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When I Am Old

March 27, 2013 By Leave a Comment

When I am old, I will miss the night-time creeping that precedes a whispered request to sleep with me. I will miss peeking at the door through a half-closed eye to watch how carefully one of my children turns the knob, how gently the door is closed. This quietness will always mystify me, for when the sun is in the heavens, my children are only able to slam doors.

When I’m old, I will miss the elbows and knees and pointy joints softened by a covering of baby fat that dig their way into my ribs. I will miss the comfort of their presence beside me when daddy is away – which is often. I will miss how it brings me peace in a home that is still unfamiliar. I will miss having to pause for my evening’s final task – turning on the hall light – so that the path to my room isn’t dark or frightening.

When I am old, I will miss the screaming that takes place between two children above my head at three o’clock in the morning, because each wants me to themselves.

Who am I kidding? I won’t miss that at all.

When I am old I will be the one begging for “a hug and a kiss,” and not Jesse. I will be the one asking if she would lay down beside me, not Grace. I will be the one still seeking out a reticent Noah, wrapping my arms around him in the gorilla embrace that is one of the few he tolerates. And in that way, my world will remain a bit the same.

When I am old, I will miss the baby breath humming through lips parted in sleep. I will miss the fuzz of a Disney blanket carried to bed against my face. I will miss kissing the tops of their heads as they settle in, grinning like monkeys because they’ve had their way.

But for tonight, I’d just really like to get some sleep.

- Sarah

Filed Under: Asperger, Attachment, Blessing, Contentment, Family, General, Journey, Parenting, Uncategorized, warmth

The Light in the Being

January 3, 2013 By 2 Comments

I awoke on New Year’s Day with an inexplicable lightness in my spirit. Matt brought me a cup of coffee as I lay in bed (by anyone’s account, a great way to start the day). I am by no means a morning person, needing a good 5 minutes on the edge of the bed with half-closed eyes before I can even set foot in slipper. Which is why the brightness in my voice gave Matt cause to remark, “Well, you’re quite perky this morning!”

I grinned sleepily at him from under the quilt. I couldn’t remember the last time I had felt so…secure. So excited to continue. So ready to run.

“Yes I am!”

“Why? I mean, the present circumstances…”

“You’re right. It’s not exactly logical. But I’m still happy!”

In his brand new Christmas sweater.

On December 27th, Jesse was attached to a spider web of EEG sensors and laying in a hospital bed in order to evaluate him for epilepsy. The report from our Neurologist came through the next day, stating that though we are still waiting for the EEG report, he’s largely convinced Jesse is – like his older brother – also on the autism spectrum (though only a formal ADOS evaluation will tell). Having suffered from a low-grade flare through the holidays, I was beset by daily nosebleeds, including one “hemorrhage” that went on for 5 hours. We had one foot out the door to the E.R. because I looked like the president of some suburban moms fight club. We are moving and between homes. But we’ve recently found out that the contract for our new house may have fallen through too late and that, for most purposes, we’re now technically homeless.

HAPPY. Believe it or not, I am.

If it seems as though my posts take on a somewhat Eyeore-esque self-pitying tone, well then, you got me. I’m prone to listing woes – partly, because listing things helps me remember what needs yet to be tackled, and partly, because Matt and I are convinced we’ve hit the worst of our stretches, until another one comes along. In a way, my listing serves as a reminder that it could always get worse. Here though, there is no self-sympathy. I list to illustrate the illogicality of my happiness.

And to tell you from whence it springs:

“Yet this I call to mind and therefore I have hope: because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.” Lamentations 3:22-23.

From the book of Lamentations – which chronicles the destruction of Israel and the horror of their fate after Babylonian invasion – comes an unlikely verse of promise and light. Because of the Lord’s great love, WE ARE NOT CONSUMED.

Because of what God has promised us, we are not consumed by illness or bankruptcy or loneliness or loss. We are not swallowed by the distress of fear or hunger or uncertainty or despair. We are strong in the face of adversity. Our beings are too light to be devoured by the darkness, for God in us is the antidote to every shadow.

To you of the hidden disabilities and the obvious calamities, I wish you a Happy New Year. May you ever fix your eyes on the Lord’s bright promises – those that make you safe, and strong, and swift.

- Sarah

Filed Under: Asperger, Autism, Challenge, Change, Contentment, Courage, Epilepsy, stress, Uncategorized Tagged With: , ,

Venti (Twenty)

November 8, 2012 By Leave a Comment

I’m sitting in Starbucks as I write this, and feel compelled to share it only because it differs in large margin from where I normally write. Where I normally write is in the corner of my bedroom, on a desk barely large enough to contain my few writing implements and resource books. I write mostly in my pajamas.

Right now, I feel like a duck in a hen house.

This place is crawling with Audi-driving hipsters. They are the wives and well-dressed babies of local dermatologists. They are the partners of large law firms recently off their fox hunts. They are software neophytes (venti-something’s) who’ve biked here from their cavernous, video-gaming offices up the street.

They chitter with each other, coo over their babies, read the Times. They order their lattes to a certain temperature. One hundred and forty for this one, 135 for the other. I cannot tell the difference. Mostly, I’m just content to burn my tongue a little and then wait until it cools off. They order with certain panache, coming to the counter with a confidence that eliminates the need to even scan the menu board. They order their “regulars.” They are identified by name by the baristas.

What I am doing? I am scanning the American Bar Association homepage, and trying to figure out if it’s worth spending $150 to order a CD rom that provides a comprehensive overview of special education law so that I can continue to track Noah’s highly specialized educational entitlements. The Individuals with Disabilities Education Improvement Act of 2004 (IDEA) requires that school districts provide disabled individuals with a “free and appropriate education” (FAPE). My husband and I have recently spent quite a few hours (venti, or more) meeting and corresponding with our local elementary school in a novel attempt to develop a service plan for Noah who – though he does not attend school there, but attends instead a private Christian school over the line in Pennsylvania – is still entitled to a “FAPE.” This means we have to act as though he is attending the local Maryland school, turn over our health care records and assessments for Noah, request they develop a service plan for him based on the documentation, decline the service plan because we plan to utilize it at another school, and then take the formal findings and plan to the Christian school where Noah attends in order that they might have access to government funding that will help them provide specialized materials and services for Noah.

Did you get all that?

THIS is what I’m doing in Starbucks this morning, sitting next to my venti coffee.

And then a lovely, freckle faced mother sits down next to me. She wears no makeup. Her belly is still swollen from recent birth. She sees either the safety of an understanding face in mine, or just an empty seat, but she places a portable baby carrier on the counter we share. Inside, is a mewing, spider-fingered two week old named Jack. I ask her about him. I tell her he is beautiful and that she should cherish every moment of his small-ness. I reminisce to her about my own Noah and how, while he was never truly small (nine pounds at his arrival, no less), he is bigger now than I ever could have imagined.

I am sometimes mired in the steps of our journey, and seeing this woman, misty eyed with infatuation for her newborn, brings me back to where we began, before I needed to research things like educational entitlements. Jack has a baby smell, and I am taken back to afternoons nursing Noah in our white glider, looking out over the backyard, listening to a disc of lullabies. I remember what it felt like to tear up for pure joy, carrying a heart I thought would break under the strain of perfect happiness.

I smile, and tickle Jack’s foot, and wish his mother all the best. Then I turn back to my computer, sipping my venti coffee, and logging another hour of research on Noah’s behalf because soon, he will be venti, too.

- Sarah

Filed Under: Asperger, Challenge, Contentment, Family, Gratitude, Journey, learning disabilities, school, Uncategorized

What Tired Does

November 1, 2012 By 2 Comments

This is an un-enhanced picture of Tired. The bags are real.

Meet Tired.

Tired has been without power, locked in her house in the path of a Maryland-bound hurricane with three stir-crazy children. During this time, Tired’s children have subconsciously been looking to their eldest brother to set the pace. The same eldest brother whose ADHD LOVES a hurricane because it means he can run in literal circles, destroy his bedroom, scream, chase his sister, hit his brother, and wreak general, exceptional chaos.

Tired feels sick most of the time, and is coming off being sick again, which means she has recently been forced to miss the things like riding that energize her and make her less Tired. Plus, Tired’s health is getting worse, not better, and she has begun to dread her doctor’s appointments. Dread makes her tired. Tired has also just recently learned her post-chemo brother is back in the hospital all the way across the country, and this, too, makes her Tired.

Tired is staring down the barrel of the most challenging time of the year, which involves Thanksgiving, her wedding anniversary, her husband’s birthday, her daughter’s birthday, and Christmas in four short weeks. At this time of the year, Tired is also Broke.

Tired is often Worried, sometimes Cranky and Short-Tempered, and occasionally Sad. Because being Tired makes her a lot of other things.

So what does Tired do during a hurricane?

Tired sits on the couch with her children to watch a cartoon after the generator kicks in, wrapping each of them in a blanket and stashing their feet in her lap, because sitting on the couch feels good, but sitting with her children feels even better.

Tired pets her children often, touching their hair, kissing their cheeks, because connecting with them is so easy when they are so close, and there is so little she can otherwise do.

Tired gives up on the laundry because she has to – because there is no water, and no power, and she is quite surprised to discover that simply closing the laundry room door is as effective as “doing” laundry. Until everyone runs out of underwear.

Tired becomes Patient with her son, because she realizes how trying he can be when he has no outlet for his energy, and eventually, becomes more creative in how to let him blow off steam. This gives Tired AND her son some peace. But boy, it makes the basement a mess.

Tired breaks up fights by lowering her voice, and taking each child to her side because really, it’s just too much energy for Tired to yell. She is amazed to discover that this actually works.

Tired pulls back the covers in the middle of the night when the darkness and the silence is too much for her three-year-old, because she realizes that as the baby, these moments with him will fly with quickened pace each day he grows.

When the power comes back on, and the same litany of things is facing Tired, and the calendar is ticking like a clock hand, Tired realizes she is also Happy.

And that she might not mind another storm.

- Sarah

Filed Under: ADHD, Challenge, Change, Contentment, Emotions, Family, Parenting, Uncategorized, weariness

The World in Miniature

October 11, 2012 By Leave a Comment

Perhaps it was because fine motor skills have vexed him so much. Buttons, zips, and buckles still torment him after many years of therapy. He pulls his pants on already done-up, as I’ve left them hanging clean in his closet. He hates belts, pulls his shoes on already tied, rarely eats with a fork. Yet ironically, Noah adores the tiniest of toys. Legos are among his favorite – though we could have saved ourselves untold sums if we’d caught on earlier to the fact that Noah likes ONLY the characters from the kits. Only the tiny people with their molded hair and little weapons. And Star Wars figurines. Those are a particular favorite, with their articulated limbs and their tiny hands and laughably small weaponry. Take this light saber, for example. I’ve seen thicker dental floss.

Noah lives his life on a grand scale – everything about him is loud, physical, dramatic, and charismatic. But his toys are tiny. He brings his imagination down, close to him. He lives this part of his world on a miniature scale, perhaps to give him a sense of control over the rest of the bigness in his life, and all the attendant chaos. Maybe it’s because mastery of fine motor skills is lots more fun when you can do it with an ewok the size of a quarter.

I wonder what Noah sees in tiny things. Maybe a beauty the rest of us miss. Or an opportunity to close out distractions and focus on the moment at hand. Because really, aren’t the little things sometimes the most important?

- Sarah

Filed Under: Asperger, Contentment, Uncategorized Tagged With:

Moments of Contentment

September 11, 2012 By Leave a Comment

Some days I have a post just begging to be written. Today isn’t one of those days. I asked Stephen (the 15 year old subject of most of my posts) what I should write about. The reason I asked him is because I know he reads what I write about him, about us. In fact, lately there are times that I have written about an issue we have faced and he later commented about my post. On a recent rainy Sunday morning he commented that he was not going to wear his raincoat to church because it was too soon and he was trying to be sensitive.  I appreciate that my posts are creating learning moments for both of us.

So, as I said, today I asked Stephen (who has Asperger’s) what I should write about. Without giving it too much deliberation he suggested that I write about how everyone is pretty happy. I don’t think he means that his little sister isn’t annoying him. Because she is—she sings almost constantly and finds millions of ways to push his buttons, as any good little sister would. It doesn’t mean homework isn’t challenging; because it is, and he has some every night, although it hasn’t been overwhelming recently. I think what it means is that he finds himself in a good place right now and when he is in a good place it is a lot easier for me to be in a good place.

“Not that I speak from want, for I have learned to be content in whatever circumstances I am.” Philippians 4:11

~Louise

Filed Under: Asperger, Contentment Tagged With: ,

God in the Mess

August 16, 2012 By 2 Comments

While I’ve done my best to condense it, I want you to know this missive is long, so you might want to get a snack.

(I’ll wait.)

Truth is stranger than fiction, and our lives are even stranger than that. So let me paint you a picture. I won’t need to review much history. Just a simple span of 72 complicated hours will suffice. I’m convinced God’s got a sense of humor. In fact, I find His timing to be downright hilarious.

But I find Him when I look for Him – because He makes Himself known.

On Friday, Grace’s beloved beta fish, Ariel died. I wasn’t too heart broken, as the fish had made it about one year – high achievement for something the size of a half dollar. So, we went to get another fish, and decided on two tiny tiger barbs. Grace was elated. At Noah’s strong suggestion, she named them “Barbara” and “Barbarian.” This is the saccharine “Dawson’s Creek” moment in the story. We are headed next into “National Lampoon” territory.

At the same time, Grace and Noah were approaching the last of their summer camps; it was a traditional, north-woods camp experience that we deemed their “big finish” to the summer, but which required a physical for entry. Their pediatrician couldn’t get them in until September. Had I waited too long to make the appointments? Yes. Yes, I had. So we took them to the Target “Minute Clinic” for a check-up, and a signature on the all-important health documentation. We did this on a Saturday. Two weeks before the start of school. After gymnastics and karate classes. Before Jesse’s nap. On a SATURDAY.

Two hours, three screaming children, and two signatures later, Matt was headed home with the kids in my car, and I was headed home with a trunk full of groceries in his. A party followed that night, wherein Jesse peed himself and spent the rest of the evening undressed from the waist down. I’ve apparently gotten lax in potty training the third time around, because while this isn’t the first of our training mishaps, I’ve yet to see fit to stick a spare pair of undies and shorts in the car. Apparently, I’m too good for a back-up plan.

That evening, I reviewed a copy of the MRI report sent to me by my doctor after my recent brain scan. You see, Behcet’s (Disease) is like a box of chocolates. You never know what you’re gonna get. After some disconcerting neurological symptoms appeared (including memory loss and problems of cognition), I underwent an MRI which revealed subtle changes in the white matter of my brain, probably due to cerebral vasculitis (up to 20% of Behcet’s patients suffer from a sub-set of the disease involving the brain). Not knowing when to leave well enough alone, I hit the internet hard. What came up was “vascular dementia.” I turned to Matt. “Well, it’s official. I’ve finally lost my mind.”

We thought we would sleep in on Sunday, and give everyone a chance to recover from the previous day and get ready for a busy week. Zelda – our Texas Heeler dog of previous reference on this blog – had other plans, and decided she would set to work destroying not only an entire wall of basement insulation, but the heirloom crib that’s been in Matt’s family three generations. We had begun the post-apocalyptic clean up job before we realized that the shop-vac was missing its filter. Matt headed to Home Depot, and I re-settled my over-stimulated, under-slept three year old in his bed for a nap no fewer than four times before we began repairing in earnest. Jesse then repaid my patience by knocking down the hall table and sending a filled vase careening down the second floor landing. “I forgive you!!!” he yelled at me – clearly not understanding the concept. “I FORGIVE YOU!!” He was desperate. And heart-wrenchingly reminded me “I a GOOD KID, mama! I a HERO!” This is what your preschooler says to you when you have said something you regret to him (or screamed it, perhaps?) in the midst of a reprimand.

With the basement finally in order, we sat down to dinner. I filled Noah’s plate. Noah’s eyes filled with water. He stifled a gag, insisting, “There’s gasoline in the brussel sprouts!” I fought the urge to retort, “Well you better not light a match.” Sunday night, Matt and I collapsed into bed, making it until 4:00 am, when Jesse got up and insisted, “it’s mornin’ time!”

Monday morning, the kids were scheduled to be at camp by 8:45 a.m. In a flurry, I sent Matt down to our neighbor’s house so he could feed their dogs and let them out. Our friends were taking a well-deserved trip to the beach, and we had agreed to dog sit. Matt was back within five minutes, and pulled me aside.

“Prince is dead.”

I don’t know what I looked like at that point, but I’m pretty sure I made whatever face cartoonists draw to indicate surprise. I think there was an exclamation point above my head.

For you dog lovers, let me say that Prince was 13 (that’s 91 in people years if you’re doing the math), on heart medication, and of limited mobility. There was no indication of pain or suffering in his passing, and Matt was there to be with him at the end. It was definitely that sweet dog’s time to go.

But I wasn’t thinking about that when Matt came home. All I could think of was how to pull off a three ring circus in 90 minutes.

Thinking fast, we decided to get Grace and Noah to camp, drop Jesse off with the neighbor’s nanny, go back to the house to tend to our neighbor’s other dog, and load their deceased dog in the back of Matt’s car so I could take it to the vet and Matt could be ready for his 10:00 a.m. conference call. All this, I was going to attempt with a husband who had a (1) rotator cuff tear and (2) compound fractures in his shoulder. He literally cannot lift his fork without moaning.

Somewhere between the mania of heartache and humor, loading Prince into our car, I looked at my husband and blurted, “There’s no one I’d rather carry a dead dog with than you.” Because it’s true. Because I love him the way only God can show you how to love another person – through all the mess and in spite of it.

God was in an open pet shop, and the smile on Grace’s face when she gingerly held her new fish on the way home. God was in the signatures on the medical forms that got Noah and Grace into, as Noah called it, “Camp I-Wanna-Pee-Pee.” God was in an excuse to redecorate because a vase was broken, and Zelda’s wagging tail and cocked head – so excited to see us, and covered with insulation. And God was in Matt’s re-scheduled meeting that meant he was with me Monday morning, and able to help – instead of in North Carolina, as originally planned.

“He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.” (Psalms 40:2) Thank you Lord, for a firm place to stand. Thank you for reaching out your hand to me when I’m covered in mire, because you love me, even when I’m a mess.

I’ll sign off for now. I have to go flush Barbara down the toilet.

- Sarah

Filed Under: Asperger, Blessing, Challenge, Contentment, Courage, Encouragement, Family, God's presence, Uncategorized Tagged With: , , ,

The Savagery of Shark Week

August 13, 2012 By 2 Comments

As I sit here composing this entry, my son Fletcher and I are celebrating the Discovery Channel’s twenty-fifth year of Shark Week. For some reason, this is one of the few television programs that catch our little man’s attention. Go figure.  Some children are content with Barney or Veggie Tales, but not Fletch. Nothing less than a two ton shark propelling out of the water while chasing a terrified seal will do! The violence and single-mindedness of these Great White Sharks astounds me.

As I think about my son, I wonder why I do not chase the promises of God as ferociously as these sharks chase their prey. The sharks are simply doing what comes natural to them. As a child of the King, why then do I struggle to do what is supposed to come naturally to me? Perhaps, at the deepest level of my heart, I really don’t have trouble believing that the promises of God apply; they just don’t seem to apply to me.

Now that hurts to admit this shortcoming in such a public forum; but I feel that I am not the only one who struggles in this area. But as I watch these sharks more closely, I notice that once they lock in on their targets, tunnel vision consumes them. Nothing else matters except getting the seal. The shark doesn’t worry about teachers, IEP’s, church, or impending social situations; the shark focuses on the seal.

Maybe I can learn something from these creatures. Maybe I can learn to keep my focus on the object of my pursuit. The author of Hebrews encourages us to do that very thing:

[12:1] Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, [2] looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. (ESV)

The next time I am feeling a little down or frustrated because things haven’t turned out the way I had planned, I need to keep “looking to Jesus, the founder and perfecter of my faith.” The next time I get upset because people don’t understand, I must remember to ruthlessly clamp down on Jesus’ promises by sinking my spiritual teeth deeply into them. Only then will I truly be able to taste and see that the Lord is good (Ps 34:8)!

~ Todd

Filed Under: Blessing, Challenge, Confession, Contentment, Faith, growth, humility, IEP, Parenting, Provision, Trust, Uncategorized

My Portion

August 2, 2012 By 1 Comment

Who can know why the Lord blesses some, and stays his hand from blessing others; why he permits hardship for the one, and ease for the other. What do I have? Blessings and hardship both, knit tightly, flowing side by side – some so close that they succeed one another in a single day. I have learned, as Paul wrote, to be content in all things – in plenty and in want, because my earthly portion includes both. Because of this, I have better perspective on Noah, and the particular challenges he faces in light of how he comprehends the world and the nature of God.

I spent two years searching for a medical diagnosis that continued to evade us. It wasn’t uncommon to see 2 or 3 doctors in a single week. We visited specialists all over the state, and it was hinted by some that it might just be “middle class wife syndrome.”

It was very hard not to ask these doctors if they’d heard of “supercilious jerk” syndrome.

I was in daily pain, and continually begging the Lord for answers. My husband stood by my side. He never faltered. At some point, I stopped asking for answers, and started asking for contentment. “Give me strength for the day,” I prayed. “Let me be the best parent and wife I can be.” I reasoned that if the Lord wasn’t going to tell me what this disease was, I needed to come to peace with how to deal with it. I finally received a diagnosis through the N.I.H.   My “portion” was a chronic illness, but also a spouse who supported me through it. And after all the searching, contentment became a part of my portion, too.

Noah ran a fever yesterday that continued to climb. He woke up a little “off,” and continued to deteriorate throughout the day. When his fever reached 104, my husband and I packed a bag and headed to the doctor – who, by a great miracle – had one slot remaining for that day at 7:15 pm. Noah moaned and thrashed in the backseat until we reached her office, where she confirmed strep throat.

Noah thought his Batman gloves would deter the spread of strep...and crime.

Children with autism often feel as if their skin has been turned inside out. On any given day, there are noises, and sensations, fabrics and motions that hold the potential to set off reactions of all types. When that same child is sick, those sensations become nearly unbearable. I once lived in fear of Noah contracting anything because his screaming would rock the windows in his bedroom.

But now that my portion has included dealing with an illness of my own, I can better put myself in his position and love him more completely because I know what it is to hurt. His screams no longer frighten me, for they are often my own heart’s cry. Psalm 73:26 – “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”

Noah and I, our portions include difficulty and blessing; failing flesh, but the power of God. We have plenty of one to deal with the other, and a growing contentment in all things. Our cups overflow.

- Sarah

Filed Under: Asperger, Autism, Contentment Tagged With: ,