Wednesday, May 4, 2011

The Love of My Life - by a Mom

Just in time for Mother's Day, "... and several butcher's aprons," happily and proudly presents a guest blogger with a very special piece about a great relationship between a mom and a daughter. If you're a regular reader you may recall a previous post, some time ago, from this very same author - http://nycityman.blogspot.com/2010/10/weve-got-special-treat-for-you-today.html. Please comment, and give her plenty of encouragement to continue sharing her thoughts with us, and to possibly even begin her own blog. As nycityman is not now and can never become a mother (Joan River's film, "Rabbit Test" aside) I imagine her point of view on such relationships might be just a tad more valid than mine. I'm going to go watch MSNBC now so I can get angry about something or other for my next political posting - please enjoy.

"The talent for being happy is appreciating and liking what you have, instead of what you don't have."
- Woody Allen

Some people seem to float through life, having everything fall into place effortlessly. They have good jobs, they find love, they have good health, they take vacations, they go to Broadway plays; life is good.
For others...not so much.
For my lovely daughter, in particular, life is much more of a struggle - she is quite literally, in constant pain. When she was in Elementary school, she got a small fracture in her foot, which turned into a rare chronic pain condition that required a year of painful physical therapy, and months on crutches and various orthopedic boots, to fix. She had 4 recurrences of that. In elementary school she was teased and accused of faking it (why anyone would want to do that never made sense to either of us). In Middle School her 2 close friends dropped her when she couldn't keep up with them.
Then it got worse. She developed another (incurable and mysterious) chronic pain & fatigue condition in High School, while attempting to fulfill the gym requirement. Since this condition was not localized - she has pain in almost every part of her body, every day - she could not continue going to school.
Fortunately, the excellent Board of Education in New York City (thank you tax payers!) has a Home Schooling program for students in need, so she has continued her studies at home with the help of excellent, patient, understanding instructors. But she is now socially isolated, except for me. Needless to say, this has an emotional toll. This is an invisible condition - you can't tell there's anything wrong with her from her appearance, so she faces skepticism as well as feeling constantly ill. It is natural for people who are in constant pain to contemplate suicide, even without the side effects of their medications, so that is a concern.
Before this, my daughter was (I say with all modesty) a star with great potential. She was accepted into the best schools in New York. She is very intelligent, has already created a well travelled web site and helped write a children's book. She is pretty, has enormous empathy and was all set to get a Ph.D. in Psychology. Now we face an uncertain future.
As her Mom, I've had my own set of issues, dealing with schools, therapists, doctors and my own guilt. I've witnessed my daughter being questioned (behind closed doors) about whether I abused her, I've worried that doctors think we're shopping around for pain meds as we continually search for treatment that will make her life more manageable (the doctors and specialists have all been very supportive). Moms are supposed to keep their kids healthy, and fix them when they're not. Should I have enforced better nutrition? Should I have protected her more against possible injuries? If I'd made some different decisions, could she have been well enough to continue in school? If I were a 'Tiger Mom', would she be healthier? Tip - thinking these types of things is not productive and you have to talk yourself out of them.
OK - so are you ready for the good news? Here it is. My daughter and I have always been very close. That has not changed, despite the pressures her health has posed. She and I both manage to stay upbeat (for the most part). Now, don't get me wrong, we're not those heroic types you see who are nauseatingly cheerful. No, we both have a very dark sense of humor now. But she has (nerdy) pursuits that she enjoys (thank you internet!) and we can entertain ourselves. Yes, it is possible for a rapidly aging woman and a teen to have a close, loving relationship. I'd rather spend time with my daughter than anyone else I know (and vice versa). I've managed to live with her for over 18 years - something I never thought I could accomplish with anyone!

So those of us who have misfortune thrown at us (what is it, bad luck? lack of self esteem? taking things too casually?) can deflect it. Humans can face what they might consider the worst thing that can happen - and they survive. That's not to say it doesn't change us. And I'm not so sure it makes us stronger either - we all have reserves to draw on - my daughter and I would have been very happy to never have to be this 'strong'. You adapt and do what you need to do. At all cost, don't allow yourself to think of how things could or should have been. Whenever you start thinking of some reality that's different from what you're living through - make sure you imagine an even uglier one. I call it the 'On the Other Hand...' approach. Having challenges and a purpose can be more satisfying than having an uneventful, aimless life (repeat that over and over if you have to). At least my daughter and I share a common goal - for her to have better health (and maybe soon, a boyfriend).
For those people who seem to have it all, well, sometimes looks are deceiving (it's OK to think there's some hidden turmoil below those perfect public faces). It's the human condition to feel pain. For some of her friends, losing a girl friend or boy friend brings a different sort of pain that can feel more acute than her loneliness, aching body parts and migraines (and stomach issues, hives,...oh, never mind).
It's not relevant really if other people have it better or worse than you (or if you're not alone in your predicament). There will always be those who are richer, better looking or more fortunate - or - a lot less fortunate. Happiness comes from human connections and doing things you enjoy.
I have no specific hopes or dreams for my sweet daughter. My expectations for us both are just to try to enjoy life as much as we can, and treasure those days when she's well enough to go out and sit and watch a movie in a theatre, instead of on our couch. I hope she will 'get a life' someday soon, but life comes with all kinds of challenges. We just have to make do.

btw - May 12 is Fibromyalgia Day. If any of you wish to support efforts to battle Chronic Fatigue, Arthritis, RSD or other pain conditions, please contact those excellent organizations that help.


  1. I wish your daughter continued progress and improved health each and every day. The heartache and stress of having a sick child is immeasurable at times, I am sure.
    It is wonderful you two have a close and loving relationship. There is help out there in the medical community as well as support and therapeutic groups so you and your daughter do not have to feel so isolated and alone. Wishing you a happy, wonderful Mother's Day.

  2. I am very lucky to know this "guest blogger" personally. Not only can I say unequivocally that she's a terrific mom in every way shape and form, from her wicked sense of humor to her dedication to finding a cure for her daughter, but that THE DAUGHTER is fabulous, having inherited so many gifts from a mother who never stops loving.

    They are a great duo. What a terrific mother's day tribute. Thanks for making my day.


  3. I know this guest blogger as well. She's an amazing person, and her daughter is just as remarkable. This was a great piece of writing that really made me. think. Thank you. Happy Mother's day everyone!

  4. Hi I was directed to your blog by Carlos Almonte. I'm very proud of your daughter. I too struggle with Fibromyalgia and definitely know all the symptoms that come with it. Aside from the pain, as I'm sure you know, comes all the cognitive, vertigo, memory, anxiety struggles that people never understand. Not to mention dealing with doctors who don't understand and all the meds that may or may not work.

    I know what it's like to want to know others with the condition, to prove you're not crazy. I'm very lucky, like your daughter, to have people who love me support me as they do. And there are wonderful men out there who are going to love your daughter more than the air they breathe. My husband is an angel of a man.

    If ever I can be a suport to your daughter, just having someone to talk to or relate to, feel free to contact me. melofirebee@yahoo.com. Sincerely Melissa

  5. Aww... Thanks Mom :)