Tuesday, November 8, 2016

And on the eve of an election, a semicolon...

It's  four a.m. and I can't sleep. Like a new mother, I'm alerting to every sigh and whimper coming from the room of our daughters, now twelve and almost ten. I keep wandering in, covering them, kissing them or stroking back their hair.

In the next twenty-four hours our lives will change. By the following morning, my daughters will either be living in a nation honoring it's first female president or in a nation that chose to lead it a man whose history of objectifying women is fact and common knowledge. We are on the cusp of history in the making ... and I find it painful to leave their room.

A semicolon is a pause in the action, a breath taken in to continue speaking ... tonight I'm stuck in that semicolon, caught between The United States Before the Election of 2016 and The United States After the Election of 2016. I'm struggling to exhale.

This is not a peaceful pause. This place I, we, are stuck should be thrilling and heady for those who choose to vote for Hillary Clinton. Yet for some the alternative scares us so deeply to our cores that the exuberance and joy is tarnished by anxiety and pain. Women and men who have been violated in their past have had that dragged out of their psyches and broken open, not by choice but by a presidential election!

Many are struggling to stay positive, thankful for the chance to connect with others for support and solidarity (I'm looking at you, Pantsuit Nation, currently at 2.4 MILLION members). Many other voters are trying to build back up the boundaries ripped down by this election year.

 I'm both terrified and eager to let go of the Before and see what happens on the other side of this historical semicolon. We have weeks worth of news and debate footage, articles and analysis that could take months to pour over.  It's very rare in life that one gets a chance to record a Before and After that has taken hold of our nation the way this election has.

In the early hours before the polls open, I chose to record the part of this election that mattered most to me. My daughters may never understand why I took pictures of their soft, sleeping faces tonight but staring in the face of such a life-altering After, I realized I needed to record my Before. And somehow find a way to exhale.

Sunday, September 13, 2015

Poor Maddie. Another loss.

Last summer Maddie adopted a pet slug, Sluggy. When Sluggy passed away (aka, The End of the World), Maddie adopted Fluffy.

Fluffy was a milkweed seed who came to live with us in a jar. Maddie said she loves him because "because he's a pet that can't die."

Guess what? After a year or so, milkweed seeds begin to fall apart and the seed separates from the fluff ... even if they are carefully kept safe in a jar.

That's right. Tonight Fluffy died.

So. Much. Sobbing. With the repeated phrase, "He wasn't supposed to DIE!"

I showed her Fluffy's seed and said we could plant it where we had found it. If it didn't grow into a new plant, it would nourish the others around it.  We went outside and blew Fluffy's fluff away into the wind. [Loud sobbing]

And that was our Sunday night, y'all. Sigh.

Tuesday, June 23, 2015

Giving Thanks. 2015.

Goals.

I talk quite a bit about goals in this blog. My daughters' school focuses on having GRIT and perseverance to meet your goals. My Jamberry Team Leader offers us training, leadership insights and encourages us to impress the importance of writing down your goals and making them real. But my first adult Goal Epiphany was thanks to Sensei Jimmy Pedro at Pedro's Judo Club in Wakefield, MA. You've read about this in the past here, but hear me out...

Three years ago, my then five year old was begging for martial arts classes. We had tried karate over a summer and something was missing. As my father (and I briefly) had trained  in judo, I knew the differences between the sports. By watching her on the karate mat I saw immediately that what she needed she would find in judo.

But there was a catch. A big, freakin, chronically-ill-mom-walking-with-a-cane catch...

Pedro's Judo is up thirty-two stairs. THIRTY TWO. Straight up, big warehouse style steps. Dang. We'd been to a children's party there that summer and I knew how precisely  how hard  it was for me to get up there and how lightheaded I was when it came time to drive home.

I sat in the small corner office with head instructor, Sensei Riley McIlwain and watched him do a mini teaching session with my little maniac. Oh man, she glowed. She was elated, ecstatic, like I've never seen over an activity. She was HAPPY.

And I felt fear. Deep, cold gut chilling momma-fear that I would let her down.

In that moment, before I ever heard a word about the importance of goal setting, something crystallized in my mind: I would get Maddie to this dojo twice a week, every week, for as long as she wants to train. Period.

In the years following I've had the honor of hearing Sensei Jimmy Pedro and later, Senseis Kayla Harrison and Travis Stevens speak multiple times on the power of goal setting, goal directed guided imagery and their direct impact on success. Tonight, about three years later, I listened as they spoke again.

The past three years have been rough physically - a few times I've sat in the parking lot after class with my head on the steering wheel, crying while I summoned the grit to drive home safely through a blur of fatigue and pain but other nights...

Other nights I open the windows and sing along with the radio at the top of my lungs as the tears pour down my face. I sing to give voice to the pain and anger, the power and grief and the huge, glorious, hard earned pride that stream from me as I make that short drive.

In three years, my daughters have never missed a single judo class because of my body. Twice, then three times, now four times a week, I stand at the bottom of those steps and take a deep breath. When I get up to the dojo, friends and acquaintances ask me how I'm doing and a select few there truly understand how much I mean when I say, "I made it up the steps; it's a good day."

I never knew what Pedro's would do for me, and it happened before my daughter or I ever stepped foot on the mat. For this and so much more, I am humbly, deeply grateful.

Doumo arigatou gozaimashita, Senseis Pedro and McIlwain. See you tomorrow.

Edited to add...
It dawned on me this morning that this goal has accomplished one more thing: through meeting my goal every week, every set of stairs, I model for my daughters an example of a strong, committed, powerful woman. And that's all I've ever wanted to achieve.

Original posts ...
9/20/12 A Goal Set is a Goal Met

11/22/2012 A Goal Set: Thanksgiving Update

11/27/2014 A Heart Full of Joy

Thursday, November 27, 2014

A Heart Full of Joy


Some years are more challenging than others - no one will argue with that. Looking back, 2014 was a particularly rough year for my family and for many families dear to us. 

But! I am thankful that it was also an amazing year :) My daughters are enjoying happy, exciting years at school, both are surpassing challenging health issues and both had the amazing experience of medalling at the U.S. Judo Junior Open. Paul has found satisfaction at his new job . And thanks to the encouragement of friends and family, I found myself owning a new business.

If you've read my blog, you know how I've struggled with the invisibility, the isolation of chronic illness. I eventually lost the struggle with my body and had to retire from the judo mat, heartbroken and angry at my body for it's limitations. Until one is benched by injury, pain, illness or mobility issues, one doesn't realize how much self worth is gained from DOING, from simply being productive. This spring I took a leap and became an Independent Jamberry Consultant. I figured I'd have some fun selling a product I like, maybe contribute a little to my family coffers ... I never expected it to become so much more.

What began as a lark has become a source of pride, challenge, friendship and laughter ... just like that, my circle has widened. My favorite thing about this experience has been getting to share the excitement and challenges of my colleagues and team members. So far Jamberry has helped pay for two family vacations and a weekend away for my birthday. For someone who hasn't been part of financially contributing to the home in years, this made my heart swell with joy.

So this year I am thankful for the challenges we weathered together, our family and friends who stood by our side and my new Jamberry family that had help me find myself again.

Wishing you and yours a Happy Thanksgiving and a safe, healthy New Year!





Original posts ...
9/20/12 A Goal Set is a Goal Met

11/22/2012 
A Goal Set: Thanksgiving Update

Updated 6/23/2015 Giving Thanks. 2015.

Monday, August 4, 2014

Extreme Juggling

Madeline,

1) Thank you for telling me the truth about how you got hurt because I really didn't believe the first story.

2) You seem to get hurt jumping on the bed alot. May want to think about that.

3) If you are going to juggle, try something soft. And don't do it while jumping on the bed.

4) Also, if you are going to juggle, please only juggle things that belong to you.

5) Another tip ...  if you are going to juggle,  please choose something that is not GLASS. As opposed to my expensive glass jar of salve (which, thankfully for your head, didn't break). And also don't do it while jumping on the bed.

6) And finally my love, next time tell the truth from the beginning ... because very few people fall onto their bed and hit their head on a small glass jar of salve hard enough to make them cry.

Saturday, September 14, 2013

And now in iBook format! This is my mom. A story about living with Fibromyalgia

Audrey and Maddie reminded me today that I didn't share the book they helped me write about having a parent with fibromyalgia ... I hopped over to my publishing site and lo and behold, they now have an iBook option! I haven't been able to test this version yet but I'm so happy that my girls encouraged me to share this here.

The writing of this book was a healing process for me. As a person who developed fibro in childhood, I never expected my symptoms to change as dramatically as they did in my 30s. I had particular difficulty dealing with being limited on how I could play with my children, losing my spontaneity and swallowing my pride and buying a cane.

For someone with a knee injury or the like, a cane is no big deal. It's a tool, we use it and then we're healed. For a young mother with a chronic illness, however, a cane is more than just a cane. A cane is a neon light saying, Look at me ... something's wrong here! It's a cumbersome something in a hand that really should be holding a child's hand as you cross the street. A cane is YET another thing to forget places. For the chronically ill, a cane is a visual reminder that now you are weaker than you have ever been ... and yes, you may get better. But what if you don't.

As I fumbled with my canes I tried to continue to help out in my childrens' schools and I loved the questions they asked about it. I have such a strong passion for helping children understand Big Things in ways that aren't so big.

This book came about when my eldest was in first grade and simply couldn't understand why I looked fine when I wasn't. Audrey and Maddie needed more than Mom telling them about fibro. They needed a book.

So I wrote one. I wrote this book and tested it out on my children, edited it some and then tested it out on Audrey's first grade class ... who adored it. Years later, some of those kids still come up to me and hug me or smile when they see my cane.

My Maddie is now in first grade herself and interestingly enough has begun pulling out our copy of this and asking me to reread it.

I still have days where I loathe touching that awful stick - no matter how fancy and cool my canes are, they are and will always be cumbersome awkward devices that I forget places. This book reminds me that I took that pain and frustration and even humilation at being dependent on a cumbersome awkward device (that I forget places - which really isn't usually a big deal until you loose your favorite four hours away from home) ... I took all that and I turned it into a gift for my children. Which, when you think about it, is a pretty awesome thing to have a chance to do.

Monday, September 9, 2013

Guest Post! Scarlett's 30 Things About My Child’s Invisible Illness You May Not Know



As I mentioned in my own 30 Things About My Child's Invisible Illness post I am extremely lucky to have supportive friends to help me navigate the jungles of parenting. Sometimes they are simply amazing friends who understand. Other times they have a child like mine ... and a precious few have a daughter a bit older than mine and can lend an ear as I rip my hair out, parenting my growing girl-children.

This lovely guest author is all of the above. I'm so thankful to Scarlett for sharing her perspective on her daughter's invisible illnesses.

Please join me in learning a bit more about how Invisible Illnesses affect children and their families...



30 Things About My Child’s Invisible Illness You May Not Know


1. The illnesses we live with are ... anxiety, learning disabilities, severe anaphylaxis tree nut allergy, asthma

2. We got a diagnosis at the age of … eight. It feels like it was a very, very long time to get to that diagnosis. I remember when I told Missy about her learning disability. In an instant, she looked like the weight of the world had just been lifted off her little shoulders. The Disney Channel had been airing a public service announcement about Shake It Up’s Bella Thorne and how she dealt with dyslexia growing up. Knowing that there was something Missy could do about it, knowing that this was a beginning instead of the end, took so much stress away from her.

3. But we have observed/experienced symptoms since ... she was a toddler. I have always described Missy as going from 0 to 60 in point-two seconds. For so long I would say, she lives constantly “on edge”, a raw nerve. And because of that, she was libel to melt down or freak out, at the drop of a hat. I had no idea at the time that it was the anxiety causing the raw nerves.

4. The biggest adjustment I’ve had to make as a parent is… learning to advocate for my child. We noticed when Missy was in the first grade that she would mix up her letters. She mixed up b’s and d’s, m’s and w’s. It got increasingly harder for her to study and remember her spelling words. It was difficult for her to even copy words that someone else had written. She was transposing numbers. Instead of writing 302, she’d write 320. We spoke to Missy’s teacher who assured us that Missy was a VERY bright girl and that transposing letters and numbers and writing letters backwards was normal up into the third grade. So we waited. I spoke to the second grade teacher because spelling tests were becoming increasingly difficult. And as the learning disability presented itself more fully, the anxiety also began to make itself more evident. I wrote the second grade teacher a note asking about testing Missy for dyslexia. Her response was that we should continue to wait because, as the first grade teacher said, some of these “symptoms” are normal into the third grade. What I didn’t realize was that by me writing that note, she was required by law to get the process of testing underway. There was SO much I didn’t know at the time.

It took a lot of reading and research and talking with people who knew way more than I did for me to understand what my rights were as a parent. We had Missy tested on our own and through the school. I learned to ask for the services and accommodations Missy needed in school. I learned to follow my own heart (and her doctor’s orders) to determine what those services and accommodations should be. I had to learn that while the school personnel are there to make sure my child succeeds (after all, the better she does, the better scores she gives them on standardized tests, and the better they look), *I* am the person who knows Missy best. Therefore, I am in the unique position of knowing better than anyone else how she will do in different situations and what she needs to thrive. And I have equal say in what happens with my child when she is in school.

5. Most people assume … She’s simply misbehaving. Missy likes rules. Rules help keep her calm. Rules help her to know what is expected. Of course, this means that when people break the rules, she feels chaotic. She gets so stressed out and anxious that she can’t handle it. Additionally, she spends all her energy trying to keep it together during the day that by the time she gets out of school, things tend to go haywire and she fights, argues, or has a meltdown. She’s not trying to fight. And she’s actually much better this year than in previous years. Plus, I’ve learned that if she can run around after school and blow off a little steam, the rest of her afternoon goes much more smoothly. But she’s worked so hard to keep it all together during the day that she’s like an over-inflated balloon. One more breath and she bursts. The other moms at parent pickup look at me sometimes like I’m a horrible mother. Like I’m indulging her and like she’s spoiled and misbehaving. Yes, I know what those facial expressions look like. I’ve been guilty of giving them myself. But she’s none of those things. She’s just a ten year old with anxiety who has a mom doing the best she can.

6. The hardest part about mornings is… sticking to a routine. The routine makes the morning go smoothly (the same way it does in any other household). But not being a morning person by nature, Missy would much rather camp out in front of the tv in the morning and wake up slowly rather than getting ready right away and taking any free time that’s left over when all the necessary stuff is done. This push-back from her occasionally renders up late for school (not so late that she’s “tardy”, but late in that the first bell has already rung to let the kids get to their lockers. This is in complete opposition to Missy’s desire to be on time and follow the rules.

7. The hardest part about nights is ... When Missy gets so anxious that she can’t sleep. The knowledge that she needs to get to sleep only makes her more anxious….which makes her unable to sleep. It’s a horrid cycle for her. And as she gets more and more tired, she gets closer and closer to a melt down. And when she does melt, there are hysterics and hyperventilating and self-loathing and statements like “Why can’t I just sleep at night like everyone else?”

8. Gadgets we couldn't live without are ... The iPod & my phone. Without the iPod we wouldn’t have the audiobooks she clings to. Patience is not a Missy virtue. But playing a game on my phone helps her to have something completely innocuous to concentrate on.

9. A daily routine we can’t live without is ... I wouldn’t say that we *can’t* live without it because we can. But, during the school year, on school nights, my husband or I go upstairs with Missy and read to her. Then she reads to us. Then, when she gets into bed, she’s allowed to read by herself with her flashlight on and the room lights off. She gets instrumental music, a fan, and a number of night lights (she hates the dark). Without the music, noise, & lights, she wouldn’t be able to sleep. And the reading helps her settle and clear her mind before going to bed. We start this process at 8:30, which is early for a 10 year old, but she doesn’t end up with lights off until 9:30 and flashlight off at 10. Thankfully she is able to sleep until 7 a.m. which allows her a full night’s sleep.

10. A children’s book or TV show that helps my child cope is ... Harry Potter. I think it helps her feel safe that she knows the stories so well. It’s something she has read, listened to, and watched over and over so she feels comfortable letting herself just dissolve into that world. Plus, good wins.

11. Regarding alternative treatments … We are open to alternative treatments. My husband and I have agreed that we do not want to give Missy traditional pharmaceuticals unless absolutely necessary. So right now, she sees a counselor once a month. That’s her safe place to be able to unload everything that makes her anxious. Plus, her counselor teaches her deep breathing, meditation, and yoga techniques to use when she’s feeling anxious. Aside from that, we use homeopathic stress relief pills that are all natural, made from flower essence. They make Missy feel proactive about keeping on top of her illness. She also uses gum to relax in school; it helps her focus, and she stashes stress balls in her desk, locker, and bag. And when those things aren’t enough, there’s a punching bag in our living room ready to be any stressor that needs a beating. Regular exercise at taekwondo helps to regulate stress and provide a healthy outlet for her restlessness.

12. My child’s illness affects their friendships/social lives in this way ... She’s great at making friends and being a good friend, however, Missy often gets overwhelmed in social situations. When she goes to a Scout meeting, the chaos of the situation overwhelms her to the point where she sometimes has to remove herself from the group and find some solitude and quiet. Unfortunately, that makes her feel left out (even though it was her choice to leave the group, she doesn’t feel it’s a choice because it’s something she needs to do for her sanity.) She also comes across as a goody two shoes and tattle tale because of her need for rules. I can’t imagine that goes over well with her peers.

13. Regarding school and learning ... It took a lot to get Missy the services she needed at school. But once we did, she truly blossomed. That doesn’t mean that things are perfect, she still has a ways to go. She still writes her b’s and d’s backwards and she still spells like a second/third grader. And she still needs help getting the thoughts from her head onto the paper. But we did discover that she is incredibly bright. If she weren’t, we might not have noticed the learning disability as early as we did. But the progress she made over the course of one school year was astounding. Her teacher thinks that she may not need any additional serves by the seventh grade!

14. People would be surprised to know ... how incredibly sensitive she is. One mistake sends her on a self-esteem downward spiral. Comments that other kids brush off, she takes quite literally and often jumps to the worst case scenario. Once, a teacher told her that she needed to learn her times tables or else she’d fall behind. Missy came home crying about how she was going to have to stay back and repeat 4th grade. This was September. 4th grade had JUST started! And already she was concerned that she was going to have to repeat the grade. She didn’t, by the way. And when she does something she knows is wrong, her guilt eats at her. There is nothing like hearing your own child wailing about how horrible a person she is.

15. The hardest thing to accept about our reality has been ... that not everyone will understand, no matter how many times you explain it to them. Some people just don’t get it. Or they don’t want to get it. And that’s just the reality of life.

16. Something I never thought she could do with this illness that she DID do was ... Well, I never thought I’d see my daughter come home with top marks for a writing assignment. It takes her three times as long to do any writing assignment and it takes all of her energy to be able to focus her writing and spelling. And her learning disability makes it such that she has all of these really amazing ideas in her head, but they get lost between her brain and her fingers whenever she tries to put them down on paper. And I never thought she’d read books with hundreds of pages in them. Tell that to the dog-eared copies of the Percy Jackson series that she devours.

17. Public awareness about this illness is ... Crucial. No one thinks about a child having anxiety. Who thinks that an 8, 9, or 10 year old might have anxiety? I certainly didn’t before we got my child’s diagnosis. They are quick to jump to conclusion about behavior and don’t look to see what’s behind the behavior.

18. Something my child wants to do but is unable to do is ... have a slumber party without tears. Whether at our house or someone else’s house, she usually ends up in tears at some point. She gets overtired and over-stimulated and anxious because she’s not sleeping in her own bed with the sounds and sensations that she’s used to.

19. It was really overwhelming to see my child ... earn her first degree black belt in taekwondo. She was terrified for her test. So terrified, in fact, that she pushed her test off for two months because she couldn’t take the pressure. But she worked hard in class and outside of class and after three years of working her tail off, learning, competing…..she passed her test with flying colors. During her belt ceremony, I was actually in tears. She had worked so hard and that belt was a physical representation of that work. It was something she could be so proud of. Now, I wouldn’t care if she was a lousy martial artist. But the fact is that she’s actually a damn good one. Her success gives her a boost in confidence and self-esteem. And that, by itself makes it all worthwhile.

20. An activity my child loves and succeeds at is ... taekwondo. Watching her perform and compete actually gives me chills. And she’s always so proud of herself when she does well. Although being the perfectionist she is, she’s also just as hard on herself when she messes up. But there are far more successes than mess ups. So in the end, it’s all good.

21. If I could wish for one thing for my child to experience ... Complete and utter joy. She’s such a serious child and I wish she could experience one day without worry, without a self-esteem that sinks thanks to one mistake. Or maybe it would be to be able to walk into a bakery and order whatever her stomach and taste buds desire without fear of what nut it contains or what cross contamination might have occurred.

22. My child’s illness has taught me ... to slow down and explain.

23. Want to know a secret? One thing people say that gets under my skin is ... (This goes with #22.) So often, Missy gets anxious because she doesn’t have enough information to make a decision. The more information she has, the less likely she is to panic and get stressed out. For most parents, they tell their kid ‘no’ and that’s all there is to it. One word answers (even if they’re yes) don’t work for Missy. She needs more information. So when people turn around and say, “just tell her no”, it’s so irritating because that doesn’t work for us.

24. But I love it when people ... consider my daughter’s nut allergy when they’re planning an event, snack, etc. People who know where they bought something, who provide me with ingredient labels from packages, they are life savers. They are the people who try to make my life and Missy’s life easier.

25. A phrase/story that my family uses to feel strong and close is... Water off a duck’s back. My daughter loves ducks (some might call it an obsession) so when Missy is feeling particularly sensitive and prickles at everything, I try to remind her to let things roll off like water off a duck’s back.

26. When someone is wondering if their child has an invisible illness I’d like to tell them ... Find out. It’s the first step and learning how to make life better. The more information you have, the easier it is to learn to cope.

27. Something that has surprised me about parenting a child with an invisible illness is ... how horrible a mother I feel like some times. When I lose my temper because my own nerves are shot or because I’ve had such a horrid day/week/month, it’s not just me who suffers. Chances are she, Missy already feels badly about doing whatever it is that drove me nuts. Losing my temper with her only makes her feel worse, which, in turn, makes me feel worse.

28. The nicest thing someone did for me or my child when we were under stress ... One night, Missy had a sleepover at her bff’s house – a horrible anxiety-producing activity that she keeps trying because she desperately wants to have those normal girly experiences. Bff’s mom sat with her, until the wee hours of the morning, with Missy in tears and going back and forth about whether or not she wanted to go home. Together, Bff’s mom and I decided that Missy needed to stay to prove to herself that she could. Bff’s mom (and dad) reassured her over and over that she was safe and that her dad and I were safe and that she was okay to stay. She did make it through the night. Bff’s mom then spent about an hour texting with me to reassure me that Missy was okay and that they love Missy and want to do all they can possibly do to help her feel safe and comfortable at their house because they consider her a part of their family. To have another family care that much about my child and her emotional stability was the most amazing show of friendship. I can never thank her/them enough for that.

29. I’m involved with Invisible Illness Week because ... like with Missy, people can only make good decisions based on the information they have. I want people to understand what it’s like for kids like Missy. They don’t choose to feel the way they do, but it’s often more difficult for a child to handle because they aren’t always able to adequately explain how they feel or why they react the way they do.

30. The fact that you read this list makes me feel .... hopeful. .