You Would Have Been Three

The May I found out I was pregnant for the second time, I was happy. It was the right time. We were ready. The due date was January 20th - The Boy's birthday.

That August - in my 16th week - I had a missed miscarriage. 

This is an open letter to my baby in heaven: 

I don't even know if you were a boy or a girl. In my mind, I imagine you as a girl. A little girl with bobbed curls, dimpled cheeks and bright eyes. You are the little sister, Norrin asks for. I would have named you Leia. 

You would have been three years old. 

There is not a day that passes that I do not think of you. But the days in August and January are the ones that make my heart ache the most. August is when I lost you and I mourn for my loss. And January, I mourn for you and all the things you could have been. 

As I shop and prepare for Norrin's 8th birthday. I think of you. And I have to stop to catch my breath and blink my tears away. I think about how fun three can be. And what party theme you would have wanted. 

I think about how unfair my grief is to Norrin. It's hard to celebrate another year of life, when I am reminded of loss. When he sees me crying, he sits besides me and asks if I've been watching a sad movie. And I envy his innocence. He is unaware I am crying for you. 

On the 20th, I hold my tears in. It is Norrin's day and I celebrate him. When we light his candles, I think about all the progress he's made over the course of the year.  And when he blows out the candles, I make a wish for Norrin and say a prayer for you. 

While I was pregnant, people asked me if I was scared of having another child with autism. But this week as I think of you at three years old. I don't think of autism or special education or more therapists in our home. 

All I think about is how much joy you would have brought us. I think about how I would have loved tucking you in and reading you bedtime stories. I think about what an awesome big brother Norrin would have made. I think about how wonderful it would have been for Norrin to have a sibling, to have someone else in this world, someone he could depend on after I am gone. I think about all the memories and milestones we have been denied.

I think how much I would have loved to hold you, even if just once.

      

A Mother and Son Date: The B-Side

The Boy & I on our Mother & Son Date

I had this idea to have a mother and son date. The Boy and I are together all the time but our outings consist of errands, doctors appointments or shuttling him between boroughs.

On the weekends, its me, The Boy and The Husband. 

But The Boy's finally on summer vacation and I had a few days off. With no appointments or therapy on our schedule, I wanted to do something fun. Something memorable. Just us two.

If you follow us on Twitter or Instagram, our pictures look like we had a great time. And we did have a nice time but it came with more than our fair share of challenges. This post is what the pictures don't reveal about our day.

***  

We arrived at the Children's Museum of Manhattan (CMOM) shortly after opening. Within seconds, I felt unprepared and wished The Husband was there to help. The first floor was already packed with kids - many of them younger than The Boy. All running, laughing, playing.  Their parents watching from the sidelines, flipping through magazines, chatting on their phones. I followed The Boy around, hovering like I usually do.  My eyes scanning the room for exits and places he could hide.

The Boy darted from place to place, a grin from ear to ear, laughing too loudly. "Oh wow!" He yelled with much more excitement than the other 7-year-olds in the room.

We moved through the rest of the museum but none of the other exhibits excited The Boy as much as the first floor. So that's where we returned for one last run around before heading out to lunch. The room was still crowded.  But the boy was content playing on the slide. And for the first time that morning, I could sit and watch.

That's when they walked in. A group of special needs children and their aides - most likely part of a day camp respite program. Their ages must have ranged between 7 and 10, their disabilities varying.

There was one boy who caught my eye. He was overweight his belly hanging over his sweat shorts. He wore a button down shirt with only the top three buttons buttoned. And his undershirt was pulled up, exposing his large belly. I waited for one the aides to assist him, to pull his shirt down. None of them did.

I don't know why it bothered me so, but it did. I am so conscious of how The Boy looks, so aware of his appearance. It's the one thing I can control. If The Boy lifted up his shirt in public - I would have fixed it immediately. 

The aides wandered the floor aimlessly holding the hands of their kids. Not bothering to engage with them or show them around. The aides were too busy talking among themselves to bother with the children. The children were unlike The Boy, they were quiet, calm, content to be led rather than run.

Then I noticed the room got quiet. Really quiet. The packed room was suddenly empty. All the typical kids and their parents had moved on to other parts of the museum. It was just me, The Boy, the group of special needs kids and their aides. 

Was it too close to lunch? Or did those parents want distance from the kids with disabilities? It hurt too much to think about. 

Later, when I spoke to a friend about it she said "Not everyone is used to kids with special needs. Sometimes it makes people uncomfortable. They don't know how to act." 

I know this is true. I have seen the way people try not to notice us. At times, I don't know what's worse - the blatant staring or acting as if we're invisible. My sister is in her twenties and has an intellectual disability and I have seen people shy away from her (not always strangers either - friends, in-laws and members of our family).   

If The Boy was a 'typical' kid, would I have left too?

***

After lunch, The Boy and I took the bus across town. There was a large playground and The Boy wanted to go in. The playground was much bigger than any one we'd ever been. Too many blind spots, too many pyramids and tunnels - too many places to lose him.

Again, I noticed the groups of parents sitting on the benches secure knowing that when they called out a name, their kid would return.

I bribed The Boy with the promise of an ice cream so that we could leave. 

***

We walked to La Casa Azul (a book store specializing in Latino authors) and The Boy was on the verge of a meltdown. I shouldn't have taken him inside. I should have just left. Instead, I held both his hands while I browsed. The Boy wanted to leave. But I wanted to make a purchase. And I so badly wanted to buy him a book from La Casa Azul.

The whole time he kept saying "I'm going to break all the books. I'm going to spit on the floor." For a fraction of a second I let go of his hand and The Boy grabbed hold of a statue - I thought he was going to crush it. I freed the statue from his grasp, grateful I was the only one who noticed what The Boy had done.

At that point, I knew we were done. I purchased my books and left.

***

On the train ride home, The Boy asked if we could go to the playground. It was still early and since he didn't have a chance to play in the big playground, I agreed.

It was all good until a little girl (about 3 years old) started to cry. And that. Set. The Boy. Off! He always gets upset when he hears/sees another kid crying. He stopped playing and just stared at the girl. The Boy's chest started pumping and tears welled up in his eyes. "She's crying. She has to go home," he cried pointing to the girl.

I walked over to him and led him to a nearby bench. He was sobbing and shaking. The Boy climbed up on my lap, burying his face in the crook of my neck. 

I asked if he wanted to go home but he wanted to stay. I should have just taken him home. Instead I sat there cradling and consoling my 7-year-old son while the other children in the playground stared.

When he was ready to continue playing, I told him we were going to stay for 10 minutes. "Put the timer on," The Boy said. 

A group of boys were gathered around the water fountain, filling up their water guns. I have to watch whenever The Boy gets too close to the fountain. (The last time we were in the playground, he saw a kid drink water from the fountain. Thirsty, but not knowing how to work the water fountain, The Boy attempted to sip from the pool of water that hadn't drained.) The Boy, watching the kids at the fountain, ran up and splashed them all with water. I made him apologize and led him out of the park. 

The Boy burst into tears again. "I'm going to break all my toys," he repeated. "I'm going to spit." He dug his nails into my hand. 

"Stop!" I yelled. "You are not going to break all of your toys. And don't even think about spitting."

Walking up the steps to our building, I saw The Boy gathering his saliva, ready to spit. I swatted his mouth. "What did I say about spitting!?"               

He pulled his hand out of mine and started to run away. He didn't get far.

Once inside our apartment, The Boy yanked off of his shoes and threw them at the mirror. Then he spit on the floor. I yelled at him again, grabbed him by the arm and marched him to his room for a time out. I needed space. I hate losing my temper with The Boy. I know it doesn't make a meltdown any better. I know I'm not setting the example. But I am human. I'm a mom. And sometimes, I completely lose my shit.   

That's when I started to cry. If The Boy can be this challenging for me now, what will happen when he gets older? When he gets too big and too heavy for me to send him to his room. Will he 'grow out' of this behavior? Or will it get worse? 

Why, I wondered. Why did a simple outing - a day that was supposed to be fun - have to be  so difficult? Why couldn't I ignore the behavior? Why couldn't I redirect him? Why couldn't we just have one day without a major meltdown? Why couldn't I get through to him? Why did The Boy have to have autism? That's the why I hated the most. I hate myself when that why creeps in.

I thought about the group of special needs kids and their inattentive aides. The parents and kids who left the room. The kids in the playground who stared as The Boy cried. The Boy playing alone in a playground full of kids.  

Was this to be our life? Or was this just our day? Sometimes it's hard to know the difference.

All That's Left Unsaid

The last days of July and the first few of August are painful. I find myself with too much time to think. Three years ago I suffered a loss. A grief so great, it's impossible to get over. I've written about this loss, my pain. Yet there is still so much left unsaid. And the unsaid is too painful to write. The unsaid is what hurts the most. And for now it's better left unsaid.

Today I will let others say it for me.   

*** 

A miscarriage is a natural and common event. All told, probably more women have lost a child from this world than haven't. Most don't mention it, and they go on from day to day as if it hadn't happened, so people imagine a woman in this situation never really knew or loved what she had. 

 

But ask her sometime: how old would your child be now? And she'll know.
 

~ Barbara Kingsolver

So Now What?

I am home from my very last night of class. Last week I turned in my thesis.


I. Am. Done. Finally. After five years of graduate school. It's over.


All that's left is my graduation.


People keep asking me how it feels, if I'm excited. And I smile or shrug my shoulders. But I honestly? It feels anti-climatic.


"I don't think it really means anything," I told my therapist. (Yes - I've been seeing a therapist, that's for another PYHO post)


"Are you depressed?" she asked.


I could only nod because admitting to my depression is something I not ready to say out loud. 


I don't know what it means. I'm trying to be excited about it but the finality of it scares me.


The Now What has been looming for the last few months. And now it's here. 


I have spent the last five years in graduate school. Fifteen years struggling to obtain my B.A. It's been twenty years of studying, writing, registering and reading. Nearly twenty years trying to juggle work and school and in these last eight raising family. I've moved and gotten married, had a baby, had that baby diagnosed with autism, got pregnant again and suffered an overwhelming loss. I have started this blog and become a writer.


And still. I don't know what it means. I wonder what was the point? And has it been worth it. I've said all along that this degree was for me but I think deep down I wanted it to be more. And right now, it feels like it means nothing.


I will never have to register for another class or fight with the bursar or wait for a grade. I will never have to write another paper or leave work early to make it to class on time. I will never need to sacrifice a weekend to read I don't want to read. And I will never have to write a short story or essay ever again. I should be feeling a sense of freedom.


Instead I feel this overwhelming sense of emptiness. Because now what? Now what do I do with this time? What do I do with this degree, this piece of paper that has no value in my world? Being a student has been a part of my identity that without it - I feel lost.
I started this blog as a class assignment. I was going through a difficult time, mourning a loss and  frustrated with the Turning 5 process. I didn't know what I was doing, I didn't over think things - I just wrote. 


I've loved and appreciated every opportunity that has come with this blog but these last few months, I have been struggling with it. Struggling to keep up. My confidence in my writing has been shaken and I'm constantly questioning every post I publish. Is it good enough? Will people 'like' it, share it or leave a comment? Stressing over my Google page rank, SEO, analytics and Alexa score and social media reach. 


I'm questioning whether I can or should continue. I'm wondering what's the point, if my writing means anything? And is it worth the pressure?


So now what? I don't know. 


I'm giving myself till September to figure it out. 
 

I Am Overweight

I took this screen shot of my Wii image last January. And six months before, I was lighter. Emotionally and psychically. In the last two years I have gained nearly 20 pounds. I call it The Weight of Autism.  

And last night I stepped on the scale. I have passed the 160 pound mark.

I am overweight. I am far from in shape. And I am not happy. It's hard getting dressed in the morning because I try on several outfits trying to conceal my weight - some days are more successful than others. The thought of going someplace nice depresses me because even though I have closet full of clothes, the items I want to wear don't fit. And I can't stand going shopping especially when I have to keep buying bigger sizes. Nothing fits comfortably anymore and it makes me incredibly self conscious.

I know that if I don't do something about it, I will keep gaining weight.

I hate New Year resolutions. I never keep them. But this isn't about a resolution. It's about making a life style change. It's about making better choices. It's about being healthier. Because The Boy needs me to be.


For my other life style changes check out my post on Parents.com - Resolutions For An Autism Parent  

  

A Walk In My Shoes

I remember how happy I was, bringing them home. My purple wedge Lucky sandals. They weren't on sale but they were well worth the price.  The moment I tried them on, they fit perfectly on my feet.  I was starting to gain weight, my back was beginning to ache and the shoes provided the support and comfort that I would need in the coming months.  

I immediately took them out of the box and held them up for The Husband.  

"What do you think?" I asked.

"I don't," he said. 

I wasn't surprised. I figured he wouldn't like them.  But I didn't care, he wasn't the one that was 8 weeks pregnant.

I wore them almost daily, revolving my outfits around my purple shoes. I wore white, pink and navy. The only other purple item I owned was a scarf and I carried that with me, to wrap around my shoulders on the subway. I was able to wear my shoes all day at work and then walk home through the park on my way home without my feet aching at the end of the day.  

They were the best shoes ever. 

I remember wearing them on that day in early August.  Walking up the block to my OB/GYNs office for my 16 week appointment.  Dressed in all white and my purple shoes.  I walked with confidence, excited to hear the heartbeat of the baby growing inside me.  

I remember the look on my OB/GYNs face as she told me, there was no heartbeat to be heard.  

I remember how heavy my feet felt walking out of the doctors office.

I remember the next day dressed in a navy blue dress and purple shoes walking alone to the hospital.  Walking slowly, with my hand round my belly protecting the lifeless baby that needed to be removed.

I remember the echo of my purple shoes as I walked down the hospital hall.

And when it was all over, I remember The Husband slipping off my hospital socks one by one.  I remember how gentle he was as he placed a purple shoe gingerly on each foot.  And how he held me up and helped me walk; his arm around my waist and me leaning against him.  

I remember putting those purple shoes in the closest and not wearing them for the rest of the summer.

Then the following summer, I reached into the closet and pulled out my purple shoes.  And every morning, as I got dressed, I looked at those shoes, wondering if I could wear them. Even though I loved them.  Even though I wanted to wear them.  Even though I looked at them at least twice a week, only to put on another pair.  As silly as it seemed, I was afraid to walk in my own shoes.  And at the end of last summer, back in the closet they went.

This summer, once again, I pulled the purple shoes from my closet.  Every morning, I dressed and looked over the shoes I longed to wear.  

As I prepared for BlogHer, I shopped my closet, trying to figure out what to wear.  I knew I wanted to wear my white dress and I needed to decide on a pair of shoes.  They needed to be comfortable.  I looked at my purple shoes, they would be perfect I thought. Except the Saturday I wanted to wear my white dress, marked two years since the day I lost the baby.

Could I wear them?  Was I strong enough to walk in my own shoes?    

I spent the last days of July and the first days of August crying myself to sleep.  Fighting back tears on the subway, grateful to hide behind my big dark glasses.  Going into the bathroom at work to collect myself. I wondered, why. I wondered how different my life would be, had the baby been born.  Wondering how a baby would have changed our life? Would I be writing? I wondered what kind of brother The Boy would be?       
    
On Saturday, August 4th, I slipped into my white eyelet cotton dress and stepped into my purple shoes.  I looked at myself in the mirror for a long time. I have spent the last two years, trying to accept. Trying to forget.  Trying to tell myself, these things happen for a reason.  I just haven't figured out the reason.  

I walked out my door wearing my purple shoes. The shoes felt a little lighter, it was my heart that was heavy.  
        
I walked around BlogHer that Saturday, mostly alone, unable to focus on the sessions. None of it seemed important to me. Though hearing Katie & Soledad made me forget my sadness for a little while.  

I went to the Serenity Suite for a few moments of quiet.

I wandered around, met up with some friends and waited to see another friend in the fashion show.  And after the fashion show, I even danced.

I danced in the shoes I had been scared to walk in.

It was a little after midnight when I stepped out of the cab and walked up the block into my building. After walking around the whole day, after dancing into the night my feet didn't ache.  And my heart felt a little lighter.

I remembered how much I loved my purple shoes and how happy they made me.

And I knew I could wear them again.                   

Wearing my purple shoes for the 1st time in 2 years @BlogHer