Thursday, June 9, 2011

Be Particular

Several years ago I was walking around in a book store and spotted a book with what looked like several drag queens on the cover. Upon closer inspection I realized that they were simply fantastically dressed women wearing towering red wigs, sequinned dressed and majorette boots. The book was called "The Sweet Potato Queen's Book of Love" by Jill Connor Brown and it's a hoot. She gives several rules to live by in order to make your own life fabulous to the point where it feels totally ok to dress up as previously described. I'm still working on that one.
One of the rules came to me today and made me think of that long ago discarded book. Be Particular. This rule applies to nearly everything in life and I'm incredibly glad I followed it in my choice of midwives for this last pregnancy.
Before we were pregnant with Joel, I checked out a few other options for our birth because we weren't sure we could afford to pay for another homebirth. I went to look at some midwives that practice in a hospital and you can read about my reaction to them here. For those too lazy to follow the link, I didn't like them. They didn't feel personal to me, they didn't greet me with a hug and a cup of tea. But I'm so glad that they didn't because it meant that when everything went south with that pregnancy, I was surrounded by midwives who did greet me with a hug and who knew me and loved me and came with me on the hardest day of my life not as a paid midwife, but just as a friend. She was right there making sure that I had the best care possible and avoided the pain and trauma that was always chasing me. She sat with me while we made our decisions with no judgement, only sympathy. She was the one steadying my hand so I could hold my baby for the first and only time.
I am so grateful I didn't do the financially responsible thing in this case and go with the midwives that our insurance would pay for but who would have dropped me like a hot potato at the first sign of trouble. They would have said "I'm so sorry" just like everyone else does and that would have been nice but then Dilbert and I would have been left alone to transverse the world of high risk obstetrics without an educated guide and friend. I'm so glad that I refused to settle for care that would be good enough and insisted on seeing someone better.
It's important to be particular.

Tuesday, June 7, 2011

I'm a little more fine

Today is not a good day but it's not bad either. The kids have fought and squealed at each other most of the morning but one of them is napping now and the other is coloring robins upstairs. I'm not the basket case I've been for most of the last few months. I'm not saying I'm better yet but I feel like I've at least achieved some equilibrium again.
Part of the reason for this has been my counselor. She's pretty great. I've only seen her twice so far but just talking about all the stuff that's swirling around in my head seems to help. I've talked to my husband about all this stuff before but somehow it's different with an objective party. She hasn't heard it all before. She didn't live through it. Anyway, it helps. I'm sortof wishing I'd done it sooner.
Another reason I think I'm doing better is that Dilbert and I got away last weekend. We left the kids with my aunt and uncle and stayed at a hotel. You all don't need to know about most of that weekend but we did have the time to really open the flood gates. All the feelings and sadness that we'd been holding back because we're busy or the kids need us or we have to work in the morning was able to be put out there on the table and dealt with. I realized that I'd been assuming the worst of him and he'd been frustrated with me for not being better. Before you all jump all over him for that one you should know that he didn't want to feel this way, but feelings happen weather we want them too or not and this was one that was hard to hear but I'm glad he shared it.
When we left, I promised to give him the benefit of the doubt and he promised to be more patient with me. So far so good. We feel like we're back on the same team again.

Tuesday, May 10, 2011

I'm fine

"I'm fine." That's what I tell everyone. I almost am sometimes. I can get up in the morning (as well as I ever did) and feed my children and get them to soccer and ballet and sing in the band at Church and do all the things that need doing. I can function.
But not terribly well. My temper is shorter than usual and it was never all that long. I don't play with my kids like I used to and I don't go outside if I can help it. I have rare moments of higher function but I'm not what I used to be. My moods swing like a 13 year olds and I'm just as irrational sometimes.
But worst of all, I don't sleep. I'm writing this at 2:30 this morning because I hate going to bed. I feel like slowing down and stopping for the day is a scary prospect. It takes me forever to fall asleep and for that whole time I have nothing to do but let my mind wander where it will and it always goes to the same place. Joel.
Mother's Day was particularly difficult. I had yet more opportunities to cry in public. I kept thinking "there should be three, I'm supposed to have three." All the songs about faith and drawing strength from the Lord just seemed false to me that day because I didn't feel faithful and I didn't feel strength coming from anywhere.
Mother's day was also confirmation Sunday in our church. All these kids were there making the decision to join the church, follow Jesus and give their lives to Him. The Pastors said prayers over each of them while they were surrounded by their family and mentors. It was beautiful and I cried my eyes out through the whole thing because one of my children will never be given the chance to choose that. His journey is already over and I know that he's with Jesus but he never had the chance to choose and I never had the chance to teach him the way he should go and I'm furious about that.
So I keep avoiding my husband because he needs me to be OK and I don't feel that way yet. I keep yelling at my kids because they are kids and act accordingly. I keep staying up too late because it's easier to distract myself with the lights on. I keep telling everyone I'm fine though I know its not true.

Monday, April 11, 2011

The bottom of the trench

Since this little exercise in navel gazing known as my blog is called in the trenches, I thought I'd use the metaphor a little more tonight.
I am currently residing at the bottom of the trench which, if any of the movies and books I've read about war are to be believed, is where most of the crap and vermin reside.
It's not even that today was all that bad, I just felt badly. I had no excuse for it, the sad just showed up and stayed with me all day. I cleaned my kitchen, fed my children, worked on some sewing, read a book, ate some chocolate, all in an attempt to rid myself of the sad but nothing worked.
By the time Dilbert called me from his car as it sped toward home I was a well concealed wreck. He asked me if I wanted to meet him with the kids at our local gun shop, otherwise known as his happy place. He's been wanting to get one for me for a while now and thanks to the joy of the tax refund and our two little deductions, we sortof have the money for it at the moment. I'm not terribly jazzed about it but I'm not against the idea either so I agreed to meet him and just keep the sad pushed down for the others present.
Then I tried to get the kids ready to leave the house.
They'd gone outside that day but they hadn't actually had any shoes on and Pudding was wearing a shirt that was way too small for her and had to be changed. And Pudding didn't want to change the shirt, then she didn't want to wear those socks, then she didn't want to wear any socks and why couldn't she just go barefoot and why did we have to go anyway and on and on and on. I called Dilbert and told him the outing was off.
Normally I have no issues with stuffing either of my children into the required clothing and frog marching them out the door but today was not a day that I wanted to yell at my children. I don't ever really want to yell at them but today was a day where I didn't have the energy and the will to do battle with them. All my mental energy was used up today in keeping the sad contained and I just didn't have any left over. I felt like I was looking up at the looming battle from the bottom of my little trench and what I needed to do right then was keep myself from drowning, not fight. Survive and live to fight another day.

Tuesday, April 5, 2011

The last time

I've become addicted to this fabulous show called "Two Fat Ladies." It was a cooking show in England in the late 90's and it features (as you could imagine) two rotund women of a certain age. The show ran from 96 to 99 and featured the voluptuous women cooking in various locals and using lots of local ingredients. Tonight I watched them make (I'm not kidding on any of this) Strawberry breasts, Beef in Pastry, Salmon Mousse, and Swiss Chard with garlic and anchovies. They chortle along together while they cook and quote odd bits of poetry or share funny bits of history about the food they are cooking. At the end of the show they show their guests sitting down to dinner, share a few tips about serving each dish and have a drink somewhere picturesque. Clarissa and Jennifer always seemed the best of friend except when they argue about whether or not someone sat on the raspberries needed for that nights dessert (Pudding, they call it).
I recently read up on them a bit and found out that it was the death of Jennifer that ended the show. As I watched it tonight, I saw them both sitting on an old stone terrace, Clarissa with a glass of something orange and Jennifer with her scotch and cigarette. The sun set behind them as they stretched their sturdy legs in front of them and fully enjoyed their repose after a day spent in the kitchen. The thought occurred to me that if Jennifer were a friend of mine, this is what I would always want to picture her doing before she passed. Drink in her hand, cigarette on her lip and the pride of having done something productive all day glowing about her, sashaying into the long goodnight. It got me thinking about why it is so important for us to think that our loved ones who have passed on had peaceful or beautiful last moments.
So much is made of the last of something before someone dies. A last holiday, a last conversation, a last hug. A dear friend of mine just lost her brother to a very early death and she's been distraught that the last time she talked to him, it was a less than stellar conversation. I want to tell her to not worry about it but we all do.
I religiously say "I Love You" to my husband every morning before he leaves for work simply because he has to drive 11 miles with idiot DC metro drivers and I'm always a bit terrified that he won't make it home. I say "I Love you" every morning so if for some reason he didn't make it home, he would die knowing that I loved him. This is really silly because a hurried statement on his way out the door won't counteract unloving behavior displayed the rest of the day. If I don't love him with my actions during the time he's here, a superstitions sweet nothing isn't going to cut it. As a basketball coach of mine once said, "It's not the shot you missed as the buzzer blew that lost us the game, it was all the missed shots during the rest of the game."
The last minutes do matter but they can't spoil a loving relationship if they are bad and they don't make up for a contentious relationship if they're good. It's the relationship that counts, not the last minute.
For my friend, I want to tell her that her brother knew he was loved but I don't know. I know she tried to love him as best she could. She's just that kind of person, spreading sunshine wherever she goes. I know that at times her brother was difficult and pushed love and help away with both hands but in the time of his death, I know that brings no comfort. All that can really be said now is that she tried, she always tried and at the end of the day, that's all we can do. We do our best to love those around us the best we can and hope that they see the love in our every action. Then it won't matter if a sharp word is exchanged from time to time because at the end, the love is the only thing that lasts.
I don't know if I believe all that stuff about people who have passed on looking down on us from heaven, looking out for us or being cared for by other loved ones who have also passed on. I think that if you're in the presence of an eternal and loving God that singing His praises is about the only thing you'd have time for and the troubles of this world will seem silly and petty. Despite my belief to the contrary, I could see Jennifer up in heaven, on a cloud this time sharing a scotch with the brother of my friend and having a rousing political discussion. I like to think of them watching the sunset and resting from the turmoil of this mortal coil. I like to think that all of his troubles have left him now and he is at peace and feeling loved.

Saturday, April 2, 2011

Semantics are everything

I'm going to take a small break from my rather heavy posts about the grief and loss of the past month to share a silly thing that happened yesterday.
The Tyke came into the kitchen sobbing as if his heart were breaking. His hands were behind him on his little bum and he kept saying that his back hurt. Dilbert asked him, "Does your butt hurt too?" The Tyke replied as though he'd been trying to convey something for a very long time and had grown so frustrated that he'd boiled over into anger. "THAT. IS. MY. TUSHIE!!!!!!"
Semantics are very important.

Thursday, March 31, 2011

The Gifts of Grief

I think that perhaps there are two kinds of people in the world. Those who have gone through grief and those who haven’t. I know, I know, everyone has tough stuff that they go through. Bad break-ups, parent issues, friend issues, work stuff, you name it. But grief is different from other hard stuff. It overshadows everything around it, puts everything in perspective as the small and conquerable thing it is and shows you who the people around you really are.
I feel like I’ve crossed to the other side of this line in the last few weeks. None of the things I worried so much about before seem to matter as much now and the things that do matter seem so much bigger and better than they did before. My children matter, my husband matters. Whatever childhood issues I had with my parents don’t matter now, friends who don’t know what to say don’t matter so much now, stage-fright doesn’t matter now, appearances don’t matter now.
In a way this is liberating. There is a joy in not caring about the trivial and having enough perspective to appreciate that which is real. The real things are more precious than I ever thought possible. My children, my husband, my true friends have become more real and more necessary to my life than they were before. It is liberating to know this because it frees me from the distractions of other things. I’m less distracted by my own selfishness and laziness that prevent me from keeping a nice home. I’m less worried about how others will view my life and my choices and simply parent my children in the way that my instincts dictate. I find myself being the mother I’ve wanted to be, more patient, less quick to anger, more reasonable in my disciplining. Grief has given me that and I am grateful.
I find I have a glorious filter in place now. The good can come in, the unintended bad stays at arms length where I know that it isn’t meant that way and can ignore or dismiss it as necessary. I don’t know if this is a side effect of grief or if it’s just my optimistic personality asserting itself after six weeks of being dormant. I rather think it’s the grief and I’m grateful for it.
I’m grateful for the perspective and the liberation and the reforms to myself, I’m grateful for the filter and the joy that is all the more sweet for having been absent.
“Whatever my lot, thou has’t taught me to say, it is well, it is well with my soul.”

Tuesday, March 15, 2011

Riding the wave

My mom says that grief comes in waves. You feel better for a few days, then worse for a few more, then back to better again. The idea is that eventually the better days are more frequent and the bad days less until you can think of the departed without being devastated.
Today is a better day. I looked through the box with Joel's things in it. I touched the box that holds his ashes, I looked at his little footprints, I saw the little blood smear on the ribbon of his impossibly tiny hat. I was sad but I didn't fall apart. I added the picture that the Pudding drew of Baby Joel up in Heaven and lingered for a moment, then put the lid down and went on about my day.
Sunday night was a bad night. I went to the grocery store after the kids were in bed and on my way home I just felt so alone and sad and generally depressed that I really wanted to hit that old Self-Destruct button. For those not familiar with this one allow me to explain.
For women from a certain background, usually children of divorced parents, often with some form of abuse during childhood, good things feel unfamiliar. When women from this certain background get sad or depressed about something, they seek the familiar and for them, it's usually more crap. This concept explains most of my relationships in my early 20's. I saw the pattern repeated in more of my friends than I know how to count. We'd get an urge to do just the worst thing for ourselves that we could. Sometimes that was to eat too much, have sex with inappropriate people, drink too much, max out a credit card, quit a good job, ditch a nice boyfriend.
That last one is one I actually did to poor Dilbert when we were dating. He'd just driven me to Wisconsin and back for my step-father's funeral and I was a wreck most of the way back. I'd been trying to do the strong, supporting daughter/sister thing for my mom/step-sister while we were there and about 5 minutes after we got on the road to come home, I snapped, hit a dear, broke Dilberts headlight and cried my head off to my incredibly sweet and supportive boyfriend. Needless to say, he drove the rest of the way home to DC.
A few days after we got back I told Dilbert that I didn't deserve him. He didn't deserve a mess like me. He was a nice guy who deserved a nice girl who would treat him accordingly, not someone who freaked the fuck out every couple of months. I told him I had so many issues to work out right then that he couldn't help me with and he didn't need the hassle. He cried, I cried, we cried some more and then he went home.
I hung out with my crazy friends that week that we were apart. I drank too much, smoked a lot of clove cigarettes (my chest ached) and had cheese puffs and Mountain Dew for diner a few nights. I was on the phone with one of my guy friends and strangely enough we were talking about relationships. I told him about the way that Dilbert always listened to me so well, like he was really trying to understand me and how selfless he was in driving me across the country to go to a funeral of a man he'd never met. I talked about how he'd talked to my grandparents even though he really didn't care much about old cars or religion. My friend said, "If you've found someone like that, why are you on the phone with me?" I took the hint and called Dilbert at 12:01am, February 14th, 2005 and married him 9 months later.
The funny thing here is that I had to make the decision against my gut instinct to do the thing that was good for me. For most people the thing that is good for them is the thing they would rather do. Not so for me, the thing that feels familiar is not good, the thing that I gravitate to is usually bad for me and will leave me feeling just as helpless and scared as I spent many of my formative years.
Since I married my Dilbert, the self destruct urge has fallen off quite a bit. Yes, I still get the urge to spend too much money or eat the entire pan of brownies knowing that I'm going to regret both later but for the most part, I'm much more even keel.
This last week, not so much. Not only do I want to eat the whole pan of brownies, I want to do it while downing a 6 pack of hard cider and possibly smoking more cloves. I want to do things that would be bad for me because then maybe the hurt would be controllable. I know how to dig myself out from under my own mess, I've done it more times than I care to mention. I don't know how to dig myself out from under this and when I have one of those bad days mentioned above, it feels like nothing is going to feel right ever again. I feel the weight of the decision we had to make and the judgment of every right-to-lifer who has never met me and doesn't know my situation. I feel my own judgment and that of every friend who had a funny look cross her face when I told her what we were going to do. I feel the weight of the judgment of every mother who carried to term with the knowledge that her baby wouldn't live and just counted herself grateful for the experience. I don't know most of the people mentioned above but I feel the weight nevertheless. That weight makes the 3 lbs I'd gain from the brownies seem rather insignificant.
But, on days like today, all that judgment doesn't seem to matter. I know my baby is being cared for in Heaven, I know that he was able to feel a mother's touch if only for a moment and I know that I did all in my power to make his short life sweet for him while making things manageable for myself. I know that my conscience is clear on this particular point and I know that God understands the choice I made and loves me none the less. Secure in that knowledge, I will continue to ride the wave as best I can without aid of the self destruct button.

Saturday, March 12, 2011

Baby Joel

Our Sweet Baby Joel came into this world on March 8th, 2011. We induced his birth because of some very serious brain malformations that had occurred that were incompatible with life. We made the heart wrenching decision to terminate the pregnancy and here is the story.

Our son Joel has no frontal lobe in his brain. We were told at 12 weeks that he would not be able to survive outside the womb. We were sent home with a difficult decision to make. Terminate this very wanted pregnancy or continue it with the knowledge that a baby wasn't going to be living with us afterwords. We read, we did research, we got second opinions. Everything we read pointed us toward termination. We have two children already, they need a mother who can do more than cry in bed most of the day and a father who can go to work everyday and earn a living. We both need to be there for these kids and we felt crippled by this knowledge. The more research we did, the more it looked like this baby wouldn't make it to term anyway. He would most likely come late in the 2nd trimester. The doctors we talked to said that a stillbirth at that time can be risky for the mother and future pregnancies. Technical names like incompetent cervix or uterine scaring were thrown around while our heads were spinning.
The night we got our diagnosis I told my husband that I wished I could just give birth and have this over with. I wished that I could have the baby and hold them and tell them goodbye and then begin to heal and look toward the future without the awful waiting period of pregnancy to go through first. As we looked into our options, we realized that this was possible but were told that it probably couldn't happen for about 6 weeks. Then at our 14 week visit with the high risk OB/Gyn they told us that they had found a doctor who could and would do an induction of labor but only if we agreed to do it the next week. He felt that the risks would be higher if we waited. He also turned out to be the only doctor in our very large metropolitan area who would consider doing an induction at all so he was our guy. Our other options were to do a D&C (Dilation and curettage, they use tools to scrape out the contents of the uterus) or a D&E (Dilation and Evacuation, they use suction to empty the uterus). Neither of these options would allow us to see or hold our child, I would be unconscious for the procedure, neither of these options would give us the closure we were so desperately searching for and neither of these felt like a good way to honor the person-hood of our child.
After all the discussion, all the weighing of options was over, we decided to trust this doctor and do this on his time table. We made arrangements for our kids, my midwife Kim was able to come with us and we checked into the hospital late on a Monday night at 15 weeks 3 days gestation.
I was hooked up to an IV. I argued to have a hep-loc instead of a constant IV so that I could have more freedom of movement. They drew blood and then the doctor took out the laminaria that his partner had placed that morning.
The laminaria are little bits of seaweed that absorb water and when placed in the cervix, they will expand and dilate the cervix. The partner had put in the laminaria that morning and then placed two sponges behind them so that they wouldn't fall out before they expanded. When we got to the hospital the doctor took out the sponge but was having some trouble finding the other one. His examinations had been rough from the start but were quite painful when he was looking for the other sponge. It turns out that the sponges had been squished together and had both come out already. He finally realized this and removed the laminaria. Then he put in the first dose of Cytotec.
Cytotec is a medication that is used for people who have ulcers. It was not developed for women who are in need of an induction. The strong uterine contractions it causes are a side effect of the drug. The drug is commonly used against label because it works so well at bringing on labor but in full term pregnancies it does have some very nasty side effects like hyper-stimulation of the uterus and a marked danger of uterine rupture when used for a vaginal birth after Cesarean (VBAC). Because this wasn't a full term pregnancy, hyper-stimulation was of less concern to us and since I have never had a Cesarean, we felt cautiously safe about using it.
I went to sleep after the first dose and didn't wake up until 5am when the nurses assistant came in to check my vitals. I reminded them that I was supposed to have gotten another dose of Cytotec at 3 and the resident came in and gave me another dose. The drug was inserted as close to the cervix as the doctors could get it and about 15 minutes after the 2nd dose was given, labor really started to kick in.
Kim had gone home for the evening but by 6 am the contractions were strong enough that Dilbert felt that he needed to call her to come back. It turned out that that was a really good idea.
The contractions were not like any I'd ever felt before. They didn't rise in a wave with a peak and a rest in between. They came in jumps and starts. I'd have about 40 seconds of rest and then a 30 second contractions that hit me like a truck. Then it would be gone. Later, I had longer breaks but much longer contractions, it felt like there were 2 or 3 of them coming on top of eachother with no break in between.
I tried several different positions but just couldn't seem to find one that helped ease the pain at all. Kim had left the birth ball with us but the room was too cold and I didn't want to be out of bed for very long. Plus, by then they had insisted on an IV and nothing by mouth so moving around was difficult.
I got back into bed and just tried to sit forward as much as possible. We put the bed all the way up so that it would support me and I tried to sit cross legged but that was uncomfortable too. Toward the end I asked Dilbert to stand at the end of the bed and let me pull on his arms so that I would be leaning forward.
I'd asked him too before and so he kept reminding me that we were doing the right thing. When contractions got more intense I started to sob through them. The nurses, when they were there, talked about getting me something for the pain but in the middle of a massive contraction I shouted "No! No! No! I'm only going to have a minute with him, I don't want to be loopy!"
As the contractions kept coming and I kept crying I started whimpering for Kim. Whenever I had a rest I tried to remind Dilbert that it wasn't because he was doing a bad job, he was great, I just knew Kim was bringing the heating pad and her calming presence and I really felt like I wanted both right away. She did get there at about 7:30. She slipped in quietly while I was in the throws of a contraction, held my hand for another one and said I sounded "Pushy." "Maybe you should just try a little push with the next contraction." she said.
When the next one hit, I gave a little push and it felt so good to do something with this one. I pushed just a little and felt something come out. I threw back the blankets and there he was.
I started wailing then and told Dilbert to pick him up so he could feel a loving touch in case he was still alive. I looked at him an wailed and wailed and cried like I never have before. There was a Bible verse that kept going through my head. It was from the Matthew 2, the slaughter of the innocent by Herod, what went through my head was "WEEPING AND GREAT MOURNING, RACHEL, WEEPING FOR HER CHILDREN, AND SHE REFUSES TO BE COMFORTED, BECAUSE THEY WERE NO MORE."
Joel was not born with a heartbeat so we had them clamp and cut the cord so that I could hold him. I asked Kim to steady my hand because I was shaking and weeping so hard. I kept saying "I'm so sorry baby, I'm so sorry." over and over again.
The doctor came in and started trying to grab the placenta. He couldn't reach in (though he tried despite my protests and obvious discomfort). He ran out and Kim told me to push with everything I had so that I wouldn't have to have the really scary drugs that he was running to get. I pushed just a little and it came out intact. Kim did a fundal massage then to help the uterus clamp down but I really don't remember much of what happened after. I was looking at the baby.
He was absolutely perfect on the outside. He had these perfect little hands and feet. This tiny little chin and even ears. He had the sortof bug eyes of a 15 week fetus but he looked as perfect as he could. His skin was very thin and so this made him look very red. We had thought about letting the Pudding come see him but ruled that out because of this. After he had been out for a little while, I could feel him getting colder so I put him on my chest to keep him as warm as I could. I knew it wouldn't do any good for him, that he wasn't really in there anymore but some primal maternal instinct told me I had to keep my baby warm so that's what I did. We wrapped him in a blanket that had been made for him, it was too fuzzy and left little bits of wool on him but I really wanted to keep him warm so I didn't mind the fuzz.
We had him with us for about 3 hours. A friend who is part of the Now I lay me down to sleep group came and took some pictures for us. The photo at the beginning of this post is her work. A kind nurse took him to print his feet and weigh him. She did some clay impressions of his feet as well. She handled him so gently and kept him covered while she had him out. I was so grateful for that. I thought he was beautiful but I knew others wouldn't see him that way so I was glad she kept him away from the eyes of others.
The longer he was out the more we could see changes in him. He began to wrinkle and whither a little. His skin dried out and he sortof seemed to sink a little. Despite my best efforts, I couldn't keep him warm anymore so we knew it was time to say goodbye. We held him and kissed him and told him we loved him very much. I told him I would miss him. Then we handed him over to the nurse who took him away.
We had him cremated and have him at home now. We had a small funeral for him yesterday. In the days in between his death and his funeral we actually felt a lot better. We felt like the weight of decision had been lifted and we were out from under the burden of this huge aweful thing that had come to us for the first time in nearly a month. Today is a little harder, we have to get back to normal now, I have to start cooking again, Dilbert has to go back to work on Monday, we have to discipline our children and be parents again. I'm sure things will get better soon, we feel like we now have the permission to look to the future again. We're making plans to not make plans. We're going to take a trip, we're going to move on past the darkness.

Monday, February 21, 2011

"Incompatible with Life"

***Disclaimer...This is NOT a judgment on parents who have terminated pregnancies for reasons I wouldn't have. I am so sorry for those parents who have had to face this decision and I understand how hard it is to make because I'm there now and it sucks. This post is an extension of my own grieving inner monologue. In addition to parents who've terminated for reasons I wouldn't, I'm also angry with cranky pregnant women, women with newborns who look annoyed and my own children who get cranky with me for being sad. None of these are logical or lasting so please do not take any of this personally. This is grief talking, and it ain't pretty.

A time to decide, a time to heal. That was the name of one of the books the genetic counselor gave us after we found out about the holoprosencephaly and that, for our baby, it was "incompatible with life."
The copy we got was just that, a photocopy of a book, we could occasionally see a pair of very hairy hands that were holding the pages in place on the copy machine. Nice watch though. I read the book in one day (its not very big) and cried through most of it. I read story after story written in parents own hand of their decision and how they dealt with it.
Many parents talked about how healing it was to hold their baby after the pregnancy had been terminated so that they could say goodbye and know that their baby was real. They name the baby, have them baptized, dress them, take pictures and hold the little life that never quite made it.
There were many different diagnosis that prompted the termination of these pregnancies. I found myself angry with the parents who terminated for reason's I wouldn't have. The babies with downs syndrome or sever retardation that I would have kept but they didn't. Those parents were given the option of life, I wasn't and I'm angry about that. I'm angry because I would kill to be able to have my baby alive and see them look at me with the flicker of recognition and trust that my previous babies did. I'd kill to have a baby who had a chance at life, no matter the state of that life. I'd love to be learning how to live with a high needs child and how to make their life the best I can. But those are not options I have just now. The only option I have is death now or death in six months. All I get is "incompatible with life."
So I'm angry at those parents who had life, and threw it away. They took the precious life they had and decided not to take it because it wasn't perfect and wouldn't ever be.
I understand that quality of life weighs into this decision and that parents don't want to cause their children suffering and sometimes it just seems easier to end a life before it really begins than to deal with the imperfections. But from where I sit now (and I'm sure this will change because everything does) I just can't understand not being overjoyed because at least your baby had a chance. There was a chance for life. From one who is incompatible, that seems like a lot.

Thursday, February 17, 2011

A Long, Bad Day

On Wednesday last we had a routine ultrasound for our third child. I was at 12 weeks gestation and measuring a touch big so we wanted to confirm dates and make sure it was only one baby, not two. We brought the Pudding and the Tyke with us so they could see pictures of their new baby brother or sister. The ultrasound tech made me change into one of those awful gowns, squirted the goo on my belly and did her thing. After the initial scan she stepped out to talk to the doctor which is all pretty normal. But she seemed to be gone for a long time. When she came back she said we needed to do a trans-vaginal scan as well because my cervix was a little tipped or something like that. I said ok and since the kids had already been banished to the waiting room for being children she went ahead and did what she had to do. After that was done she consulted with the doctor again for a long time before giving me the ok to get dressed and leave.
I went home with the kids, put my son down for his nap and generally went on about my day then at about 3pm I got a call from my family doctor. She is the one who ordered the scan because if my midwife does, insurance won't pay for it, it's a whole thing. Anyway, she said that the scan had been irregular and that there appeared to be a cyst on the baby's brain so we needed to talk to the people at Maternal-Fetal medicine.
I didn't believe her.
To be fair to myself here, this is the same doctor who sent me to get x-rays when we knew I only had a sprain, sent me to a specialist when that same x-ray showed a sclerosis that hadn't ever bothered me. The specialist took on look at the picture, asked me if it bothered me at all and then told me to go home and come back if it hurt. This took about 6 hours of my life for pretty much nothing so when this doctor says I need to see a specialist, I tend to take it with a grain of salt.
I had the report sent to my midwife who wouldn't send me out unless it was pretty bad. When she got a look at it she said the same thing so then I finally started worrying. I called Maternal-Fetal medicine and after waiting on hold for 10 minutes, explaining the legality behind midwifery (no, she really doesn't have to have a back-up physician and no, I'm not being treated by an ob/gyn at all) and generally who the hell I was they finally set an appointment for Monday.
We waited all weekend for that appointment. I tried to be upbeat, I went about my normal routine and took care of my kids. I didn't wash a dish or clean anything so my house looked pretty terrible but that's not that far out of the ordinary. Saturday night I took a shower and prayed that God would take this weight that was resting on me and lift it. I felt in that moment that He did. I went through the next day at church with a smile on my face and a grain of confidence in my heart that everything was going to be ok and God was going to work this out. On Monday morning as I dressed for my appointment, in what I thought was the ultimate act of faith, I put mascara on. Not the waterproof mascara that gives you just a hint of definition but the va-va-va-voom, sex kitten eyes mascara that I wear when I want to look really good. Like I said, it was an act of faith. God was going to take care of this, I wasn't going to have to cry.
Faith and hubris can appear erily similar or so it seems to me now because after an in-depth ultrasound on a much fancier machine and a VERY long consultation between the doctor and everyone else in the practice they finally called us back and told us that our baby was not going to make it. The diagnosis was holoprosencephely which means that part of the baby's brain just never developed. In our case it's both frontal lobes that never materialized. Enough of the brain is missing that it is extremely unlikely that the baby would make it to full term and completley impossible for it to do things like breathe on it's own, see, speak, remember, suckle or live. What we have is incompatible with life.
The doctor thinks this may be caused by a chromosomal abnormality called Trisomy 13 which means it is unlikely that we could do anything about preventing it and that it's unlikely to occur again. We're waiting on some test results to find that out for sure.
So now the question is what do we do. Do we continue on for possibly 6 more months and have the baby stillborn or do we terminate the pregnancy now? The question is not one I ever thought about. Even when I was 24, unmarried, at the beginning of a career that was finally starting to go and found myself pregnant, I didn't consider "termination." I always felt that procedures like that should be reserved for situations where the mother's life is in danger. I always thought those people who terminated to avoid a child with mental disabilities were missing the point and taking the easy way out. I never really thought about those for whom life is not on the menu. We can either have death now, or we can have it later but death comes either way. Life is not one of the options we are being given.
Because of that fact we are now trying to decide when and how to end this pregnancy. An induction seems like the best way but I am not eligible for that for another 5 weeks. That's 5 weeks of postponing the inevitable and living in limbo. For an immediate solution, there's the D&C. This is the usual abortion procedure which involves dilating the cervix and using tools to scrape out it's contents. This is no judgment on anyone else who has had this procedure done before but for this baby, this very wanted and loved baby, it feels cruel. We don't know how much they understand or how much they can even feel at this age but I imagine that were I a little fetus bobbing around in the water and bouncing off the walls of my home, feeling that home slowly and steadily squeeze me out might be slightly less scary than to have the door forced open and a big metal tool drag me out. I know the result is the same either way but it doesn't feel that way to me.
As a mother it is impossible to choose the way my child will die. This is not a choice I ever thought I'd have to make. I can choose to carry this baby to term and give birth to a dead baby. I can choose to have an induced labor in 5 weeks and give birth to a very small dead baby or I can have an operation now and not give birth at all. None seems any better than the other. None of those choices seem any kinder to anyone than any other.
It has been one week since that first ultrasound, 5 days since I was able to go to bed without crying, 3 days since we got our diagnosis, a day and a half since we tried to resume our current parenting obligations and it will be at least another week before I have to cook for myself because so many sweet friends have understood and sympathize and do so with dinner. We are lost in a sea of sadness just now and I just pray that God will answer this prayer and take the choice from me. This isn't a decision I want to make, I don't want to know the moment my child dies and know that it was my decision that caused it. Take this one away, it's too big for me.