Hold On Loosely

I have reached somewhat of a crossroads in my parenting career. Our nest is practically empty. And, as you may know, I get pretty excited when the college boy returns home, as he did this past weekend. This is year two for our adjustment to having a child in college. We’re better at it. I no longer carry my cell phone around constantly in case he needs to call at any moment. I still worry when he travels the 6 hours to and from school, but I’m letting go…a little.

I’m also not so old that I don’t remember what it was like to be in college. That fierce tug of independence fighting against the nagging obligation of paying due diligence with the parents. One seemed so cool and a bit scary and the other was mildly annoying and sometimes a little rewarding (food, laundry, nice bed.)

Let me add that our son is really good about checking in with us so we don’t worry needlessly. He calls a fair amount and he doesn’t spend too much money. In the child lottery, we did very well.

What stumps me is that I suddenly feel awkward around him because I can tell that he’s much more interested in being almost anywhere else than with us. In fact, it feels, for me, a little like high school when I would make feeble attempts at talking to boys all the while knowing that there was really nothing I could say that would captivate them. It’s as if I’ve completely lost the ability to converse and find myself taking desperate shots at saying something, anything, interesting. In the process, I feel him drifting away and I worry just a little bit that it might be the beginning of the end, so to speak.

And yes, there is a longtime girlfriend of three years that figures into this equation. She probably seems more like family than we do on most days, which is why we try our best to include her in family outings. I want both of them to feel really comfortable around us and perhaps therein lies the problem. I think I’m trying too hard. It’s as if I’m running around saying: “Look at us – we’re FUN!” It’s pathetic, I know. And probably about as appealing as a trip to the dentist.

I need to just relax and let him live a little. I can’t make him want to be around us any more than I can make him clean his dorm room. I just have to trust that it will work out and we’ll get our time with him. And, in the meantime, I do have a high schooler here every day that I can still cling to. Let’s see, what can I do to annoy her today?

Nice Work If You Can Get It

Recently, I received an e-mail from a friend:

“I remember you used me for a reference when you applied to be a Girl Scout leader. Do you mind if I use you for a Cub Scout application? I can't believe I was talked into doing this! It's for ONE YEAR AND ONE YEAR ONLY. I swear.”

As I sent her a taunting message welcoming her to the black hole that is Volunteering, I thought back to the many volunteer jobs I’ve had since my kids were young. To be perfectly honest, few of them were something that I’d put on my list titled “Things That I Enjoyed.”

I was a Girl Scout Leader for about four years. I have to say, often, it was hell. In fact, my family, including my daughter who was in the troop, came to hate the days we had Girl Scout meetings because it meant that Mom would be very, very crabby and would later require a large glass of wine.

I liked my co-leaders. They were all fun, extremely intelligent career women. By day they were Controllers and Occupational Therapists and Federal Judges. By late afternoon, we all turned into glorified babysitters yelling at girls to listen and stop picking at each others’ hair. I signed on because I felt the tug of guilt knowing that people were volunteering for my child’s benefit and I probably could also make time to help out. Some, like me, answer the call of that guilt. Others, perhaps more wisely, choose to ignore it and sign on only when begged. Their sanity is probably still intact, but that may be at the expense of their community social standing.

If you’re new to parenthood, here’s what you need to know about volunteering. It’s the initiation rite of parents. It’s also the primary line of information and communication regarding your child and their experience at school and/or extra-curricular activities. That is to say, if you’re not volunteering, you are out of the proverbial loop. You haven’t met the parents that run the school, the dance studio, the team – you, and your child, will be one step behind. Sure, the teachers and administrators are giving out grades and the coaches are creating the game day lineups, but the fact that you are around – making phone calls, preparing snacks, chaperoning field trips, ordering supplies – gives you first-hand knowledge behind the scenes. And as we learn in the business world, knowledge is power.

It’s a slippery slope, however, because the old adage “if you want something done, give it to someone busy,” is so true, it’s scary. Although there are lots of activities for which you can volunteer, there are relatively few people volunteering. You’ll find that you see the same faces at hot lunch, at cub scouts, at rehearsals. This is both good and bad. It’s good if you don’t wish to volunteer, but it’s bad because if you don’t, you are now at the whim of those that do. One of the great things about being a Girl Scout Leader is that I could influence the number of times that we camped (blessedly few) and length of our troop meetings (often short). Parents were always extremely grateful for the time that I put in and I felt like I was paying my dues but my secret agenda was always to have some control over things.

The bonus was that I made a lot of great friends by volunteering, so in that way, it was SO worthwhile. The time I spent collating newsletters at school was my time to vent and share issues that I couldn’t solve on my own. It was effective therapy with the only cost being elbow grease and a willingness to surrender some free time.

What I should probably tell my friend is that volunteering is like eating potato chips. You can’t sign up for (or eat) just one. Once word gets out that you’re nice, competent and not insane, you’ll be a target for several committees. And if you’re fun, it’s even worse. Everyone will want you. It’s a great ego booster and a gigantic time-sucker. The choice is up to you, but I do recommend that once in a while you exercise your right to say “no.” After all, you shouldn’t be having all the fun.

Andrew's Story

The following story is sad but true. I generally stay away from sad topics, but it just seems like the right time to talk about a very important person in our family. Happy Birthday, Andrew. We love you.

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.

Adoration and Suffocation

I'm giving myself a little blog vacation. And so, in that spirit, I offer you something from the archives, about two years ago. Funny how I'm still feeling the same. Enjoy!

I have wanted to be a mother since that day, 33 years ago, when my little sister was born. I was 12-1/2 years old and expected that a baby in the house would be nothing more than another irritation. I didn't think it would affect me in the least. Instead, I fell completely, instantly in love. Here was the one person in the entire world who loved and adored me no matter what. She didn't think I was fat or uncool or had buck teeth. She worshiped me. In return, I showed her off like a new toy. I took her everywhere and bored friends to death discussing her cuteness. Why couldn't they see it too?

And so when I embarked on real motherhood, I assumed that it would be more of the same. Whoa. Reality bites.

My mother didn't tell me that there was more work than walking the baby to the park every day to show my friends. Who knew that infants stayed up all night? Suddenly I knew the deep, ugly secret. While I slept a blissful, pre-teen slumber, my sister screamed the night away. No doubt I provided respite for my exhausted over-40 mother, but I definitely got the better end of the deal.

On the good side, my own children did adore me...for a time. I was all they ever wanted. They clung to me for dear life in good times and in bad. Sometimes to the exclusion of my poor husband who just wanted a baby to hold and love and sit still. They also told me everything - every story from day care, every like, every dislike, every single thought. Who knew that kids could talk this much? Sometimes, in a selfish state of exhaustion, I'd go to work in the morning and sit at my desk, thankful that nobody there wanted to touch me or tell me a story that lasted 30 minutes and came to no conclusion.

And now that my kids are in their teens, I'm wondering where all of that unequivocal adoration went. I know that they didn't stop loving me, but when did they stop liking me? When did their hurts become beyond my expertise? How come I can no longer make it feel better?

They push me away and sometimes it wounds me to the core. They come home from events and I find myself giving them the 3rd degree. Not because I don't trust them, but because I want to know about their lives. What did they do? What do their friends do? What do they think about everything and anything? I just want them to talk to me.

I realize that I need to suck it up, mellow out and end the pity party. It's time for me to give them space and know that they'll come around. If you love something, set it free.....

Stealing a Moment

We stole an evening from our daughter Saturday night. Shhhh. Don’t tell her. We’re hoping she won’t notice. If she did, I think this is how she would describe it: “Nobody was around and nobody called me, so I sat home with the parents (ugh), watched a movie and ate Chinese food. B-O-R-I-N-G!”

Here’s how I’ll describe it: “Our daughter had no plans and neither did we and so we went to Blockbuster, chose a movie that we could all agree on (The Greatest Game Ever Played), and picked up Chinese food. It was really nice. For a couple hours, it felt like we were a family again, instead of a splintering unit headed in different directions connected only by cell phones.”

I treat these “stolen” moments like gold. They’re rare and really special to me. I completely understand that to a 14-year old, an evening like that is on par with a visit to the dentist – slightly painful and quickly forgotten. To me, it’s precious. For two whole hours, my daughter forgets that she doesn’t like me much or that I annoy her to no end. Too bad it can’t last.

Oh, and in case you’re wondering, the movie was great. Watch it with the whole family, if they’ll let you.