Dreaming

Can you guess what he's dreaming about?

The Blessing of Tragedy

I have a confession to make.

There is a good chance that I would have been disappointed for a very long time with my baby girl if not for the tragedy of the sixteen weeks I spent aching to know if she would live.

Before her, I had given birth to two "perfect" boys. Two boys who grew and developed on or ahead of schedule. Two boys whose every moments of life were celebrations of the miracles of babyhood. Every milestone they reached reinforced my feelings that I had created two of the most talented and brilliant people ever to be born. I was so blessed I thought.

Then came along a baby girl with Down syndrome and the world as I understood it came to a crashing halt. Who will ever love this person I asked myself silently and my husband aloud. What will become of her?

I could not see the future for my eyes were clouded by the confusion and sorrow in my heart.

Hours after her birth they whisked her away to the NICU bootcamp and for the next three weeks getting her to eat enough to come home became my number one priority. She could not cooperate... a faulty baby who could not latch on, who gagged on the bottle or fell asleep after three swallows. She can’t even eat my brain screamed at me on and off all day, each day. What will become of her? My heart sank deeper into a despair fueled by fear, anger, and shame.

And then the Lord God reached down and slapped me so hard my head spun.

Congestive heart failure. An echocardiogram revealed a life-threatening condition called a coarctation of the aorta. Oh, I had known, been told while she was still in utero, that she had a broken heart... a complete AV Canal defect that would require open heart surgery at around six months old but this new development meant an immediate surgery. Her aorta would be cut apart, the narrow section removed, and then the open ends would be sewn back together. Forget bypass, instead her whole body would be deep cooled and completely shut off, a controlled thirty minutes of death.

I stopped worrying that she would not go to college or get married and started worrying that she would not live to ever sleep in her own crib.

She was transferred to a major hospital where there was a surgeon capable of making the repair. Within days of her arrival she contracted a bacterial infection that ripped through her kidneys, blood system, and brain.

Still though, like an ancient pharaoh, there was a part of my heart that was hardened to the idea of Down syndrome. A very soft ugly whisper in my mind asked, would it be better for her to die? After all, what will become of her?

I’m guessing by that point God was pretty disgusted with me. He took my hand and walked me through a sorrow-filled hell on Earth. He showed me dying babies. He showed me parents who were hurting perhaps worse than I was. He showed me many things that are harder to accept than Down syndrome.

As she lay in the hospital, my boys turned two and five. Life went on without me. Summer gave way to Fall and the wild things outside prepared for their long sleep. Death outside, death inside. Death wormed its way into my heart. I thought about how there is just one second between the hope for tomorrow and the finality of death today. That second stayed with me for weeks. It changed me. Forever.

As I write this, the floor above me is bang bang banging as she jumps like mad in her Jumperoo. I hear her squeals of delight. The question, “What will become of her?” now holds the promise of wonderful things. She is alive, do you hear me? Alive!

And that is the greatest blessing of all.

Umm, Yum Yum Yum

I like to watch my children eat. Not candy or cake, no not sticky or dried-up things.

I like to watch them eat strawberries, watermelon, and icy popsicles. Their little bodies maneuvering however necessary to get a tasty chunk captured and stuffed into place. The juice dripping over lips and down chins. Their eyes lighting up, perhaps fueled with the frenetic energy generated by their taste buds.



I feel great pleasure as I watch.

Sometimes it is a guilty pleasure as I can’t help but think how many children in the world have hardly even a bowl of rice to eat each day while my children eat fresh fruits, vegetables, and treats.



Sometimes it is a confused pleasure as I wonder why I am obsessed with watching them as they devour morsels of egg salad sandwiches and spoonfuls of peanut butter. There is always a bit of the food that gets waylaid and ends up decorating their faces like some artist’s masterpiece. I don’t remind them to wipe it off.

Sometimes it is a horrified pleasure as I watch them use two hands to speed up the process, and elbows to protect their treasure from one another, like junkies.



When my oldest son was just three he used words like delicious, scrumptious, delectable, succulent, tasty, and luscious, and of course, yummy. It became a bit of a game coming up with a string of adjectives whenever he ate something enjoyable.



I think the draw for me might be because my children like to eat. They don’t worry about getting food on their fingers or chins. They aren’t distracted by making meal time conversation. They don’t feel compelled to avoid choosing the biggest berry out of politeness. They aren’t trained yet to eat the things they like the least first.



I realize I am making them sound a bit like wild dogs pouncing greedily on their prey but... Well, maybe so. Maybe it is the naturalness of it that I am so enthralled by.


Picture credit... I don't know who the artist is but my friend Dan bought this painting. I'll bet his wife is thrilled.

Now That's Talent

My what prehensile feet you have... The better to grab your smile with, she said.

Snapshot

Over the phone, a long distance connection, I told my father that the baby I was carrying, my third and last, most probably had Down syndrome.

His response was simple and heavy. “That stinks,” he said. I felt his words, the weight of his disappointment with a hint of frustration, the kind a parent suffers when they can’t fix your boo boo for you. So much wrapped up tightly in those two words. I cried and cried. Not because he said it, but because I felt it so strongly. It did stink. In fact, it sucked.

When my baby’s body came bursting out of mine and popped to the surface of the water into my waiting arms, I saw it. There was a chunky roll on the back of the neck. “Down syndrome,” it whispered to me. Two words. I did not cry when I heard them.

I refused to cry in front of the strangers who put ointment in her eyes and vacuumed out her nose. Strangers who pretended not to see what could not be missed.

My husband was snapping pictures. Over and over I heard the clicking. It was his job and he did it well. There were so many pictures... but they all said the same thing... Down syndrome. I grew tired and sad looking at them.

More and more pictures were taken but that tiny voice would not be silenced. I could not email these pictures to friends and family. They all knew of course but they had not seen. There is a difference.

Eventually I got a couple of shots that were hushed. By then I was distracted by other worries. Would she find the strength to eat and come home? Days rolled together into weeks and her body weakened. The neonatologist put her on a fluid restricted diet and started pumping lasix, a diuretic, into her. She did not gain weight.

What do you say when you first see someone’s new baby who has Down syndrome? Aside from the standard platitudes there was the surprising, “She doesn’t look like it.” I didn’t know how to take that. I didn’t want her to look like it I suppose... after all, isn’t that why I took one hundred pictures to get one that I could send around? But hearing that upset me.

Over the weeks I realized why. The less she looked like it, the closer she came to dying. She was in an induced failure to thrive, fighting blood sepsis and meningitis, and chugging along on a broken heart and a constricted aorta. The space where the long gone fat roll had occupied now whispered, “I'm dying.”

I could have let her die. In my heart and mind, I could have let her go. But I did not. Day after day I watched over this tiny stranger who was my baby and prayed for her to live. I’ll take the fat roll and the different looking pictures. I’ll take the Down syndrome. I’ll take it all, just give me my baby alive.

She is who she is. Now I see that. Now I accept that. And guess what? It doesn’t stink. Nope, it doesn’t stink at all.

Who Is Normal?

Normal, I suppose, means to conform to preset cultural expectations. But who is capable of this in all areas of their existence and if you strike out in any area do you become abnormal? Does it take a certain amount of misses to get that label?

Here is an interesting view of our society... a few facts about we, the people, who find ourselves creating the ideology of a normal life...

One in every 31 American adults, or 7.3 million Americans, are in prison, on parole or probation.

52 people in the US will die today, and everyday, from drug induced causes.

Nine of every 100 high school students has tried to commit suicide.

Somewhere between 1/4 and 1/2 of married men have cheated on their wives. About a 1/3 of wives return the favor.

735 children in the US will be physically or sexually abused today, and tomorrow, and the next day, and every following day.

One in 20 Americans have depression.

I could go on and on with this list but you get the idea. Our prescribed expectations of normal are just fantasies and culturally agreed upon standards. Because really, normal is about quantity not absolutes. The more things are a certain way, the more normalized the thing becomes. The net of normal widens with every incidence of something.

Normal people experience both joys and sorrows. Normal people make mistakes. Normal people get cancer, diabetes, and heart disease. Normal people have low, average, and high IQs. Normal people are ugly and beautiful. Some normal people are homosexual. Some normal people have red hair. Some normal people have autism. Some normal people are gifted. Some normal people have Down syndrome. Normal people are all different.

One in about 800 babies who are allowed to live have an extra 21st chromosome. For every one that lives, approximately nine are killed in the womb (though these statistics are beginning to shift in a good way). This means that the creation rate of babies with Down syndrome is really about 10 in 800, or 1 in 80 people. More common than redheads and Ferrari drivers, people with Down syndrome are actually quite normal after all.