Motherhood, insanity and everyday life.

Wednesday, February 28, 2007

Andrew’s Story - Updated

A couple of months ago, I posted this story on my blog. Today, I'm sad to report, Andrew died after a brief battle with pneumonia. My husband, daughter and I were with him in his final moments. Just as much as Andrew fought his way into this world, he also fought his way out of it. Andrew's life has been a long journey that has taken us to so many unlikely places. Andrew, you've touched so many people in your quiet way. Watch over us, buddy.

On November 18th, 1986, I gave birth to our first son, Andrew, via “crash” c-section. My husband and I had rushed to the hospital because my water had broken and we knew that something was wrong. When we arrived, the doctor on call hooked me up to a fetal monitor, gazed at it with a deep look of concern and then put her hand on my leg and said: “I’m sorry, but there’s no heartbeat.” Seconds later, she saw what she called an “agonal” heartbeat and I was rushed into an operating room where Andrew was delivered. For eight minutes, he did not breathe. Then, he barely began to respond. They hooked him up to a ventilator and put him into the neonatal intensive care unit.

As the day wore on and my anesthesia wore off, we found out that despite my unremarkable full-term pregnancy, I had something called vasa previa which essentially meant that part of the umbilical cord had branched off separately. Often, women will have vasa previa and it won’t be discovered until after they have a healthy delivery. In our case, it was different and oh, so wrong. My water broke at the exact point where the separate part of the umbilical cord had formed. Since it was a weaker part of the cord, it sheared and Andrew lost blood and therefore oxygen. The doctors assured us that there was no way to have known that would happen. We, and Andrew, were just unlucky victims of the odds.

Andrew stayed in the NICU unit where a battery of tests was run. Neuro specialists were consulted and within a day or two they told us that Andrew had virtually no brain activity. They and all of the medical experts felt that leaving him on the ventilator was to keep him alive by extraordinary means. And so, we made the gut-wrenching decision to have life support removed from our newborn son. First, we asked a Catholic priest to baptize him. The medical staff then asked if we wanted to be there when they removed the ventilator, but I couldn’t do it. The idea of watching my son die was simply beyond unbearable. And so we returned to my room and waited. And in a cruel twist of fate, Andrew started to breathe on his own. He was sustaining his own life without a ventilator. We suddenly found ourselves caught in the parental hell that is grieving over the fundamental loss of a baby while wondering why God was keeping his body alive.

As the days and weeks passed by, we started to adjust to the idea of parenting a developmentally disabled child. However, his disabilities were so severe; they were beyond that which we could handle in our own home. We spoke to social workers and staff who unanimously advised us that bringing Andrew home would rip our marriage and our future family apart because he would require around-the-clock medical care. He was likely blind and deaf, would never walk or talk, could not feed from a bottle or ever swallow food and his cognitive age would always hover around 1-1/2 months. He would never be able to recognize or acknowledge us. Essentially, he was and always would be in a vegetative state.

We were in such a fragile state of confusion about what to do next for our child who was essentially living in the shell of a body. At one point, we petitioned the hospital ethics board to ask what, besides removal of the ventilator, were considered “extraordinary means.” It was an agonizing path for parents to take but we did not want Andrew to suffer needlessly if his time with us was limited. The board basically said that all current measures should continue. We were comfortable with their advisement. Next we faced the decision of how to care for Andrew for the rest of his life.

We found out that our options were to find a foster family specially trained in caring for developmentally disabled individuals, or apply for a placement at a state-run center about an hour from our home. We chose the latter, feeling that they would be better equipped and trained for his care. That would also allow us visit him in comfort and convenience and give him access to the very best therapies and medical care available without having to leave his surroundings. Administrators from the center visited Andrew at the hospital. His appearance was deceiving since he was such a beautiful baby. His constant seizure activity had not yet started and years of immobility had not yet wracked his body with spasticity and brittle bones. They found that he was appropriate for placement and on January 7th, 1987, after he was fitted with a feeding tube, we drove him out to the center.

The initial days after January 7th are a blur. I remember visiting Andrew every weekend for several weeks to make sure he was getting the best care possible. We found the center to be a place filled with residents that had a wide variety of horrific disabilities. Some of the older residents had Down’s syndrome and had been placed there decades prior. (Something, of course, that would not be done today.) Others had dramatic and horrible birth defects. Still others were victims of strokes or near drowning or asphyxiation. These were the kids that you don’t see in the Special Olympics. They were special alright, but without mobility or communication or many very basic human skills that would allow them to interact with or benefit from mainstreaming in the community. Frankly, it was disturbing to go there. Not because it was a depressing place, but because the residents were so deeply damaged physically and developmentally that the first instinct was to turn away.

The gentle and competent staff embraced Andrew with enthusiasm and joy, something that had been woefully missing since he was born. To them, there was little point in discussing what was wrong with him, because he was what he was. Their goal was to take this tiny, damaged infant and treat him with the utmost dignity, respect and love that was possible. To this day, I think of them as angels on earth because of the way that they swooped down and gently cradled Andrew when we, the parents, were at our most vulnerable.

Weeks, months and years went by. When Andrew was first born, one of the neonatologists estimated that he wouldn’t live beyond five years, due to his many medical complications and his potential for life-threatening respiratory issues. He did indeed suffer through many bouts of pneumonia when he was young. Once Andrew passed his 5th birthday, we stopped asking for long-term prognosis. It seemed obvious to us that God had a purpose for Andrew here on earth and although it was beyond our comprehension, we just had to do our best to keep him comfortable and well cared-for to the best of our abilities. We feel very strongly that the center has fulfilled this mission for Andrew and for us.

Andrew turns 20 this weekend. His birth and his life have changed us immeasurably. My husband and I are better parents to our two other children who are now 19 and 14. They have become very compassionate, kind and sensitive young adults, no doubt as a result of visiting their profoundly developmentally disabled brother regularly since they were born.

When I tell people the story of Andrew, I usually condense and soften it. Not surprisingly, it’s a conversation stopper and it’s the difficult answer to the question: “So, how many kids do you have?” Mostly I do this to try and protect the person asking because sometimes Andrew’s story elicits tears. Most of the time, it makes people really, really uncomfortable because they have no idea what to ask next. I completely understand that reaction and work really hard to avoid it. Nevertheless, I always try to tell people that Andrew’s birth was both the most tragic and beautiful thing that has ever happened in my life. While we were still reeling over the blow that life had dealt us, friends and family from far and near descended upon us and helped us through that first very difficult year. Their love and support has touched us to this day and continues to sustain us and Andrew.

Sunday, February 11, 2007

Doomed Love

“I’ll tell you something about motherhood. It’s the most impossible love. You tell me when it ends. You tell me when it stops.”
- Diane Keaton in
Because I Said So

One of my neighbors had a baby last week and as I gaze across the street at her house, I remember back to those days when we brought our own children home. I think about that all-encompassing, soul-sucking, time-saturating state of being when every minute revolves around that child. And then I fast-forward to now, when my kids are teens and rarely have a physical need for me, let alone an emotional want of my companionship let alone my advice. I have to say, it’s a little rough on the psyche.

And no, this won’t be a long-winded rant about “where has the time gone?” and “when did they grow up?” In fact, my thoughts about motherhood are less about mourning the loss of their youth than it is about avoiding the inevitable mortality of my role as a mother. The question that looms over our house is: I know that I’ll always be a mother, but if nobody needs mothering, then really, what am I?

Really, it seems a little ridiculous that I would even have this discussion with myself. It’s one of life’s inevitabilities along with death and taxes: Our kids will grow up and no longer need us. And worse, they will be less interested in us than we are in them. Jeez, that hurts. I almost understand why aging senior citizens sometimes unexpectedly act up and make a big deal out of small aches and pains. They’re looking for a little attention. And, of course, it’s also why women obsess over their grandchildren – so that they can relive their maternal years.

Still, there is virtually no other relationship, except perhaps employer-employee, where nice things will be said, but both parties know that it will be time to move on. Sure, we’ll get the employee newsletter and the obligatory phone call once a week or two, but it has changed. The relationship has fundamentally changed, never to be the same again.

Yet, I’d do it all over again in a heartbeat – every anguished moment of worry, every raging breath of anger, every tear shed over their broken hearts – it’s worth every single second.

My “baby” turns 15 this week – my own personal Valentine on the day before. It’s different to watch a daughter growing up. You fight with yourself over warning her about life’s trials and tribulations or stepping back and letting her experience them in her own way and her own time.

Excuse me now. I have to go and call my mom.

Tuesday, February 06, 2007


Those of you who are regulars...oh, who am I kidding? There are so few of you that I could probably name everyone personally. Anyway, you're probably wondering where I've been. Oh, I've been here. Me and the hubby and the girl-teen, hunkered down up here in the frozen tundra. Seriously, are we actually thinking that Global Warming is a possibility because I've got negative 12 reasons why it probably isn't. Yeah, it's that cold. (OK, all you greenies, don't get all up in arms! This is sarcasm. I'm in agreement that all this crap that we do is probably blowing a gigantic whole in the ozone. Don't be haters - OK?)

Anyway, I have to be perfectly honest and tell you that my creativity-meter is on low. Why? Well, because it's usually fueled by interaction with my children, which is why my blog is titled "Momhood." The problem is, if I don't interact, I have nothing to write. And lately, interaction has been at an all-time low. No, we are not in a fight. That actually would be interaction. We are in a state of suspended parenting. Yes, I am currently living through that glorious phase where every single thing I say is hated. Words barely leave my mouth before they are swatted away as useless, annoying dribble. I haven't felt this worthless since my son needed to learn to pee standing up. Basically, I can't say anything right and so I've chosen not to say much at all. Yes, I have a spine. You see, I'm picking my battles and this is one in which I'm Switzerland. It's just better if I back off a little bit and say as little as possible.

It'll be OK. I have my writing, my TV and, thank God, my husband. That man deserves a Purple Heart for being in the middle of this estrogen-fest. In the meantime, go check out my archives. Or just send me an e-mail and say "Hi Karen. I feel your pain!"