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....