ago I did not. Also I am thankful for the stable jobs Mike and I have and also for our wonderful children. For my Mom and Dad and their continued good health, my sister, who is one of the most amazing women I know...and all the usual, home food, family and friends....but really I am the most thankful for the amazing love and support that we have received in the past 19 months and still continue to receive....I am thankful for my parents and my sister, who think it is fine for me to still have hard days and still listen when I cry, for Annie, who keeps us posted on the visits Sophie is making to her, for Rachel who is always ready with a hug and for Mike, who is beyond amazing and understands me better than I understand myself.
I am thankful for everyone who helped us survive those first terrible days...for Nancy and Todd for dropping everything and coming to the hospital, for being there for us during the worst moment of our life, Renee too and to Thom and Jodi for rushing down here despite Jodi being 8 months pregnant. For Mike's Mom, Dad and Val, and my parents who somehow miraculously all appeared that very day. For Cathi, Kathy, Kathy, Lur, Ellen, and Kristin and Kirstenwho were here immediately and often during the days after. For Renee without whom Sophie probably would not have had a funeral yet. For all the amazing people I work with who supported us with food, visits, phone calls and understanding and who still continue to support us with love and caring until this day. Thankful for Mike's friend Mik who was hear for him and for Link and Kirk who flew in just for the funeral...my friend Kim who came all the way from Texas for the day...to everyone who came to the funeral or the house afterward...to Rachel's friends and their parents who made sure they were there for her.....For Nancy who organized at least of month of drive by feedings and to everyone who drove by and fed us.... I am thankful for Dr. Shah, who is the most compassionate, kind, and caring physician that I have ever known. I am so grateful for my college buds--Erin and Jen who came the week Mike went back to work so I wouldn't be alone, and Karen and Roseanne who came later when Mike went away for the weekend---they continue to love and care for me and I couldn't survive without them. I know I have missed a million people, but anyone who has listened to me (Gretchen, Tina, Mary, Antoinette, Tatum, Isa, Gregg, and my boss, David LaFrance. Oh and Maureen--my am therapist) Without all of this support I would not be here today being thankful.

Today I am thankful that Mike, the girls and I are together, I am thankful that Jen is finally pregnant (shhhh..don't tell), that Roseanne is home from the hospital, that Maya Manning was born early but healthy and is home enjoying her first Thanksgiving with Mom and Dad. I am thankful that I live in America and that the economy has not devestated my family, that Charlie got found in the Dallas airport. I am thankful for the wonderful supportive friends in my grief group
(although not thankful that such a group even exists or that we have to be in it). Thanks to Anabella who continues to read my blog even though we have never met and to Perry, whose daughter also has Asplenia.I am thankful that my friends kids are happy and healthy and that we live in beautiful Colorado. I am thankful that through the efforts of my high school BFF Jill, I have reconnected with her and some other high school friends as well....
I have so much good in my life, it didn't take Sophie's death to make me realize it, but you all really shined during this tragedy--we must be really good judges of character!!! If I forgot to be thankful for you, please don't take it personally---I am just running out of steam. Mostly I am thankful that I can feel joy at a holiday, I didn't know if I ever would again!!!

Suprise visits

This is such a cool story---the other morning, Sunday, Annie crawled into bed with us and told us that she had seen Sophie the previous night. I said "You dreamt about her?" and she said, nope, she saw her...which of course begged the question, "Where?" Annie says "In my bed, she was snuggled up next to me, then I said "night night" and she said "night night" and she flew away" Apparently her wings are gray and white. The next morning--same thing..."Sophie visited me again, she stayed longer this time, but then she said she needed to go help some other kids" I don't know if it is a dream or her imagination or for real, but I know that she believes it is real...and that is so inspiring.

Last Monday (the day before my birthday) we had another vistor in the form of a criminal who broke into our house and stole a bunch of stuff...including my digital camera that still had Annie's 1st day of Kindergarten pictures on it (that'll teach me to procrastinate....). It was pretty disturbing, we don't have much crime in the neighborhood and everyone of our immediate neighbors is retired.....but I decided not to give into the fear and give those assholes the power to make me scared. Mike, of course, was hoping they would come back so he could show them exactly what he thought. It did get me thinking though--I remember being younger and meeting people who had bad event after bad event in their life and thinking that somehow, it must be partially of their doing or related to who they are as a person some how...but now I know that shit just happens and you get what you get.....On the bright side, said criminal is in jail, we will get some stuff back, but not the camera or the sapphire necklace from Mike, which apparently, according to the perp, not worth keeping so he tossed it somewhere along with a bunch of my neighbors jewelery---now, I think it is only fair to ask, if it wasn't worth keeping, why the flying *^(&$@ take it in the first place????? The cop told me this kid, who is only 19, will be a criminal for the rest of his life.....

On occasion I feel like the world is punishing me for having been so happy and it won't let up until I give up and become miserable...which I won't do, so it just keeps getting worse. But then I pull myself up out of hole and remember all the wonderful things I have in life---all you guys, my friends, my family, my kids...and I don't let it get me down (maybe I let it get me down, but I don't let it keep me there)

The 3rd suprise visit came in the form of an email from my very best friend from high schook, Jill Travers (Sunde) found me yesterday . We have been out of touch for years. I am looking forward to reconnecting and now have one more thing to be thankful for.

Much better

So I thought I had better post once in a while when I am feeling good so I am not always breaking your hearts. Mike and Rachel moved our futon and a lamp into Sophie's room for me so I would have a peaceful place to read, compute, whatever. I am spending all my free time (ok, it isn't all that much) in there...and the rest of the family is gravitating in there too (so much for the peace--but I love it). Before Sophie died I would have been creeped out totally to be in a room, or even a house where someone had died...I remember living in this house in high school that used to belong to an old lady and I really was wondering all the time if she died there...but now I realize that death isn't scary, just sad. Sophie wasn't bad or evil, so if she was a ghost she would be a damn cute one....I just feel close to her in there, but not sad...I don't know how to explain it but it has given me a lot of peace. I have her stuffies in there and have been sleeping with her blankie...

Also, in general, I am much better...I was telling my Mom that I am not sure whether something is wrong with me, or if it is just that is has been so long since I felt normal that it feels strange to me now. I still get sad sometimes, and angry, but in general I feel more positive, more motivated, more energetic. I'm sure there will be days, many tough days ahead, but I feel hopeful for the future...thanks for being so amazing, all of you.....

A merry little weekend

We spent the weekend with my brother-in-law and my two neices--(and Tina is home too--yeah!) Saona just turned one is she is so adorable--incredibly mischevious like her cousin Sophia. Today at lunch Mike called her Sophie--it caught us all off guard, but Thom (Mike's bro) said he does it all the time. I almost lost it but pulled it back together. It was really amazing to have a little toddler around for the weekend.....

Heavy heart..heavy sigh

Well today I feel like a big rain cloud....swollen with tears but I can't get them out. One of the woman in my yahoo child loss group gave me that analogy....it is a good one. I feel happy and sad, blessed and cursed, inspired and hopeless all at the same time...I know this won't make sense to most people but it is true....I am blessed with Annie and Mike, Rachel, my family and friends, a good job, countless other things, but I am cursed also by many things, but mostly the loss of Sophie...so no day in my life will ever be a perfect day again...I will have good days, fabulous days, but there will always be a little rain on every parade for the rest of my life. Don't get me wrong, I have moved forward so much in the past year, but this may be as far as it goes.

Now that we are all good and depressed (and I am FINALLY crying...) I wanted to share this poem. It is written by a woman named Renee Williams who lost her two sons 3 years apart both at age 20. Their names were Sam (who would now be 30) and Brandon (who would now be 27) Anyway this is what she had to say about this poem she wrote:

I wrote this poem, and I know this will sound crazy but the words were not mine. These words "came" to me, were "insisted" on me while I was driving in my car on my way to church sunday. I was writing as I was driving, I almost had to stop on the side of the road. Nothing like that has ever happened to me. The only thing that might have been mine was the word "mama". I think the word I was supposed to write was "mommy". Somebody's child wanted to get a message through to their mommy. I don't who or I don't understand but I had to write it and it had to be posted. Pretty weird,

So anyway here is Renee's Poem:

It Matters To MeThe dishes pile up

you know it don't matter

The house is a mess, everything is scattered

I don't care about that, just leave me alone

Let the doorbell ring, don't answer the phone

Let me drown my sorrow in just one more drink

It numbs the pain, I don't want to think

Mama, I don't care about dishes or the shape the house is in

It's you that I care for, I know where you've been

It killed you to lose me, mama, I was gone so quick

But mama I'm free now, I can never be sick

I play with the angels and watch over youMama

make me proud of the things that you do

Your tears can fill rivers they fall like rain

But mama please listen and let me heal your pain

You used to pray to the lord my soul to keep

You did it each night before I went to sleep

It worked mama, it worked like a charm

I am in heaven mama, in loving arms

I know your arms are empty but you have much love to give

It's hard for you, mama, but your life you must live

Put the bottle away and look to the sky

That cloud is for you, the white one up high

Do you remember the rainbow I showed you this spring

Or the bird in the treetop with joy he did sing

My gifts for you mama since you gave me so much

I do miss you mama, I miss your sweet touch

But I am with you mama every where that you go

But you must listen to see me this much

I knowYour sorrow is deep like a canyon of clay

But don't slide to the bottom, just make it today

You won't see me mama in the bottom of a glass

Or in the pills that they gave you, they simply don't last

I am here, mama, in the wind that blows on your face

I am song you hear, mama, in our special place

Mama I am here but please listen to me

Your heart holds me tight and there I will always be

But i send you signs too, mama, but your head must be clear

It's my way to show you mama, that i am always near.

I think it was a little boy's voice but I am not sure...it is simple poetry, but beautifully written and I think most anyone who has lost a little one can relate, you know? Even those of us who haven't gotten lost in a bottle of booze or a bottle of pills...most all of us have considered it..and we are just as lost and unfocused as if we were.....living every day, trying to make the best of it...it is so hard......

The Owl

OK---for those of you who know me pretty well, this is going to be the post that makes you think I have finally lost it. But, an owl has appeared outside our house. He perches on top of the church across the street every night and every morning and hoots away. I have learned from a book that my Mom gave me (and NO it wasn't a Harry Potter book) that owls bring messages. So I have been trying to figure out the message. I mean we have lived here over 5 years and we've never had an owl before....Now, of course, I realize that there are maybe dozens of people that can hear the owl at night, so I am not sure why I am convinced that she has a message for ME or for US.....maybe it is because I want a message from Sophie so bad. Maybe the fact that she is perched atop a church means Sophie is telling us she is in heaven, and it is alright. I've been thinking maybe it is a message from me to lower the stress level and get in shape so I don't subject Annie and Mike to the horror of losing a loved one again.....that's what I'm going to take it as...a message from Sophie telling me to get my shit together.....I guess it could just mean there a a lot of mice in the neighborhood...but what fun is that. Any thoughts? Please don't tell met that the owl is trying to tell me to go into that church...if that is the message I am pretty sure it is for someone else :O)

Paranoia May Destroy You

Or at least cause your kid to have to spend thousands on therapy as an adult....Generally the fear that Annie will die randomly in the middle of the night has been contained, but I still do have moments. This afternoon we were driving in the car, just Annie and me and she fell asleep hard, for a long time. After a while I tried waking her up and I couldn't...I was reaching back and grabbing her leg, calling her name and she wouldn't wake up. I pulled the car over on the shoulder, right there on I-25, turned around and shook her and she didn't move---I screamed really loud and then she woke up. That can't be good for her, but she isn't a deep car sleeper and I was so scared. If there is an area that I could use help with this is it. I used to generally have faith that if my kids went to sleep they would wake up...now I don't and I need to get it back. All our lives are going to suck if I constantly worry....Annie might have some sleep disorder as an adult because she has been conditioned by me....I don't want that to happen.

Everytime I read something about a parent that has lost more than one child I get so panicky....OK, I'm going to say it...it is a possibility, right?..it could happen to any one of us. But, I can't live my life in fear that I am going to lose one of the other kids. So, if anyone has any advice on how I might deal with this I would love to hear it. I'm not paralyzed, but I sure would like for the thought to cross my mind less often.

The holidays are making me anxious again...I may have to get reacquainted with my friend Ambien. I have pondered why the holidays would be any harder than any other day that I don't have Sophie in my life...the all suck. But I have concluded that gatherings of people really highlight her absence, gift buying brings to mind the things Sophie won't open this year, the mall reminds that she won't get to sit on Santa's lap (although if last year was any indicator she might not have done that anyway), even the damn snow reminds me that she doesn't get to play in it....Every year I get the girls Christmas PJ's and they open and wear them Christmas Eve...I was shopping for those yesterday and just melted down....no cute cuddly PJ's for Soph-Soph....I honestly don't know how I am going to make it through this....the amazing people in my life I guess....although it is tough to keep leaning on all of you, and I know I should be standing on my own more.....

On another note, my dear friend Jennifer is having surgery on Tuesday...for those of you who are the praying type, please include her this week. She's very scared, but she is a tough, brave, chick and I know she will be o.k.

On the brighter side, we do have a decorated tree up in the house and I have bought exactly one present, so progress is being made..... take a look at the cute little video of Sophie's 1st time in the big bathtub!

Cry me a River

Or rather I have been crying myself a river these past two days. I don't know what is going on, but I really haven't been able to get a grip. As a result, Mike and Annie went to his brothers without me yesterday. I think the quiet time has been good and I am feeling somewhat better today. A big problem for me is that I'm not sure exactly what is making me so sad. Could be the holidays, but T-day was actually fun. There is some other stuff going on with friends that is stressful, so maybe that is contributing, but I am starting to feel bewildered again (Did this really happen? How did this happen? Why did this happen? Have I learned ANYTHING from this experience) I have also been angry the past few days....and damn do I miss our little Sophia Noel. You know, that night, that terrible, awful, haunting night, when we put her to bed for the last time, because that is what the doctor told us to do. She didn't look right, her color wasn't good, she was floppy--why the &(*#$@ didn't I know she was slipping away, why didn't my instinct tell me she needed help right then. I mean for fuck sake, how is your child 15-30 minutes away from their last breath and you have no earthly idea. I would give ANYTHING to have that night back again, to do something different. The docs we talked to after said it would have been too late at that point anyway, but how do we really know, do they just say that to try to allieviate some of our guilt, some of theirs.

I've got to get it together, I know.....Annie and Mike deserve better. I'm in a strange place, a bit of a "poor me" place and I really am feeling like no one can quite understand what I am going through (except, of course, Mike, who is wonderful and amazing, and much better than I at holding everything together). I do know I have so much to be thankful for in this life, it's out there on the periphery....Annie, Mike, Rachel, amazingly loving and supportive family and friends, a nice house, our health, etc.....but all of that doesn't replace the gaping hole where Sophie belongs, does it? I can't dwell in the past, can't stop living just because Sophia died, but how do I stop being so sad..........Mike and Annie come home in about 6 hours, I hope I can figure it out by then!!!!

Snowy days and Turkeys always make me cry?

Wow---I wouldn't have thought that Thanksgiving was going to be hard for me, but I was sad the whole week. The day itself was good, lots of family and friends, a wonderful bird, if I do say so myself (alas the much anticipated Turducken never showed...perhaps a light fingered Fex-Ex employee had a wonderful dinner on us....Regardless it was a lovely day. The only crying I did was on a walk I took earlier in the day before our guests arrived...just general missing Sophie sadness....

So much has been going on, I have been wanting to post but just haven't felt the inspiration. Anne Marie had an echocardiogram and a full spinal X-ray last week, just to make sure that she doesn't have any of the other symptoms of Heterotaxy, which the genetics doc seems to think is what is going on with both girls..a mild expression of those genes. I am thankful we are not planning on having any more children, I can't imagine how stressful that pregnancy would be. The doctor thought a 1 in 4 chance of the same thing or worse happening again...yikes. I am hoping Sophie's case will make it into the big Heterotaxy study at Baylor, but I am not hopeful...both kids have "mild" expressions. So little is known about these conditions. I have read that Heterotaxy may account for up to 1% of all newborn deaths...that could be up to 40,000 babies per year in the US alone. I know there is so much competition for research dollars...but this seems huge. I sure hope Annie can get some answers before she had kids (if she has kids). I must get going on the asplenia screen. I would LOVE to hear from other parents whose kids have asplenia but none of the other common symptons...how many are there?

I guess in the end I am thankful that both girls haven't experienced major illness (OK you don't get much sicker than Sophie did...but I mean prolonged) I am thankful that I had Sophie to hold for almost 16 months (plus the 10 months I carried her)...and I am thankful that I have Annie and Mike to love and to hold and to get me through all of this.....Rachel too, it's just that she is being so "teenager" right now (I hear you snickering Mom!)

You're not in Kansas Anymore!!!

Little by little things are getting better...I went to a party last week and was actually able to tell new people about losing Sophie without totally losing it...I worry about being "the mourning mom" though and that people might think it is an inappropriate thing to talk about... I am learning to be more private with my grief, but I also need to talk about Sophie, I can't pretend she didn't exist, that I didn't just lose her a mere 5 months ago...I told Mike I'm scared about the time when it will be longer that we haven't had her than we did have her (about a year from now). It seems crazy, it's all crazy this new "surreality" as we like to call it.

Mike and I started attending a bereavement support group at Children's Hospital this week. It meets Monday nights. It was very emotional...I started crying when we sat down--before anyone had spoken a word. I was the only one crying for a long time, and that scared me...the group is for parents who have lost a child in the last 18 months, and I know things get better with time, but I had a hard time believing that things got that much better..in time everyone cried as we shared our stories. I guess it is shitty to say that it made me feel better, but it did. It was hard to listen to everyone's story....horrible things are happening to our babies, it is hard to make sense of. The facilitator told us to be sure not to take the burden of anyone else's grief home....Right...no problem...of course I could hear the story of the parents whose little baby got sick and was in the hospital for 4 months--getting sicker and sicker and finally dying and they still don't know what happened--and not cry for them when I cry for me. Of course I can hear the story of the Mom who has lost not 1, not 2, but three beautiful children in the past 3 years and not have my heart break for her...We may come out of this stronger by all being together, but we will be weaker at times knowing the pain and sadness we all bring to the room. I think the group will be a positive experience for Mike and I, but it scares me too...next week we "tell the story of our children" That will be heartbreaking I am sure.

Something that struck me so deep was the parents that do not have answers about what happened to their children. That the doctors would ever stop searching for happened. How can a parent go forward not knowing? Not being able to make the tiniest bit of sense out of such a devesating event? One parent begged her doctor for additional tests, but eventually the doctors just gave up. It all goes back to what the doctors are taught in medical school ---When you are on the prairie and you hear hoofs, don't look for zebras, look for horses--- I can't tell you how many doctors we have heard this from. I think what some doctors have lost sight of may be that they aren't always on the prairie. I mean when you have a baby in the hospital and that baby is rapidly deteriorating....are you really on the prairie in Kansas? Or might you just be on the savannah in Kenya????????

We are learning a lot about the search for zebras...doctors seem to poo-poo pushy parents that have researched on the internet, instinctively feel there is something more seriously wrong with their child, or push for more tests. I have heard so many tales in the past 5 months of parents who have provided their children's doctors the diagnosis--sometimes of a very serious condition. Mike's gut told him Sophie's breathing was related to the hemi-vertabrae and that the hemi-vertabrae and associated scoliosis were more serious--but evolution and education have taught us not to listen to our instinct--that the experts must know it all. We have found a chart in a medical textbook that links hemivertabrae and asplenia....how about that? We parents MUST advocate, push and trust our instinct because our beloved doctors are out wandering around the prairie admiring the horses!!!!! (Speaking of which, I'll get off my high one now!) I don't think doctors have any bad intentions, this is what they are being taught in school.....anyway, I'll save it for another day. BTW--I am going to try allowing anyone to post comments so you don't have to register......