In the spirit of Real Life Comes First: I’ve learned that one person can only do so much. The good news is that it’s all good stuff.
In the spirit of Real Life Comes First: I’ve learned that one person can only do so much. The good news is that it’s all good stuff.
If youre going to wash your face, its a good idea to take off your glasses first.
Where the Wild Things Are, In the Night Kitchen, and Chicken Soup with Rice are some of the most playful, insightful, inspirational childrens books Ive ever read. When Maurice Sendak died earlier this month, it all came rushing back. The creatures in Where the Wild Things Are are both the most gentle and the most ferocious monsters of my dreams. Ive been Max: Let the wild rumpus start, his mother: you wild thing!, and those precious wild things themselves: Well eat you up, we love you so!
Maurice Sendak didnt write books to club children over the head with a life lesson; he wrote with joy and insight about what he saw, felt, and experienced. He played with language in a way that invited you to play along. Who doesnt love Oh my once, Oh my twice, Oh my Chicken Soup with Rice?
Sendak didnt do many book signings because he said it confused the children when he took their beloved books away and wrote in them. His favorite story involved a young fan who enjoyed the personal drawing Sendak sent him so much that he ate it. What a compliment!
In his recent interview with Fresh Airs Terry Gross on NPR, Maurice Sendak sounded like a lonely, wounded child when he talked about those hed loved and lost. He even expressed joy that he would die before the interviewer so he wouldnt have to mourn her too. His heart was raw from feeling for 83 years.
Maurice Sendak: Conventional? Nope.
A treasure? Absolutely.
[Alisa’s Note: After posting Sarah’s story about her son, Gideon, just before Mother’s Day (See May 12th), I received an email from her with this story attached. She explained that this had been “brewing in her head for some time” and recent circumstances had urged her to complete it.]
My sister used to be an art teacher at Kalamazoo Christian High School. She had the privilege of becoming a mentor to a student named Michael Pinto. Michael took her art classes his Freshman, Sophomore and Junior years and, when he got to his Senior year, he did a one-on-one special art study with her. Fours years pass so quickly and Michael graduated college bound!
A few weeks after graduation, for reasons we will never know, Michael left a party with a friend who was drunk and got in his passenger seat. His friend drove that car into a tree and Michael didnt survive. Michaels parents knew that my sister, Sheila, had a special relationship with him and, although she didnt know them very well, she agreed to speak at his funeral.
Michael had one younger sibling – a 15 year old brother named Paul. Paul has Down syndrome. And here it is. The single most ignorant (and to me abhorrent) thought that has ever crossed my mind: Why did God take the good son? There it is out in the open for me to be everlastingly ashamed of. I thought that maybe it would have been better if the son with the cognitive disability had been the one chosen to go to heaven first. Not the one with so much typical potential.
Through the years following Michaels death Sheila developed a close and special relationship with Michael’s parents and with Paul. Through Sheila I have gotten to hear about how funny, smart, stubborn and persistent Paul was and is.
Two years after Michaels death my husband and I gave birth to our first son, Quinn. Almost to the day, 3 years after that, we had our second son Gideon, who was born with Down syndrome. Two boys, 3 years apart, the oldest typical and the youngest chromosomally enhanced just like the Pinto family. God works in mysterious ways.
Cut to 4 ½ years after that – to last week and the very untimely and heart breaking death of my friend Monicas son with Down syndrome Timmy. Timmy was 12 years old and for me he was a beacon of hope and potential. When you have a baby with Down syndrome seeing older kids or adults with DS usually scares the crap out of you. Its a future you dont completely understand yet. But Timmy wasnt scary at all. I loved seeing and talking to him. He was bold, funny and confident. He could read and was a working actor. I saw Gideons amazing future potential in him.
Timmy died in his sleep of heart failure. He had had 2 heart surgeries among other various surgeries and was on his fourth pacemaker. And I suspect in my heart that friends might be thinking (just like the ignorant me) that while this is tragic, maybe it is for the best because Timmy was retarded.
Or that however sad this is now its probably a blessing in disguise because he had heart problems and cognitive and physical delays and this will be easier for his parents in the long run.
Or that at least Timmy is survived by his two typically developing sisters and it wasnt one of them.
And if you did think that even for a second how can I blame you? I did. Society does. Professionals do. The entire flipping world does. Behind closed doors. Locked away in our private thoughts. Or spoken in confidence only to our significant others.
The evidence of this is the 91% abortion rate of babies with Down syndrome after diagnosis in utero. We are taught that anything less than typical isnt valuable and is easily disposed of. But the passing of Timmy and the passing of Michael are COMPLETELY EQUAL. Timmy with Down syndrome and Michael college bound – are totally and wonderfully fearfully made completely EQUAL in Gods sight, my newly liberated sight and their parents’ sight.
I want to shout from the rooftops that I dont care how many surgeries Gideon has to have or how many years it takes him to read or how many diapers I have to change Gideons value is just as amazing as Quinns. His diagnosis was not what we expected. And Gideon our little boy is NOT what we ignorantly expected. If we had done what the 91% do and abort out of our grief and ignorance I would have lost the most amazing gift God had ever given to me. Gideon and all kids with Down syndrome are here for a reason. Down syndrome is the most commonly occurring genetic anomaly since the beginning of time. Thats not a mistake. I love and appreciate both my kids for their amazing abilities. But this article is about Gideon. And his abilities are his tenacity, his amazing ability to love without prejudice and the joy in which he approaches his life. Things that are sometimes really hard for us typical people.
So how do we change Societys perception, the unspoken thought that kids who are special needs are worth just a little less? Im not sure. But the only way I know I can help is to write about my ignorance and the child who cured me of it.
As Blaise Pascal wrote, I have made this letter longer than usual, only because I have not had time to make it shorter. (More on him later!)
Sometimes I will post in haste.
I will make mistakes.
I will say things that are not exactly true.
I will sound like your least favorite teacher.
I will sound like your mother.
Please know that it is not my intention.
I may need to repeat this on a regular basis.
We will screw up. We will drop the baby. We will leave the toddler in his diaper so long that it will slide down his leg and settle around his ankle. We will put our foot down and refuse to let our preschooler leave the house in a black negligee even though we know its his version of a Batman costume. And the list goes on….
Were human, were fallible, and we will make mistakes – some of them huge – which we will feel terrible about.
The good news is: our kids will survive and we will too.
This brings me to todays episode of parental guilt. This has been a crazy week and its only Wednesday. It doesnt look like the frantic pace will ease up much until about a week from now so I was really looking forward to a few quiet moments alone (in the car) while waiting for my oldest to finish a sax lesson.
Enter child #3. The baby. My girl. Somehow she got it in her pre-teen head that she would go with me, that she needed to spend time with me, that she couldnt survive without me.
Jealously guarding my me-time I said no.
Thats when the tears and pleading began: Ill read my book! Ill be quiet! I wont bother you!
No. (Holding firm)
I really need to go with you! Dont leave me!
Oy. More than a twinge of guilt at this point as I peeled her sobbing self off me and slid out the door. Alone.
So was it worth it? I definitely feel refreshed after just 30 minutes alone, but would I have felt just as renewed if shed been with me? Maybe.
Was she permanently damaged by my rejection? I certainly hope not. Does the fact that I spent 90 minutes leading her Girl Scout meeting earlier in the day make a difference? Who knows.
Do I still feel a twinge of guilt? Absolutely.
But the key is what that guilt motivates me to do.
Do I owe her something because I didnt take her with me? Nope. At least not in the way you might think. No toy, no article of clothing, not even a special chocolate treat will ever or should ever be a substitute for genuine affection and focused attention. A great big hug, heartfelt words of concern and an effort to participate in something important to her will go much further. I might also owe it to both of us to say no to the next project. Not to all of them, but the next one.
For now, my alone time is up. On to the next thing.
I have solved nothing but Im jumping back into my life with both feet, sure to make more mistakes, but well survive. Well survive asking forgiveness, laughing together, and refusing to give up on each other.
Creativity: that which makes people try to deep fry lettuce.
Oh No, I didnt. Someone did though. Someone from Texas of course.
Its that type of creativity that I chase after though. Its what I rely on when facing a defiant four year old or fourteen year old. Its that voice that says What if….? and How about….? Its what I hope to inspire in my staff, my preschoolers, and my own kids.
My kids are extremely creative: Sunshine, my oldest, plays saxophone, draws, writes, and creates short films. Waffles, my daughter, also plays saxophone, draws, writes, and designs her own clothes. Then theres E, my middle.
His creativity is not so obvious, but he has taught me more about creativity than anyone. When he was two, he could already think circles around me. He could take ordinary objects and use them in extraordinary ways. The little plastic table that keeps the pizza delivery box off the pizza? Good for picking your nose. A cardboard playhouse? Stick your head through the chimney and wear it.
E can look at things from every possible angle and find the best way to approach a problem. He strives to be original. When he was 5, his teacher asked the class what they were thankful for. She got the normal answers of food, toys, friends, etc. When she came to him, he didnt have an answer so she finished with the rest of the class and came back. His final answer: my second cousins.
No pat answers for that kid.
As a teenager now, he is incredibly quiet, but the deepest thinker I know. His interests include fencing, archery, and falconry; he has seriously contemplated what it takes to be a shepherd of sheep!
If you ask him what he thinks, be prepared to be blown away by the answer. When he came home from Summer Camp last year, I asked him what his favorite part was: Reading the book of Revelation down by the creek, he says. Boom.
So, while hes the less obvious choice of all my kids, E gets my vote for Most Likely to Deep Fry Lettuce.
I confess, Im seduced by books. I always O.D. at the library.
So I pile books up beside my bed and they wait for me each night as I fall into bed, usually too tired to read more than a page. But their presence comforts me.
So whats there now?
(Did I mention I love lists?)
Its going to take me awhile to plow through these, Ive been working on some of them for months. Wonder what Ill curl up with tonight…
Bouncing a Super Ball in an elevator may sound like a good idea, but it isn’t.
Its amazing how little time I spend in silence.
I know, its not really silent there are cars going by and an occasional bird chirping, but its close enough. Technically, the silence is also being disturbed by the scratching of my pencil on this paper. The loudest sounds I can hear right now are inside my head. My thoughts are hurling themselves around, trying to get out somehow.
I wonder what they would be doing if Id remembered to charge my ipod?
Would the beat have distracted them or would the lyrics have sent them off on a tangent? Would that have been worse than whats happening now? Or better? Or just…different?
What I do know is that if Im going to commit to this blogging thing, and I am, Im going to be spending a lot more time trying to capture those thoughts. If silence sends them sliding out onto the paper – Bring It On!
Now, because I live in a two bedroom apartment with four other people and a dog, I may need to get creative so lets admit up front that I wouldnt be the first mom who locked herself in the bathroom for some peace and quiet.
Creativity doesnt scare me. Wondering what happened to all those thoughts I didnt pay attention to does.