Thursday, March 31, 2005

Libby, the watermelon Posted by Hello

Matt's Michigan State Boy Posted by Hello

Wednesday, March 30, 2005

Schiavo Case continued

Hi, JMak! Thanks for your comments. To be honest, I don't have many men in my life with whom I speak about these things... husband and toddler. Pretty limited audience, LOL. Matt actually agrees with me in sustaining life as we understand it with TS.

You wrote, "I have noticed that the discussions I get in also seem to be divided in another way. While I agree the husband is a scoundrel, I am not sure why most men I speak with seem to bo OK with taking Terri off her feeding tube (siting humane rationale) and most women I speak with seem to be dead against it (for the same reason). I have not unpacked this further with many of them, but wondered if you found this true?"

Your observation about the men being more verbal about "pulling the plug" sooner is interesting. I've seen it in the ICU. Men can come to the conclusion of ending life-sustaining interventions easier than women. My opinion is only this, opinion, and I do not mean to offend either sex, but I wonder if it has to do with the decisive nature of men vs. the nurturing nature of women. The women are often the ones sitting at the bedside looking into the hollow faces of family/friends, ascribing personality, interpretation and meaning to their existence. Having an older handicapped sibling I've been exposed to an entire subculture of people who were literally chosen by their families, all chosen at birth. Some of them appear to function at the same level that TS does, but their families have "kept them around" all these years, working hard day and night. And while I'm sure that dads are involved, the weight often rests on the shoulders of the mother re: caregiving and direction. I know I don't speak for all women, but we interpret suffering differently. Low functioning is not suffering. Requiring total care is not suffering. Not being able to communicate outwardly is not suffering. Neglect is suffering. Abandonment is suffering. Pain of cancer and erosion of the body from acute disease process are suffering. Starvation and dehydration are suffering.

While we lived in Hamburg we got to know the story of Hunter Kelly, son of Jim Kelly the famous football player. Hunter's mom (and sometimes dad) went to WCH. I got to know Jill a little bit. She was always willing to share about recent developments with Hunter. It took FIVE years for them to figure out how to communicate with him... they use a blink system. Jill was persistent and refused to believe that there was no way to access her son.

Thanks for your thoughts again, JMak. And whatever you want your end of life wishes to be, please at least write them down and sign them. It brings a great deal of peace and clarity to both your family and friends (and the nursing staff who, many times, will end up advocating...). I can't believe I actually put this many cogent thoughts together. Hope it makes sense.


Thursday, March 24, 2005

The Schiavo Case

Sure, I'll tell you what I think. I think the husband is wrong. Here's why, as far as I understand this very expansive situation: 1) She's not actively dying of a disease process. Her status (before they decide to let her starve or dehydrate) was stable, as I understand it. She is not filled with cancer or battling an infectious process. She was hydrated and nourished, and comfortable. She's in a vegetative state with basic brain function. She is not brain-dead. There's a difference. 2) She left nothing in writing to verify her wishes. Could this be her wish? Perhaps. But there's no concrete evidence. THAT'S WHY WRITTEN/NOTARIZED WISHES ARE SO CRUTIAL! The "quality" of her life is being determined by a man who did not have the decency to divorce her before shacking with another woman. The conflict of interest seems to make the whole dignity/ quality of life thing rather arbitrary. 3) She's not on extenuating "life support", meaning a ventilator or drips that sustain cardiovascular function, ie. Dopamine, Vasopressin. She has a digestive system that can accommodate food in a liquid form and is working normally, except that she would choke if she tried to eat herself. Many people have feeding tubes, many walk among us. It can't even be argued that she's on IV feeding. It's food. (I drink the same stuff twice a day during my pregnancy.)

If it was my sister, or mother, I wouldn't do this. I cannot pretend to know what the husband is motivated by. It's very complex and messy, I'm sure. Does he legally have the right? Yes, as I understand it, he does. (I think the hospital ethics board should have bought a set of balls somewhere and taken over power of attorney before this. The farther away a case gets from the origin makes it less likely that the unique nuances of the case will be considered.) However, decisions like this are not, and have not been, made in a vacuum in history. What I fear is that this decision will set precedent for dealing with retarded/disabled/discarded people everywhere. The case is not unique, people really do do these types of things all over the country (decide for themselves or others that life as they have it is too uncomfortable to exist). Life is becoming a cheap commodity, especially for those who cannot speak for themselves. We give value to a life when it can be productive. Productivity equals meaning.

It's a slippery slope. It started with abortion, picked up steam with Kevorkian, moved quicker as states began to grapple with "right to die" issues at a legislative level, and now this. My 15.99 year old babysitter is here visiting from Buffalo for her spring break. We were discussing the case, and her point, which I hadn't thought of before, was this: Why doesn't he turn over power of attorney to her parents? They obviously love her and would care for her. The same people who howl that this is probably what she wants don't acknowledge that the flip side of that is she may very much want to live. There's no evidence to support either argument, in my opinion. So why don't we default to choosing life? Because the definition of "life" has been reinterpreted and narrowed over the years.

There are ripple effects that occur when we make decisions. We're not the only ones effected. Our family, our town/state, our country and civilization are all impacted by the types of choices we make. The very reason that we're even hearing about this case is because many people made choices that enabled the husband to entertain and defend this choice. A number of years ago I read a book called The Right To Die by Joni Erickson Tada, a quadraplegic. It wasn't a complicated book, that's good for me. One of the things she talked about was the ripple effect.

I came away understanding that I have a responsibility to not only myself and my loved ones, but to my culture, to value life. Working in health care I've seen many situations like that of TS. I can say that many families choose life and abide alongside the patient, and it has become a part on my legacy too. To witness the persistent love that these families display gives me courage. I know this is a very simplistic point of view. I'm not well-spoken at this level, but in my gut I know what I would do and why. This morning I reminded Matt that we need to get our lawyer to draw up our will and Power of attorney forms, and I said point-blank, "If I was ever in a situation like Terri, please let me live."

Tuesday, March 22, 2005


I remember worrying that I would not have a good bond with my first born. The pregnancy had been so tough, the mental shift into mothering was harder yet. I was doing what the Lord had told me, yes, but I didn't have the warm, fuzzy feelings that everyone else seemed to. I told precious few people about it. But there were several individuals that picked up on my struggle and eased my mind. One woman, a leader of women at WCH, had three boys. She sat with me for a long time one afternoon. She had asked the right question and brought me to the jumping point... "If people really knew how I felt, they'd vote me off Motherhood Island!" She shared very directly with me regarding her experience. I knew, leaving that conversation, that I had someone who really understood and was praying.

The way I often explained it was that some moms run into the transformation of motherhood head-long, excited, arms extended, ready to go! I sort of backed into the new role, carefully feeling behind me, no outright abandonment, just cautious calculation. And the truth is, neither is right or wrong. Neither one makes you a better mom once you have given birth and take the bundle 'o joy home with you. Does bonding come? You bet. I remember the first day that I pulled the little sleeping boy up next to me and whispered, "I love you, Izak." It jolted me, I was hilariously embarrassed, but I knew the bond had come. A gift from God. And within a few days I reflected to Matt that I would run through fire for that baby, give my very life if I had to to save him, and wasn't that strange.... LOL.

My heart went to my daughter sooner. We share something even more common than Izak and I do. XX. And it was a very powerful bond. It felt like I understood her at a cellular level. Her cries had words, and her movement told me everything that I needed to know about her little life. We will share the same experiences in the future, female issues, the female mind. I was prepared for the sisterhood of women because I came from all girls. And even now I think, When you are a mom I will tell you about (abc), and when you are pregnant I will be sure to(xyz).

All of my babies were wanted. I knew God laid each one on my heart. Once there was one, of course there would be two. And once God said three, I looked forward to the days when I could get the gauntlet going. The day I saw two pink lines I felt a funny closeness awaken in my heart. "There you are." Kind of like I could see a little portion of the new life right there on that stick. I hid the test so I could surprise Matt a little later, but I forgot where I put it (pregnancy brain). That night I spent twenty minutes looking for it because I just wanted to see the baby again. I thought, I miss you, and I just want to reassure myself by seeing you again. Just looking at the lines on the stick was my connection.

Now my belly is starting to bow out, and I can feel things beginning to firm up inside. Someday I will look very "prosperous," as an older friend of mine put it. In the midst of it I'm able to share with moms-to-be that some of us back into motherhood, and sometimes we do pregnancy in the midst of struggle, but God always shows up in the end with the greatest gift ever... a fierce love for our children.

Saturday, March 19, 2005

New docs

Well, the kids and I have found our new family doctor. She's an M.D., mother of 5, and philosophically somewhere between my family doc back in Hamburg and my chiropractors. I can appreciate the natural approach to health care, but don't be stingy with the prescription pad if we need it. My doc used to practice OB/GYN and did a lot of home births, which is more common in this state than in NY. But the cost of malpractice insurance was so weighty that she decided to go into family practice. I like her. She took a bunch of time to talk about allergies and ear infections with me, which are the biggest issues my kids currently face. I think we're coming from the same direction, mostly. I feel like she acknowledges the fact that I'm educated too. So we'll see. The best part of the visit was when I mentioned who I was seeing as an OB/GYN and she smiled, "Oh, I love her!" Very cool. I was totally relieved.

Met my new OB/GYN two days later. She was really professional, mostly warm, but not as incredibly kind as my Buffalo midwives. That's some of the difference between midwife and M.D., I suppose. But she didn't bat an eye at re-prescribing me Zofran. I fee like I have a real sense of credibility when I comes to managing my hyperemesis this time. After two times, I know what works given my situation. It looks like I'll have to do a little paper work for the insurance company to allow them to give me 60 tabs a month vs. the maximum that they allow (15). At $22/pill I learned how to get it covered with Libby's pregnancy. I'm thankful for that knowledge now. Don't try to get between me and my Zofran! When Matt and I approached the subject of natural childbirth, I mentioned that I didn't need anything (meds or episiotomy) with either of my other two kids. She laughed and said, "Then I should think you wouldn't with this one either. If you don't want any pain medicine, then that's totally up to you." I was glad that she didn't get up on her high horse about "doing what we need to to get the baby out if there's trouble." No kidding, Sherlock. Duh. I would figure that, but don't come in guns-a-blazin'. But this third one should rocket out (here's to hoping).

Matt and Jon are working on getting the basement ready for carpet. Izak is stripping a gear that he can't be down there working with them, but with no steps and saws... I think it's best if he tries to nap. All I can hear is him pleading from his crib at the top of his lungs, "Please! Please!" *sigh* Unfair, Mommy.

Tuesday, March 15, 2005

Dear Sarah, about contentment...

Dear Sarah, thanks for your email and question. It's a good topic, one I think a lot about, so I thought I'd use it as a basis for this post.

"I know you love being a mom. Do you miss being a nurse? My husband and I have been talking about contentment lately. Can you be content and long for something else at the same time?"

The short answer is yes, I think you can be content and miss something. The past, a happier time, a particular season when you really enjoyed what was happening. One thing to think about is that you never really cease being that person. I'm still a nurse and an artist, even though I'm not currently practicing those skills. I was very fulfilled in those roles, but now is not the season for that expression.

The danger in "longing" is the trap of discontentment, which puts a negative spin on the here and now. "If I only had that paycheck again, oh! the things I could buy and then we'd be all set!" "If I just had... if I just could get out and buy... if my husband would just... if I just could use my degree... then I would be happy and this nagging feeling would go away." Contentment comes from really knowing that everything you have is from the hand of God Himself. It's not banking on the next thing; it's striving to better steward your current life and appreciate God's presence more fully. In that kind of freedom, we find the power to be obedient to the call of Christ on our lives to come away from the culture and be separate. Be mature followers, not merely children who sit and scream at His hem line when we don't have what feels right. Our heart is wicked beyond all understanding, according to scripture. If we are guided by our feelings (which lean towards discontentment and selfishness) then we will spend our life struggling to satisfy our proverbial bellies and never gain traction in genuine spiritual growth. As my husband says, we become ineffective as Christians. Are we going to Heaven? Probably, but we're just marking time until our funeral. That's pathetic, isn't it?

Contentment for me, lately, has been a lot about control... as in, who has it and who doesn't. I have found the deepest state of contentment when I know that I'm doing what God has asked out of a spirit that wants to be His. Let's not talk about the move, that's obvious. How about this... having babies is a very hard thing for me. I struggle with hyperemesis, excessive vomiting, until I deliver. When God moves in my life and impresses on me that I should have (another) baby, I know that it won't be easy because I will lose control of my strength, my body. I didn't want to be a mom for many years, in part, because I was fully aware that I would be out of control, no longer able to go and do and have what I please. Struggling for control with God is, in my mind, equivalent to the toddler trying to grab back the item from Mom or Dad. Red-faced, squawking, and ridiculous! The discipline of surrender is best applied with a quiet heart (talking too much will get you back to the beginning of things without ANY progress - so practice being silent). It's also reinforced by Godly community. We weren't intended to do this life journey alone. I have had amazing, life-changing friendships over the last 6 years that spurred me on (read as: kicked me in the butt) towards Godly contentment. And when I haven't had the goods to make headway out of brokenness, they held me accountable to get help. The goal of a Godly woman should be a peaceful and settled spirit.

I have begun to live by a few basic truths that have served me well. 1) God is not holding out on me... He really does want the best for my life. 2) God is not surprised by any of my circumstances. 3) God wants to make me new. So whether I'm digging out poopy diapers, working in the ICU, crafting a piece of music, "whatever circumstance I am in... I am learning the secret of being content."

Friday, March 11, 2005

Visiting Nurse

When I lived in Massachusetts I was a visiting nurse. I essentially worked for a doctor group who referred their patients to my company when they (the patients)became homebound, or if they had a sudden crisis/setback, i.e. surgery, acute process like pneumonia. Over the years I saw a wide variety of situations. Wealthy, powerful people who lived on estates so big that I wasn't sure which mansion on the grounds was the actual "house", elder abuse and neglect in all socioeconomic brackets, a young doctor recovering from a car accident, a mayor, a mother of 8, Gloucester fishermen, people dying, people living. By in large, my case load was elderly folks who weren't able to make it out to the doctor, but could easily fall through the proverbial cracks and become very sick with little notice. In each admission I had to list at least three diagnoses that justified financial reimbursement from the insurance companies. The one illness that, were it a real diagnosis, would have been listed on 90% of my intake paperwork: loneliness.

Many of the men and women lacked significant interaction. Their children were long-distance, busy or uninvolved (some I could understand why). Most were widowed. Their friends were dead or sickly. They hadn't been to church or synagogue in years; they were too weak or fragile to venture out to the hair salon, the store, even the lobby of the highrise. They were alone. I was roughly the age of their grandchildren (early 20's). I would hear the phrase, "You remind me of my granddaughter", probably one out of three times. If there was a spouse present the patient would call for consensus, "Doesn't she? The way she smiles (laughs, talks), it looks just like Jill." This generally made for an endearing relationship. I could care for their bodies while I nourished their spirits with a little tender interaction. A visiting nurse is a special visitor, and it wouldn't be unusual to enter the home and find that the patient had somehow managed to put on a spot of tea and locate some stale cookies for our little visits. It was a time to connect.

One particular patient I went to see embodied the diagnosis of loneliness. She lived in a beautiful half-million dollar house in an outstanding Boston suburb. Walking up to the home one would expect the finest of visits. She didn't answer the door when I knocked. I regularly let myself in because they knew I was coming and had agreed to the visit. I cracked the door in order to be stunned by the overwhelming smell of cigarettes. "Hello?" In the distance I heard a TV, seemed far away. "Hello? Visiting nurse." "Up here," came the answer. I let myself in to see a fully furnished home literally yellowed by nicotine. The walls, the carpet, the wood, the windows. I went up the stairs to find a tiny little woman sitting in an upstairs kitchen watching noon soaps and drinking a Manhattan. She was testy and suspicious, all the while dragging on a cigarette. The reason doctor had sent me out was "weight loss." You ain't kidding. She was a walking skeleton. He hair was brittle from malnourishment, she admitted she was too weak to wash, you cannot imagine the shape her skin was in. Her eyes were dull, her spirit more so, all in a swirl of yellow smoke. When I managed to find a scale, she was barely strong enough to stand on it with my help... 83 pounds. I completed my assessment, she barely ate a thing, drank three Manhattans a day and smoke at least two packs of cigs in the 12 hours she was awake. What ever she could dump out of a can or take out a wrapper was her meal. She was too weak to stand and cook. Her family had helplessly watched her slip into this state, they had begged the doctor to send a nurse. She fought them at every turn. She wanted to be left alone, and this was her perogative. She may have been nasty, but she was still sane. Fortunately, she took a shine to me. At the end of my visits she would ask, "When will you come see me again?" Soon, I would assure her, very soon. After several weeks she allowed me to send in nurse's aides to help her with her hygiene, a physical therapist to evaluate her strength and equip her with a walker, an emergency responder to fit her with a fall button. But somewhere along the way we stumbled onto a nutrition drink that she agreed to try, I believe it was called Resource. I bargained with her to please try one, because we both knew she was dying from malnutrition. She agreed, and as she started to enjoy Resource I began to see her gain weight. Five pounds, six pounds, she was mildly stronger, more cheerful. Ten pounds, fifteen pounds, we beat the clot she developed in her leg without hospitalization. Twenty pounds, she had a glint in her eye, though her hair never really did recover, her skin was much softer. Upon my discharge she was drinking EIGHT cans of Resource a day and had gained 50 pounds. My bouncing baby girl, we would joke. The last visit she would barely look me in the eye. "You can't leave me," she cried. I cried too, but we knew we would see each other in the future if she ever took another turn downward. I praised her progress and her effort. "You know," she reflected, "I think I was depressed. Really, I think I was dying from being so lonely. Thank you for your visits."

The ability to listen and laugh, learn and share, touches a tiny spot in our hearts that, though cardiologists have never mapped it, drives the body and soul of a person to choose to live.

Wednesday, March 09, 2005

You have a budding musician when...

You know you're raising a budding musician when part of the nap negotiations include the sentence, "No, you may not take the drums to bed with you."

Monday, March 07, 2005

Drum roll, please...

Well, some of you have been wondering, and some of you already know. We're PREGNANT! Due October 18th (two days after Izak's third birthday), so I will be 8 weeks along tomorrow. Three in three years, Matt calls it triplets the hard way. Izak and Libby are 19 months apart; this next baby will be 16 months from Libby. Close is fine with me. As a matter of fact I was hoping for 16 months.

No, this was by no means an accident or a surprise. I blogged around Christmas that I felt God stirring a place in my heart for another baby. I am happy to serve Him this way. Amidst the moving from NY to IL, I clearly remember looking at the faces of my family, my children. The thought was palpable, This is the only thing that's real, the only thing eternal... the relationship with my family. Houses get sold, the landscape changes, furniture breaks, faces of friends come and go, but my family, my children are the real inheritance.

I have also come to identify with people who grieve a terrible loss, much greater than mine, and have a baby as soon as they can. In the midst of bone-crushing sadness, a new life is the only thing that can produce joy enough to overshadow it. Not erase it, but eclipse it for a bit.

The first few weeks I wasn't sick at all, so that raised a real concern that I would miscarry. But lo and behold, the vomiting returns. Thankfully, I have left-over Zofran from Libby's in vitro existence. It's tying me over until I can find an OB... and they better gimme! There are no midwives here in IL, due to a huge witch hunt that ensued a few years ago following a rouge midwife's loss of a baby. I'm looking into an all-female MD OB group. Maybe that will feel more like a midwife thing. We'll see.

I am tired, very tired, as you can imagine. And cooking is a struggle. I gauge my nausea on a 1-10 scale - it's how Matt and I can communicate about it. Right now, an 8. We announced it in church Sunday and two women approached me afterwards to offer meals every other week from now till delivery. They also offered to run to the store if there's anything I need and just can't get out. Yes, yes, yes! Thank you!

The scripture that God laid on me heavily a few weeks ago is this: "Unless the Lord builds a house, it's builders labor in vain. Unless the Lord protects a city, the watchmen stand guard in vain." (Psalms) In this time of total transition I am held steady by the fact that when God is consulted on what to do, and how to do it, nothing will escape His eye. No relationship, no event, no difficulty will occur in my life that did not first pass through His loving, strong hands.

Forgive me if I'm not overly expressive tonight. I'm tired. LOL And it's late (7:49 to be exact...). Dear Hamburg friends, I miss you so much during this time. You were so wonderful during my long pregnancies. Please pray for me in this season. Not only that God will sustain, but that I will walk with Him quietly in the wilderness.

Thursday, March 03, 2005

Interpreter, please

I remember when Izak was little. He had started sleeping through the night, so we were using the Huggies Overnights for his night diaper. They held up really well for his 12 to 14-hour stretches. One evening I was out of my supply and hadn't had a chance to get to the store. I called Matt and asked him to pick up a pack on the way home. When he came home through the door lugging a huge pack of plain ol' Huggies (NOT Overnights) I was frustrated. "These aren't Overnights, they won't work," I argued. "Sure they are," he responded in all sincerity, "Look at what it says, 'Super Mega!'" It took a minute, but I then understood that he took that to mean the amount of pee the diaper would hold vs. the increased number of diapers in the packet. We had a good laugh. And then went out to get a pack of Overnights.