Monday, July 17, 2017

This is Getting Out of Hand


Just as I'm processing Miss 15, Zachary's birthday sneaks up on me. His 17th birthday to be exact. What was I thinking having children with birthdays a month apart??? 

Zack has matured so much over this past year, and continuously amazes me with his big heart and sense of humor. 

He's been working 2-4 days a week for the past nine-ish months at his temp position at Windsor Marketing Group, as well as juggling homeschooling, family, friends, and Epoch activities. He acted in Epoch Arts' Mini Production, "Collide," and Haunted House in the Fall, and played Rylen in Unfinished People in June in addition to performing in Arts Response: Responding to Hate with Love and Dinner Show. 


He's had fun with friends...



Done good deeds...


Worn a very attractive hat...


Gotten tattoos...


Gone on adventures...


And worn inappropriate clothing for the weather...which isn't really anything new. 


I've had the pleasure of hearing many good things said about Zachary this past year - about what a detail-oriented employee he is, how kind and compassionate he is, how he always lends a hand when needed, how responsible he is, and so much more. 

Zachary, I love you and am so glad I get to be your mama! You get the best gift ever this year - your family back ON YOUR BIRTHDAY after over two weeks family-free! And that's not all! As an extra added bonus, you also get to help unload a half ton of stinky camp laundry and camp necessities from the van upon our arrival home.  Happy 17!
Love, Mama












Friday, July 14, 2017

Propelled



I thought I might die.

Now, I think that several times a day when my body is completely rebelling against anything and everything I want it to do, but this time, I really thought it might actually be a possibility. 

Probably only a tenth of a mile into the hike, my body questioned my brain's sanity and my spirit's stubbornness. I most likely was more than a bit overzealous in my decision to hike up West Rattlesnake Mountain. It's only a mile from the trailhead to the top - no big deal until I remembered and experienced how labor-intensive crutching up steep hills and giant stair-like projections is. Couple that with intense pain from merely trying to breathe, thanks to costochondritis, and this hike wasn't shaping up quite the way I'd imagined. 

Kathy, one of Camp Calumet's staff that was co-leading the hike, stayed with me, mercifully assuring me that there was no need for her to hike ahead with the others, as I'd suggested. She helped me control my breathing as best I could and reassured me that she was fine going at whatever pace I needed. 

At the trailhead, there had been a pile of rocks, with a sign encouraging hikers to take one and carry it a half mile up the mountain to deposit it in a blue bucket. I took a small rock and stowed it in my bag. As we continued up the trail, I looked out for this halfway point. By the time we reached the place to deposit the stones, I was convinced there was no way I was making it to the top. That half mile seemed like ten miles. My body was screaming, I couldn't catch my breath. Yet I propelled myself on. 


Three years ago I made that hike twice - for the first time as the weekly hike during week 1 at Camp Calumet. The second time on our way to Columbus Day Weekend at Camp Calumet. The second time was much different than the first. I had taken the last dose of my PsA medication in order to undergo testing for neurological symptoms I was experiencing...waiting to find out if it was caused by any of the possibilities I was given at the time - brain tumor or multiple sclerosis among them. I was struggling to get the left side of my body to function. I dragged myself up that mountain, determined to see the beautiful fall foliage view from the top, certain this would be the last time I'd be physically capable of making it up that mountain. 

And so I journeyed on, my arms and legs propelling me closer to the top with each step. I constantly thought about just sitting down, resting, and waiting to join the rest of the group as they descended, yet my body kept going. The moment I realized that the top was in sight filled my heart with gratitude. As I sat - finally - at the top, beautiful views spread out before me, I couldn't speak. The beauty in that moment came not from the sparking lakes down below, but in the kindness and mercy shown to me every step of my way up; in the sight of my crutches leaned up against a rock; in knowing what I had to mentally, emotionally, and physically overcome to get there; and in that my husband was right there by my side, his confidence in me much stronger than my own. 





Thursday, July 13, 2017

Longer Than Expected



Due to an unusually high call volume, you may experience longer than expected wait times

It's the same message every time I call the CT Department of Social Services. It's always a longer than expected wait time. I was prepared to be on hold for upwards of an hour and a half, as past experience suggested. I was not prepared for my time on hold to go nearly forty-five minutes past my expectations. 

During my time on hold I read several chapters of a book, wrote a bit about my adventures at Camp Calumet, read a dozen emails and responded as appropriate, got caught up a bit on Facebook and Instagram, posted a photo to Instagram, chatted for a while with someone who stopped by my campsite, walked to and from the bathroom, took some photos, did some editing of the slideshow I'm putting together for my children, all while trying not to lose my mind listening to the on old "music."

During my time on hold, my husband and eleven year old son got changed into fishing-appropriate attire, got their rods ready, packed up what they needed, went over the fishing rules for the lake, put sunscreen on, walked to the beach, signed out a canoe, rowed out into the lake in search of a good fishing spot, fished for over an hour, rowed back, put the canoe back in its place, signed the canoe back in, and walked back to our campsite. 

I was following up on a call I had made five days prior, at which time I was on hold for a mere forty-eight minutes. That call was to find out why, a couple days short of a month after reviewing the periodic report form of a family I'm helping through the DSS process, the changes to their account had yet to be made and their SNAP (food stamp) balance had not been added to their card. The first time I called, the food stamp balance was three days late. The next time I called, it was over a week overdue and still nothing -despite the 24-48 hour promise made five days before. This was not what I was planning on spending vacation time on, but there are worse places to have to be on hold with DSS than outside in my campsite on a beautiful day. 

Two hours and twelve minutes on hold for a two minute conversation.

Somehow, people are supposed to manage to call between the hours of 8am and 4pm Monday through Friday and spend over two hours on hold if need be, just to make sure they're going to receive the benefits they need to survive....AND work at the same time.  I was the person to make the call on behalf of this family because the "head of household" was working all week. When I started helping this family navigate social services, he signed a document granting me access to his dss account just in case of situations like this. I don't know of any employer who would allow someone to take a 1-3 hour break to call DSS, and cannot figure out how people can manage to keep their benefits when the only opportunity to talk to someone about food, cash, or health benefits falls during normal working hours for many. I'm sure the DSS professionals are doing all they can to answer questions and help people navigate the system, but cuts in funding and the number of DSS workers is to the detriment of all. So those of us who need to plan for "longer than expected." 

Friday, July 7, 2017

High Functioning


When you have a child with high functioning autism and you leave him home alone for seven and a half days for the first time, you wonder and perhaps worry about how he's going to do. When this child is a young adult at age eighteen who has been home alone for three days at a time several times in the past and made it to the point where he remembered both to feed and bathe himself without his mother calling to make sure he managed to do both, you have confidence that he'll be ok. 

But when you are the mother of said child and you have OCD that sometimes takes the form of obsessive compulsive worst case scenario thoughts, you stress out a lot before you leave and do your best not to call every hour of every day to make sure your child is still breathing. 

We left our oldest home alone...alone for 7.5 days and then with his slightly younger brother for nine days. He has a cell phone to take with him when he leaves the house. He has keys to the house, which hopefully he'll remember to take with him when he walks to whatever store in which he's interested in or to which he needs to go. There's a key hidden in case he locks himself out of the house. 

In preparation, I took this child to the grocery store. The food he's chosen to survive on for seventeen days includes: chicken fingers, bread, peanut butter, coco loco bars, oatmeal cream pies, golden delicious apples, cheese, yogurt, cookies, potato chips, and pizza. Oh, and ice cream...a lot of ice cream. I guess it could be worse. He also money to spend and he's within walking distance of two grocery stores, a dozen restaurants, and two Game Stop stores. It's those Game Stops that worry me. If I were an eighteen year old gamer, I'm not sure I'd be able to resist spending my food money on a video game. 

I have made this child a list of things to do daily, as needed, and on specific days...empty the dehumidifier in the basement, bring in the mail, water plants, put the garbage and recycling bins on the curb (and don't forget to put them back when they've been emptied), do laundry, bake bread.  I'm fairly sure he doesn't need the list, but I need him to have the list. And I need him to keep a phone next to his bed when he's sleeping so that if he sleeps in and I call, I don't freak out because he didn't answer the phone.

While going over the list and the you shoulds and such, Alex just smiled, nodded, and humored his high functioning OCD mother.

I'm sure he'll be fine. Me, on the other hand ... 

Wednesday, July 5, 2017

Psalm 23


(midrash)

God, Abba,
My Mentor, my Center,
What more could I need?

Your love and grace enfold me.
You slow my breath
and nourish my soul.
My body and heart broken,
You calm me,
Are a balm to me.
To urge me down Light paths,
Your Spirit guiding,
Your Son's example providing.

Fear will not consume me.
Your peace and protection shield me.
You help me forgive-
No strings attached.
You fill my cup to overflowing with Your grace.

Through tragedy, sorrow and pain,
You bless me with joy and fulfillment
Again and again.
Baptismal covenants
wash comfort over pain
Through this life to everlasting.

Monday, July 3, 2017

Part of Your World


I want to be where the people are...

Some days, my physical and mental limitations overwhelm me. The brain fog caused by autoimmune illness slows thought processes and inhibits making obvious mental connections. Word retrieval malfunctions regularly, which is probably why it took me over a minute to type two sentences. It's frustrating to misunderstand someone because your brain isn't making a connection in needs to, or to be talking with someone and not remember a conversation you had with them, or to ask a question and be told an answer, only to forget the answer moments later.

Luckily my family and friends have a sense of humor about it all. By 9pm I'm reduced to utter gibberish, which my sixteen year old seems to understand. My husband, however, just gives me perplexed looks and tells me I'll do better next time. I'm often heard saying things like, "can you put this in the fridge for me ... you know, the fridge that heats things up?" We have a cupboard in our house that is referred to as "under the phone" because I once answered a child's query as to which cabinet a large bowl belonged in quite confidently with "the one under the phone," This made absolutely no sense, considering there is no cabinet under the phone, and the cabinet in question was actually in a different part of the room, under the counter between the sink and the stove. I also once told my mom that she was out of "cucumbers, but that's not what they're called ... you know...the long orange things... bunnies eat them?" 

There are many days that I long to be where other people are with the ability to think without having to wade through a murky mind to do so.

Legs are required for jumping, dancing ...

It would also be nice to be able to use my legs without forethought. I go to get out of bed and need to first take stock as to whether or not I think my hips are stable, then move on to testing out my knees before committing to standing up unassisted. Actually, I do this just about every time I get up from a seated position, come to think of it. And then I'll be walking along and all of a sudden stumble sideways because a knee or a hip decided to do something a little different. 

My family and friends are used to this, but those who don't know me so well often look at me quizzically. Strangers may think I'm a bit tipsy. I usually just shrug and declare that my leg decided to go somewhere without me. 

What would I pay, to spend a day...

When I was first diagnosed, I'd have given anything just for a day of "normality." However, as much as it would be lovely to be part of the able-bodied, able-minded world for even a day, I now can't help but think life would be rather boring without the laughs we get from my brain malfunctions and adventures in freaking people out when I hike on crutches. I am thankful every day that I can walk and talk and think and laugh, and that gratitude is all that much deeper because I know the true blessing it is to just be alive. So, instead of wasting time wishing my mind and body would do everything I wish, I work with what I have, and am thankful. 



Friday, June 30, 2017

When



When will all people be looked at as fellow human beings instead of black, white, male, female, agender, transgender, gender fluid, Muslim, Christian, Jewish, atheist, Buddhist, gay, straight; fat, thin, rich, middle class, poor ... other ... as "those people"?

When will Christians practice what Jesus lived and taught - that the greatest Commandment is LOVE. Not pick and choose who you love. Not love if they are like you; if they believe what you believe;or if they treat you well ... love everyone.

When will hate be a word rarely used, not wielded without thought: I hate this song; I hate her hair; I hate this jacket; I hate myself; I hate anyone and anything that doesn't make me feel good?

When will people who disagree with our views be seen as someone with a different point of view rather than our enemy?

When will we stop judging others based on religion, skin color, who they choose to marry, worth, gender, wealth, ethnicity, appearance, and myriad other things and accept others differences as a part of life rather than a reason to hate?

When will people realize that love doesn't have anything to do with color, gender, ability, disability, genetics, or anything other than love...and that neither laws nor personal opinions should govern who one is allowed to love...or to marry...or to call family. 

We need a love revolution. We need to respond to hate with love. Always with love.





Wednesday, June 28, 2017

We'll Have Nothing Left



I've been packing for weeks. By the time I get finished packing, we'll have nothing left in our house ... or so it feels! 

Packing two girls for two weeks of resident camp, two boys for one week of resident camp, and two adults for sixteen full days at camp is no small task. The logistics of resident camp for children with food allergies and family camp for someone with multiple autoimmune illnesses, mobility issues, and medication side effects makes the entire process even more interesting.

For me, packing involves lists - lists of things to be packed, things to ask Camp, things to do before we leave, and things to do after we get there. 

These lists included...

To pack:
- food for lunch and dinner for 16 days and breakfast for 8 days
- pots, pans, dishes, utensils, etc.
- medications and supplements
- uv protective sleeves (sun "allergy" side effect of one or more medications)
- mobility devices, compression gloves, knee brace, gloves to wear when hiking on crutches and kayaking
- quarters for the laundromat ... lots of quarters for lots of laundry!!!
And all the usual stuff such as clothing, a tent, bedding, towels, toiletries, insect repellant, sunscreen, flashlights, etc.

To do:
- contact Camp about: donating snacks for gluten-free, food dye-free children; the possibility of storing a medication filled syringe in a refrigerator for a week until I need to self-inject; whether or not we can pick up laundry from our 2-week campers when we pick up our 1-week camper
- refill prescriptions for pain meds and injectable psoriatic arthritis med
- buy food for our oldest child, who is staying home while we're at Camp
- arrange for: pick up of one teen from bus home from Camp; someone to pick up and consume our CSA shares while we're away, Netflix dvd queue to reflect older teens' movie choices for the weeks we're away
- physicals for four children and notarized vaccination exemption forms for two non- or partially vaxed children and one who has been vaccinated but is not immune 
- somehow manage to pay all bills and have money left to eat breakfast at the Conference Center some days and perhaps get a pizza for dinner on rainy days when we can't cook over a fire
- get teens with minimalist wardrobes enough clothes to last through their stays at camp 
- buy over three dozen pairs of socks and two dozen pairs of underwear  because the ones I bought a few months ago have disappeared
- color children's hair (and mine, because Alia wanted me to match her) because somehow they can't have natural colored hair at camp

Needless to say, I've been prepping and packing for Camp for months. 

Most of our children have packed most of their clothing, so if you happen to see us out and about and one or more of my children is wearing pajama bottoms or is completely overdressed for wherever we are, you'll know why. And if you drop by and see the mountain of bins, plastic drawer thingies, suitcases, and bags in our kitchen/dining room, that's just some of the stuff we have to attempt to fit in our van while leaving room for children and parents. 

It's a good thing I enjoy packing (mostly).  And I figure since I've done the bulk of the packing, I'll leave the unpacking up to the rest of my family upon our return home. That's fair, right?!?




Friday, June 23, 2017

Killing Me


I usually don't post about political things, but reading about the proposed healthcare bill that would replace "Obamacare" terrifies me. Should our current healthcare system be replaced by this atrocity, it could kill me. And others. Literally.

The majority of people on Medicaid are disabled, elderly, mentally ill, and children. I've read a lot in the past couple days about any cut in funding putting these people at risk. At risk of what, they don't usually spell out, so I'll do it for you. It puts elderly people, children, mentally ill people, the otherwise uninsured, and disabled people at risk of getting more ill. At risk of dying. 

Should I lose my Medicaid, I would not be able to afford health insurance. It would mean going off of the medications that I take that keep me functional, because I wouldn't be able to afford them. If I go off of these medications, I will no longer be able to walk. My joints would deteriorate to a greater extent, and quickly. It would be difficult for me to get out of bed. My autoimmune liver disease, which is at bay thanks to these medications, would rear its ugly head and could eventually necessitate a liver transplant, which I would also not be able to afford.

Losing Medicaid could kill me, slowly and painfully. 

For those of us who could possibly lose health coverage, the results could be devastating.  We could be refused treatment due to the regulation of which medications we're "allowed" to take or a cap on the cost of medications covered. Or the state could decide that insurance companies are no longer required to provide health insurance to those with pre-existing conditions, as that decision would be left to each state to decide, if I'm understanding correctly. 

I didn't choose to have a particularly aggressive case of psoriatic arthritis, ankylosing spondylitis, autoimmune liver disease, Hashimotos thyroidosis, celiac, OCD ... am I missing any? I planned on going back to work. Instead, I struggle every day to get out of bed and to keep moving, even with treatment. I give back through volunteer work, which would also become impossible should I go off of treatment for my illnesses. 

Disabled people do not choose to be disabled, nor do people with Alzheimer's or dementia or clinical depression or bipolar disorder choose how their brains work, nor do those children born into poverty choose to not be able to afford health care. Many people are one health crisis away from needing assistance themselves. 

The solution to this health care situation will not come about through the current administration's plans. It will, in fact, be made worse for the most vulnerable among us. 


Sunday, June 18, 2017

How Old?

Sometimes birthdays catch me off guard.

Yes, I knew Haley's birthday was coming up - that it's today. We got her a gift and planned a (albeit joint birthday / graduation / Father's Day) celebration. What I failed to do was wrap my brain around the fact that Haley is fifteen today. 15. One year away from sixteen. How the heck did that happen? How is my third child that old???

Looking back over the past year, I came to the realization that most of the highlights of Haley's year have involved performing in some way shape or form...

In Androcles and the Lion at Camp Calumet Drama Camp:


In Epoch Arts' Mini Production, Collide, in which she got to create her own character and write her own part:


In Haunted House (at Epoch Arts, of course!):


And made leaps and bounds in creating SFX make-up gore:


 In Epoch Arts' Arts Response: Responding to Hate with Love in which she sang "Losing" by Tenth Avenue North and in Dinner Show, in which she sang "Light in the Hallway" by Pentatonix and did a Jabberwocky skit.


She did have fun with friends at Lake Compounce, Mystic Aquarium (what an adventure the first time we attempted to go!), and other places: 


And most recently she played Finn, Seeker of the Snagglelump, Tooter of the Trumpet, Tamer of Deegan, Clanger of the Cymbals...in Epoch Arts' Mainstage Production, Unfinished People:


Haley amazes me every day with her ability to overcome joint pain and exhaustion in order to accomplish all that she does. Her bold creative spirit inspire me every day to overcome my own insecurities, step out of my comfort zone, and do crazy things like use the sewing machine. One of the things that I admire about her most is that she is fearless in her endeavors and jumps in with both feet - whether it's performing, crafting, special effects make-up, or cooking amazing things from scratch, without a recipe, and with whatever happens to be in the fridge at the time.

Happy 15th Birthday, Haley!!! May you always remember that the Snagglelump is always with you and to stay connected to something bigger. I love you!