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!

Dr Evil (Note the Capital E)

Oh--I almost forgot to post about our horrible doctor appointment at the National Jewish Immunology Department on Wednesday. All we wanted was a simple blood test of the antibody levels in Annie's blood to see if her body had an immune response to her vaccinations. This is sort of the last check off on the list--and was recommended to us by 3 doctors...well the fellow takes our background information, consults with the doctor, who then proceeds to come in and tell us that we are hysterical and chasing shadows and we need to stop. We explained what we were looking for and he said we already had all the information we needed because we know Annie has a spleen and we know it is functioning (no howell-jollies). We explained about the pit count being elevated and he said that wasn't relevant. He berated me for EVER looking at the Internet...I explained to him that I was able to find quite a bit of relevant information on the internet, and that since he and his colleuges in different areas have such differing opinions, I, as my child's advocate have every right to seek out information. He said the other doctors were making us chase shadows...Mike was so good--asking why we should trust him over all others--he basically (and I am not kidding here) said that he is the most knowledgeable....I find it interesting that the NIH itself (see link above) thinks that the antibody titer test is useful but he doesn't. In the end we determined that the test would not harm Annie and had him do it.

The other recommendation we had was to get Annie a stronger vaccination against Pneumococcus..this came from Dr. Cordero and our pediatrician. Dr. Evil said that that vaccine does nothing for children. The APA and CDC both recommend that vaccine for kids 2-5 who could be high risk.....we were fuming...I have never felt so attached by a doctor...he chalked everything up to us being irrational grieving parents....we kept asking him why we should trust him over the other doctors....and that we didn't follow our gut when it came to Sophie (at least Mike's gut that the hemivertabra was somehow more serious) We have to now, we aren't turning Annie into our science experient by any means...she has had an echo and a spinal e-ray and a few blood tests, but all at the recommendation of doctors....I was happy to point out to Dr, Smarter than Everyone Else, that a simple Google search would have clued in the osteopath that hemivertabrae can be linked to asplenia......And I also got pleasure from telling him that I happen to know of a few parents whose kids have heterotaxy who diagnosed their own children with information they found on the Internet, because their damned doctors wouldn't believe them that something was wrong....look at a woman I know at work whose daugther was born with Congentital Heart Defect....often linked with other abonormalities of the intestines, spleen, liver, etc.....she was over 6 months old before her Mom had to REQUEST an ultrasound of her organs, and they found a kidney problem. So yes, I know doctors aren't perfect and that medicine is an art as well as a science---but I sure as hell wish that some of these doctors would stop pretending they know everything....there is a TON of evidence that they don't.......

We are still waiting on the results of the echo and the x-ray...been over a month now, I assume no news is good news but have put in a call just in case.....In the end we did get the test and the vaccine for Annie

Anger Management

If you are someone who really wants me to be o.k. and thinks I should be better by now....I'm great...so read no further and have a Jolly Holiday!

I have been managing to be very angry lately....It is tough, because I am trying hard not to, but I can't seem to contain it. I am snappish at work and at home and easily frustrated, irritated and pissed off. Thankfully my family is very forgiving.....and what is at the root of this anger? I can't say exactly, I know it is related to Sophie's death, but it I can't quite pinpoint the source. Am I mad that she died, hell yes I am...but that doesn't do any good....Maybe I'm mad because the whole world keeps right on moving along and I want it to stop. I want everyone and everything to come to a screeching halt and think about Sophie and what happened to her and how awful it is...of course I know that is unreasonable, life goes on and I must also, but boy how petty and out of proportion so much of life seems.....If only people could know how little I want to care about egotistical tug-o-war pissing matches at work, about who said what to who about whom, about whether we ever get a renter in our condo.....I hate that I have deal with these things. I just want to wrap myself and my family in a giant down comforter and hide away from everything. Especially Christmas.....I'm like the grinch I wan't to stop Christmas from coming...but rather than take every body else's Christmas and dump it, I would just climb to the top of Mt. Crumpet and stay there.....

At the very least it would be so nice not to have any other stress in our lives right now...If the real estate market would turn and we could dump both our rental properties....neither of us has the energy to be landlords right now and we are going to pay the price for that later....if we didn't have worries other than ourselves and the kids, what a relief that would be. Laundry and a teenager who won't do her homework...that I think I could handle--I'd even give up my cleaning lady! A mountain of real estate rapidly losing value, not so much....hard to deal right now.....

OK...time to put on the happy face and make gingerbread people (how PC)....

Paranoia May Destroy You

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

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

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

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

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

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)