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.

      

The Question I Wish People Would Stop Asking

When my husband, Joseph, and I first moved in together, everyone asked when we would get married. When we got married, everyone asked when we would have a kid. Two years later, when I gave birth to our son Norrin, people asked when I was going to have another.

I hadn’t even been given the green light by my Ob/Gyn to get busy again. I was sleep deprived and my breasts were engorged and people were asking if I was ready to “try for a girl.”

The week that Norrin was diagnosed with autism my best friend had her baby shower. Norrin was two and half years old. Attending a baby shower, everyone wants to talk about babies and more babies. The diagnosis was so new. I was angry, heartbroken and confused.  And I wanted to scream each time someone asked, “My son has autism! And I don’t want any more kids.”

I struggled with whether or not to have another child. I knew Joseph wanted more children. My family kept saying we should have another. And every therapist that walked in and out of our home said a sibling would be the best therapy for Norrin. But autism was like this dark cloud hanging over me. I had fallen down this rabbit-hole and I was trying to figure out our new world.

After three years, I decided I was ready. And immediately I was pregnant. As I began to tell friends and family about my pregnancy, they all asked the same question: Are you scared this baby will have autism too?

For years people had asked when I was going to have another kid. Now that I was pregnant, everyone wanted to play on all of my fears. But during my second pregnancy, I was happy. Hopeful. Excited. And I told them that I wouldn’t worry until there was something to worry about. I wanted a baby.

And then during my 16^th week appointment, my Ob/Gyn discovered my baby had died. I had a miscarriage and I didn’t even know.

That was three years and eleven days ago. I haven’t been the same since. And I suppose I never will.

Read the rest over at Babble. Click - HERE.

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

A Painful Reminder While Sitting in the Waiting Room

Walking into my Ob/Gyn's office, I breathed a sigh of relief. There was no one else in the office. I sat down and filled out all the insurance paperwork. Then the door opened and a woman walked in. Then other. And then another. 

Within ten minutes there were six women in the waiting room. All of them noticeable pregnant.

Then there was me. I am not pregnant. 

This week is hard. The Boy will be seven years old on Sunday. The 20th. 

January 20th was also the due date of the baby that would have been born had I not had a missed miscarriage. The baby would have been two years old. 

I may have moved on but there's no getting over my loss. I will always love and long for the baby I never held, whose heartbeat I only heard. 

So this week I celebrate in company. This week I mourn alone.

Once someone asked me:

Do you think your miscarriage was a blessing - considering all the things you have to go through with your son? 

Without even blinking, I said "No, it wasn't a blessing." 

And I meant it when I said it. But I would be lying if I said, that person's question wasn't something I've wrestled with over the last two years. Especially on days, when things are really hard and I'm not feeling so lucky about raising a kid with autism. And some days I have to stop myself from wondering about how another baby would have altered our lives.  

Sitting in the waiting room, was a painful reminder. Yesterday there was no wrestling. Yesterday I allowed myself to wonder. Yesterday I felt the emptiness of my womb. Yesterday, it definitely didn't feel like a blessing.     

      

 photo credit: notsogoodphotography via photopin cc

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 

To Have or Have Not



The Boy fresh out the womb - 2006

This is one of my very favorite pictures - it's the first one of me and The Boy. Maybe it's the fact that I was coming off the drugs, but there's a look on my face that I've never seen in any other picture. Holding The Boy in my arms for the first time after feeling him grow inside over 39 weeks, was a defining moment.  I felt content, at peace, a feeling of love that I had never experienced.  Instant gratification to the umpteenth degree!   

On the day that The Boy was diagnosed,  the doctor asked if we were planning to have more children.  And while we weren't trying at the time, we knew we wanted more.  Until the doctor said, "You should consider genetic testing, if you want more children because you're more likely to have another child on the spectrum."  And it was two dreams shattering at once.

Everyone suggested we have another child.  My parents, family, friends, therapists - The Husband.  Everyone was asking when the 2nd one was coming.  Honestly, the thought of having another child with autism scared me - it still does. How will a second child impact The Boy?  What if I have a "typical" child who resents the responsibility of caring for The Boy?  I know parents do it every day with multiple children on the spectrum.  But could we do it? Not only emotionally or physically.  But financially. 

Then last year, at around this time, I decided I was ready. To take my chances.  Because I thought - what if, I was depriving The Boy of a potentially amazing sibling relationship.  I wanted another baby - autism or not.  I didn't care.  I knew in that moment, two and half years after The Boy's initial diagnosis that I had accepted autism.  The next month, we were pregnant.  And while I was nervous, I was so excited.  The baby's due date was to be on The Boy's birthday.  And I thought to myself - it's a sign.

But when I went in for my 16 week visit, my doctor couldn't hear the heartbeat.  And when we did a sonogram - we were able to see my baby whose heart had stopped.  My baby had died and I didn't even know. I'll spare you the details, but it's a loss I am still mourning.

There are days when I really want another baby. Especially when I see a pregnant woman or a newborn baby. And I am surrounded by pregnant women - at work, at Norrin's school, among our friends and family. I have days when our lives feel unbalanced and I can't help but think a baby would even us out.  Because I think The Boy would really be a great big brother. And then I have days that I'm content with The Boy because the thought of second loss would be devastating. And for a few minutes every month for the last six months, I am hopeful, only to be disappointed by the glaring pink line of negative pregnancy test. 

So while I absolutely love my first picture with The Boy, it makes me a little sad.  Because I wonder if I'll ever have a moment like that again.

~~~~~~~~~~~~~~~~~~~~~~~~~
(originally posted on April 14, 2011)  

One Doesn't Have To Be The Loneliest Number

(a recent conversation with my parents)

Dad: "When are you going to give Norrin a brother or sister?  You're not getting any younger."  

Me: "It's not that easy..."

Mom: "Ay please, at her age - she might as well forget it." 

Before The Boy was born, I had never given thought to having children. 

Seconds after The Boy was born, I was immediately asked, "So...when are you having another one?" 

And on the day The Boy's was diagnosed, the doctor warned me that I was more likely to have another child with autism.  But friends, family and therapists insisted that The Boy really needed a sibling more than ever.  

If it were up to The Husband, we'd have an apartment full of babies.  The Husband is 1 of 7.  And all of his siblings have 3 or more kids.  And some of those kids have kids.  (Clearly, I am the weakest link in the fertility department.) 

And after my miscarriage, it's been difficult.  And with every month that passes, the more accepting I become.  I will probably never have another child. 

Most days, I try not to think about it.  But it's pretty tough when I read other special needs parent blogs and the focus is sibling relationships. 

I always wonder - what kind of big brother would The Boy be?  How would a 2nd child change the dynamic of our family?  Is The Boy missing out on something?  Am I? 

And these 'what if' moments make me reflect on my own sibling relationships.  I'm 1 of 3 and we're not close. And as for The Husband's relationship with his siblings...let's just say that the holidays came and went without any phone calls. 

Sibling relationships can go either way - I have friends who consider their siblings their very best friend.  But I also know siblings who have gone years without speaking.

When you have more than one kid, you just never know what their relationship will be like.  You can try your best to make them close but it's a gamble, like anything else.  

This is what I tell myself whenever I feel guilty about The Boy being an only child.

While The Husband and I may not have the ideal sibling relationships, we are lucky to have formed friendships to fulfill the sibling role.    

I would love nothing more than to have another baby, to give The Boy the opportunity to develop a relationship with a sibling.  But if that doesn't happen, that's okay too. 

The Boy will be fine as an only child.  He doesn't need to have a brother or sister to be close to someone.  And The Boy will not have to be alone if he does not want to be. 

Just as the The Husband and I learned to form friendships and adopt them as our "brothers" and "sisters," The Boy can do the same.  We can teach The Boy pick a good friend and to be a good friend.  Even if it's just to one other person.  That's all The Boy needs. 

    

What Autism Insurance Reform Means To Us

In case you haven't heard, Governor Cuomo signed the one of nation’s strongest autism insurance reform measures into law. 

THANK YOU! THANK YOU! THANK YOU!

It's about time.  Because autism ain't cheap.  And for a family like ours, it is a huge relief.  HUGE.  

Ever since September, we've been paying for Occupational Therapy for The Boy.  When The Boy was in CPSE and the DOE was paying for it, we had 2 hours of OT at the Sensory Gym.  Now that we're paying for it, we can only manage 1 hour a week. 

The going rate for an hour at a Sensory Gym = $175/hour.  That's $1,400 so far.  

We've also started with a private homebased ABA therapist.  I haven't even gotten that bill yet.  I'm trying not to think about it right now.  

Did I mention we want to start the theraputic listening?  Yeah, that's about $300 to start.

I don't think I've felt the financial burden until most recently.  Up until now, we've been able to manage.  I mean, last year was tough for us financially but we squeaked by.  But at some point, money runs out.

That's where we are. 

I hate that the phone rings constantly.  I hate that I have to check the caller ID before picking up because I'm hiding from some collection agency.  (I hate hiding the phone from The Boy because he's just discovered the "talk" button and likes to answer the phone when it rings.)  But it's for a $1000 medical bill that I just can't pay, not right now. Should I pay $1000 for the baby I lost when that money could help The Boy? And I really hate that it's a decision I have to make.

For the last few weeks, I've been thinking: how are we going to continue paying for the Sensory Gym and the ABA therapist?

Will it come down to other decisions like - Do I cut the cable?  To afford one more session of OT.  Do I only pay half of the Con Ed?

Should The Husband or me get a part time job? 

Do I drop out of graduate school?  After this semester, I'll be 4 classes away from an MFA degree.  I could teach part time.  But is it fair to take money and time away from The Boy?  I have a few more weeks until spring registration to decide.    

In order to pay out of pocket for services that The Boy needs, these are the sacrifices I am willing to make.  

And there's a small  huge part of me that's embarrassed by all of this.  Because The Husband and I both have good okay jobs.   Yet we still struggle financially.  And I shouldn't feel ashamed because I know, we are not the only parents out there making these kind of decisions.  It still doesn't feel good, admitting that we are living paycheck to paycheck.  But it's the reality of our world.  This is part of the journey.    

So...back to the Autism Insurance Reform Bill.   It's important.  It's necessary.  And it just may make our lives a little bit easier.  And maybe, hopefully, these decisions will not have to be made. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~  
Summary of 2011 Autism Insurance Reform Bill in New York:
S.5845 - Sponsored by Senator Charles J. Fuschillo (R-Nassau)
A.8512 - Sponsored by Assemblyman Joseph D. Morelle (D-Monroe)

The bill would:

• Require private health insurance companies to provide coverage for the screening, diagnosis, and treatment of autism spectrum disorders including:
  
  • behavioral health treatment (such as applied behavior analysis)
  • pharmacy care (if the policy covers other prescription drugs)
  • psychiatric care
  • psychological care
  • therapeutic care, including non-restorative therapy (if the policy covers therapeutic care for other conditions)
  • any other medical care provided by a licensed health care provider
• Impose no age caps, and impose no visit caps that apply solely to ASD
• Provide coverage for applied behavior analysis to $45,000 a year; that limit will increase annually based on increases in the medical consumer price index
• Allow deductibles, co-pays, co-insurance, care management, utilization review, external appeals, and use of provider networks only in the same manner as a policy applies to coverage of other conditions
• Not affect any obligation to provide services to an individual under an individualized family service plan, an individualized education program (IEP), or an individualized services plan. The purpose of this bill is to require insurance coverage for services provided outside of an educational setting for services prescribed by a physician or psychologist
• Prohibit an insurance company from terminating coverage or refusing to renew, adjust, amend, issue, or execute a policy solely because the individual has been diagnosed or received treatment for autism spectrum disorders
• Take effect one year after signed into law
• Apply only to state-regulated insurance plans; it does not apply to self-funded insurance plans which are regulated by the federal government under ERISA law

Some Things Are Worth The Risk

Early this morning, I received a call.  

"Did you hear about that new study?"

Immediately I recognized the woman's voice.  It was Gen, The Boy's Early Intervention ABA therapist.  I had just woken up and didn't have a chance to turn on the television or computer. 

If you haven't heard about the latest study - "Parents of a child with autism face a risk of almost one in five that their next child will also develop the disorder."

I had been told this before, so for me it was no big deal.  After The Husband and I got the diagnosis, the doctor followed with, "If you're thinking of having more children, you should consider getting genetically tested as the chances of having a child on the spectrum..." Blah blah blah...

Truth be told, after the diagnosis, I told The Husband I didn't want any more children.  (Even the idea of intimacy frightened me.)  I knew The Husband wanted more children.  "If you want more kids, you'll have to have them with someone else.  I'll understand," were my exact words.  At the time, I was so set in my decision that I was willing to give up my husband. 

I don't feel that way any more, I think it was all part of the (for lack of a better word) grieving process.  

Once I decided I wanted another child, that was the moment I knew - I accepted autism.   

And when we became pregnant for the second time, I was elated.  Even though everyone kept asking me if  I was "scared."  I had taken a positive approach during those brief weeks of my 2nd pregnancy.  I told people that I wouldn't worry until there was something to worry about.  And if Child #2 had autism, at least I would know what to look for and what to do and where to go for help. 

And then at 16 weeks, I had a missed miscarriage.  And even though it's been more than a year, it's a loss I still mourn.

If I were to become pregnant again, it is not autism I fear.

I fear a second loss of life.  That is the only risk. 

I fear The Boy one day asking me - why he doesn't have a brother or sister.  If we try and do not succeed, that's one thing.  But if we do not try  - out of fear of having another child with autism.  How could I look The Boy in the eye?

The Boy is our only child, I do not know what it's like to have a child without autism.  No, I don't want to cure him.  I love him.  And maybe because of autism, I may love and appreciate him even more.  Autism only adds to his personality, it doesn't diminish it.  

So if we have another child on the spectrum, then so be it.  I'm prepared.  I just want another child.  I want The Boy to to have a sibling, companion.  He'd be a great big brother and I want nothing more than to balance out our little family.   

The joy and privilege of being a parent far outweighs any risk.

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There's No Getting Over It

It's been a year already?  My best friend asked me yesterday.  He said it surprised as if the last year went by too quickly for him to realize.  And for him, I guess it may have. 

It's been a year since my miscarriage.  You'd think, after a year I'd be over it. 

I'd known women who had them.  And since my miscarriage, women have shared their stories, to comfort me in some way.  To let me know that I am not alone.  And it's like I've been inducted into this secret society of women.  

My mother had a miscarriage, before becoming pregnant with me.  I had known that growing up.  How I learned such an intimate detail about my mother, I can't remember.  But she would say to me, If I didn't have that miscarriage, you would not be here.  As if I were her consolation prize.  Maybe that's what the baby after miscarriage is?  

Miscarriage used to be just a word, whispered among women.  I had never known it's devastation, the emotional and physical toll it takes. The aftermath.  They are the things left unsaid.  Miscarriages are often kept secret, a mother's mourning done in silence. 

And while I was often asked - how are you feeling? I always answered, fine and smiled because I knew no one wanted to hear the truth.  And quite honestly, I cannot and do not want to speak the truth.  But it's the things I have the most difficulty saying out loud that come so easily in writing.

This is the truth:

The minutes after walking out of my doctors office, after being told of my loss, I still cradled the swell of my belly - protecting the baby that was no longer alive.

Hours later, I stared at the small shiny sonogram photo not know what to do with it.  Leaving it out was painful.  Throwing it away? Betrayal.  Instead I tucked it into a book I knew I would never read.

I stayed up all night, unable to sleep, haunted by my tomb of a womb.  And while I wanted the procedure to be done as quickly as possible, I wanted my baby just a little bit longer.

Seconds after surgery, I opened my eyes to the blur of bright whites was my doctor - smiling though her eyes were sad.  And in her hand, a plastic bag.  I knew what my doctor was holding. "Is it a boy or girl?  Can you tell?"  I asked the question, my mother told me not to ask.  My doctor shook her head; though I suspected if she knew, she would never tell me.    

Days after surgery, I was back in the hospital.  Examined, interrogated, poked, prodded and drugged by doctors, nurses and medical students.  My baby was no longer a "baby" but referred to as "the product of conception."  As if medical terminology could minimize my loss, lessen my grief, dull my pain.

Weeks later, I still could not fit into regular clothes.  Defeated, I'd slip back into my maternity jeans.

And while everyone else (understandably) forgot about my pregnancy and miscarriage.
For me it was not easily forgotten.  I spent the next five months keeping track. 
Today I would have found out the sex. 
Today I would have been 5 months.  
6 months. 
7...           

And in January, while we celebrated The Boy's 5th birthday.  I couldn't help but think of baby that would have been born had he/she survived.

And in those months that followed, I counted again. 
The baby would have been two months...

I've spent the last year, wondering...why?  What went wrong?  What's wrong with me? Blaming myself, because that's what I tend to do.  And how could I not - on the day my pregnancy was expelled two nurses questioned me? 
- What did you do?  Too much exercise? 
- Why weren't you taking your prenatal vitamins daily?  Did you not want this pregnancy? 
  

And upon seeing other pregnant women.  Every baby shower I sat through.  Every new mom I congratulated.  Envy came too easily.   
Why her?
Why me?

And then, the questions; the demands.
How many children do you have?
You better hurry up and give him a brother or sister!
You better hurry up...said as if it were that easy.
Sometimes to shut them up I say:  I tried.  I had a miscarriage.

And the shoes that I wore on that day last year, remain unworn this summer.  Even though I love them.  Even though I want to wear them.  Even though I look them at least twice a week, only to put on another pair.  As silly as it sounds, I'm afraid to walk in my own shoes.  

So this week, has been tough.  It's been hard to focus, to write, to think.  And I've cried (a lot).
I've spent this last year, last week - waiting and wondering: when I will be over it?

But in these last few hours, writing this, I've realized there is no getting over such a loss.  I've accepted it.  I've moved on; I've gone on.  I've woken up every morning, grateful for The Boy that I have.  And The Husband and I are trying, hoping that we'll be lucky enough to be given another chance.   

He Believes, He Believes

Yesterday while trolling scrolling through my news feed on FB, I came across a post that immediately caught me attention: Who Believes in You written by Elena at CiaoMom.  Her post was inspired by a Kick in the Blog - a new site dedicated for blog inspiration. (Brilliant!) 

The prompt was: Who believes in you today? Who believed in you in the past? 

 

I didn't even have to think twice.

In the of May 2010, after a grueling CPSE meeting, the parent member told me that the best therapy we could provide for The Boy was a sibling.

Later that evening, I took a pregnancy test and it was positive.  I believed it was a sign, it was meant to be.  We were excited, apprehensive but looking forward to having a baby.  We were ready.  At my first prenatal visit, my obgyn said the due date was to be January 20th.  That was another sign!  The Boy's birthday is January 20th - they'd be exactly 5 years apart.

But during my 16 week visit, the baby's heart had stopped.  And for a few moments, mine had stopped too.  I had what was called a missed miscarriage.  Walking out of the doctor's office that day, across the street to the hospital, I felt heavy.  Like when your arm falls asleep and it's hard to move and it's tingly numb and you keep pinching the skin trying to bring it back to life.  That is how my entire body felt.  Numb.  I could have been stabbed twenty times and not felt a thing.

Was it a sign too?  A sign that another baby is not meant to be?

I've tried to convince myself it was "for the best," like some people said.  Considering all the running around I did over the course of the year - touring & interviewing at schools for The Boy.  Considering all the money that was spent on application fees, on books, on a special education consultant.  How would pregnancy and a newborn altered my decision making process? 

During this year, I've doubted myself at least once a day.  I've questioned every decision.  And at least once a week, I've crumpled into a ball on the sofa and cried.  For our loss, for our unsuccessful attempts at trying again, for fear of failure.  

And during this year, The Husband has comforted me.  Consoled me.  Held me.  And just let me be.  He tells me I am making the right decisions, when I think I have not.  He tells I am doing the best job ever, when I think I have failed.  He tells me I'm a good mother, when I say I'm not doing enough.  He tells me to keep writing, when I think what's the point.  He tells me 'we will keep trying.'  He reminds me that The Boy loves me and appreciates me even though he does not say it spontaneously or look me in the eye.  The Husband tells me over and over again, that he believes.  And every so often, I believe him.    
       
~~~~~~~~~~~~~~~~~~~~~

The Husband is a big Frank Sinatra fan and this is one of his favorite songs.

I believe, I believe,
I believe in wishing wells,
But I also believe in a lot of things,
Things the daisy tells,
I believe, I believe that a four-leaf clover brings,
Lots of luck, lots of joy, lots of happiness,
I believe those things.
And when it's christmas time I believe in santa claus,
Why do I believe, I guess that I believe because
I believe, I believe,
I believe that dreams come true,
If you wish for a dream by a wishing well,
Don't tell your wish or you'll break the spell,
It may sound naive, but that's what I believe.

Lyrics by Ervin Drake

Three Years After Diagnosis: Does It Get Any Easier?

(I started to write this before we left on vacation, I just never got around to finish it.  So here it is - better late than never.)

May is a strange month for me.  The unofficial start of the summer season, sweet and bitter.

2006: Sweet: I found out I was pregnant with The Boy on Memorial Day.

2008: Bitter:  The Boy was diagnosed with Autism.

2010: Sweet: Last Memorial Day I was pregnant for the second time.

2010: Bitter:  By August, I wasn't.

2011: Sweet: Earlier this month The Boy was accepted into a new kindergarten program called ASD Horizon.  And if you're reading this on May 31st - we're on are way to Disney World, Florida.  Our first family vacation where we're taking a plane.  We are pulling The Boy out of school for week. We deserve this.    

I remember when The Boy was first diagnosed and services began.  Early Intervention is supposed to be a 24/7 - there are no holidays.  And even though the therapists urged us to go on vacation.  We didn't.  We were prisoners in our home - afraid to miss a single session.  And on the weekends, there was laundry and errands and sometimes more therapy.  And we were afraid to take The Boy to new places, never knowing how he would react.  And there was no way we could even think of taking a plane.

I think about that summer of 2008, when The Boy was first diagnosed.  The summer full of questions and fear.  And loss.  And disappointment.  And blame.  Blaming myself for all the things I did not see. For allowing myself to wait until The Boy turned two before I started the evaluation process.

But by September of 2008, The Boy started at the Harry H. Gordon school.   By September, The Boy had words and could sign "give me" and "more."    

We've lived with autism for the last three years.  And now he talks so much.  Yes, much of it is still scripted and rote, as therapists call it.  But he can get his needs met.  Sometimes he even answers our questions.  The Boy has come a long way. And the feelings of loss and disappointment and blame have subsided. 

The fear still lingers - but it's a different kind of fear.  I fear budget cuts and lack of appropriate services. But I no longer fear for The Boy.  I don't fear for his future.  Especially not now, after our trip to Florida.  He truly surprised me.  And I can't help but feel ashamed for underestimating him.  (But that's for another blog - later this week.)               

I think about how much I've learned in these last three years.  How much The Boy has taught me.  I know that he has a bright future.  There is a light in his eyes.  And he is happy.  He loves us.  And I know that we will not fail him.  

But...have our lives gotten any easier?  Has living with autism gotten any easier?  That's what every parent really wants to know.  That was what I wanted to know three years ago. 

The answer is - NO.  We struggle every day.  But for every struggle and challenge - there is  success.  Every. Single. Day.  And I savor the sweetness of our every day success - no matter how big or small.  They make the bitter easier to swallow. 

 

While our lives haven't gotten any easier, I will say that it has and will continue to get better.  That is the difference. We've gotten better at living with autism.  We've gotten better at meeting The Boy's needs.  And that's the sweetest and truest measure of success.