Flower Nazis--Really?

So we got notification from the cemetery that there are "new regulations" regarding flowers and decorations at Crown Hill. They are sending me a brochure regarding the details but they did tell me that you can only place flowers, in an approved vase, for special occasions such as birthdays and holidays. To do this you have to stop at the cememtery office and record the special occasion with them, then they will give you a pink tag which allows the flowers to remain for a week....really? Can the special occasion be that I miss my sweet little Sophie and was thinking about her and wanted to take some flowers? What if my parents are in town and want to go by the cemetery. Now I realize we can go there and not take anything, BUT it is a part of the process. There are families that have pinwheels, toys, stuffies, flowers, etc....it doesn't look tacky to me, it looks like families are grieving and honoring and remembering their loved ones...this is a cemetery, not a covenant controlled community. I think a lot of people might have made a different choice about where to inter their loved ones had they known that even placing flowers is limited. I used to go every Friday, it is important for me that her grave not be abandoned, that people who walk by there know she is loved and remembered...

Mike's theory is not to worry about it, to do what I want to do because what are they really going to do? I doubt they would evict Sophie...but even if they did, we'd just bring her ashes home. So that is what I am going to do. On Monday it will be two years since she died---I'm going to cover her headstone in flowers...ha!

Too Good to be True

So I had a bit of an ephiany today. In wondering why it has been so hard to do the things we need to do to move foward--get a new kitchen in the rental condo, exercise, set and keep goals--it occured to me that maybe subconsciously we don't want to move forward. Not for the obvious reason of leaving Sophia behind, but more because if life gets really good again something bad will happen. You know when Sophie was born, I had two healthy children, a great husband, house, job, Rachel.. I was dumbfounded because I never thought my life would be that good...i said as much to Mike all the time...like things were so good that I was worried something bad would have to happen to cancel it out. Of course I was thinking something more like me getting cancer or a tree falling through the roof. Anyway, I finally convinced myself that I was generally a good person and really deserved everything I had. Then Bam---it all was shattered. And that is why I think I am afraid to move forward....

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

Sophie's Horn

Annie told us the other day that Sophie had gotten her horn (we were confused thinking she did something bad and got a devil's horn) Turns out that she has been so good in heaven that she got a horn to blow at the gate to call in other babies that have died. Amazing.....apparently she has welcomed 1o other babies into heaven.

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......

A little gift

For years Mike and I have had a collection of undeveloped rolls of film and disposable cameras that we have accumulated in a drawer....I always say I am going to take them and mail them to Seattle Film Works...but out of sight out of mind....the other day I took them to Costco to get developed--there were 10---some of them predated Mike and I. There was a whole roll of my niece playing soccer when she was about 8...she is 16 now!!! Well all in all there were about 10 pictures of Sophia that I had never seen before. I was so surprised because we had a digital camera since before she was born. Some of the pics were even recent (you know what I mean) What a bittersweet surprise...there is one of me holding her....it isn't the best picture but I cherish it because I was the one always taking the picture--you know?

I am having anxiety about going to Florida on Saturday. I don't want to be away from home. I haven't been able to figure it out, but I think I have now...we have been so crazy busy both socially and at work that I have really been tamping down my emotions. At night when I think I can spend some time with my sadness I just haven't had the energy. Now I am going to have 4 long nights by myself and I am afraid the floodgates will open. As Mike pointed out this is not a bad thing, I probably need it, but I am going to be all alone, so that makes me sad. On the other hand, I'm going to be at the ocean..so long solitary walks on the beach, watching sunrise, reading and writing to Sophia...it might be just what the doctor ordered.

I have found a new yahoo group full of amazing people who are helping me see that we all struggle being a member of the club no one wants to be in...that we have tough times where we are at the botton of a dark, dark, place...and that we pull through. One amazing Mom on there is my age, she lost her 4 week old son to SIDS 19 years ago and has never talked about it. She has other kids but her heart is still so broken. I thank everyone who reads this (thanks for the comment annabelle) and who still calls me, hold me when I cry, cries with me, loves me and understands that I am not "better" Without you I am nothing.....I love you all so much

Looks Like We Made It

Yesterday was April 27, one year since sweet angel Sophia Noel took her last breath. It seems like forever since I have held her in my arms. We made the weekend a busy one, which turned out to be the right think to do, at least for us. I really struggled last week at work and kept losing it, but Friday night my friend Tina flew in from Atlanta, and a bunch of my friends (Cathi, Kathy, Kristin and Shannon) came over and we made Team Sophie T-shirts--oh and drank a bunch of wine. It was fun and we laughed and cried a bit, it is amazing to have such incredible friends. After going to bed at 3:30 a.m. and getting up at 8:00, Saturday was a bit of a challenge...we had a birthday party (for a two year old!) and then had to get everything ready for Sunday
Sunday itself started a little strange. As we were getting ready an ambulance screamed by right around 6:00 a.m.--it doesn't happen by our house very often so it was a freaky coincidence and it really threw Mike and I for a loop. Then Mike was getting a backpack ready to go and pulled out one of Sophie's pacifiers. It was too much. Amazingly the rest of the day was pretty incredible, about 40 people showed up to run or walk with Team Sophie, all wearing t-shirts with her picture on the back. It was hard to be really sad with that much love and support surrounding us the whole time. We came in nearly dead last too.....but nobody cared!
At the finish line Sophie's day care teacher Miss Laura, who we hadn't seen since last summer--noticed Sophie's picture on the back of someone's t-shirt. She waited around for us and was so sweet. They still think about Sophia at the Wooden Shoe and were headed out to the cemetery to place some flowers.
Today Mike and I are mellowing out at home, trying to decompress. I feel as though maybe we have turned a corner, having been through the firsts (birthday, christmas, easter, etc) but maybe it is just wishful thinking.....Thanks everyone for loving us so much......

Can't we stop the world just for a minute?

Wow--it really has been forever since I posted. I have been doing really well, just the occassional stunned moment, or something catches me off guard and I lose it, but mostly things have settled down and I am doing o.k......That is until this week, things are really starting to get tough. I am so fortunate to be loved and supported by so many amazing people...that helps. I have read many stories of people who have lost a child whose family and friends think they should "be over it" Nobody in our life is like that--not our family, friends or bosses. I think everyone we know has been impacted and are not over it themselves, this is every parents worst nightmare, right....so anyway, I feel blessed to have so many kind, giving, generous, loving people in my life.

A friend of mine just had an amazing, beautiful little baby girl...she felt guilty talking to me about her and I told her that I don't have any jealousy of other babies. They still bring me the same amount of happiness and joy that they did before we lost Sophia. No one contributed to our tragedy, so no one has anything to feel bad about.

On the advocacy front...not much going on. I did find an article which said that the incidence of congenital asplenia is 1 in 2000....way higher than most of the diseases they test for. This same article also told of two siblings who developed sepsis and were found to be asplenic. They then tested the rest of the family and found that the mom and another child were also asplenic. It really rekindled my curiosity about whether Mike or I might be asplenic.... We decided to move forward with getting blood tests for us and abdominal scans if we can....

Mike wrote this amazing letter to the group savebabies.org that advocates for newborn screening. We got a letter back (which I can't find at the moment) from the head of research saying that we should keep pushing forward with this, the main obstacle seeming to be that the screen can't be done with a filter paper test. Anyway, here is the letter...I will probably be posting much more this week...it is shaping up to be a tough one....

To Whom It May Concern,

My wife and I are very interested in learning more about the Consumer Task Force on Newborn Screening as the recent death of our 16 month old daughter Sophia, in April, from undiagnosed asplenia (and the resulting overwhelming sepsis) has sent earthquakes through our life and family. We are committed to furthering knowledge and understanding, and have been in contact with many doctors, some on a national stage, even state legislature, to see if something can be done to minimize a repeat occurence for someone else's family. My father, Marty Wilcox, was a founder of ultrasound in obstetrics in the 70s, and he asked a simple question after Sophia passed. If someone who suffers from and does not have the means to combat simple bacterial infections due to the lack of a spleen, couldn't much be done to ensure survival if diagnosis can be made early through a simple organ checklist being taken when the mother is already most likely getting ultrasounds done for her unborn baby? Howell-Jolly bodies are indicative of a failed or missing spleen in the blood of such an infant. Can't an additional test be added to the blood draw every infant goes through in their first days of life? Polysplenia is another problem that could be ferreted out with such tests. The treatment is a simple one, antibiotics and parental awareness. Sophia was asymptomatic in most regards, and though her medical file is large for one her age, she didn't have the more severe syndromes associated with asplenia like heterotaxy or Ivemark's Syndrome. There were signs we have found after the fact like breathing issues and a hemivertebrae, but those connections are all the more sorrowful now.

We feel compelled to make her short life and death helpful to others. Please let us know any way we can help, and we will both become familiar with your Web site and efforts.

Thank you,
Michael and Grace Wilcox

Nothing to Report

Why post then? Well just to let everyone know that I am doing really good. It feels awkward to say that, y'know...like somehow maybe I shouldn't ever feel really good. But I do, and I know it is o.k.

I am getting nervous though, thinking about the big April 27 milestone. We've planned to do the Cherry Creek Sneak as a family--the 5 mile walk. A bunch of friends are going to join us and we are going to make Team Sophie t's with her picture. It should be a positive spin on a yucky day. I do know the night before will be hard, no matter how I try to prepare myself I know at 9:15 I will remember finding her with a fever, soaked in vomit, at 10:00, leaving for the hospital, at 5:30, finding her blue in her bed. And I have to, I have to relive those events from time to time, so my mind can process them and put them back where they go. And I suppose I will spend a good deal of that day crying.....I don't know, I guess a part of me wished I could take a super-Ambien and sleep all through the 26th and 27th, But the amazing people in our lives, they'll get us through, just like they have over and over these past few years.

Another scary thing about a year going by is that I haven't accomplished any of my asplenia awareness goals, need to spend some time thinking about that.......

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)

3 Seconds

I was combing through computer files on one of my always fruitless searches for pictures of Sophie I haven't seen before (or at least since she dies) and I came across this 3 second video of her climbing on Mike.... I know it is only 3 seconds, but it is 3 seconds of seeing her move, or hearing her....it totally made my day...I keep hoping family and friends who have pictures or videos of Sophie will send them, but I haven't asked anyone yet. I guess I should.

So much has happened since I last posted...Annie's blood work on the antibody titers came back and showed she had a very strong immune response to the vaccinations, especially the pneumococcus. Even though Dr. Evil insists that that doesn't tell us anything...it tells us that her immune system is stong...no, it doesn't guarantee us that she is never going to get hit by a bus (which is the crazy thing he kept trying to tell us, that this test wouldn't guarantee us that she would never die...what an imbicline.....) Anyway, that is really good news.

Mike and I have been doing really well since we got back from Mexico, busy, but good. We are preparing for the upcoming "anniversary" if you will...(what is the proper term? death day? ...any thoughts?) We've decided to get a bunch of friends together and do the Cherry Creek Sneak, which is a fun race that happens to be held on April 27, So we'll get out of the house early in the morning and be surrounded all day by friends and family, outside in hopefully nice weather. I think we're going to do Team Sophie T-shirts..and if I can make the time to get the asplenia website up and running by then it might be a step in the awareness direction.

Speaking of which, boy have I dropped the ball there. I feel guilty, like I am not living up to my promise to Sophie, to raise awareness and to stop this happening again. I am having more energy now, so I am planning to take some baby steps forward. I just got tired of the fight for a while, all the research, lettersl stress....I need to find out more about the fliter paper test, to see if there is anyway a filter paper blood sample can be used to screen for aspleina (congenital or functional). If it can, then we have a pretty good chance of adding the condition to the newborn screening program...it will be a haul, but aspleina meets all of the criteria--except that it is so rare, but it is less rare than some of the other diseases they screen for...so maybe.

Last, who woulda thunk Valentine's Day would be so hard, but Mike, Annie and I were sad last night and again today....I guess maybe we could have guessed, because, well Halloween...I did to hold a 15 month old little girl at Annie's preschool yesterday, and let me tell you, it felt amazing...she was just the size my arms remembered Sophie being....which is another weird thing, that's how I will always remember Sophie...15 months...but she would be so much bigger now. Well, the tears are flowing, so it's time to go....

I'm Alright...Nobody Worry About Me

(perhaps a little Kenny Loggins running through your brain). For all my lovely friends who take the time to read my blog, thank you, thank you, thank you...I really do it to get the feelings out, but it does help so much to know that you care.

In particular Roseanne and Cathi always follow up to make sure I am doing o.k., so I just wanted to take a second and let you know that most of the time I really am doing o.k., once in a while even good, and on the odd occasion fantastic. I tend to be motivated to post here when I am having a particularly bad moment (which still does happen, and will probably be accelerating over the holidays). But we are enjoying Annie so much (and Rachel too now that the pain and suffering of finals is over) and I am actually kind of sort of looking forward to Christmas (Happiness with a small side order of dread). Heck, I might even start shopping this week!!!!

There are still some really difficult times, and writing them here allows me a chance to "talk about it" because it has been almost 8 months, so there is some expectation that we be better and people who love us don't want us to be sad, so they can get really uncomfortable if we are...in a way this happened to all of us--that was really the message we got when Sophie died, our friends, our sisters and brothers, our kids, our nieces and nephews, coworkers, etc...this is the unthinkable, unspeakable thing and it sent shockwaves through all our lives. But everyone else didn't have Sophie in their daily lives, and so have been able to move on ---which is good---no it is great, and it is the way it should be. Mike and I, Annie and Rachel, we will change, and things will get different, but we will never "move on" We will live full lives and seek to honor Sophie's memory by remembering that life is too short for "someday" But for as long as I need to or want to, I'll be writing here when things are tough.

I thought it was worth saying that I am doing pretty good and that I value and appreciate every friend, family member, and even stranger who has supported us.

Happy Holidays!

Ba-Humbug

Well, sort of. I am not anti-Christmas, but just not motivated to get into it this year. Mike and the girls got a tree today so that is a step in the right direction...I think the holidays will be a bit of mixed emotions this year. I have always loved Christmas...giving presents, being with family, peace on earth and all that crap. This year it may just be a reminder of all we lost in 2007 and Sophia's absence will be glaring....I miss her.

We had our last night of grief group last night. I was amazing to see everyone laughing at the end....a wonderful sight and a far cry from the first night when we were all crying before we could even get started. Anyway, I hope we all do stay in touch--we are different people for sure, but we have had the worst thing that could happen happen to us and we are all members of the same crappy club.

Annie really lost it last week....she was yelling and screaming for an hour or more just saying over and over again how hard it is, how her head is filled with bad thoughts, how she wants to play with Sophie but she can't---it isn't fair. Up until recently we have been trying to make her happy whenever she gets sad and missing Soph, the past few weeks we have been trying to let her know that it is fine to be angry, upset, sad sometimes...well she really took that to heart. It was heartbreaking to watch, but I think good for her. She has a fever tonight---I wonder if we will ever get over being terrified everytime she is sick...I'm sure neither of us will get much sleep tonight. She really needs a little sibling to play with...not sure what to do about that, although I know we won't have another one...anyone out there have a baby or two-year old they don't want, drop me a line....seriously, if you are thinking about starving, beating, or doing any other horrible things to your children (Baby Grace...) think again...think there are parents out there who would give anything to have what you are so carelessly throwing away (Whoa..where did that come from)

Ok-that's all for this post....thanks to all the amazing people in our lives (you know who you are)

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......