Monday, November 10, 2014

Dearest Body


I am writing to you to request that you please stop trying to compete with people more than twice my age.

It would be wonderful if you could get your act together enough for me to go back to walking unassisted, although I do have to say that my canes, crutches, and wheelchair are now fairly stylish thanks to special-ordered canes and decorative duct tape for the rest. But that's beside the point - walking is good. Really. At least some of the time. And not the shuffle around in a Tim Conway Old Man-esque manner. (OK, that reference just made me feel old!)

A medical professional's suggestion of a walker is a little over the top, isn't it? Chasing five or six or a dozen children while shuffling behind a walker would be a sight, I suppose, but not one I'd like to inflict on myself or others.  Especially since I'm imagining that happening with me in a housecoat for some odd reason. I'd much rather be a cane or crutch-waving curmudgeon.

Also, if you could fix my "early warning system," that would be wonderful. If not, I'm not sure what I'll do...Depends.

One last thing- now that we're off Remicade, can you be gentle with our friend the liver? I really don't want to add that overly scary "we need to test you to make sure this med isn't going to kill you" medication to my collection, nor do I want to put an insane amount of prednisone in my body on a daily basis. We don't want to inflict me on others if it comes to that.

Thank you for your time and consideration.

Me


Wednesday, November 5, 2014

Breathe Deeply and Pray


 Sleep circles, taunting my pain-wracked body. All I can do is breathe deeply and pray.

My strong fragile child battles migraine and mood. His mood encourages my anxiety, which is already having a field day due to precarious health and unanswered questions. I breath deeply, coaxing gentle words to the tip of my tongue. I pray for relief for us both.

Reflecting on the day so far, it can't possibly be just past noon. Enough has transpired in one morning to fill the entire day. Words buzz around in my brain as it attempts to get a firm grasp on any of them. An appointment with my rheumatologist produced unexpected news: stopping Remicade, referral to a neurologist, the need for a series of MRIs, possibilities including nerve damage and multiple sclerosis thrown about. Unanswered questions continue to pester me as I breathe deeply to calm my nerves and pray in an attempt to hand my troubles over to God.


Soul soothed after a phone call from a friend, surprise catches me once again. Part one of the MRI I was told would be nearly impossible to get approved is scheduled for three days from now. At 7AM. Forty-five minutes away. Laughter and tears assault me at the same time. How did this happen? Nevermind. I don't care. I'll take it. It's not like I sleep anyway. Breathing deeply to quiet my pounding heart, I utter a prayer of thanks for the diving intervention that was necessary to make this MRI happen this quickly. 

The day isn't done with me yet. Not two hours later, the phone rings again and the second of three needed MRIs is scheduled. I breathe in peace and breathe out stress as a prayer of thanksgiving once again crosses my lips.


A bit later, a young man of perhaps eleven or twelve asks me about my crutches, not remembering seeing me use them before. His words of comfort and support touch my heart and buoy my spirits throughout the evening at Tuesday Night Sunday School. Friends ask how I'm doing, knowing the answer might not be what they want to hear, offering prayers and love to carry me through.  Several times throughout the evening, I breathe deeply in an attempt to hold tears at bay - sometimes because of pain, mostly because of thoughtful, kind people. Silent prayers of gratitude for my wonderful church family fill my thoughts.

Finally in bed, the days events come to rest on my overburdened brain. It occurs to me that on days like today, all you can really do to navigate the highs and the lows is to breathe deeply and pray. 

Tuesday, October 21, 2014

Dread


It's almost here. The appointment I've been needing and looking forward to, yet at the same dreading with every fiber of my being. The appointment that will hopefully put me on the path to solving another piece of my health puzzle, but which could also come with life-changing news. I finally saw a neurologist to figure out why I have numbness and tingling in my arms and legs, why I have a constant stabbing headache, why my neck hurts all the time, and why my legs go out from under me without warning. I had extensive x-rays to help determine the amount of fusions going on in my neck and lower back due to ankylosing spondylitis. Now I have an appointment with my rheumatologist to put it all together, to figure out if he has a better picture of what's going on, and to find out how we're going to proceed.

I want answers. Really, I do. But a sense of dread has come over me since the appointment showed up on my calendar. The what ifs are taking over the rational just-wait-and-see-there's-no-use-in-worrying part of my brain. I'd love to be able to turn it off., but nevertheless, the wait of it is crushing me. Suddenly I'm exhausted. Feeling like I need something, but I don't know what that thing is. Feeling alone.

It's strange how confident I am that I will be able to come to terms with whatever the diagnosis, that God is with me through all of this, that I am supported by friends and family - yet how much fear I'm experiencing in waiting for answers. My faith is battling my OCD and it's driving me crazy.

Faith: God will get me through this.
OCD: But what if your entire life is going to change with just a few words from the doctor?
Faith: Then I'll take deep breaths, pray, cry, be said, be angry, be thankful, and move forward knowing that I can get through this.
OCD: But what if you have to stop helping out other families and can no longer do the things that get you out of bed every day?
Faith: Then I will find other things I can do.
OCD: What if you'll end up paralyzed for the rest of your life?
Faith: Then I'll adjust. And what if there's nothing to worry about at all?
OCD: What if...what if ... what if...
Faith: Deep breaths, prayer, take comfort in God's Word and God's grace...
OCD: What if...what if... what if!!!???!!!
Faith: Don't worry. God is with you.


I can't turn it off. I sleep for a couple hours then wake up, the battle raging in my mind all night. I go through my days needing to constantly be doing something as to ignore dread's grasp on my being. I pray. And pray. And pray. Some days are better than others. 

Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.   Matthew 6:34
And so each day I count my blessings, recognizing all the good that God is doing in my life. As much as my OCD focuses on the what-ifs, I try to focus on the then God wills. 
 

Monday, October 6, 2014

Best Intentions


An amazing woman I know, in a facebook group she set up as a landing place for parents doing their best to parent gently while coping with the many manifestations of post-traumatic stress disorder, started something that has turned into a daily ritual for me, and has been life-changing. It's so simple, yet so critical. 

First, two simple words help center me for the day ahead: I Intend...

Today, I Intend: To live in the moment, To be open to Joy, to make it the best birthday party ever for my son by encouraging him to lead the way through the Peabody Museum of Natural History with his friends and releasing any expectations I might hold of what our time there should look like. To be gentle with myself as I navigate the museum in wheelchair or on crutches, listening to my body's limitations, but not letting those limitations affect my mood. 
Today, I Intend: To center myself in the Water and the Word. To tend to the earth. To be a good steward with my time, talents, and possessions. To have patience, to act in kindness, and to be gentle with myself and others.
Today, I Intend: To treat myself gently. To not push myself to do more than I should. To let the house and the kids be messy. To take my pain medication, use my mobility devices, and to pray instead of worry about my physical future. 
Today, I Intend: To balance much needed rest with much needed housework. To be patient with moody children and children working through sensory issues. To be gentle with myself as I deal with extreme pain.
Today, I Intend: To be patient with my children and myself. To let go of expectations for the day and just let it happen. To listen more than I speak, to give more than I take, and to say yes more than I say no. 
This simple practice helps me be mindful of how I want to proceed through my day, helps me keep myself in check, and is easy to go back to throughout the day to remind myself how I wish to proceed.

Then, in the evening, three words fill my being with gratitude for life's blessings ... I'm Thankful For ... 

Today I am thankful for amazing friends whom I don't see nearly enough. Friends who ask me, and REALLY want to know, how I'm feeling, how i"m doing, and are concerned that I have too much on my plate. 
I am thankful for a wonderful outing to the museum, for lots of smiles and excitement, for crutches to get me around, for having a vehicle my friend could borrow in an emergency, and for lots of good things to look forward to this week. 
Today, I'm thankful for clean water, nourishing food, shelter, warmth, and family. I'm thankful for each step, each breath, each tear, and each laugh. I'm thankful for community, for music, for unexpected conversations, and for giving my time to others.
I have to admit that I more often than not am to tired or ill to post my gratitude, but every night share it with my family as we share our highs and lows of the day with each other. 

Composing my intentions at the start of the day, and acknowledging life's blessings at the end of the day have greatly improved my life, my outlook, and my mood. This ritual has helped me navigate daily doses of Angry, increased pain, and decreased ability to do many things in life. I intend to live life in joy and carry gratitude with me always. 

Thanks, Rose! 

Friday, October 3, 2014

Health-O-Meter

I wish there was a Health-O-Meter that could let me know what my health is going to be on any given day. Life would be so much easier! You see, on days like today, I never know when my body is going to say enough! It could be that I get up, showered, and dressed with minimal problems. I could even get to the grocery store and do a little shopping. Or maybe a lot of shopping. Perhaps I'll start feeling ill just minutes after arriving at the store, or halfway through shopping, or when I get to my car. Maybe I'll need help getting my groceries in the car, or maybe I'll be able to do it myself. I may get the groceries from the car to the house, or need someone else to do it. Then there's putting away the groceries. Occasionally I'm well enough to accomplish that task immediately upon returning from the store. Mostly I get the fridge/freezer stuff put away and then call it a day ... or a week.

Perhaps I have an after-the-fact Health-O-Meter...


Incredibly Ill: Didn't even consider going to the grocery store even though all we have in the house is a giant head of cabbage and an overabundance of mozzarella cheese.


Very Ill: Thought about going to the grocery store. Made a list, even. But then decided otherwise once my feet hit the floor.


Just Plain Ill: Made a grocery list, coordinated it with coupons. Got to the store, and halfway through shopping, and realized there was no way it was all getting done in one trip. Checked out with what I had and called it a day.


Slightly Ill: Grocery list, coupons, and a full shopping trip accomplished. Freezer and fridge stuff put away. Perhaps if my family members trip over the rest of the groceries strewn across the kitchen floor, they'll put them away. But most likely not.


Feeling OK: Grocery trip with coupons completed, All groceries put away. 


Feeling Good: Groceries put away AND beef divided and frozen in 1 lb. bags; chicken breasts marinated and frozen, some cut up and marinated for kabobs, 


Feeling Great: All of the above, and the fridge cleaned and pantry organized before shopping.


So ... if you should happen to arrive at my house and find groceries everywhere - beware! I'm not feeling well. If the kids are eating cabbage pizzas, please come back with a bag of apples and a jar of peanut butter ... and don't mind me while I take a nap. 


Wednesday, October 1, 2014

Making Sense of Worship


My feet are cold. People are shuffling their feet, flipping hymnal pages, sniffling, whispering, rifling through bags and purses, all while the Pastor's voice echoes off the walls. The flowers smell strange today and there's another scent I can't figure out - maybe some kind of cleaner, or someone's perfume. It's cool in here, but the light above my head is producing too much heat. I think I might need to change seats, but my only options are next to my sister or a stranger. Perhaps I'll stay put. Why do we have to sit in front? All those people behind me and I don't know what they're doing. It's quite distracting. Just to get out I have to maneuver through a sea of them. And there's a high pitched sound coming from somewhere - the sound system or the emergency light things, maybe? Now the vibrations of the organ are rattling my chest and my eardrums. It's so loud! So many different voices assaulting my ears all at once. Whew. Silence. Well, not really silence. More shuffling and sniffling and whispering. Noise, quiet, noise, quiet, stand up, sit down, stand up, sit down, speaking, singing, flipping pages, sitting still, being quiet, more noise again. I almost forgot - it's close to the Sharing of the Peace. I need to get out of here before all those people want to, no...expect to, touch me. At least I'm used to the taste of Communion now and can get a drink afterwards if I need to. Worship is almost over. I hope I can get to the door before too many people get up. I need to breathe in the empty hallway before everyone descends on Coffee Hour. I need to get and eat my food so I can escape to the van and sit alone for a while. 





I'm so glad we're sitting in the front row. I love to see all the stuff that's going on - the flickering of the candles, the banners and the cross. It's fun to see Pastor's face and hear him clearly as he gives the sermon. Look at all the colors of the flowers. I can smell them from here and it's great. I wonder what they feel like. Look at the faces behind me - a sea of colors and movement and noise. Aww, that song wasn't very long. I love the rumbling of the low notes. Argh, it's too quiet now. Maybe I'll translate the bulletin into code or draw on it or maybe I can make a stamp by drawing something on my hand and trying to stamp it on the bulletin. Oooh, I just thought of something I need to tell Mama. Oops, I forgot to use my quiet voice. It's too quiet in here. I'm supposed to sit still, but my feet won't stop moving. I'm thirsty. This sermon is long. Do people really think God is doing it all wrong sometimes? God's grace is a mystery? I love mysteries. I need to tell Mama about that episode of Scooby Doo where ... ack! I forgot my quiet voice again. And about not talking during the sermon. It's so hard to be quiet when it's so quiet in here. I must have been sitting still for an hour. I just can't keep my legs still. Mama said it's been eight minutes not an hour. Can't, keep. my. feet. still. I need a squeeze now before I launch myself. Must get hugged tight if I'm going to make it through the sermon. Oh, good, it's over. Another song. I need a drink and to walk and to spin my arms around and around until they're too tired. I'll ask Mama to take me. I feel better now. Time to share the peace. I need to find Mrs. Finer and Ellie and Gramma ... and ... and ... Time to put the money in the plate. That means it's almost Communion. I'm so glad we're sitting in front so we can get to go first. More things to say and songs to sing and I can stand up and move my feet and stretch and get some of this energy out and more energy in. 




Children and adults on the autism spectrum or with other special needs experience worship in a very different way than the typical population. Some are overwhelmed with the sights, sounds, smells, vibrations, and activity at worship. Others feel overwhelmed trying their best to be still and quiet. Some experience both at the same time. 

What can we do to help? Don't judge when they forget to use their quiet voice. Or when they get up and leave in the middle of worship. Or when they curl up in a ball and ignore you during the Sharing of the Peace. They are most likely not purposely being disruptive or disrespectful. They are more likely overwhelmed ... or underwhelmed ... whichever the case may be. They are definitely meeting their needs. 

A child with Aspergers once told me that sitting through worship is sometimes like trying to thread a needle while a skunk-sprayed dog is barking and running in circles around you and you're being pelted by a chattery squirrel throwing acorns at your head while snakes slither up your pant legs. Think about that for a moment. 

Many special needs kids and adults don't understand social mores and have poor impulse control. Some don't like to be touched, some seek touch as if it were a drug.  It takes a lot of energy and concentration to hold it together as much as they do during worship. And even if it seems like they're fidgeting, odds are they're paying closer attention to the sermon than you are. 

As a parent of a sensory-avoiding child with Aspergers (the first part of this post) and a sensory-seeking child with Aspergers (the second part), worship is an interesting experience for me. I have been the recipient of glares and stares during worship when a child is being loud or fidgety or dives under the chairs to avoid people touching him. I've tried to find quiet ways to leave the sanctuary with children having sensory meltdowns, and short of getting a straightjacket and a muzzle, I'm not sure I'll ever succeed. Although my sensory-seeker would LOVE a straightjacket. 

I've spent many a sermon hugging and/or swaying with a child - or in the bathroom or quiet room with a child in mid-overstimulation meltdown. I have allowed my sensory avoiding child to sit alone in the Fellowship Hall during worship and my sensory-seeking child to exit stage left and find a place to flap his arms and walk in circles until he can regain his composure. I've read more sermons online than I have experienced in their entirety in person. 

Please remember, we are ALL children of God. We all deserve to be treated as such - with patience, love, and grace. 

Friday, September 19, 2014

Sleep is Not For Me



Dear Coren,

I'm sorry you had such a difficult time going to bed tonight. I do, however, find it interesting to hear that all the crying about being too scared to sleep scared the fear away and allowed you to sleep. Are you suggesting that next time I just need to allow you to have an epic fit and then you'll calmly go to your room and sleep? I'd rather avoid the crying. Let's talk when you're better rested. 

And...

Dear Husband,

I have no idea what was so important for someone in your dream to look at, but yelling "look!" in your sleep doesn't help me sleep at all. In fact, it helps me have heart palpitations.

And while I'm at it...

Dear Alia,

You are creepy. Especially when you're sleepwalking and stand right next to my bed and stare at me until I wake up. You are even creepier when I ask you if you need anything and you inform me that you can't seem to find your scalpel. Thank you for going back to bed as instructed. I'm hiding all the knives now.

All this. All in one night. It's 2:48am. I'd like to be sleeping now. I'm going to try again, but I'm afraid. I'm very afraid.

Tuesday, September 16, 2014

Mister Adorable



I have a child who is absolutely adorable. He always has been. I have a feeling he always will be.

But he's just turned NINE and therefore he can no longer, not under any circumstances, be considered adorable. He admits to having been adorable when he was little, but most definitely not now. Cute, maybe. But NOT adorable. Not one little bit. So whatever you do, don't tell him that I said he's adorable, and definitely don't mention the title to this post.

He is smart, and funny, and has a memory like you wouldn't believe. He always makes sure to give hugs and kisses before bed, including giving me some to give Daddy when he gets home from work. He can be completely oblivious to the world around him at times, and at other times notices everything all at once. He has a kind heart and a gentle spirit. And he's adorable.


I'm sorry, Coren Ryu, but you are adorable.

You are charming, delightful, and inspire in everyone you meet a great affection for you. You just can't get around it. That's what you are. 

You are also sensitive. In life, some people might tell you that being sensitive is a bad thing. Don't listen to those people. Listen, instead, to your sensitivity. It will tell you a lot about life, about people, about relationships, and about yourself. Listen to the things about which you are sensitive and follow your heart. Don't mistake sensitive for not "grown up." Sometimes being a man means needing a hug or a good cry or laughing until you pass out. Don't let anyone ever tell you different. 

I'm so glad that you're you. I'm so happy that you are my son. You bring a smile to my heart every time I see your (adorable ... sorry, can't help it!) face. 





Thursday, September 11, 2014

A Special Bunch of Heroes

Today I remember a select bunch of heroes. 

Thirteen years ago, I loaded my precious cargo into the car, turned on the radio, and heard the words, "Smoke is pouring out of one of the World Trade Center towers." I ran into the house, told my husband to turn on the tv, and got back into the car. As I drove, I listened to an NPR reporter who was on the streets of New York City. I listened as the second airplane hit. As I pulled into a parking space in front of the fire station, the first tower fell. Upon entering the fire station, I wasn't sure what to say first - to wish my sister a happy birthday or to break the news in case she hadn't heard. That's when I noticed the tv in the office and the firefighters gathered around it. Approaching the fire fighters, I was assured that our fire station field trip would continue as scheduled. 

As our group of adults, toddlers and preschoolers explored the fire station, learned about the different types of fire trucks, the firefighter's gear, and watched the firefighters slide down the fire pole, the parents were kept abreast of the tragic situation calmly and quietly by the firefighters who had gathered, on duty or off. We were thanked profusely for continuing with our field trip. We thanked the firefighters for their hospitality - for allowing our visit amidst tragedy and chaos. 

One firefighter took me aside that day and put things in perspective. Hundreds of emergency workers had responded to the towers. Many had surely died. That morning the firefighters at the fire station in downtown Naugatuck, CT were provided with a greatly needed reminder - of laughter, excitement, amazement, joy - of LIFE itself. A dozen or so little smiling faces, oblivious to violence, terrorism, and the horrors of the world. Innocence - the very thing they needed to witness to help counteract the horrific images embedded so quickly and permanently in their memories.

In the weeks to come, many people were declared heroes, and rightfully so - the emergency workers who went into the towers and never came out; the people on the airplane that took action to try to help save lives; the many that searched through the rubble for survivors. For me that day, there were more heroes. Heroes who sheltered the innocent and showed them a wonderful time while keeping their parents quietly informed. Heroes who scampered about a fire station, asking questions, climbing on trucks, and delighting in ringing the bell - bringing smiles to faces that would spend the following days, weeks, perhaps months in tears. 

Today I celebrate this special bunch of heroes. 

Wednesday, September 10, 2014

The Prince of Cures


It's the antidote to anger, sadness, to what ails us. As unexpected as it seems, it really works! This revolutionary cure was discovered quite by accident. My life will never be the same. 

It all started one day when I had a chocolate craving. I decided gluten-free brownies were in order, so I baked a batch. Well, it might be more accurate to say I attempted to whip up a batch. One would think that I would learn, after numerous failed attempts, that brownie baking just isn't my forte. Too crisp around the edges, the brownies were more than a little gooey in the middle. There was no saving them. 


As the "brownies" were baking, one of my children, who was having an exceptionally bad day, all but locked himself in his room. Even the prospect of brownies wasn't enough to alter his mood. Good thing, too, because what a disappointment it would have been to have his mind set on a rich, crumbly brownie only to be let down. 

Darn prednisone. Now all I can think about it brownies. I just handed the kids a box of mix and they're baking. 

But I digress.

Entering the child's room, he was unresponsive to anything I said or did. Extending my arm, I offered him a plate of brownie goo and two words, "brownie poop?" 

His face immediately, yet subtly changed. I caught a hint of a grin before his shoulders started to every-so-slightly bounce up and down. No longer able to help himself, the plate of steaming brownie poop just inches from his nose, he burst out in glorious laughter. After consuming this healing confection, good mood restored, he rejoined the land of the living. 

Fast forward a month or so and we sat in the Fellowship Hall of church before worship began. Some slight by a brother or sister combined with poor sleep the night before and an early morning concocted a sour mood in this same child. Yet again facing an unresponsive child, I spoke gently and calmly even though time was of the essence, as he was supposed to be helping with worship that morning. I started getting frustrated that he would not talk, refused eye contact, and could not seem to get enough control over his emotions to either get through them or let them go. 

Then it came to me. I placed my face directly in front of his face, took a deep breath, and with an extremely serious look on my face said those two miraculous words, "brownie poop."

He was in an acolyte robe and upstairs within minutes, just slightly peeved and equally amused that his blustery mood was squelched once again by the prince of cures, brownie poop.