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!