We recovered from the initial shock surrounding M's birth and learned how to navigate our new life. There were doctors appointments and endless therapy and hospital stays and medication and tests and countless procedures. There was researching doctors and fighting with insurance companies and raising a percocious two year old. There were challenges and set backs, but we found a new normal within the muck of it.
The years passed and the dust settled. M grew and thrived and so did we. Fears lessened and we figured out how to cope with the ones that remained. We began to shed the heaviness we'd been dragging around with us. And really, honestly, without a doubt: life is amazing.
If I am to be honest, there is a tiny piece of me, just a sliver, that feels that twinge of sadness around the time of M's birthday. It is like a weed in the garden...you pull it and discard it, but somehow it finds its way back in.
As they days lead up to M's birthday, there is a certain melancholy that exists. It is feeling haunted by the milestones that continue to elude my son. They are like a mirage....you can see them just in the distance but you cannot grasp them.
It is the gaps in development that, at times, seem to widen rather than close. It is wanting so much more for him and knowing that some things, for him, are not meant to be.
There is a shred of disappointment that in his life he has never, ever, asked for a single gift. He has never requested a particular themed party or wanted a cake adorned with whatever on-trend character little boys are into at the time. He has never had a celebration with peers and I know I will never have a flood of energetic boys decending upon my house.
When M's birthday nears, these feelings roll in and, quietly, like thick fog, surround me. I celebrate his life while grieving a loss. This is a little piece of rasing a child with special needs that is particularly difficult.
These feeling are only a small thread in the fabric of my emotion. Of course there is joy and love and peace and calm and happiness. Of course, the good far outweighs the bad.
Tomorrow M will wake and Miss J has already decided she will cook him pancakes and that we will pile into the bed to eat and watch cartoons. She has saved her money and bought him a large and ridiculously expensive single cookie on a stick and elaborately decorated with icing. She picked this knowing he would love it.
He will play outside with the dogs and we may venture to the park. His grandparents will take him out for a cheeseburger for lunch. In the evening we will meet with family and a few close friends at the beach. We'll kick a soccer ball and build sandcastles and chase the waves.
We'll put a ninth candle into his cake, grateful and acutely aware that each candle is a gift. We will allow M to eat as much cake as he wishes and we will smother his frosting coated face with kisses.
For M, the day will be perfect and during the celebration I will be reminded that a birthday is not an extensive guest list and hired entertainment and themed cakes and elaborate decorations.
I will pause and be grateful to celebrate M and all of the people who color his life. The day will be good and I will put my nine year old son to bed with a full and happy heart.
Tuesday, August 13, 2013
When The Cake Is (Bitter) Sweet (Part I)
My son M was born on Saturday, August 14, 2004.
The labor itself was uneventful but M made his debute into this world still and silent. The details get fuzzy for me. I can only remember fragments, like in a dream.
I remember the room suddenly becoming silent.
Many more people appeared in the room.
The labor itself was uneventful but M made his debute into this world still and silent. The details get fuzzy for me. I can only remember fragments, like in a dream.
I remember the room suddenly becoming silent.
Many more people appeared in the room.
There was quiet chaos.
Someone said it was a boy.
A mask was placed over M's face and air was forced into his body.
And then M was taken out of the room.
Mr. A went with him.
I lay in the bed, still bleeding, scared and alone.
They had taken M to the NICU. Apgars were poor. His lung collapsed.
There was a problem with the epidural and I had become much more numb than I should have been. Hours would pass before I was allowed to get into a wheelchair to see my son.
He was connected to wires and tubes. Machines hissed and pumped and beeped. I would not be able to hold him for another day so I held his tiny hand.
Doctors kept coming into my room to talk to me. I wasn't able to process any of it. My head hurt.
People knew I had gone to the hospital to deliver and I knew they'd be waiting to hear the news about the birth of our second child. I told Mr.A to call our parents and tell them what we knew so far. I didn't want any visitors and told him to tell everyone that.
I laid in that bed, on a plastic mattress with scratchy sheets and tried to make sense of what was happening.
On August 14th 2004, my world suddenly changed.
I became the parent of a child with special needs.
There is a sense of guilt and a bit of sadness when I think about that day. Sadness that I never got to experience a single moment of 'normal' with my son. Worry began with his first breath.
Someone said it was a boy.
A mask was placed over M's face and air was forced into his body.
And then M was taken out of the room.
Mr. A went with him.
I lay in the bed, still bleeding, scared and alone.
They had taken M to the NICU. Apgars were poor. His lung collapsed.
There was a problem with the epidural and I had become much more numb than I should have been. Hours would pass before I was allowed to get into a wheelchair to see my son.
He was connected to wires and tubes. Machines hissed and pumped and beeped. I would not be able to hold him for another day so I held his tiny hand.
Doctors kept coming into my room to talk to me. I wasn't able to process any of it. My head hurt.
People knew I had gone to the hospital to deliver and I knew they'd be waiting to hear the news about the birth of our second child. I told Mr.A to call our parents and tell them what we knew so far. I didn't want any visitors and told him to tell everyone that.
I laid in that bed, on a plastic mattress with scratchy sheets and tried to make sense of what was happening.
On August 14th 2004, my world suddenly changed.
I became the parent of a child with special needs.
There is a sense of guilt and a bit of sadness when I think about that day. Sadness that I never got to experience a single moment of 'normal' with my son. Worry began with his first breath.
And guilt that I cannot say that his birth story is a happy one.
Guilt that his birth is so unlike Miss J's. My girl, who made a slow and stubborn entrance into this world. My girl who arrived alert and wide eyed and wise. When she arrived elated grandparents cheered and Mr. A cried and I felt like I already knew my girl. When she arrived the exhaustion of a thirty one hour labor suddenly disappeared and I called everyone I knew to tell them my news. When she arrived, the joy was palpable.
Guilt that when my son was born the only emotion I felt was fear.
Wednesday, August 7, 2013
The Red Thread
A Chinese proverb says:
"An invisible red thread connects those destined to meet, despite the time, the place, despite the circumstances. The thread can be tightened or tangled, but can never be broken."
Our family recently took a road trip to the DC area, several hundred miles from our midwest home. By sheer chance, a friend of mine and her family were also going to be in the DC area at the same time, several hundred miles from her New England home. Since we would be in the same area at the same time, we set up a time and place to get together with our families and picked the National Zoo.
I met her in Kindergarten when we sat around the piano on small carpet squares while our teacher played and we sang. The carpet squares were kept stacked neatly in a corner of the room and there was only one purple one. Of course, we both wanted it. I don't remember who ultimately got to sit on the purple carpet square on that particular day, but I remember that is how we met and that is where the story of our friendship began.
We were typical childhood friends. We played at each other's homes and made forts in the woods and went sledding on the big hill behind my house and would swing on the swings at hers. We were like most girls with one small exception that came in the form of a younger girl with a head full of blond curls.
My friend's sister, younger than us and who happened to have significant special needs.
Through the years of playing in my friend's home, her sister became quite familiar to me. True, she was quite different from most little sisters I knew at the time, but I just saw her as another member of the family. `This little girl was my first personal relationship with a person with special needs. It was a positive experience that taught me that 'different' deserved equal respect and kindness and was nothing to fear.
In the fifth grade, I moved away. My friend and I kept in touch for a while, but after a few years we'd lost touch. I never forgot her and through the years wondered about her and her little sister.
A few decades later I was living 1,000 miles from my childhood home, raising Miss J and M, my own child with special needs. I turned to Facebook and found my childhood friend. We reconnected and through emails, she has been a source of support and encouragement to me. Her openness and willingness to share her experiences growing up as the sibling of a child with special needs have helped me in guiding and raising Miss J.
And then, thirty years since we'd seen each other last, we stood face to face at the National Zoo. We met each other's family and I was able to see her parents again for the first time since I was eleven.
I spoke at length with her mother. I asked her questions about what it was like when her daughters were young. I asked how she kept her sanity on the difficult days and how she handled holidays and what she felt made her a stronger mother and what she did to ensure her other children also received the time and attention they needed.
She shared anecdotes of her experiences and offered advice and encouragement and words of support. My conversation with her mothered me in a way that I needed. Many women mother, but far fewer are parenting children with special needs and can so intimately relate to the experiences that are uniquely ours.
It was the day after our return from the vacation that I read that Chinese proverb for the first time. Thirty years later I had grasped that red thread and found my friend still there on the other end.
Saturday, July 13, 2013
Splash!
This evening I took M and Miss J to the pool to cool off from a sticky July day. Much of the time was spent in the main pool until Miss J said that she would like to go on the drop slide and M said he wanted to watch her.We made our way out of the main pool and over to the slides.
The drop slide consist of a short, near vertical slide that ends several feet above the water's surface, plunging the rider into the water below. Being such a hot evening, the pool was busy this evening and a line, deep with waiting children, had formed at the drop slide.
We noticed a young man, perhaps in his late teens or early twenties, sitting at the top of the slide, waiting to take his turn. He sat, hesitating, to take the plunge. He glided his hands along the sides of the slide. He watched the water swirling around him. He peered over the edge to the water below but he did not go down.
It was apparent that he had some sort of special needs. Autism, perhaps? As he sat, his father called to him from the side of the pool, coaxing him to take his turn.
The young man continued to sit and the line of people waiting behind him continued to grow.
Finally he lost his nerve. He pulled himself awkwardly to a stand and the line of people behind him shifted and shuffled out the way so he could make his way back down the stairs.
Once at the bottom, he stood by the edge of the pool watching as one person after another dropped into the water with a splash. He watched, and then, he climbed the stairs a second time.
When his turn arrived, he seated himself again in the chute. Like the previous time, he sat.
And sat.
And sat.
Once again the line grew longer and somewhat impatient. The lifeguards seems a bit uncertain of what to do next. His father called out to him again to go.
He continued to sit.
The father called out again, growing impatient and told his son to either go or move out of the way so the rest of the people could go. Once again, the young man pulled his body out of the chute and off the slide and made his way down the stairs.
He stepped off the last step, and just as before, stayed at the water's edge to watch one person after another drop into the pool. And just as before, he made his way up the stairs for a third time.
This time I could see the slightest hint of exasperation on the father's face. I saw the annoyed looks from some of the people waiting in the line, knowing that yet again, their turn would be delayed.
Again the time came for the young man to attempt the slide. Again he sat.
And then, from the people waiting in the line:
"Come on!
You can do it!
You can do it!"
"You'll be okay!"
A small gathering of people had now assembled around the pool, everyone wondering if this young man would ever get up the nerve to tackle the drop slide. The crowd shouted to him too, "You can do it!" Some people clapped and some people cheered. The lifeguard gave him a thumbs up.
And finally..he did it. The place erupted loudly with cheers and applause. The young man emerged from under the water beaming. His father, still standing at the edge of the pool, greeted him with a high five. I watched many of the people who had been stuck waiting in line behind him come up to him with congratulations and pats on the back.
The drop slide consist of a short, near vertical slide that ends several feet above the water's surface, plunging the rider into the water below. Being such a hot evening, the pool was busy this evening and a line, deep with waiting children, had formed at the drop slide.
We noticed a young man, perhaps in his late teens or early twenties, sitting at the top of the slide, waiting to take his turn. He sat, hesitating, to take the plunge. He glided his hands along the sides of the slide. He watched the water swirling around him. He peered over the edge to the water below but he did not go down.
It was apparent that he had some sort of special needs. Autism, perhaps? As he sat, his father called to him from the side of the pool, coaxing him to take his turn.
The young man continued to sit and the line of people waiting behind him continued to grow.
Finally he lost his nerve. He pulled himself awkwardly to a stand and the line of people behind him shifted and shuffled out the way so he could make his way back down the stairs.
Once at the bottom, he stood by the edge of the pool watching as one person after another dropped into the water with a splash. He watched, and then, he climbed the stairs a second time.
When his turn arrived, he seated himself again in the chute. Like the previous time, he sat.
And sat.
And sat.
Once again the line grew longer and somewhat impatient. The lifeguards seems a bit uncertain of what to do next. His father called out to him again to go.
He continued to sit.
The father called out again, growing impatient and told his son to either go or move out of the way so the rest of the people could go. Once again, the young man pulled his body out of the chute and off the slide and made his way down the stairs.
He stepped off the last step, and just as before, stayed at the water's edge to watch one person after another drop into the pool. And just as before, he made his way up the stairs for a third time.
This time I could see the slightest hint of exasperation on the father's face. I saw the annoyed looks from some of the people waiting in the line, knowing that yet again, their turn would be delayed.
Again the time came for the young man to attempt the slide. Again he sat.
And then, from the people waiting in the line:
"Come on!
You can do it!
You can do it!"
"You'll be okay!"
A small gathering of people had now assembled around the pool, everyone wondering if this young man would ever get up the nerve to tackle the drop slide. The crowd shouted to him too, "You can do it!" Some people clapped and some people cheered. The lifeguard gave him a thumbs up.
And finally..he did it. The place erupted loudly with cheers and applause. The young man emerged from under the water beaming. His father, still standing at the edge of the pool, greeted him with a high five. I watched many of the people who had been stuck waiting in line behind him come up to him with congratulations and pats on the back.
Together and with loud exuberance, we all shared the joy of this young man's acheivement. I looked at M, who was clapping wildly and Miss J, who was cheering loudly and was grateful for them to witness the amazing good that exists in this world.
Friday, July 12, 2013
Present
The other day, I read a blog post about a woman who was cleaning out her daughter's closet. She was clearing out coats and boots and tutus and dresses and deciding what to donate and what to pack up and keep. She wrote about the hand knit blanket she brought her daughter home from the hospital wrapped in. The kimono sent from a friend in Japan. A green fairy costume.
I have been there myself..pouring over my kid's belongings trying to decide what to part with and what to store in the attic in plastic Rubbermaid containers. I have sat on the floor, undecided, about the fate of certain items and stuck on a memory of where and when my child wore the particular garment. I've held tiny dresses and socks in my hands, trying hard to remember my children ever being so small.
I have cleaned out closets too...except there is a big difference between this mother and myself.
Her daughter is dead.
She was four and it was a brain tumor. This mother has only the physical items to fit within the space of her hands where her child no longer is.
I read the post in my living room, coffee in one hand and a pile of laundry I had been trying to delay folding piled way too high on the couch beside me. It was about noon and my own girl lay sleeping in her bed, knocked down with a fever and sore throat; the latest virus that happened to be making rounds in our neighborhood. It was day four into Miss J being sick and clingy and whiney. It was day four of me growing restless and feeling cooped up and stuck in the house during a beautiful stretch of July weather after seemingly endless days of rain.
Four days and I was climbing walls. This mother fought cancer with her daughter for two years.
This morning Miss J awoke, fever free and able to talk without pain for the first time in days. M would be at summer school for the better part of the day and it would be just Miss J and I. I wanted it to count and I wanted to imprint her beautiful, healthy brain with a memory of a day spent, present, together.
"Let's go" I told her.
"Where?" she asked.
"Anywhere. Where would you like to go?"
She thought for a moment. And shyly asked,
"Do you think we can go to the beach?"
I didn't hesitate. Didn't think about laundry or dishes piled in the sink or errands that needed to be run after four days of being hunkered down in the house.
"Yes. Go get ready. After the beach, what would you like to do? Anything."
"Really? Lunch? Maybe sushi?"
We went to the beach and walked the shore. We collected shells and driftwood and seaglass. We dug holes in the sand and chased seagulls and sat on the blanket, and for a time, said nothing at all. I couldn't have wished for a more perfect moment.
We finally made it to our favorite restaurant, still sandy from the beach and our shoulders and cheeks pink from the sun. We filled up on miso soup and salad with ginger dressing and ordered more sushi than we could finish.
Miss J thanked me later.
"That was fun, mom. But...I thought you had stuff to do?"
I kissed her head.
"I did have stuff to do. Very important stuff. I needed to be with you."
Saturday, July 6, 2013
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.
Friday, April 12, 2013
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.
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.
Sunday, April 7, 2013
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.
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.
Tuesday, January 29, 2013
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.
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.
Friday, January 25, 2013
(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.
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.
Wednesday, January 16, 2013
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.
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.
Sunday, January 13, 2013
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.
Friday, December 21, 2012
Does He Get Christmas?
"Does he get Christmas?"
This was a question recently asked of me about M. The question is easy to answer, harder to explain. How much does M get Christmas? Enough.
I've written and scrapped this entry at least a dozen times. I've thought about it and hopefully this explanation will be the one I finally post.
Does M get Christmas? It is a difficult question to ask of anyone, as everyone will have a different interpretation of what Christmas is to them. The faithful will celebrate Christmas as the miracle birth of a savior born to a blessed virgin mother. Others will await the arrival of a jolly grandfatherly figure to deliver presents to boys and girls from around the globe. Families raising children in homes practicing dual religions may mesh and meld aspects from each of their respective religions together to form their own unique blended holiday celebration. Pagans will send holiday cards and atheists will decorate Christmas trees. The interpretations of what the significance of December 25th means are wide and varied, but I think regardless of who you are and what you believe, the season for most is a time of joy, togetherness, thankfulness and giving.
So to finally answer this question, perhaps not to the person who first posed it, but to myself: Yes, M completely understands our individual interpretation of Christmas. M is very much an active part of our family's holiday traditions. He is excited for the preparations and happy for the celebrations. M and Miss J bring Christmas to me as much as I hope to bring it to them. Perhaps some will see this as simplified and perhaps watered down, but for me, it is just enough.
This was a question recently asked of me about M. The question is easy to answer, harder to explain. How much does M get Christmas? Enough.
I've written and scrapped this entry at least a dozen times. I've thought about it and hopefully this explanation will be the one I finally post.
Does M get Christmas? It is a difficult question to ask of anyone, as everyone will have a different interpretation of what Christmas is to them. The faithful will celebrate Christmas as the miracle birth of a savior born to a blessed virgin mother. Others will await the arrival of a jolly grandfatherly figure to deliver presents to boys and girls from around the globe. Families raising children in homes practicing dual religions may mesh and meld aspects from each of their respective religions together to form their own unique blended holiday celebration. Pagans will send holiday cards and atheists will decorate Christmas trees. The interpretations of what the significance of December 25th means are wide and varied, but I think regardless of who you are and what you believe, the season for most is a time of joy, togetherness, thankfulness and giving.
So to finally answer this question, perhaps not to the person who first posed it, but to myself: Yes, M completely understands our individual interpretation of Christmas. M is very much an active part of our family's holiday traditions. He is excited for the preparations and happy for the celebrations. M and Miss J bring Christmas to me as much as I hope to bring it to them. Perhaps some will see this as simplified and perhaps watered down, but for me, it is just enough.
Tuesday, December 11, 2012
No Virginia, There Is No Santa Claus
The day Miss J matter-of-factly told me there was no Santa Clause, I held my breath fir a moment.
And then I exhaled a big sigh of relief.
In my circle of moms, most have come to dread this day, knowing their child is stepping further from childhood. Perhaps losing the Christmas magic. While part of me felt like I was turning my back on a fun tradition, this announcement from Miss J left me feeling like I'd been let off a very large hook.
I should mention that when Miss J declared Santa a fake, she was just three years old.
It was getting close to Christmas and Miss J and I were out running errands together. One of our stops was to the grocery store to buy ingredients to make cookies. We parked the car and as we made our way to the store, Miss J spied a Marine's "Toys For Tots" collection. She eyed the Marine in full uniform and the large box of toys. She turned to me and said,
"Oh, so there is no Santa?"
I was unprepared to hear that and sputtered and stammered and only managed to get out a surprised, "Huh?"
She repeated herself in the same matter-of-fact tone.
I looked at my girl. "Why would you say that?" I asked her.
She simply stated, "Well, if there was a Santa, there wouldn't be that, " a mittened hand pointing at the toy collection. She shrugged her tiny shoulders and proceeded into the store.
I said nothing but my mind was racing. Do I confirm this? Deny it? What do I do? I was not prepared for this! I decided not to do anything at that moment. I decided that if she wanted to pursue the conversation, she would.
Once we were in the car, she asked me for the truth. I told her. I wondered if perhaps she might cry. I kept glancing in the rear view mirror to see if disappointment had crept upon her face. The last emotion I was expecting, the one she nearly exploded with, was anger.
"You lied to me, Mommy?" She glared at me. "Why would you do that? That isn't Christmas."
I explained it to her, as best I could. I apologized for making her feel tricked and foolish. We talked about Christmas and Hanukkah and tradition and folklore and magic and joy. It was one of the most meaningful conversations I've had with her. One I won't soon forget.
Hence my sigh of relief.
Before I was a mother I'd had always wondered how I would handle Santa and the Easter Bunny with my children. Once I had Miss J, I hated lying to her. I struggle some with religion, but I have always been involved in my church and the thought of taking a religious holiday and putting such a commercial spin on it really bothered me.
Honestly, when Christmas would roll around I would wish I were Jewish. No Hanukkah folk heroes. No over the top antics. No telling my child that they would receive gifts only if they were good. No explaining why the children residing in the more desirable zip codes were bestowed more gifts while other children received dollar store junk. No trying to rationalize why some children would receive visits from Santa while those of other religions did not. (I grew up in a largely Jewish neighborhood and used to wonder, "Does Santa not like Jewish kids?" I'm happy to report that my Jewish friends survived, unscathed, without the presence of a Santa figure in their youth. None that I know of had to work that out in therapy.)
Now, after the confrontation from my three year old, I was let off the hook. No more lying. No more pretending. No more games.
I did receive some backlash from other parents when they discovered my Miss J was a non-believer. I was accused of forcing her to grow up too fast. I was told I was robbing her of Christmas Spirit. Adults would look at her and say, "But I am a grown up and I still believe in Santa." Comments like these annoyed Miss J to no end. Imagine how much easier it would be when people asked if my kids believed in Santa to simply say, "Oh, we're Jewish. We don't do Santa."
And now that Miss J is ten do I feel like somehow the magic was lost? Would I go back and change it if I could?
No.
Not for a single second.
Is see the wonder on her face when she decorates the Christmas tree and when we make our Swedish rice pudding. She is magic when she carefully selects a gift for each family member and painstakingly wraps it. She is light when I hear her angelic voice singing the hymns at the candlelight Christmas Eve service.
And when the entire family is gathered in our little home at Christmas, with a fire roaring and a delicious meal on the table, she is joy. This is what makes my girl the happiest.
And then I exhaled a big sigh of relief.
In my circle of moms, most have come to dread this day, knowing their child is stepping further from childhood. Perhaps losing the Christmas magic. While part of me felt like I was turning my back on a fun tradition, this announcement from Miss J left me feeling like I'd been let off a very large hook.
I should mention that when Miss J declared Santa a fake, she was just three years old.
It was getting close to Christmas and Miss J and I were out running errands together. One of our stops was to the grocery store to buy ingredients to make cookies. We parked the car and as we made our way to the store, Miss J spied a Marine's "Toys For Tots" collection. She eyed the Marine in full uniform and the large box of toys. She turned to me and said,
"Oh, so there is no Santa?"
I was unprepared to hear that and sputtered and stammered and only managed to get out a surprised, "Huh?"
She repeated herself in the same matter-of-fact tone.
I looked at my girl. "Why would you say that?" I asked her.
She simply stated, "Well, if there was a Santa, there wouldn't be that, " a mittened hand pointing at the toy collection. She shrugged her tiny shoulders and proceeded into the store.
I said nothing but my mind was racing. Do I confirm this? Deny it? What do I do? I was not prepared for this! I decided not to do anything at that moment. I decided that if she wanted to pursue the conversation, she would.
Once we were in the car, she asked me for the truth. I told her. I wondered if perhaps she might cry. I kept glancing in the rear view mirror to see if disappointment had crept upon her face. The last emotion I was expecting, the one she nearly exploded with, was anger.
"You lied to me, Mommy?" She glared at me. "Why would you do that? That isn't Christmas."
I explained it to her, as best I could. I apologized for making her feel tricked and foolish. We talked about Christmas and Hanukkah and tradition and folklore and magic and joy. It was one of the most meaningful conversations I've had with her. One I won't soon forget.
Hence my sigh of relief.
Before I was a mother I'd had always wondered how I would handle Santa and the Easter Bunny with my children. Once I had Miss J, I hated lying to her. I struggle some with religion, but I have always been involved in my church and the thought of taking a religious holiday and putting such a commercial spin on it really bothered me.
Honestly, when Christmas would roll around I would wish I were Jewish. No Hanukkah folk heroes. No over the top antics. No telling my child that they would receive gifts only if they were good. No explaining why the children residing in the more desirable zip codes were bestowed more gifts while other children received dollar store junk. No trying to rationalize why some children would receive visits from Santa while those of other religions did not. (I grew up in a largely Jewish neighborhood and used to wonder, "Does Santa not like Jewish kids?" I'm happy to report that my Jewish friends survived, unscathed, without the presence of a Santa figure in their youth. None that I know of had to work that out in therapy.)
Now, after the confrontation from my three year old, I was let off the hook. No more lying. No more pretending. No more games.
I did receive some backlash from other parents when they discovered my Miss J was a non-believer. I was accused of forcing her to grow up too fast. I was told I was robbing her of Christmas Spirit. Adults would look at her and say, "But I am a grown up and I still believe in Santa." Comments like these annoyed Miss J to no end. Imagine how much easier it would be when people asked if my kids believed in Santa to simply say, "Oh, we're Jewish. We don't do Santa."
And now that Miss J is ten do I feel like somehow the magic was lost? Would I go back and change it if I could?
No.
Not for a single second.
Is see the wonder on her face when she decorates the Christmas tree and when we make our Swedish rice pudding. She is magic when she carefully selects a gift for each family member and painstakingly wraps it. She is light when I hear her angelic voice singing the hymns at the candlelight Christmas Eve service.
And when the entire family is gathered in our little home at Christmas, with a fire roaring and a delicious meal on the table, she is joy. This is what makes my girl the happiest.
Monday, December 10, 2012
Get Out Of My Uterus.
My uterus is not something I usually discuss with the general public. I do not ask other women about their uterus or if and how they intend to use it. Call me old fashioned.
I recently had an exchange with another person. It went something like this:
Random Person: "I heard a rumor you were expecting. Is it true?"
Me: "Um. No."
Random Person: "Oh good, because I am sure you already have enough on your plate."
Whoa! Was I really a just a part of this conversation?
I wish I had a pithy response. I wish I had been quick with a witty retort. Instead I just stood there, unsure of what to say. My mouth was probably hanging open. I fumbled through the awkward moment and left the scene. I should add that this person is not a stranger and I do not think this person made the comment with the intention of being hurtful. Sometimes people mean well and the words come out all wrong.
I thought about this quite a bit and came up with some general conversational ground rules:
Rules
#1. Unless you actually see a baby physically emerging from a woman, never ask if she is expecting. Just don't. Trust that if said woman is pregnant and wants you to know, SHE WILL TELL YOU. *
#2. If you forget Rule #1 and ask anyway, do not let out a sigh of relief and say, "Oh good!" if the assumed-to-be-pregnant woman answers that she is not expecting. Hide your shock/relief/dismay and bite your tongue. Bite until it bleeds, if you must.
And #3...this is a big one for me: If the assumed-to-be-pregnant woman is also the mother of a child with special needs, please refrain from comments such as, "You already have enough on your plate."
Telling me that I have 'enough on my plate' (which I will automatically assume is a direct reference to my child with a disability) is a euphemism for, "You are overwhelmed/overextended/unable/unwilling to take on any more." It's an insult dressed up in pretty clothes.
Comments like this take me from zero to defensive in about a half a second. Let me share three facts:
#1. What is on my proverbial plate is my business. I've got it covered. Trust me here.
#2. If you really must know, yes M is a portion of my plate, but he is not the entire plate. Remember I am also parenting a preteen girl with a vein of snarkiness that runs deep through her prepubescent body.
#3. I am a mother. A full plate goes with the territory whether you have one kid or ten, young or grown, typically developing or those who have a long list of special needs. Full plates and mothers have gone hand in hand since the dawn of time. Look at Eve. She had some intense stuff to deal with.
Please don't look at me and assume that I cannot handle more children or that I would not welcome more children into my life. I can and I would. And no, I am not expecting.
For the moment I am happily parenting two quite imperfect children whom I happen to love with every fiber of my being. And I am very grateful that they love me and all of my imperfections.
Thursday, November 29, 2012
The Write Time
This blog, this story of mine, will celebrate a milestone in a a few short days. This blog will turn one year old.
I stopped writing over the summer, just before M celebrated the milestone of his eighth birthday. There was no long pauses between posts. Entries came at a regular pace. Stopping was sudden. Abrupt.
I stepped away from the keyboard for a few reasons. My main reason for stepping away from this blog was that I was unsure of myself. I wondered if the blog had grown old. Stale. Flat.
Maybe it didn't feel natural. Maybe it felt forced. Maybe it wasn't the right time.
I never wanted the story of M to be a sob story...because certainly is not. I want this story to be an open, raw, honest portrait of what this life is like. I want to show the beauty, the fear, the challenges and the joys that all go along with raising a child with significant special needs.
As I took a break, I heard two things from people. The first was, "Are you okay? Is everything alright? You haven't written in a while. Why?" (Yes, I am okay and all is well.) The second was, "I miss reading your blog."
People missed reading about M. That pleased me because I want to share his story. I want people to get to know M through my words.
I am pleased that people want to read, because I do want to write and I have so much more to share. For me, it is 'the write time' once again.
Thursday, July 19, 2012
Snap.
I stood at the kitchen sink washing containers from Miss J and M's lunch boxes. As I did, I watched my children playing in the backyard. Miss J was swinging on the rope swing. I could hear her calling to her brother, "M, watch me!" as she would leap up, clutching the rope as she glided through the air.
M ignored her. He was busing pulling leaves from the bushes and trees.
"M!" Miss J called again, "Would you please watch this?"
"No" M replied flatly.
Miss J walked over to M, yanked the collection of leaves from his hand and threw them on the ground.
M began to cry. Loudly. Miss J stomped off and pouted.
Thankfully, at the same moment, I had finished the dishes and the burgers I had on the grill for dinner were done cooking. I plated the food and called the kids to the patio for dinner.
M dove into his meal. Miss J picked at hers, making no effort to hide her irritation with her brother.
"Please eat your dinner." I said, hoping she would catch the "I'm-tired-and-not-in-the-mood-for-this-now" edge in my voice.
There was tension in her face. Her cheeks were red and tears brimmed precariously at the edges of her eyes. I knew that one blink would send the first of many tears streaming down her face.
She moved her pasta around her plate with her fork, putting nothing in her mouth.
"What's the matter?" I asked.
Miss J stared me down.
"I'm sick of him!" she spat. "I tried to get him to play with me and he wouldn't. I wanted to show him my new trick on the rope and he wouldn't look. He's more interested in the stupid leaves than playing with me! I just want a normal brother. Or NO brother. I am so sick of THIS brother."
It had been a long day. Mr. A had been working late each evening and I had been charged with the evening routine for several nights in a row. This kids were tired and crabby and so was I. The intense heat and humidity wasn't helping, either. My patience was wearing thin.
I stared back at my daughter, prepared to serve up one of many speeches that were ready to go on my tongue. I could give her the "Who-Are-You-Fooling-This-Could-Be-So-Much-Worse" speech or my "Do-You-Think-He-Asked-To-Be-Born-This-Way?" speech or even the "What-If-You-Were-The-One-With-Special-Needs?" speech.
I was ready to lash at her and tell her that everyone in the family had already watched her do her rope trick and that we were tired of it and that she didn't need a constant audience.I was ready to tell her that if her brother didn't feel like playing with her, so what? Play on your own or go find a friend to play with. I wanted to tell her that she could be really annoying at times too.
I wanted to tell her that there were people in the world with bigger problems and that she should thank her lucky stars that she had a roof over her head, clothes on her back and food in her mouth. I wanted to tell her she was better off than most.
I really wanted to lay into her with the classic, "Quit your crying or I will give you something to cry about!" line.
I didn't say any of that. I gathered plates and slammed down forks and began to make my way into the house.
I quietly said to her, "Yes, you are so right. I will find a home for your brother so that you are not inconvenienced or upset or embarrassed by him. Okay? Will that make you feel better? I'll just get rid of him so you won't have to deal with it."
Not my proudest parenting moment.
I understand where she is coming from. I know she loves her brother but that she also wishes she had a sibling she could truly play with and talk to. I know she is grateful for what she has and understand that living with a sibling with special needs constantly spins her world in different directions. I know her patience is not limitless.
I should have told her all of this, but my own irritation and fatigue were wearing me down.
Instead I left the table, my fingers trying to rub away the headache that was working its way into my skull.
To the people who feel they know me and say, "You're always smiling! You have such a positive attitude!" No, not always. I bark and I bite and I break.
M ignored her. He was busing pulling leaves from the bushes and trees.
"M!" Miss J called again, "Would you please watch this?"
"No" M replied flatly.
Miss J walked over to M, yanked the collection of leaves from his hand and threw them on the ground.
M began to cry. Loudly. Miss J stomped off and pouted.
Thankfully, at the same moment, I had finished the dishes and the burgers I had on the grill for dinner were done cooking. I plated the food and called the kids to the patio for dinner.
M dove into his meal. Miss J picked at hers, making no effort to hide her irritation with her brother.
"Please eat your dinner." I said, hoping she would catch the "I'm-tired-and-not-in-the-mood-for-this-now" edge in my voice.
There was tension in her face. Her cheeks were red and tears brimmed precariously at the edges of her eyes. I knew that one blink would send the first of many tears streaming down her face.
She moved her pasta around her plate with her fork, putting nothing in her mouth.
"What's the matter?" I asked.
Miss J stared me down.
"I'm sick of him!" she spat. "I tried to get him to play with me and he wouldn't. I wanted to show him my new trick on the rope and he wouldn't look. He's more interested in the stupid leaves than playing with me! I just want a normal brother. Or NO brother. I am so sick of THIS brother."
It had been a long day. Mr. A had been working late each evening and I had been charged with the evening routine for several nights in a row. This kids were tired and crabby and so was I. The intense heat and humidity wasn't helping, either. My patience was wearing thin.
I stared back at my daughter, prepared to serve up one of many speeches that were ready to go on my tongue. I could give her the "Who-Are-You-Fooling-This-Could-Be-So-Much-Worse" speech or my "Do-You-Think-He-Asked-To-Be-Born-This-Way?" speech or even the "What-If-You-Were-The-One-With-Special-Needs?" speech.
I was ready to lash at her and tell her that everyone in the family had already watched her do her rope trick and that we were tired of it and that she didn't need a constant audience.I was ready to tell her that if her brother didn't feel like playing with her, so what? Play on your own or go find a friend to play with. I wanted to tell her that she could be really annoying at times too.
I wanted to tell her that there were people in the world with bigger problems and that she should thank her lucky stars that she had a roof over her head, clothes on her back and food in her mouth. I wanted to tell her she was better off than most.
I really wanted to lay into her with the classic, "Quit your crying or I will give you something to cry about!" line.
I didn't say any of that. I gathered plates and slammed down forks and began to make my way into the house.
I quietly said to her, "Yes, you are so right. I will find a home for your brother so that you are not inconvenienced or upset or embarrassed by him. Okay? Will that make you feel better? I'll just get rid of him so you won't have to deal with it."
Not my proudest parenting moment.
I understand where she is coming from. I know she loves her brother but that she also wishes she had a sibling she could truly play with and talk to. I know she is grateful for what she has and understand that living with a sibling with special needs constantly spins her world in different directions. I know her patience is not limitless.
I should have told her all of this, but my own irritation and fatigue were wearing me down.
Instead I left the table, my fingers trying to rub away the headache that was working its way into my skull.
To the people who feel they know me and say, "You're always smiling! You have such a positive attitude!" No, not always. I bark and I bite and I break.
Wednesday, July 18, 2012
The Walk.
While many kids are swimming in pools or attending camp or lounging around on lazy summer days, M attends summer school. Three hours per day, five days per week for five weeks. On days where Miss J goes to day camp and plays with friends and eats her fill of popsicles, M practices his math and reading skills.
I have no guilt about this since school is something that M has always loved. M loves the company of his peers and the attention of his teachers and therapists. When you ask him what he enjoys about school, he will smile and tell you, "doing work."
M loves going to school so much that there have been tears shed on weekends and school breaks because he misses school.
Each day, I drive M to school. I purposely park a little further away than necessary so that M may get a morning walk in. His excitement builds as we walk and he sees the school buses pulling in to drop off other children. I hand him off to his aide and kiss him goodbye and tell him I will see him later.
We do this every day.
As I held M's hand, I watched the other children run past us on foot or on zip by on scooters. I saw children and running and laughing and heading to school without their mothers holding their hands to keep them from tripping and landing in the street.. It was a little jab in the heart. Not because I don't enjoy walking with M to school...I do....I would just love to see M doing these everyday tasks on his own. Without need for help.
I got an idea in my head and talked to the crossing guard and M's aide. I told them that the next morning, I would attempt to let M walk the short distance to the school on his own. I would stand at the end of the street and watch M walk to the crossing guard. She would cross him and his aide would be waiting for him on the opposite side of the street.
It sounds simple enough, but for M, this was a huge challenge. For one, M is not exactly the most steady boy on his feet. Add to that a backpack filled with lunch and swim gear and he has to adjust for the added weight.
M must walk about a hundred feet on his own. Again, this is a challenge as M loves to stop and examine every stick and pebble along the way. Unaware of the laws of physics, M will often forget about the pack on his back and bend over to pick up a treasure, propelling the backpack forward and sending M flying to the ground. In order for M to walk, on his own, safely, he must remember not to stop to pick things up.
He must also remember not to speak to everyone he meets along the way. M has no regard for strangers. To him, everyone is a friend. He thinks nothing about stopping every random person for conversation and a possible hug.
And finally, M must be able to navigate the sidewalk with his limited vision. Poor vision and zero depth perception make it difficult for M to discriminate between the sidewalk and the street, making it easy for him to loose his footing and slip off the sidewalk.
That short, seemingly simple, walk presents many obstacles.
The next day came and I stood at the corner and said my goodbyes there. I kissed M and reminded him of his new task. He looked at me and smiled.
"I go by myself. Not pick up sticks. Not fall down." He told me before turning and walking away by himself.
He stopped a few times along the way to see if I was still watching.
"Mama?" he'd ask, as if he was unsure of why he was alone.
"Keep going, bud. Keep walking to Miss G."
M turned again and continued on.
He wobbled a few times, but he did not fall. He did not stop to pick up sticks and he did not talk to anyone until he reached Miss G, the crossing guard. Though I was standing quite far back, I could hear his hearty, "Hello, friend!" She crossed him safely and his aide was there to greet him on the other side.
M turned to wave to me.
It may seem small. It may seem simple. But in our world, this is HUGE.
I have no guilt about this since school is something that M has always loved. M loves the company of his peers and the attention of his teachers and therapists. When you ask him what he enjoys about school, he will smile and tell you, "doing work."
M loves going to school so much that there have been tears shed on weekends and school breaks because he misses school.
Each day, I drive M to school. I purposely park a little further away than necessary so that M may get a morning walk in. His excitement builds as we walk and he sees the school buses pulling in to drop off other children. I hand him off to his aide and kiss him goodbye and tell him I will see him later.
We do this every day.
As I held M's hand, I watched the other children run past us on foot or on zip by on scooters. I saw children and running and laughing and heading to school without their mothers holding their hands to keep them from tripping and landing in the street.. It was a little jab in the heart. Not because I don't enjoy walking with M to school...I do....I would just love to see M doing these everyday tasks on his own. Without need for help.
I got an idea in my head and talked to the crossing guard and M's aide. I told them that the next morning, I would attempt to let M walk the short distance to the school on his own. I would stand at the end of the street and watch M walk to the crossing guard. She would cross him and his aide would be waiting for him on the opposite side of the street.
It sounds simple enough, but for M, this was a huge challenge. For one, M is not exactly the most steady boy on his feet. Add to that a backpack filled with lunch and swim gear and he has to adjust for the added weight.
M must walk about a hundred feet on his own. Again, this is a challenge as M loves to stop and examine every stick and pebble along the way. Unaware of the laws of physics, M will often forget about the pack on his back and bend over to pick up a treasure, propelling the backpack forward and sending M flying to the ground. In order for M to walk, on his own, safely, he must remember not to stop to pick things up.
He must also remember not to speak to everyone he meets along the way. M has no regard for strangers. To him, everyone is a friend. He thinks nothing about stopping every random person for conversation and a possible hug.
And finally, M must be able to navigate the sidewalk with his limited vision. Poor vision and zero depth perception make it difficult for M to discriminate between the sidewalk and the street, making it easy for him to loose his footing and slip off the sidewalk.
That short, seemingly simple, walk presents many obstacles.
The next day came and I stood at the corner and said my goodbyes there. I kissed M and reminded him of his new task. He looked at me and smiled.
"I go by myself. Not pick up sticks. Not fall down." He told me before turning and walking away by himself.
He stopped a few times along the way to see if I was still watching.
"Mama?" he'd ask, as if he was unsure of why he was alone.
"Keep going, bud. Keep walking to Miss G."
M turned again and continued on.
He wobbled a few times, but he did not fall. He did not stop to pick up sticks and he did not talk to anyone until he reached Miss G, the crossing guard. Though I was standing quite far back, I could hear his hearty, "Hello, friend!" She crossed him safely and his aide was there to greet him on the other side.
M turned to wave to me.
It may seem small. It may seem simple. But in our world, this is HUGE.
Tuesday, July 17, 2012
Mother Doesn't Always Know Best.
I stood in M's room, putting away a stack of laundry. As I glanced around, I decided that M's room needed a make over. The dresser which held M's clothes was leftover from Mr. A and I's newlywed years. It is a cheap piece from Ikea and it was not aging well. The drawers were constantly stuck and one wobbly leg threatened to break away from the piece entirely.M had outgrown the chair he'd received as a toddler. The chair sits low to the ground, making it difficult for M and his long legs to stand up out of. His quilt, also from the toddler years, has been through dozens of wash cycles and was beginning to fade and fray at the edges.
Yes, M's room needed help.
I purchased a new quilt. It is cotton with stripes of rich navy, brick red, ecru and brown. It is handsome and is well suited for a boy who is turning eight. I stripped and refinished a dresser that once belonged to M's great-grandmother in a dark satin navy finish. I happened upon a wonderful vintage chair at a garage sale constructed of solid wood with sturdy arm rests that will be easy for M to get in and out of.
While M was away at summer school one day, I got to work on the room. I rolled on a coat of soothing taupe paint and moved in the new dresser. I switched the bedding and organized the bookcase and toys. M has recently developed a fear of the dark, so I placed a funky lava lamp on the dresser to serve as a fun night light. Since M's vision is so poor, I was mindful to keep everything in the same spot so that he would be able to navigate the room easily. I managed to finish putting the room together before M was due to arrive home.
I brought him into his room. He smiled and told me he liked it. He noticed the new dresser and immediately went to lay down on his new bedding. He was happy.
That night, I settled M into his bed and turned out the lamp and switched on the lava lamp. M freaked out.
"No light!" he screamed. "Turn off!"
I turned off the light.
He screamed again, "Too dark! Light on!"
I switched the light on again.
M continued to cry.
"Move that out!" he cried, pointing to the newly painted navy dresser. "I want mine!"
He tossed the pillow with the new sham to match the quilt on the floor. "No pillow!"
This was unusual for M. M has always been a great sleeper. Unless he is sick, I rarely hear from him once I have turned out his light.
This wasn't a tantrum or the antics of a child trying to avoid bedtime. Tears continued to stream down M;s face and it was apparent the sudden changes I had created in his environment had been too overwhelming for him. I'd sprung too much change on him and had not respected his space.
I'd looked at the room and saw a tastefully decorated space for a little boy. I saw modern color combinations and vintage pieces organized in harmony together.
M saw a dresser that was not his. He noticed a familiar chair was missing. There was a different wall color and a new light that glowed an eerie orange. The quilt that I had tossed aside for being faded and shabby was interpreted by M as comforting in the well worn softness of the cotton and familiar in the scent of laundry detergent that clung to the fabric. The change stripped comfort and familiarity from M and brought uncertainty and anxiety.
Mother doesn't always know best. There is still more I need to learn about my son.
Yes, M's room needed help.
I purchased a new quilt. It is cotton with stripes of rich navy, brick red, ecru and brown. It is handsome and is well suited for a boy who is turning eight. I stripped and refinished a dresser that once belonged to M's great-grandmother in a dark satin navy finish. I happened upon a wonderful vintage chair at a garage sale constructed of solid wood with sturdy arm rests that will be easy for M to get in and out of.
While M was away at summer school one day, I got to work on the room. I rolled on a coat of soothing taupe paint and moved in the new dresser. I switched the bedding and organized the bookcase and toys. M has recently developed a fear of the dark, so I placed a funky lava lamp on the dresser to serve as a fun night light. Since M's vision is so poor, I was mindful to keep everything in the same spot so that he would be able to navigate the room easily. I managed to finish putting the room together before M was due to arrive home.
I brought him into his room. He smiled and told me he liked it. He noticed the new dresser and immediately went to lay down on his new bedding. He was happy.
That night, I settled M into his bed and turned out the lamp and switched on the lava lamp. M freaked out.
"No light!" he screamed. "Turn off!"
I turned off the light.
He screamed again, "Too dark! Light on!"
I switched the light on again.
M continued to cry.
"Move that out!" he cried, pointing to the newly painted navy dresser. "I want mine!"
He tossed the pillow with the new sham to match the quilt on the floor. "No pillow!"
This was unusual for M. M has always been a great sleeper. Unless he is sick, I rarely hear from him once I have turned out his light.
This wasn't a tantrum or the antics of a child trying to avoid bedtime. Tears continued to stream down M;s face and it was apparent the sudden changes I had created in his environment had been too overwhelming for him. I'd sprung too much change on him and had not respected his space.
I'd looked at the room and saw a tastefully decorated space for a little boy. I saw modern color combinations and vintage pieces organized in harmony together.
M saw a dresser that was not his. He noticed a familiar chair was missing. There was a different wall color and a new light that glowed an eerie orange. The quilt that I had tossed aside for being faded and shabby was interpreted by M as comforting in the well worn softness of the cotton and familiar in the scent of laundry detergent that clung to the fabric. The change stripped comfort and familiarity from M and brought uncertainty and anxiety.
Mother doesn't always know best. There is still more I need to learn about my son.
Monday, July 16, 2012
Bittersweet
In a few short weeks, M will turn eight.Each birthday is a gift, a cause for celebration. And each is bittersweet.
Don't get me wrong, I am thankful for every milestone, every inchstone achieved. I am thankful for good health. For his growth and development. His happiness. I truly am.
But with that joy and celebration and gratitude comes a sadness. It is a heaviness not fully understood by those who have children who are developing typically. Other mothers who are also members of this unique sorority understand what I am saying without my need for explanation.
M's birthdays are always spent with family and close friends at his side. He enjoys the company of his favorite people at his side. He loves blowing out his candles (a skill mastered at the age of six.) and eating a giant helping of cake and licking frosting from his fingers.
Through the years, we celebrated the day with M in a variety of ways. We've explored the aquarium and have ridden go-karts and picked blueberries and dined on lobster rolls. Each year we strive to find a way to celebrate that will make M the happiest.
M is happy and content and celebrating in ways he enjoys and with the people he loves. I shouldn't ask for more. But there is that piece of me that thinks about the milestones that have continued to elude M. The gaps that widen between him and his peers. I think about how he is getting older in years and wonder if there will be an age at which his development plateaus. I look at him, impossibly tall and lean, looking older than his eight years. I wonder what age strangers must think he is. His excessive height accentuates his delays and awkwardness and I know that as he ages he is less able to blend in. As another year of childhood passes and he is edging closer to adulthood, I can't help but worry.
While we strive to make each birthday celebration memorable for M, he remains largely unaware of the reason for the celebration. He enjoys the company and the cake, but he lacks the understanding that the fuss is for him. He doesn't count down the days until his big day. He cannot tell me how old he is turning. He's never asked for a specific present. He's never requested a party or to invite other children over to celebrate. He's never asked for a particular flavor of cake or for a character theme. Planning his birthday is easy for me. Too easy. Easy in a way that makes me sad.
It is unlike Miss J, who months before her birthday is already deciding how she wants to celebrate and with who. Miss J who carefully decides upon a party theme and activities and colors and food and favors. A girl who gives thought to every detail. She is like other typical children, giddy with the excitement of turning another year older.
M is my gift. A gift, who at times, I feel compelled to tell others is not less than perfect, not a short coming, not a cause to feel cheated. M is a collection of wonderful attributes and surprises, just like any other child.
And as much as I am full of gratitude, even though I appreciate everything I have received with M, there is a vein of selfishness that runs through me that cannot help but to want for more for M. More for M and perhaps, more for me.
Don't get me wrong, I am thankful for every milestone, every inchstone achieved. I am thankful for good health. For his growth and development. His happiness. I truly am.
But with that joy and celebration and gratitude comes a sadness. It is a heaviness not fully understood by those who have children who are developing typically. Other mothers who are also members of this unique sorority understand what I am saying without my need for explanation.
M's birthdays are always spent with family and close friends at his side. He enjoys the company of his favorite people at his side. He loves blowing out his candles (a skill mastered at the age of six.) and eating a giant helping of cake and licking frosting from his fingers.
Through the years, we celebrated the day with M in a variety of ways. We've explored the aquarium and have ridden go-karts and picked blueberries and dined on lobster rolls. Each year we strive to find a way to celebrate that will make M the happiest.
M is happy and content and celebrating in ways he enjoys and with the people he loves. I shouldn't ask for more. But there is that piece of me that thinks about the milestones that have continued to elude M. The gaps that widen between him and his peers. I think about how he is getting older in years and wonder if there will be an age at which his development plateaus. I look at him, impossibly tall and lean, looking older than his eight years. I wonder what age strangers must think he is. His excessive height accentuates his delays and awkwardness and I know that as he ages he is less able to blend in. As another year of childhood passes and he is edging closer to adulthood, I can't help but worry.
While we strive to make each birthday celebration memorable for M, he remains largely unaware of the reason for the celebration. He enjoys the company and the cake, but he lacks the understanding that the fuss is for him. He doesn't count down the days until his big day. He cannot tell me how old he is turning. He's never asked for a specific present. He's never requested a party or to invite other children over to celebrate. He's never asked for a particular flavor of cake or for a character theme. Planning his birthday is easy for me. Too easy. Easy in a way that makes me sad.
It is unlike Miss J, who months before her birthday is already deciding how she wants to celebrate and with who. Miss J who carefully decides upon a party theme and activities and colors and food and favors. A girl who gives thought to every detail. She is like other typical children, giddy with the excitement of turning another year older.
M is my gift. A gift, who at times, I feel compelled to tell others is not less than perfect, not a short coming, not a cause to feel cheated. M is a collection of wonderful attributes and surprises, just like any other child.
And as much as I am full of gratitude, even though I appreciate everything I have received with M, there is a vein of selfishness that runs through me that cannot help but to want for more for M. More for M and perhaps, more for me.
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