Like many people, my life can be separated into various chapters; family, childhood, high school, college, working, law school, professional life, marriage, parenting, and, in my case the world that I’ve become part of because of Maggie. Each of those chapters overlaps with some of the other, but each is separate and distinct in its own right. I am happy to say that I have circles of friends in each and while those circles overlap some, for the most part they too separate and distinct.
In the past 24 hours, I have had contact with someone from every one of those circles. That makes me feel rich indeed.
Today is a special day in several of these circles. My wonderful friend Deborah is celebrating her birthday today. We have been friends since my sophomore year in college in 1976. We were roommates for that bicentennial summer but other than that have never lived in the same city. We often joke that is the reason we have remained such close friends. Happy birthday Deb! Lori is someone I met in Maggie’s world. We have been friends for 13 years since her twins were babies. She is celebrating a resolution of an ongoing battle with her ex-husband and this Friday the 13th is a lucky day for her.
Tonight I will meet with three women I know from my professional life. This is my “club”. The “club” does not do anything, does not stand for anything, and does not meet very often. There are only four members but this “club” has been meeting for almost 25 years. When we started in the mid 80’s we all worked at the same law firm where I was an attorney, Pavan and Kathleen were paralegals and Anna was a secretary. Pavan went to law school shortly thereafter and has been an attorney for about 20 years now. We would get together for dinner every couple of months cooking elaborate dishes for one another. One by one, we left that firm, but we continued to meet regularly. As some of us had kids, the dinners got less and less elaborate, more infrequent, and finally we just met for drinks and appetizers. Sometimes we let others join us but it never really clicked with anyone else. We decided we were an exclusive club and membership was closed. We do allow guests periodically.
The club is coming to my house tonight. Steve is out of town and I cannot really leave Maggie alone with this nurse, so the girls are coming here. We are getting back to our roots, but it still will not be elaborate. There is one rule, no gossiping until all members are present. I hope no one is late. There could be an issue when my sons arrive home for the weekend. We have a strict “no boys” rule, though we have generally made an exception for offspring. In reality, I think the boys will be happy to make themselves scarce for an hour or so. GAH! Mom and her friends? No thanks!
Another group of people are those who disappeared when Maggie was born. I know some of that is just life and time and the changes that come with both. However, for some it was a choice to distance themselves from our situation; that is their loss. However, knowing they are out there makes me treasure even more the many circles of friends that I do have.
I feel very rich indeed.
Showing posts with label Club members. Show all posts
Showing posts with label Club members. Show all posts
Friday, March 13, 2009
Thursday, November 6, 2008
Club Members
As the parent of a disabled child, I am a member of a club no one wants to join. People find themselves in this club generally because of a twist of fate that they did not want or expect and really do not know how to handle. We enter what we think is a dark world, bleary eyed and scared. We learn from each other and eventually figure out how to live our life with the extra responsibility of dealing with the disability. Or, in many cases, including mine, we figure out how to change our lives to accommodate out child’s needs. We learn that this world is different from the one we lived in before. And that a lot of it is much harder. Then we learn a little secret. There are parts of it that are much much better. One of those good parts is the people you meet.
Before Maggie was born, I was a successful attorney working full time and, with my husband raising my two little boys. Life was busy, but great. When Maggie was born, I suddenly found myself in a multi-faceted world of nurses, doctors and therapists. It was as though this world was parallel to the one I had been living in. There are hundreds of dedicated individuals whose jobs are to give my daughter and other children the best possible chance at life. And they are very good at it. Each of these groups, doctors, nurses, therapists, teachers, bus drivers, teachers’ aides, the staff in each doctor’s office, the hospital technicians and everybody else has my complete respect and gratitude. Each group will be recognized here at some point.
But today it is about the other parents of disabled kids.
Every baby presents challenges to new and inexperienced mothers. When you have a typical baby, there are people, and especially women, you can turn to for support, guidance and help. There is a natural support system, your mother, sister, or neighbor, anyone who has had a child before. When you have a disabled child, those natural supports just do not work the same way. Those people can still give you emotional support, but unless they have dealt with the feeding tubes and oxygen tanks, there are things they cannot help you with and you need to find someone who has done it. The question of when to call the doctor takes on a completely different import with a medically fragile child. Finding other parents who had “been there, done that” was life saving for me. And probably for Maggie too.
When I slowly emerged into this new world, Maggie was about six months old. Those first few months were bleak. Maggie didn’t leave the hospital for three months and when she finally did, her care was so overwhelming that I did not see the light of day. I still had the boys to deal with, but it was immediately clear that the career was on hold. Therapists started coming to the house and encouraged me to connect with other parents. When I finally did, I met a wonderful bunch of people who helped me through many a crisis.
Many of my closest friends today are the parents I met when Maggie was a baby. We have been through the mill together. Some of them I don’t see very often because over the years life pulls us in different directions. Some have lost their children, which is another sad reality of this world. Nevertheless, the bond is there, no matter the circumstances.
Today I had the opportunity to have a brief visit with one of those moms. I have not seen her in probably 8 years, and we just reconnected through facebook. We were supposed to have a quick cup of tea before Maggie’s appointment, but we spent our short time together traipsing back to the van to retrieve the suction machine that had dropped off the back of Maggie’s wheelchair in transit. She didn’t mind.
The years melted away. I could answer her questions about caring for Maggie with complete honesty. I didn’t have to sugarcoat anything. She understood. So many years, and so many things have happened to both of us but there we were, right back where we started.
I am grateful to her and to the other moms and dads who helped me get to this place with Maggie. I could not have done it without them.
In addition, I am looking forward to having that cup of tea.
Before Maggie was born, I was a successful attorney working full time and, with my husband raising my two little boys. Life was busy, but great. When Maggie was born, I suddenly found myself in a multi-faceted world of nurses, doctors and therapists. It was as though this world was parallel to the one I had been living in. There are hundreds of dedicated individuals whose jobs are to give my daughter and other children the best possible chance at life. And they are very good at it. Each of these groups, doctors, nurses, therapists, teachers, bus drivers, teachers’ aides, the staff in each doctor’s office, the hospital technicians and everybody else has my complete respect and gratitude. Each group will be recognized here at some point.
But today it is about the other parents of disabled kids.
Every baby presents challenges to new and inexperienced mothers. When you have a typical baby, there are people, and especially women, you can turn to for support, guidance and help. There is a natural support system, your mother, sister, or neighbor, anyone who has had a child before. When you have a disabled child, those natural supports just do not work the same way. Those people can still give you emotional support, but unless they have dealt with the feeding tubes and oxygen tanks, there are things they cannot help you with and you need to find someone who has done it. The question of when to call the doctor takes on a completely different import with a medically fragile child. Finding other parents who had “been there, done that” was life saving for me. And probably for Maggie too.
When I slowly emerged into this new world, Maggie was about six months old. Those first few months were bleak. Maggie didn’t leave the hospital for three months and when she finally did, her care was so overwhelming that I did not see the light of day. I still had the boys to deal with, but it was immediately clear that the career was on hold. Therapists started coming to the house and encouraged me to connect with other parents. When I finally did, I met a wonderful bunch of people who helped me through many a crisis.
Many of my closest friends today are the parents I met when Maggie was a baby. We have been through the mill together. Some of them I don’t see very often because over the years life pulls us in different directions. Some have lost their children, which is another sad reality of this world. Nevertheless, the bond is there, no matter the circumstances.
Today I had the opportunity to have a brief visit with one of those moms. I have not seen her in probably 8 years, and we just reconnected through facebook. We were supposed to have a quick cup of tea before Maggie’s appointment, but we spent our short time together traipsing back to the van to retrieve the suction machine that had dropped off the back of Maggie’s wheelchair in transit. She didn’t mind.
The years melted away. I could answer her questions about caring for Maggie with complete honesty. I didn’t have to sugarcoat anything. She understood. So many years, and so many things have happened to both of us but there we were, right back where we started.
I am grateful to her and to the other moms and dads who helped me get to this place with Maggie. I could not have done it without them.
In addition, I am looking forward to having that cup of tea.
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