And the Merry Bells Keep Ringing (Mostly)

We are still doing really well...I was remembering last year forcing ourselves to put up a tree and do the shopping, this year we have a beautiful tree, put up several weeks ago, the whole house is decorated and we are really happy...mostly--there are still moments--like hanging Sophie's baby's 1st Christmas 2005 ornament on the tree...of course she wasn't born until January 2006, but my plan was to have her here by Christmas!!! It is so much better though and despite little moments of pain I am really enjoying this holiday season (as my credit card bills will surely show in January!)
If there is one gift I could give this year it would be to let other parents out there who are suffering through their first holiday without their precious children know that it does get better. It takes work, it is still painful, but you will enjoy your life again. The biggest challegne to getting there for me has been accepting that I don't have to feel guilty about feeling happy. Moving on does not mean forgetting, Sophie will always be a part of our life, not just for Mike, me and the girls, but for everyone who knew her, or supported us. You never know when you might just be having the best day cruising on the highway singing Feliz Navidad at the top of your lungs and the next thing you know you think of your child and you burst into tears...but these moments occur less often now and we take time every single day to realize the amazing life we have. People wonder if I have a hard time around babies, I don't--I love them. I held my friend Mary's baby for a long time Saturday night (5 weeks) and she was so warm and soft and sweet, but it didn't make me pine for Sophie, it made me so happy for Mary and Mike that they have his amazing little being to hold, to watch grow, to keep them up all night!!!! No, my pining for Sophie is truly centered around me, our house, our memories......
Thanks again for loving us......

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.

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!!!

Happy Halloween

Another Halloween gone by---much, much better this year. I didn't get sad at the daycare party or trick or treat street. Tonight when I was taking Annie around begging for candy I even dressed up (vampire)...it was fun. I did feel a little nostalgic when I saw families going around---you know all the sibling groups--Annie was great though (Evil Princess). I think next year I'll make sure we group up with friends to go......I was thinking it is probably a good thing we decided on cremation--I'm not sure I could stand all the skeleton and rotting corpse decorations otherwise.

I hope to get to the cemetary tomorrow--I like the idea of Dia de los Muertos the Mexican holiday where they celebrate the life of loved ones who have died. I am going to see if I can find a sugar skull at a mexican grocery...you are also supposed to bring the foods the person loved as a gift. I'm not sure it is allowed--leaving food at the cemetary...but really, what are they going to do--kick us out?

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 sad, sad day....

Yesterday was the 16 month since Sophie died date--it also marked the day that she has been gone longer than she was with us...I hadn't been thinking about it, but it hit me like a ton of bricks right during a meeting with the executive staff.....It is almost like time passing is worse...because I get farther and farther away from my memories of Sophie. I'm going to leave early, not just to avoid the Barakorama going on here, but I need to go spend some time at the cemetary.

I haven't blogged in a long time--I haven't done anything. I don't talk to or see my friends very much anymore, I feel like nothing matters except my family, I am in such a rut--not extremely sad all the time, but just not happy and also incredibly anxious. I've tried meditation and medication, I just don't think there is any cure for the black cloud...there is nothing that can make me feel better...

We started talking about adoption, but it got too painful so we took a break....just want Sophie back...soooo bad...

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

Keep on the sunny side

Annie has strep, but the bright side of that (not that there is one really) is that I am not completely freaked out by it. Of course it just so happens that today I read an article in a magazine about a little girl who died of a virulent form of strep. But, I'll keep my cool and if I have any doubts at all about how Annie is doing, off to the ER we'll go.

This has been a bit of a tough week--there is a family here in Arvada that lost their 3 year old suddenly (he choked on a hot dog). For some reason it has really affected me, even though it is completely different than Sophie's death. I wanted to go to the funeral but didn't for two reasons--First, I am not sure how psycho it is to go to the funeral of people you don't know--although it would have been ok with us (as a matter of fact, the cleaning people who came and cleaned our house the day before the funeral came to Sophie's funeral because they had also lost a daughter) but you never know. Also, I just don't know if I could have sat there and watched a family go through the pain we went through. So in the end I was only stalker enough to find their address and send them a card....

It stired up some things in me and I did a lot of reliving this week. I finally wrote little notes to the cops who showed up on the scene. That also may sounds crazy, especially since it has been over a year. But for someone like me who is very social and outgoing, I find it strange that the two people who shared the most horrific moment of your life, and in a lot of ways the most intimate, you never see again. I also wanted to thank them for going full out with CPR and such to try to get Sophie breathing again even though likely they knew she was already dead--they didn't leave anything to chance......

Know we are doing well, things have gotten markedly better in the last month, although there are still moments...thanks to those of you who still read this....even if no one did I would still write.....

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....

Back to Reality

So we're back home, have been for a week. Things are actually pretty good, as far as the peace sticking with us....I go back and read some of my old posts, and the letters I am writing to Sophia, and I am so glad I am recording this, because some of it I actually don't remember. Numbness. In my letters to Sophia book I wrote a letter to her about Mike and I discussing having another baby (and deciding that we both longed for one, know she wouldn't replace Sophia, don't want to mess with a vasetomy reversal, and would be so incredibly paranoid)...anyway, I went back and read all my letters and realized that I had written almost the same letter to her back in October, scary that I didn't remember.

Anyway, life feels more "normal" now, except that Anne Marie is really lonely. At least on long weekends, Mom and Dad just can't compete with the constant stimulation of preschool, and she really feels it when we are busy. Rachel is at her Mom's on the weekend, so that doesn't help. I wish we could give her a sibling, but really even if we got started now, she would be 7 or so by the time a baby was ready to play with her, and then they would be so far apart. We've thought about adopting, maybe a child Sophia's age, but I don't really think our heart is in it. It might somehow seem like trying to replace her, and well....anyway, I think the end result of going through all of this is that Annie, Mike and I will be an exceptionally close family as Annie grows older, and Rachel goes off on her own......

I think about Sophie so much, what it felt like to hold her, how much she would be talking now, how independent she would be, how much crazier our mornings and evenings would be with her in the terrible twos.....I know I would never appreciate that craziness if she were still here, I wouldn't know I should, but I would trade the slower pace of life in an instant to be the harried, overburdened parent of two young children....so if any of you are feeling that overwhelming, work, kids, house, money, spouse--oh it is too much and I don't know if I can handle it....go ahead and feel that way, it's normal, but do this too...after the kids are in bed, sneak in to their room and watch them sleep, and remember that you wouldn't trade one single thing about your life if it meant not being able to watch them, hold them, rock them......That is something I am so happy I did....I always went into the girls rooms before I went to sleep at night, to look at them, to cover them up, to kiss them (to poke them Mike would say!!!) It was harder with Soph because she would always open her eyes and look at me, but I just needed to see them before I went to bed....

A woman joined the Yahoo group who has just now, as an adult, been told she has congenital asplenia....wow....what a lucky lady, although for all we know many of us could be walking around without spleens (I still want to get this checked out for Mike and I). I think if I had heard of her earlier I would have wondered, why Sophia, would it have made a difference if my house was cleaner, I had kept her at Jean's rather than moved her to wooden shoe, etc...but really that ship has sailed, I don't think I could have saved her, for whatever reason she had to go.....I am glad that there are babies who make it safely through childhood....

OK, today's post is kind of random....thoughts all over the place, but mostly good.......

Sunrise, Sunrise.....

Can't believe we made it through the holidays....and Sophie's birthday...but we did, and it was hard, but we did manage to have some good times, especially on Sophie's birthday...we were here in Cozumel at a gorgeous house on the beach....we thought about a balloon release but couldn't find any, so we settled for watching the sunset and just thinking happy thoughts about little boo....everyone nixed my idea of building a little raft and setting a can of sterno afloat, but hey I tried.

For the first time since last April I feel completely relaxed (even when I haven't had a Margarita) I was worried that I would be totally paranoid about Anne Marie, near the water etc...but I haven't been at all...she's been a champ, swimming in the pool and ocean, snorkeling, even...and I have gotten my fear in check..she's even been beach combing by herself (although I must say I nearly lost it when she started climbing out the window halfway up the lighthouse...but I think any parent would have!)

We saw a sea turtle yesterday when snorkeling...it was so cool.....we've also seen crocodiles, huge iguanas, geko's, baracuda and a ton of other fish....it is so laid back and peaceful....

We're taking the kids to swim with the dolphin's now..the picture is sunset on Sophia's birthday...and sunrise on the next day!