Saturday, January 3, 2009

My Story (part four)

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

In case a genetic counselor or perinatologist (of the same mindset as those at Northwest Perinatal) ever reads this: First, let me say how wonderful it is that you are intelligent and highly skilled at an emotionally challenging profession. Honestly, you are not paid enough for what you do! If I could go back and have a cup of coffee with you (you're invited! call me 503-335-3453 and I'll totally buy you a cup of coffee), here are the broad strokes of some things I would like to tell you: Number one - never lie or exaggerate to get a patient to do what you want them to do. It's really your job to educate the patient as much as possible (offering support for either decision / outcome) and allow them to make the decision that is best for them. Number two - life philosophy. If you found out today that your three year old had a devastating illness, with only three months to live - would you push him/her in front of a bus tomorrow? If you could go back in time, would you have advocated for aborting that child, because they were going to live a short life? To both of these, I sincerely hope you would say "Of course not! I would cherish every second with him/her!" You really need to rethink your approach with patients facing a diagnosis that is difficult. Difficult diagnosis or not - I want to cherish every moment that I'm given to parent my child - please provide support, encouragement or, minimally, resources to help me along the way. Perhaps you are 'pro-choice' because you feel that not everyone would be willing to care for a disabled child; or maybe you think that people facing a difficult diagnosis would find it easier to 'say goodbye early'; or maybe you philosophically believe that anyone 'not perfectly normal' (however rigid your definition) is a drain on society; or maybe one of you would be willing to leave an anonymous comment (I do allow those) explaining your exact reasons - I would love to have the philosophical debate! Did you know that there are huge waiting lists of folks that want to adopt handicapped children? I am pro-life because I believe that every life is wanted and very loved by someone. Have you ever done a study of your patients that decided to terminate - a year later or five years later? They did experience a loss, but because most of our society is pretty judgmental - I'd be willing to bet that they are not 'allowed' to openly talk about their loss, or they have to lie about the circumstances of their loss. To me, it seemed like the folks at NW Perinatal were pro-termination, not pro-choice. They offered absolutely no support for carrying-to-term, only spoke about the negative aspects of my child's diagnosis and, in fact, expected (or it was a given) that we would terminate. Granted, the negative things did need to be spoken of (so we would be prepared for our child's possible needs) - BUT you mentioned nothing about the positive things and nothing about the 'choice' of carrying to term, or support for carrying-to-term. Plus, I find it unfathomable that you would present the only option of termination, without explaining exactly what termination entails. If, truly, you respected your patient's right to choose, then you would present it as a choice... That means the good with the bad!

The last thing I want to talk about is, whatever your religious beliefs - You are in a wonderful
position to grow spiritually. I believe your job is very tough (life and death involve highly charged emotions). This is not just a job, stop treating it like it's just a job. If you would allow yourself a heart connection, love and compassion for any of the patients that walk through your door - you will learn so much about love and life. That's the good stuff in life! I mean, really - why are you here? It's like most of the rest of us are in regular classes and with your job, you're taking the advanced placement classes. Unless, of course you don't allow yourself that heart connection with your patients. Then, you won't skip ahead - you'll be held back to the regular classes or worse, have to repeat them!

When we first found out about Owen's condition - my immediate reaction was 'let's not tell anyone'. I didn't want pity or that look from anyone. Not too long after that initial reaction, I felt like: How do I pretend to be a normal pregnant woman? How can anyone treat me like I'm a normal pregnant woman? I'm NOT normal. It wouldn't be fair to my close friends to not tell them. If one of my friends were in this situation, what would I say to them? This, I thought, was going to take some leniency on my part. Lenient on friends and family towards what they might or might not say. If the situation were reversed, I really had no idea what I would say to someone else.

The first weeks were really hard! I was showing and all the normal things that strangers say really bothered me. Are you having a boy or a girl? When are you due? I bet BigBro's excited to have a little brother... All innocent enough - and, really well intentioned. Sometimes I couldn't answer and just burst into tears right away. Other times, I answered with the shortest answers possible. And, some times I was angry. Angry that something wasn't quite right with my unborn child. Angry that we might not make it to term. Angry that I didn't know what would happen. Angry that I had to just keep waiting (in late June, the end of October seemed like an eternity). Angry that I might not be able to nurse my child. Angry that I might have to get familiar with all the medical apparatus (feeding tube, oxygen, monitors, etc). Angry that my son might die soon after birth. Angry that I might have to plan for death (I held a great deal of guilt in - how could I plan a death and still truly be holding out hope?). Angry at the way the doctor seemed to not value a short life or a life of disability. Angry that we had to face friends and family with this horrible truth. When I was feeling angry, I answered those innocent questions from strangers with the angry (and honest) truth. "Well, I'm having a boy, but we don't know if he's going to live very long after he's born." Or, "I'm due at the end of October, but he might die - so I could have him any day now." Many of those strangers got super quiet after one of those responses! I realize now, that it wasn't right for me to snap, in anger, at anyone. This wasn't any one's fault. And, they really meant to share in our joy of having a baby. I fluctuated between being joyful that Owen was still with us and angry that I even had to face his possible death. I also tried really (really!) hard to give it all to God. I am a weak, naive, ignorant sinner. God could carry this, but not me.

Reactions of friends and family varied, but most showed us pity. Only a couple treated us like I
wasn't even pregnant, or worse. We had one family member ask, "You don't have to carry it, do
you?" For me, only my two closest friends were really supportive. A couple others were helpful,
but to make it through everyday, my husband, Cindy and Monika were my 'rocks'. Several friends and family members really disappointed me. I couldn't understand how they could not say anything and treat me like I wasn't going through anything difficult. These are the kind of people that you can share your life with at a superficial level, but when the going gets tough they are nowhere to be found. Through this, I learned whom really loved and cared about me.

The most surprising reactions were from acquaintances or strangers. People we didn't know well, or didn't know at all shed tears, told us they would pray for us or even randomly gave hugs. Through the ugly parts, I had lost sight of this world's kindness and compassion.

A couple of days after I had told Cindy she called to tell me that while she couldn't initially 'put her finger on it', so she hadn't said anything - she had finally figured it out. She had heard of Trisomy 18 before. Cindy's friend Jessie has a daughter (Katie) that had a little girl (Abigail) with Trisomy 18. You can read Katie's story here. Out of their grief, Larry & Katie decided to give a gift to others (as a beautiful, loving remembrance of Abigail) and started their non-profit - A Butterfly's Touch. After hearing of Katie's journey and amazing strength, I really wanted to meet her.

I ended up meeting Larry, Katie, their darling children and Jessie just a couple of weeks later (right before my first appointment with Dr. Winkler). Jessie is a Labor & Delivery nurse and I was able to get her suggestions on my initial scratchings of a birth plan. While I have had relatives pass away, I had never planned a funeral... Katie didn't mind sharing details about their arrangements for Abigail. Katie was also kind enough to give me one of the boxes that A Butterfly's Touch donates to area hospitals. Honestly, this was very kind and my heart hoped that I wouldn't need what lay inside the box for a very long time. Call it denial, but my greatest hope was that the doctors were wrong and God would perform a miracle so that Owen could live a very long time. All I wanted was to give him love, joy, care, patience, understanding and life. Even if it was a life of disability. The last thing I want to mention is that while Katie did have a different doctor than I did at Northwest Perinatal. They, too, encountered exactly the same attitude we did. And, just like us, they were also encouraged (and expected) to terminate.

Up next - I'm going to introduce you to Trish and Dr. Winkler.


1 comment:

laus said...

Hi Shannon,
Your children are beautiful! Thank you so much for sharing Owen's story ... my daughter has been diagnosed with T18 as well (we're due May 18) and I'm feeling all the emotions you talked about in this post ... it saddens me that so many of my friends ignore my pregnancy and it makes me angry that I don't know how much time I'll get with my daughter. My emotions have been all over the map, but termination was never an option for us (despite the strong recommendations to do so). We did the amnio early on, because we just had to know ... perhaps it was selfish on our part, but I didn't think I could make it through the next 5 months without knowing. And knowing has taught me to cherish this baby (our first) more than I ever would have if I didn't know. Thanks for sharing your story, it is so helpful to know that other people have felt the same way. Your courage is an inspiration and I'm looking forward to reading the rest of your blog!!