Monday, April 20, 2009

My Story (part seven)

Okay, so I re-read some of the other segments of my story just before writing the next one... I try to make sure that I am all-inclusive of the events, conversations and feelings. I am honestly writing this, because I want other expectant moms (that have found themselves in the same or a similar situation) to know that what they are feeling or experiencing is normal (for a not-so-normal circumstance). I know it doesn't make the early grieving or anxieties go away, but isn't it nice to know that someone else survived this ordeal? Reading other's stories helped me feel hope. Hope that we would make it to term. Hope that I would get to see his eyes open and staring at mommy, daddy or big brother. Hope that I would get to hear his weak cry. Hope that I would get to bathe him or change diapers without getting peed on. Hope that we would get to take him home (even if only for a short while). I could go on about my hopes, but honestly this list includes so many things that I didn't get to experience, it makes me too sad.

New to My Story? You might want to start here.

Getting back to Dr. Winkler... Because Ward referred me to him and Ward knows him, I know some things about him that I, otherwise wouldn't. (If Dr. Winkler ever reads this - Ward never uttered a word - professionalism and all. It was Sharon, his wife, that told me.) For privacy reasons, I won't get too specific, but I do know that one of his children died after battling cancer. Dr. Winkler, too, knew what it was like to grieve the loss of hopes and dreams. So, I understood all along, that as much as he tried to be cold and calculating (I imagine him going into work saying over and over to himself, "It's just a job. It's just a job. It's just a job."), it was to hide his own pain. Undoubtedly, seeing my husband and I go through the heart-breaking decisions and early grief brought out his own grief (even though he was trying to shield himself from it). That's why after all of our disagreements, I don't hold it against him. Doctors are not God. They are human too. He falls short, just like I do. I feel that Dr. Winkler turned his back on the lessons that he could have learned from Owen, BigBro, Hubby and I. But, there will most likely be other patients. Maybe one of them will break through his crispy shell. We failed. And, I will say this about him - he has a great sense of humor and a heart of gold. He probably doesn't realize that I could see through the pretense.

Then, there's Dr. Winkler's nurse Trish (Patricia Shaw)... Every appointment, she treated us like we were normal - not a 'sad cause' or freak show. And my favorite part was that she always said Owen's name over and over. She would talk about how his heart was beating well, or how he was kicking up a storm. Dr. Winkler would always just call Owen 'the baby'. The doctor is lucky to have had Trish follow him for (in my estimation) over ten years from hospital to hospital. I remember her saying that she did also moonlight in Labor & Delivery (on weekends and holidays) over at St. Vincent's.

So, while all of the last six chapters of my story were unfolding. We also had some other things running in the background. 1) I redesigned and reorganized my husband's website. No, I didn't do the techie stuff - we hired someone for that. I just took what was existing and completely overhauled it. For privacy reasons, I won't link to it here. This particular project stole countless hours from my days with BigBro in the month leading up to Owen's birth. 2) We had been looking for a new home for our business for a very long time (years, really). And the right place landed right in our lap. We were due to sign some paperwork exactly when we found out about Owen's possible condition (June 18, 2008). We delayed the big decision a bit, but ended up signing the final paperwork just two weeks after Owen was born, then passed. Oh, wait, I'm getting ahead of myself! 3) I was tired of being apathetic to our country's take-over (of the unconstitutional sorts). I had also just become more involved with politics and - was elected as a Precinct Committee Person (PCP), was a delegate to the Oregon Republican Party's State Convention (platform caucus) and attended the Congressional District Convention (where we chose Oregon's delegates to go the the Republican National Convention - which, by the way, was a complete farce / staged dog-n-pony show. And, yes, I refused to put John McCain signs in my yard.). 4) We were doing a small (which really turned out to be huge!) remodel. So, we had dirt, dust and work people everywhere. Think: paint, carpet, lighting (that's permits, electrical and drywall) and a splash of wallpaper. I don't want to get too into it, but the mini-disaster, did end up looking really beautiful. Hmmm... Mini-disaster, isn't that what all home remodels turn out to be?

There are two other short stories here:

1) (Okay, it's a little longer than I thought it would be) Now I Lay Me Down To Sleep (NILMDTS) was suggested to me (by Katie). Which, at first, YES, seemed a morbid thing to do. Take pictures of a baby after s/he might have already died. Plus, there was that whole 'stranger' thing. How could we let a perfect stranger into such a private moment in our lives? (we really are very private people - this blog is so not what I ever would have done pre-Owen). I read the stories here, here and here. After crying over these sad stories and beautiful pictures, I was convinced that, "Yes, I do want a photographer to capture our brief time with Owen". But, still, the stranger thing. Before we moved into our current house, this was our next door neighbor for many years. I'd had Joni take pictures of BigBro before, so I knew she was a really gifted photographer. I hadn't talked to Joni for a few months and couldn't tell her our situation over email, or over the phone. When we had talked over the phone, I learned that she, too, was being molded and shaped during her own trying time. Her father was very very sick and she needed to go, see him and support her family. (He ended up passing away about a month before Owen was born) After hearing that she was traveling a tough road too, I just couldn't dump mine on top of it. I thought, "Well, hey - why not contact the NILMDTS area coordinator & connect with a photographer. I can always purchase a maternity session from them and see how I feel about later inviting this person to the hospital." This is whom we ended up meeting. Denyce was wonderful. She was so caring, and sensitive to our situation. After meeting her and seeing the proofs from our maternity session, I felt good about inviting her to the hospital. Turns out, Denyce and Joni know each other. Joni had signed up to volunteer for NILMDTS and had yet to be called to her first session. Joni ended up joining Denyce and assisting her with lighting and positioning for Owen. What a small world! If, you too, are uncertain about using a NILMDTS photographer - I just can't encourage you enough. Photos are such a tangible memory to have! If you haven't already found it, here's the link to the photo slideshow that was shown at Owen's service.

2) We did scout out a couple different cemeteries in the two months before Owen was born. I was actually leaning towards cremation, but Hubby really wanted to have a place to visit (burial). If we were to have a burial, I really wanted us to all be together (purchase adjoining spots). This is where we ended up. It's the oldest public (non-profit) cemetery in the Portland, Oregon metro area. It also greatly discounts it's fees for the burial (or cremation) of any child under the age of two. We answered many of their questions about our wishes (for them to keep on file) and picked out folders (that's what they hand out at the service). I just couldn't bring myself to pick out a casket. I was tortured with thoughts and guilt over whether I was really holding out hope if I chose a casket before my son was even born. After a week in the hospital, I chose this one. It's the style on the right - only without the Noah's Ark embroidery. I also preliminarily designed (and had gotten a quote from) someone to send out special birth announcements. Since Owen didn't come home from the hospital, a few changes needed to be made - and this is the lady that did them and this is what they ended up looking like. Still, we have yet, to pick out the headstone. I've got a little time. We were planning on having the stone laid at his one-year birthday.

To be continued... (I promise, the next segment will be longer)

1 comment:

Monica said...

Hi, I'm 21 weeks pregnant and my baby was just diagnosed with trisomy 18 at NW Perinatology. I had a suspicion that some of the doctors that work there were pretty liberal. They were pretty open with my decision to not terminate but I ran into one of their geneticist who gave me a phone call with the FISH test confirmation and told me the next step was to go back to my regular baby doctor and that she would probably do some extra ultrasounds and follow me from now on. Luckily we got a call from a different geneticist who works there and she said that since we were high risk that we would need a perinatologist. Anyway, since we live in Longview, WA, and I would rather go to Salmon Creek, I was wondering if the Dr. Winkler who you ended up with was Dr. Carey Winkler? Please e-mail me: Oh, and I can't wait to hear the rest of your story:) Monica Miller