Sunshine and Cupcakes.

I have been told, "Life is not always sunshine and cupcakes" and I do agree.  Life can be hard, frightening, challenging and, at times, cruel.

When M was born and I was suddenly the parent of a child with a considerable list of special needs, I was afraid.  Too many nights I have laid awake filled with worry about all the troubles and challenges that M would face throughout his life.

One particularly all-consuming fear was how the world would treat him.  I feared he would be teased mercilessly.  Bullied.  Taunted.  Made fun of without ever realizing he was the butt of the joke.  I imagined, at best, he would be ignored and left all alone.

I am a mother who can usually call it....but on this, I was blissfully, thankfully wrong.  In fact, it has been quite the opposite.  I can say now, that one of the blessings that has come with parenting M is being witness to the goodness and grace of people.

I have noticed that frequently, people go out of their way to do something kind for M:

The girl, one grade above M in school who is moving on to the middle school next year and wrote a letter to M telling him how much she would miss him.

M's peers who cheerfully greet M when we are out in the community or who find a way to include M in a game on the school playground or at the park.

The Santa who sat child upon child on his lap and gave each a candy cane...but who gently removed a bell from his suit and gave it to M and told him to 'always believe in Christmas'

The Amish farmer who took a liking to M and let him drive his buggy and gave him a tour of his dairy farm and gave him two helpings of ice cream. (*This one got its own post, "Mantra")

The owner of the horseback riding ranch who insisted that M be able to experience a full trail ride and did everything possible to make that happen (after I suggested that M have a simple pony ride) and  gave M (and Miss J) horse shoes...just because. (*This too got its own post too, "In the Saddle)

The barber who also volunteers at the firehouse and invited M (and Miss J and my very excited was-going-to-be-a-fireman-when-he-grew-up-but-became-an-engineer-instead husband) on a private tour of the fire station.

The zoo keeper who invited M (and Miss J) to come behind the scenes to hand feed raisins and cheerios to the lemurs.

The checker at Trader Joe's who noticed that M was fascinated by the scanner and invited him behind the register with her and let him scan our groceries.

It is the people who walk in the parades who notice M and make sure he gets one (or two, or ten) of whatever they happen to be passing out.  

It is the people who throw an extra handful of candy in his bag at Halloween.

It is the servers in the restaurants who show up at our table with complimentary ice cream or cookies.

It is the complete strangers who talk to M in check out lines at Target and hug him tight before he leaves.

And then there was today....

I took M on an outing today to a local kiddie amusement park.  During our visit I had M sit and rest on a picnic table in the shade.  A few tables over, a girl was having her birthday party and cupcakes were about to be served.  As I sat with M a woman came over and tapped my shoulder.

"Excuse me, " she began "We are about to have cupcakes.  Can you son eat them?  May I offer him one?

M answered for me, "Yes, please!" 

He sat there at the picnic table, happy to have been given a cupcake.  

I sat there watching him, happy for that gesture of kindness and surprised that a mom, busy with her own child's party, noticed a little boy sitting several tables away and took a moment from that party to invite a stranger for a cupcake.

Sometimes life isn't all sunshine and cupcakes...but thankfully, some days are.

I Love You

Last week, a mother visited the preschool classroom that I work in to read a story to the children.
Before she began reading, she held up the book for the class to see. She pointed out that the cover was bent and the pages were worn. She told the class that all of her own children had loved this book. She smiled at her son, sitting directly in front of her, and said, "We still read this one almost every night." This boy, not quite four, was the youngest of her brood of six. No wonder this book looked so battered.

The book, titled, I Love You, Stinky Face! told the story of a boy who asks his mother if she would love him if....

He were a terrible monster with great, big fangs
He were a creature who lived in a swamp
He were a skunk who smelled so awful that his name was "Stinky Face"

To each question, the mother lovingly reassures that she will always love her child.
She will love him forever.
No matter what.
She will take care of him
Be there for him under any circumstance.

As this mother read the book to a group of captivated children, I recalled when my own children were that young. When, after a bath, we would snuggle under the covers and read. When Miss J and I would have our playful banter of "I love you more than you love me!" When I smothered them with kisses and pulled their ever growing bodies onto my lap and told them that no matter how big they got, they would always be MY babies.

And now my girl, my baby, is almost eleven.

My girl who is looking for a little bit more space and a little freedom. My girl who has begun to test the boundaries and who rolls her eyes and slams doors. My girl who is less and less a little girl with each day that passes. My girl who is morphing into someone new with her own thoughts and ideas and opinions.

I wonder what the sequel to this book would be if it were written for an adolescent tween....a teenager...an adult child. As Miss J grows, if she were to come to me and say....

I failed my test
I failed the class
I was suspended
I don't want to go to college
I got drunk
I smoked a joint
I had sex
I'm pregnant
I got a tattoo
I'm giving up religion
I'm gay
I got fired
I'm getting a divorce

Will I have the courage and the sense in the midst of such a scenario to tell her I still love her? Will those words come through loud and clear, straight through my own feelings of anger, disappointment, betrayal? Will I still tell her I love her when her choices are irresponsible and do not align with my hopes for her?

It is easy to love them when they are small and sweet with chubby baby cheeks and soft skin. It is easy when they draw you pictures and give you handwritten Mother's Day cards and dandelion bouquets. It is easy when they wander into your bed with tousled hair and sleepy eyes seeking out the warmth and comfort only you can provide. It is easy when they plant sticky kisses on you and believe that you hung the moon.

It gets harder when they are sullen and moody and when they roll their eyes and let out long dramatic sighs. It is harder when homework gets blown off and the room is a mess and when they pick at the meal you've prepared or when you have to tell them, no, you cannot go out until your chores and homework are done. It is harder when they tell you that you don't understand or look at you as if you know nothing at all. It gets harder when they challenge your rules, your ways, your ideals. It gets harder when they seem to want to be with their friends more than they do with you.

And when it gets even harder, as I expect it will, I hope I never assume that she knows I love her. I hope remember to tell her in the midst of whatever unpleasant or unexpected situation she may be facing:

No matter what you say, not matter what you do...I love you.

I hope I tell her often. I hope she hears it. I hope she knows it. Always.

Walking Through Water

In just a few weeks, my girl will turn eleven.

When she was small and snug, safe within the confines of my protective womb, I imagined the type of parent I would be.

I was going to be the mother who understood all the ins and outs and nuances of her children. I would be firm, but fair. I would establish the line between parent and child, but I would be open with my children. I would hug them often, listen always and ground them when necessary. I would be calm and patient. I wouldn't yell. Or spank. Or make idle threats in moments of frustration.

I would keep a tidy and organized house. I would feed my children nutritious meals (balanced of course by the unexpected surprise of an occasional bowl of ice cream overflowing with whipped cream eaten in bed for no particular reason.) I would assist with homework and Boy Scout projects and would play board games and color for hours while balancing the house and a career.

I would not be the mom who lost the permission slip and had to ask for yet another copy, or who blew off the GirlScout cookie sale or who forgot the parent/teacher conference.

Weekends would be for outings as a family and dinners with grandparents and for listening to sermons on Sunday mornings in church. My children's friends would become a fixture in our home and we would host cookouts with friends. I would have perfect scrapbooks that would remind my children of the family vacations, Christmas, Easter, and birthday celebrations we so lovingly created for them.

I would never 'not have time' to shower and I vowed I would never leave the house in a half-hearted attempt at a pony tail or bun. I would never wear mom jeans and I would remain current on pop culture and music. I would wear sexy underwear under my clothes and would be the wife my husband adored. I would always have a flush of gloss on my lips and he would always be able to detect the soft scent of perfume in my hair.

My children would be polite and have impeccable manners. They would be witty and funny. They would be well liked by their teachers and popular among their peers. They'd respect their elders and their parents and would never dare to talk back or slam a door. (And if such occasions did arise they would be handled in a Bill Cosby-esque way and parent and child would come to a mutual understanding about respect and house rules and such offenses would never be repeated.)

Of course, they would be strong in academics and good in sports and would love practicing piano scales. Homework would never be forgotten and reports would have big capitol 'A' circled in red Sharpie across the top.

They would have clean rooms and clean teeth. They would be adventurous eaters who would never turn up their noses at vegetables. They would value hard work and would always do their best.

They'd never watch too much tv, eat too much candy, spend too much time playing video games.

As a parent, I would walk on water and my children would be amazing.

Or so I thought. Only the later half of that statement is true.

I do not walk on water.
I trudge through it. Slow and cumbersome and awkward.

I am eleven years into parenting and I am impossibly far from the view I had of my future self.

We have built a home of love and hugs and kisses, but within these walls are snarky children, parents who do yell, slammed doors and hurt feelings. Our home is neat and tidy, but laundry piles up and clutter is often hidden away in closets before company arrives. Meals are nutritious but roasts have been burned, exotic new recipes have failed to please the small ones and there is always a blue box of mac and cheese tucked away in the cabinet for they days when I cannot get it together to cook. My children have eaten ice cream or cereal for dinner...not as a special treat but due to my own parental laziness.

For one child, academics does come easy. She knows it and seems to enjoy sitting back and taking it easy. My other child is persistent and hard working, but his cognitive disability means that many of the concepts that come so easily to his peers continue to elude him.

I have lost the permission slips and have not volunteered to chaperone the class field trip and I have no idea when the PTA meetings are. I never iron and my minivan (they one I swore I'd never own) has graham crackers ground into the upholstery and white lollipop sticks stuck on the ceiling. (Not kidding.)

My son will never be a Boy Scout and he will never give the Valedictorian speech at his high school graduation. He cannot name US presidents but he can name every character on Sponge Bob (again, a show I swore my children would never watch.)

My girl is on the cusp of puberty and hormones are raging. There are days when she yells so loud I fear the neighbors will call the cops. She's told me she hates me, hates her life, hates this family and wants to run away. We've already had fights over what music she can listen to, if she should have her own cell phone and whether or not she can stay home alone. Her extreme IQ and even more extreme ADHD often make it easy for her to be misunderstood by her peers and her teachers.

And I kept the vow to myself that I would shower every day, but my hair not gets cut in sensible styles that are easy to maintain. I do not own a pair of 'mom jeans' but my the fashion choices in my closet are few and far between. My children can identify a 'really special' event approaching because that is the only time I get my nails done. When I need perfume I steal my daughter's and I think I have some lipstick in the bottom on my purse or rolling around under the seat of my car.

I am full of mistakes and frequently left wishing for a 'do-over'. I had sat awake in the wee hours after a fight with my daughter or a meeting with my son's teacher and have wondered what I could have done different. Better.

I do not walk on water. I trudge through it daily. But at least I am moving forward. And though I am far, far for the perfect vision of a mother I imagined I would be, I am there. Every single day.

Tupperware and Tree Branches.

Last year for Christmas, Mr.A and I surprised Miss J with a pet of her very own. During the weeks before Christmas I had purchased the necessary items to house and feed this little creature. On the morning of Christmas Eve, I picked up the small, buff colored teddy bear hamster I had put on hold the week before.

We have a family dinner at our house on Christmas Eve and we traditionally let the kids open a gift or two after dessert. Miss J entered the living room and was greeted by a large, plastic tote. I motioned to it and invited her to open her gift. I could see she was confused and had no idea what might be inside the large, unwrapped box. She lifted the lid and her gaze was met by two black eyes and a sweet fluffy face peering back at her. She squealed with delight and scooped up the small ball.

He was named Chester. Most mornings and every night before bed, Miss J would hand Chester to me so that I may say hello or good night to him. Chester enjoyed the many treats Miss J would give him, especially walnuts and apricots. (For which I would frequently scold Miss J and tell her to stop feeding Chester the ingredients to my morning oatmeal.) She'd bring him outdoors in the summer sun and created obstacle courses from cardboard boxes for him to navigate. Somehow, Miss J even convinced her teacher to allow her to bring Chester to the school to meet the class. It was amazing how happy a furry little rodent made Miss J.

And then, it happened.

I had sent Miss J to clean her room and reminded her to also clean Chester's cage. She screamed.

She flew into the living room where I was folding laundry. Her voice, filled with anguish. "He's dead! Chester is dead, mom!"

She fell into my lap and curled herself into a ball and sobbed. Her hair stuck to her wet cheeks, her face red, her small back heaving with each sob.

"Why mom? Why did Chester die?"

I had no answer for her.

She left the room to be alone. I found her by the cage, gently stroking the fur of her dead friend. Big tears spilled over her eyes and dripped off her chin and cheeks, wetting Chester's fur.

After she'd had some time with him, we had to decide what we would do with the body. Miss J insisted on a proper burial, but this is January in the midwest and the ground is frozen solid. (Not to mention the ice-storm that was taking place during this time of mourning.)

Ever so carefully, Chester was wrapped in Bounty paper towels and sealed him in a plastic bag. Miss J took the body outside and we walked to behind the shed at the edge of our yard. Miss J, fearing that Chester's remains would be eaten by animals, hung the bag in a tree. (My neighbors can clearly see this bag from their house and I do wander what they must be thinking.)

I stood in the freezing rain with my daughter, holding a makeshift funeral as she grieved the loss of her beloved pet. I had done the same myself at her age. I was about Miss J's age when my first hamster, Japser, went to the big wheel in the sky. I remember feeling he needed a special send-off so I laid him in a blue jewelry box I had just received that Christmas as a gift from my aunt. It had a crank in the back the you could wind up and a tiny ballerina would twirl around when you opened the lid. It played the music from The Nutcracker. I laid my hamster in the pale blue satin lining and covered him with squares of toilet paper and stored him in the chicken coop (it was winter) until the spring. My dear friend J officiated.

Other deceased pets were laid to rest in Tupperware, stolen from my mother's cupboard and lined with cotton balls and buried in shallow graves.

I feel for my girl and I ache to see her hurting. I watched her gaze at the tree branch from which Chester hung and I imagined Miss J in the future, a mother herself, doing the same with her own child. I imagine her offering comfort to her own child saying, "You know, your grammy used to bury her pets in Tupperware and I tied mine to tree branches."

We spoke a few words about Chester and shared some memories and together we headed back into the hourse.

(Im)Possible

M is eight years old. His August birthday makes him one of the youngest, if not the youngest, child in his third grade class. His IEP dictates that his day will be divided between this typical third grade class and his special education "Functional Academics" room.

Every Monday, I pull a stack of papers from M's backpack. The stack, surprisingly and wonderfully thick, is his homework to be completed during the week and turned in on Friday. The stack includes short stories with comprehension questions, vertical addition sheets, worksheets to practice time and money and handwriting exercises. Each afternoon, I sit with M at the kitchen table as he works through the stack. It is a cozy spot, tucked into a small nook of our kitchen and facing two windows that overlook our front yard. I will usually set out a cup of tea for me and crackers for M to snack on as we work. I guide him as needed and help him stay on task, but M's ability to do these works independently is increasing. I am fortunate to have a son who loves school, loves to learn and happens to be surprisingly motivated to do his work.

M and I sit together as he adds coins and tells time to the hour and half hour. He reads sentences to me and I help him with the words he unfamiliar with. I am well aware that his third grade peers are perfecting multiplication tables are devouring Harry Potter and Percy Jackson.

But take a good look at me....see beyond what you think a mother of a child with special needs might look like, and you will never see a prouder, more appreciate mother.

You see, once upon a time, not so long ago...we were told that none of this would be possible. We were cautioned that perhaps we should lower our expectations for our son. All too often conversations about M always seemed to include words like 'won't' and 'never'. Harsh words that fall hard onto a devastated parent's ears.

These lessons, while never easy, were essential. This adventure, which at times has admittedly scared the hell out of me, has made me a better mother. Today I am a mother who is wiser and more confident and I am grateful to sit with my boy at our kitchen table on a snowy afternoon watching him do what we were once told was impossible.

Unfair.

I tucked a ten dollar bill into M's wallet. It's the velcro kind, red and blue with an airplane on the front. I bought it for him years ago hoping that someday he might have a need for it.

Once per month, M and the other children in his special education class have a "community outing." Sometimes they go to the grocery store with a shopping list and pick up supplies for a cooking project, other times they might visit a local eatery for lunch. On these days I make sure to tuck his wallet into the zippered pouch of his backpack.

Today M and his classmates would be going to a diner. The purpose behind outings such as these was to learn the life stills they would need outside the classroom. The students will learn how to behave in the public restaurant setting, how to order off the menu, how to pay a bill.

I readied M for his outing. I always make sure M looks nice, but I take extra care on his community outing days. I dressed M in his dark wash jeans, his new grey striped shirt and put on his dressier brown shoes over his usual gym shoes. I gave him a spritz of his cologne and made sure his hair was brushed and gelled just the way he likes it.

I already know what he will order: a cheeseburger and fries, both smothered in ketchup. And to drink, lemonade. Possibly a milkshake.

Miss J came into the kitchen to grab her lunchbox before heading out the door to catch her bus. She noticed just one lunch box was packed and ready on the counter and asked, "Is he going out to lunch AGAIN?" She peered at the contents of her lunchbox and grimaced at her peanut butter sandwich and sighed heavily. "It is SO unfair." She said a heavy goodbye and trudged out the door.

As the door closed behind her, I responded to the empty room.

Yes, my girl, you are right. It certainly is unfair.

Unfair that only one of my children will spend a day in school, their mind challenged with information that will prepare her for college and life beyond.

Unfair that the other is being taught a life skill of how to order a cheeseburger and count change.

Snow Day!

During Winter Break, we got a decent amount of snow in our area.  Miss J asked if we could got sledding at a hill nearby.  Mr. A and I tossed sleds into the back of the truck as Miss J and M bundled up.  Sledding (well, not so much the sledding part, but climbing back up the hill) is a physically demanding task which would be a challenge for M.  I let Miss J know that our time on the hill would probably be brief.  My hope for M was three runs down the hill.  I figured that was about the amount he'd be able to handle, then he and I would head back to the truck to warm up while Mr.A and Miss J continued sledding.  I was so certain it would be a quick trip that I attempted to temper her likely disappointment with promises of hot chocolate with extra marshmallow when we returned.

We arrived at the hill and I was happy to see that M was excited to go sledding.   He'd been once before, but it proved to be too difficult and tiring a task for him.  Exhausted, he fell into the snow and refused to stand back up.  Our time on the hill that day was under five minutes.  

As M and I walked through the ice and snow, Miss J was already at the top of the hill and on her sled. Eager to follow his sister, M quickened his pace to meet her at the top of the hill.  I positioned the sled and helped him in.  Together we zipped down the hill.  As we slowed in the fresh and untouched snow at the bottom, M announced, "Again!" and made his way back up the hill.

M rode down the hill with Mr. A and with Miss J and again with me. He rode by himself and held on to the sled's rope and pulled it back up the hill all by himself.

One of the times I was riding with him and he called to me, "Don't hit the tree, Mama!"  He gave a loud belly laugh we we did.  Another time he told me, "I like this!  I like the snow!"

Needless to say, M surpassed my hopeful goal of three runs down the hill.  I stopped counting but I am guessing he made at least a dozen runs before telling me he was too tired to go again.

He amazed me.  My boy, sledding down a hill and climbing back up again and again and again.  And for a second, it almost made me forget that once upon a time  one of the 'top docs' cautioned us that M may never walk or talk.