Fish is a Girl Scout Camp for the next two weeks. This is my first email to her. Yes, EMAIL! My how times have changed. The camp offers this service where you buy tokens and can send email messages to your camper. It is a one way service, so I wait by the mailbox for her letters detailing her adventures.
Dear Fish,
I hope you are having a great time. I’m betting even you got to sleep later than I did this morning.
My loyal sentry
Dory started whining at 6am. I sat up, one eye open and realized she was losing a staring match with Winnie. I told them both to knock it off and tried to get back to sleep. Dory would have none of that, so I got up and let her out. I stumbled back to bed and once again tried to get back to sleep. Within a few minutes, Dory ended up on the front porch barking her head off. It wasn’t a bark I’d heard before, she didn’t sound hurt, but she sounded angry. So I went BACK downstairs to check on her. I didn’t see anything unusual, and just wanted her to stop barking, so I made her come in and come back upstairs with me. I did manage to get back to sleep but then the cat had the nerve to move and Dory started whining again. By then it was 7, so I just got up. I went downstairs, let Dory out and started my tea. Almost immediately, Dory started barking again. The next two hours were a back and forth of me letting Dory out and her barking at something towards the driveway and me letting her back in again and so on and so on. I kept thinking whatever was in the woods would move on.
On one of my trips to scold the dog, I looked out the door at the end of the hall and saw something in the driveway. My first thought was a turtle, but if it was a turtle it was one honkin’ turtle!
The serious threat to my security
I put on my flip flops and went outside to investigate leaving Dory in the house. No, it wasn’t a turtle, it wasn’t even alive. It was the back to Mim’s booster seat!!! I brought it inside and showed it to her, then sent her back outside and she hasn’t made a peep since!
I hope you are having a great time at camp. We miss you!
I was probably about 9 or 10 years old when I went to Girl Scout Camp for the first time. I went to Camp Tweedale for a program called All Sports of Things. We swam, we canoed, we learned to lash sticks together to build structures. We went on an overnight tent camping trip off site and then hiked to the Herr’s potato chip factory for a tour. Given my age, it can’t have been a long hike, but it was a gray overcast day with a light rain, and man it seemed like it took 4 EVAH!! That said, you’ve never had a potato chip until you’ve had one fresh from the frier. Oh my mouth still waters from the memory.
I remember being homesick only one night in my four year Girl Scout Camp career. My favorite counselor was Bear. It was her night off and I desperately didn’t want her to leave, a melt down ensued but by morning, I was over it.
As a suburban kid who’s mother hated bugs, camp was my first real exposure to the outdoors especially sleeping outside. We were in canvas tents with wood platform floors and the thunder that was usually muffled by insulation and wallboard was some loud let me tell you!
For 3 years, I went to Camp Tohikanee (Tohi for short) for their Summer Barn Theater program (we really performed in an awesome old barn). The first year I was sick and got there late, so I was part of the Lollypop Guild in the Wizzard of Oz. The second year, we performed the Sound of Music and I was Max, the Von Trapp family’s agent. My last year, I was cast as Fagan in Oliver. I got sick while at camp, but didn’t tell anyone until I couldn’t hide it anymore. I knew I had a fever that kept breaking and rising, but I was so excited to have a major part, I didn’t want to give it up. Eventually I was ordered to the infirmary and nursed back to health by Suki, our wonderful camp nurse. She made me well (enough) in time for the big performance.
To me Girl Scout Camp conjures memories of singing, laughter, friendships, bug bites, polar bear swims, campfires and incredible opportunities for personal development and growth. This trip down memory lane was inspired by my present. My daughter is attending Girl Scout Camp for the second year. This year, she’s attending for two weeks in a program called “Camp Swap”, the first week will be spent rock climbing and the second will be spent horseback riding. She is going with a friend and when I left her yesterday she was a bundle of excited and nervous energy. I know she’ll have a good time and I can’t wait to hear about all of her adventures and the memories she’ll cherish for years to come.
Whew! I’ve missed this place! I can’t believe it has been more than a month since I’ve written here. Worse, other than cursory emails, I really haven’t written for the last month. UGH!! I’m feeling constipated with words.
This time of year is always crazy. Since my last entry, we’ve had a boy’s birthday, a man’s birthday, the End of The Year Ceremony for the Girl Scouts, lots of Karate, a school, and two IEP meetings and a bunch of other year-end activities.
This month has been extra nuts as my mother has some medical issues and I am trying to help from an hour an a half away. Yes, I am an exhausted member of the sandwich generation, those of us caring for aging parents and growing children. Yee Haw!!
I have heaps of things I want to share with you. I’m optimistic I’ll regain now that summer vacation is in full swing. I can’t claim 2 hours a day like Wendy, (her kids are older than mine), but I’d be happy with a few hours a week.
I checked the calendar this morning, and we only have one week during the summer where nothing is scheduled. My son has a second solo week while my daughter is at Girl Scout camp. Other than that, we have something all or part of every week.
It’s not as bad as it sounds, we’re not booked solid, just booked steady. I’m actually kind of excited, the kids have lot’s of cool activities lined up. My son has a bike camp, both kids are going to Lego camp, my daughter the, the aforementioned Girl Scout Camp, and we are traveling to Pennsylvania for our second visit to a camp for families affected by albinism. We’ll keep going to karate and skateboarding and spend some time at the lake too.
I suspect the days Will crawl but the summer will FLY!
I promise I’ll be back soon, but until then, here’s a photo summary of where I’ve been for the last month.
Today I am 43. Birthdays often cause me to take stock and I have to say all things considered, life is pretty damn good these days.
I have an awesome husband (but don’t mention it because he hates compliments), two beautiful children and scads of friends and family whom I rely on to stay sane.
My daughter wished me Happy thirty-second birthday this morning. I laughed but told her, I don’t mind aging. I’m happy with progress and I can honestly say while there are specific experiences I wouldn’t mind reliving, I have no desire to go back to any certain time in my life.
I read a blog post recently where the blogger said that people who say they have no regrets are full of sh*t. Well then I guess I’m full of it because I have no regrets. Regrets to me are big picture things that I truly had control over. I’m glad I went to college where I did, I’m glad I’ve chosen the careers I did. I’m glad I married the man I did and that we had two kids. I’m even glad we moved to New Hampshire. The big choices have all worked out well for me. Yes there have been (and continue to be struggles), and I do wish some things had turned out differently. But, to call those things regrets is making big stuff out of small stuff.
So, what’s next? Writing. I have a number of stories in various stages of draft. Consciously I know that the real work can’t begin until I get the story out of my head and into a setting (digital or analog) where I can refine it. If I could just get out of my own damn way, I would have something to edit in no time.
It is the getting out of my own way that I struggle with. I have a habit of planning ahead. I am always looking forward trying to do things as efficiently as possible so as to be prepared and to minimize effort. While there are situations where this is a handy skill set, often, it in my attempt to anticipate the future, I borrow trouble. I try to figure out what all the possible hurdles could be and I get overwhelmed. Once I am overwhelmed with all the ways I could fail, it becomes clear to me that I am wasting my time and I walk away. I have to keep reminding myself that with writing, it is the means that justify the end. Once I get the “sloppy copy” out, only then can I refine it and turn it into something viable. I have to turn off my planning instinct and just roll with it. In other words just write!
Also on the agenda is continuing my quest for weight loss and improved health. I’ve mad a good start and am thrilled with the results. There is nothing like the feeling you get when you put on a pair of pants that were too tight last summer only to find out they are just right or even a smidge loose this summer. Now I just need to keep it up. Thus far, I’m not finding it quite as hard as I expected and any challenges are tempered by the successes.
Those are my big challenges for the foreseeable future. If only it was that easy that I should focus only on those to things, I’d be svelte and published in no time! Back in the real world, I am married with aging parents and growing children. Relationships must be nurtured, bills must be paid, and schedules must be managed. I say that with no tone of martyrdom or malice. Like I said at the top, I’m happy with the choices I’ve made.
Onward towards 44!
There are 3 birthdays in 4 days in our local extended family. Last night 17 of us went to a Japanese steak house to celebrate. I opted for sushi!
Fish has a full given name (no, I didn’t actually name my child Fish), but she also has a host of nick names. When She was little I used to call her Mrs. Tinkabinka or Tink for short. Her Dad calls her Fisharoo or Rooafish.
Recently my friend tagged Fish with the name Trixie, which I love, but Fish quickly put the kibosh on that. Lately, I’ve taken to calling her Squishy Fish or Squishy for short. I love that she signed her mother’s day card to me that way 🙂
Fish is 10. Oops, she’s 11 and she’s really starting to express her individuality more consistently. She likes shrimp, will eat a sloppy joe if it is put in front of her and her lunches are eclectic selections from the food pyramid. I no longer purchase clothes without her present. Typically if I like it, she does not. She’s been asking for contacts for a while. I’ve been stalling.
Oh, I have my reasons and they are good ones. She looks so cute in her glasses, the glasses were working, she has bifocals with transition lenses, so it is really 3 pairs in one. Distance vision, reading glasses and sun glasses. Still, getting contacts that fit correctly and corrected my vision, changed my life in my mid 20’s. How could I deny her? Why should she have to wait?
My biggest concern was responsibility. Contact lenses require care and attention or there is risk of serious infection even permanent damage to her eyes. Then there is the issue of tearing. She has astigmatism like me, so contacts weren’t going to be cheap. I didn’t want to have to deal with replacing lenses multiple times per year. Still, she has demonstrated responsibility time and time again, so we asked her pediatric ophthalmologist if she thought Fish was ready for contacts. Dr. M. whole-heartedly gave her approval.
With contacts, the correction is closer to the eye, for with someone with nystagmus (an uncontrolled motion of the eyes) the weight of the lens slows the nystagmus, thus making it easier for the brain to process images and lessoning eye fatigue. When you wear contacts, you also regain your peripheral vision and that in itself is reason to wear contacts for a child who is learning to skateboard and INSISTS on hurling herself down the mountain on skis at top speeds. Her dad was on board, so th appointment was made.
20+ years ago when I was fitted for contacts, it was at a teaching hospital in Boston and it seemed to take forever. There was the appointment to measure my eyes, then the lenses had to be ordered and that took 2-3 weeks because they had to be made. Then there was the return visit for the initial fitting. Then the trial period while my eyes got used to them. I had spend two weeks adding a little more time each day until I could wear them for 8 hours.
Yeah, things have changed. The appointment to fit her was 15 minutes max and I didn’t even feel rushed, it just was that easy. She was fitted for 30 day lenses. That means she opens a new pair every 30 days, thus addressing my concerns about ripping. She was advised to wear hers 2 hours longer each successive day and could be wearing them up to 12 hours in as little as six days.
After the fitting, Fish met with a contact lens technician for training on caring for the lenses and she learned how to put them in and take them out of herself.
The contacts solved the distance vision issue, now we had to replace the other two pairs of glasses. Off to Target, for sunglasses and reading glasses.
If I’m being honest, the reason I dragged my feet was that to me, she needed to be able to put the lenses in by herself and that was a giant step forward in responsibility and that meant she was growing up and . . . Oh! I’m not ready for that.
Still, I have to be. Contacts will help her see better and how can I stand in the way of that? The verdict so far? She loves them and she’s doing a wonderful job taking care of them. This morning, she even put both of them in all by herself on the first try.
Mim is going to try karate. He is VERY excited about it. I am excited too as I have heard many a parent of a wiggly little boy say that Karate is an excellent way to get the wiggles out all while teaching other important life skills.
My sister from a different mother has several black belts in karate and at one time ran a dojo with her (now ex) husband. I emailed her a list of the programs in our area and asked her which she’d recommend. There was a very clear winner. Once that was settled, I made an appointment for our initial visit. This program offers two one-on-one sessions and two group classes free so they get a feel for your child and your child gets a feel for the program before you invest in a ghee and make the commitment.
Mim was his normal bouncy self as we waited for a class to end. I completed the necessary paperwork (yep, I know he can get hurt, no, it won’t be your fault). The form also asked what I wanted him to get out of the program. Confidence? Uh no, he’s got that in spades. Physical fitness? Sure, but it is not my primary motivation. Philosophy? Not so much at six and three quarters. Discipline? BINGO!! Self control? Ding Ding Ding! Anything else? FOCUS! Please help me teach this child to focus on the task at hand.
Miss M was his instructor and bless her she was patient. She worked with him for about 25 minutes teaching him horse stance, and a few blocks and kicks. She also discussed the No/No rule (no practicing your Karate moves on your friends at school and no practicing on your sister at home without permission). Lastly, she discussed respect. The last was the hardest for Mim to get his head around. He’s not a mean kid. He’s exuberant and energetic and he tramples through life in an effort to experience everything RIGHT NOW!
The conversation went something like this;
Miss M: “At the dojo, you call me Ma’am and Mr. H Sir, ok?”
Mim: “Yeah”
Miss M: “Yes Ma’am?”
Mim (not looking her in the eye and wiggling): “Okay”
Miss M (gently guiding his attention back to her): “Yes Ma’am”
Mim (finally getting it):“Yes Ma’am.”
I chewed on my lips trying not to laugh. This is classic Mim. Completely oblivious to what you are trying to tell him. This exchange was repeated several times throughout the time we were there.
At the end of his time with Miss M, he was still super excited and really looking forward to coming back. I guess the respect conversation sort of got through, because as we were leaving, I wanted him to say thank you, to Miss M, but instead he said “Yes Ma’am”. She and I both laughed.
You are 11. I ask how did this happen and yet, I know. The minutes turned to days and the days turned to months and BOOM! 11. I joke about keeping you my little girl forever, but the truth is enjoy you more and more as you grow.
You are so many things, responsible, loving, caring, kind, curious, adventurous and shy, (don’t ask me how those last two pair off, but somehow you make it work). You have a wonderful sense of humor and seem to have picked up just a touch of sarcasm. I don’t know where THAT came from.
I swell with pride when you take a chance and succeed and I ache with all my heart when someone hurts your feelings. As we stare down your teenage years, I’m excited and fearful. I’m excited to see what you will do, I am fearful because I know that challenge lies ahead for both of us and there is no way to avoid it. By necessity, we will separate, but it is my hope that ultimately that separation will make our relationship stronger.
In some ways, you posses a self confidence that I envy other times, I wish you’d put yourself out there more. I worry that your need for perfection and utter abhorrence for failure sometimes holds you back from trying new things. Yet, when you try something you work hard to be the best you can be and that is admirable.
We are similar in some ways, but ultimately, we are different people and I work daily to respect that. You may look like me, but you are not me. You are you own wonderful, intelligent, stubborn, emotional, fantastic person.
You’ve made it so easy to be your mom, sometimes I am startled when things get off track. Bear with me as we make our way. I love you Fish and I am so proud of the girl that you are and the young woman you are becoming.
I have albinism. Most people are more familiar with the word albino. Albinism is a genetic condition that causes a lack of pigment in the skin, hair and eyes. I can legitimately say I am not wired according to diagram. The nerve pathways from my eyes to my brain are not the normal 50/50 split like most people, they are more like 80/20 favoring my left eye. This means I only see out of one eye at a time. Due to my lack of pigment, parts of my inner eye didn’t develop correctly, add that to my astigmatism, and photophobia (sensitivity to light) and my vision just isn’t all that great.
My response to all this is yeah, so what? Big deal. Remember, this is my normal. I have always seen this way. I know nothing else. This is also a response developed over many years and after conquering many barriers.
I was raised in a loving supportive home. When the doctor gave my mother the diagnosis, he said I’d be blind and not to expect a lot from me. Fortunately, she ignored him. She encouraged me find my own limits and disregard the limits others placed on me.
It wasn’t always easy. Kids can be so cruel. I looked different and I acted differently. I was teased mercilessly. They called me Snow White, Casper and The Pop ‘N Fresh Doughboy. On the bus in middle school, they would steal my hat and play keep away. When you combine bright sun light streaming in the windows and a small item changing locations quickly, I lost a lot of hats.
In eighth grade, I finally had the opportunity to meet someone else who looked like me. I met Jan, an adult woman with albinism. It was a life changing experience. I realized it wasn’t just me; I was not alone and it was going to get better.
For me, having albinism isn’t a big deal. Others with the condition face greater challenges. Some are ostracized by family, made to feel less-than and incapable. They don’t get the support they need emotionally and in their education to become successful, self-sufficient adults. I know first hand that the work NOAH does to educate parents, professionals and those living with the condition is vital to improving lives today and ensuring that future generations will be raised to be independent and successful.
Like most non-profits, NOAH produces a newsletter, and educational materials that are available in multiple formats and languages. There is also a web site that offers an online forum where people can ask questions or share experiences and receive feedback in real time. NOAH maintains a list of rapid responders around the country who can be in touch with people who are newly diagnosed to provided information and support. Every other year, NOAH hosts a national conference. Last July almost 1000 people descended on our Nation’s Capital to learn about the latest about genetic discoveries and low vision aids as well as share experiences.
This summer, NOAH will hold its 5th annual family camp. This year, camp will be offered in two different locations. Camp is a place where kids with albinism, just get to be kids. Indoor activities are scheduled at peak sun times and swimming takes place in the evenings. There are rock walls paddle boats, zip lines, archery and fishing. Kids bunk with counselors (most of whom have albinism or are directly related to someone who does). Parents have time to connect with other parents and watch their kids thrive. The experience is far more social than education, and yet much is learned in a very short time.
At NOAH Camp the unaffected siblings are the minority & Fish climbs her first 50 foot rock wall, she was so proud of herself
I’m great at doing on behalf of NOAH, I’ll write an article, make a phone call or speak on a panel. The one area I seem to falter is fundraising. I think it is because of my outlook. I don’t think having albinism is a big deal, the people around me know it isn’t a big deal so I’m loathe to ask for money for something that “isn’t a big deal”. Yet if I stop and think about it, it took a lot of work by a lot of people for my perception of albinism to develop to the point where is wasn’t a big deal. My mother knew nothing when I was diagnosed. There was no early intervention. There was no Internet. She asked questions and talked to eye doctors, teachers for the visually impaired and classroom teachers. She watched me an synthesized the information and made decisions. Was she always right? No but she had a pretty high average in my opinion.
Mim and his buddy M yuckin' it up.
Now I am a parent to two children who also have albinism. I can’t imagine what it must have been like for her to negotiate all this with little or no support. I know what is going on and still I bang my head against a wall. NOAH was founded so others wouldn’t have to walk this road alone, so parents could have information at their finger tips. So people with albinism could meet others with the condition sooner rather than later.
We’ve accomplished a lot, but there is more to be done. The condition is genetic so there is not “cure” and there are always new people being diagnosed. There are so many we haven’t reached because of distance and funding.
The fact that having albinism isn’t a big deal is attributable to my mother and NOAH. My mom set me on the right path and NOAH has introduced me to others with similar experiences who continue to educate me and enrich my life to this day.
Our family is hosting a skating party for NOAH this weekend. If you are local, please join us. If you can’t make the event but still want to support the NOAH, visit our fundraising page to make a donation. NOAH is a registered 501(c)3, so your donation is tax deductible.
While I have it good, it is vital that NOAH continues to educate and raise awareness so that others can experience independence and self-fulfilling lives. Your support is much appreciated.
I may complain about some things about living in New Hampshire, but there are many wonderful things about living here too. I love the winter and I love to be outside enjoying the cold weather activities. I’ve decided that people who don’t like snow don’t have the right gear. A good pair of long underwear and waterproof snow pants are crucial to enjoying the brisk temperatures.
My husband was shocked this local church not only allows sledding on their hill, they encourage it. I guess they don’t have many lawyers in their congregation. 🙂
Some of the parents built an awesome jump!
I ❤ this shot.
My mother used to refer to this rosey cheek condition as “Chink Peeks”
Day is done, gone the sun, time for some hot chocolate!
Live Fearless Lee 