Wednesday, March 24, 2010

Easy Street

It is an interesting experience having a child with special needs as your first born. Each milestone was anticipated, practiced over and over, and finally reached, at which point there would be lots of celebrating. Many milestones that may have seemed insignificant to parents of "normally developing" children were a BIG DEAL.

Like the first time Antalya passed an object from one hand to the other, the first time she banged two toys together, the first time she clapped her hands, the first time she got into a four-point stance. The list of her accomplishments is huge.

I wanted to be just as excited for Victoria when she reached each of the same milestones, but I'm finding out that it is such a different story. There are no therapists, no goals in writing, no daily strength training sessions. And this little one is learning new things everyday. I can't even keep up with all her new skills, yet alone find time to document and celebrate each little milestone.

Watching the ease with which Victoria learns new things makes me appreciate even more how far Antalya has come. None of the milestones were easy for her - she has worked and continues to work so hard.

While her little sister is living on developmental "Easy Street" for the moment, Antalya continues to remind me that whether a task is easy or hard makes little difference if one is truly determined to learn it.

Monday, March 22, 2010

Antalya's Prenatal Diagnosis

It was 3 1/2 years ago, and I was expecting my first child. I wanted to be excited, but to be honest it was a completely miserable pregnancy. And I couldn't get over the nagging feeling that something just wasn't right. I voiced my worry on a few occasions, but everyone continually insisted that everything was just fine.

Finally at around 30 weeks my midwife agreed to an extra ultrasound "just to make sure" they hadn't missed something. For an unexplainable reason I was carrying about four times the normal amount of amniotic fluid. I looked like I had to be carrying twins. It was at this ultrasound that the technician finally saw what had been missed in the previous two ultrasounds, and the cause for all the excess fluid. A "double bubble" (medically known as duodenal atresia), meaning my daughter's stomach and intestines weren't connected. And then for what felt like at least an hour, we sat and watched as the technician looked at our baby's heart, and then looked at it again, and then looked some more. All the while assuring us everything was just fine. I tried to believe her, but when she flipped the machine to the 3D mode and printed us some photo like images of our "beautiful baby" for free I knew everything was not ok.

What happened next, and the misinformation we received still boggles me. We sat down with our midwife as she explained the "double bubble" all the while ensuring us that it was not a big deal, that she would be born normally and eventually need surgery to repair the birth defect. She then said it appeared our baby only had 3 chambers in her heart. And both of those defects led her to believe our baby might have Down syndrome. She thought it might be good to go see a specialists, but left it up to us to decide. And with that we were told to come back in two weeks for another check-up.

That was a Friday morning. Stunned from the news, but still unsure what it all meant, Jason and I decided that until we could get some solid answers, worrying wasn't going to do us any good. So we agreed to tell no one what the midwife told us, until we knew for sure what was going on. So with that, I returned to work for the remainder of the day. That night I had an appointment for a massage. I remember laying on the massage table and suddenly being overcome with emotion. As the masseuse was trying to relieve all the tension in my body I suddenly began sobbing uncontrollably and telling her there was something wrong with my baby. The rest of that night and that weekend is a bit of a blur. The only thing I do remember is lying when my mom called to see how the ultrasound went. As I tried my best to hold back the tears, I told her everything looked great. Mom, I'm sorry I lied - but I knew it would only make it more difficult if you were worrying too.

Monday finally came. I found a new doctor and made an appointment for the next day.

Jason met me at the hospital for my 9:30 appointment Tuesday morning. When I look back over my life so far - this day stands out above the rest as the most emotionally trying day. I remember sitting next to Jason who was holding my hand in a cramped conference room, with an high risk OB, a genetic counselor, and a pediatric surgeon as they all explained the reality of our situation to Jason and I. Her heart looked fine, but the "double bubble" was a complete duodenal atresia meaning that our daughter would need surgery as soon as she was born. She would be transferred to the children's hospital shortly after birth. I would have to give birth in the room next door to the NICU so she could immediately be handled over to the NICU staff. She would most likely be in the NICU for 2-3 months recovering from surgery. And yes, she more than likely had Down syndrome.

And that was the good news.

The bad news was that due to amount of amniotic fluid I had, the doctor expected me to go into preterm labor within the week. At only 30 weeks, if she were to be born, her chances of recovering from surgery were not very good.

We were then given two options.

Option #1: Do nothing. Most likely give birth by the end of the week. Not a great option.
Option #2: Have an amniotic reduction TODAY (this is where they insert a needle with a catheter into the womb and remove the excess fluid). Although this would relieve some of the strain and hopefully prevent preterm labor, the procedure itself carried a huge risk of causing preterm labor. Not a great option either.

By now it was lunch time. The doctor told us to go walk around for a bit, get some lunch, and then let her know our decision. And then she added that we were not to leave the hospital until we decided.

What do you do in such a situation? I suddenly felt like a child who was scared of the dark, but had no where to run for comfort. So, Jason and I sat in the car, and he let me cry. And he held me and told me it was going to be alright. And then when all the tears were done we decided it was time to become parents and decide what was best for our child. We called the only two people we could think of that could give an education opinion about the situation.

We called my grandpa who is a retired doctor. And then we called Jason's sister who is a midwife. And then we went to the cafeteria for lunch.

I remember ordering chocolate cake. I couldn't taste it, I was only going through the motions of eating, all the while telling myself that the cake was so delicious.

Then with courage in our steps and a forced grin on our faces we marched back up to the high risk pregnancy area of the hospital with the decision that to do something was better than to do nothing.

They slathered my big, round belly with iodine to prevent infection, pulled out a monster needle, and with Jason holding my hand they took out 2 liters of fluid from my belly. I felt dizzy from the sudden weight loss and could barely stand. So I was taken to labor and delivery in a wheel chair. And then we waited. We were told that if after two hours of waiting there were no signs of labor we could go home.

I remember thinking how unprepared I was to become a mom and praying that I would not become a mom on that day. Praying that my daughter would not make her entry into the world until she was strong enough. The minutes ticked by so slowly. And eventually our prayers were answered and we were discharged and sent home.

In the course of a day my world had been turned upside down and for the next several weeks Jason and I worked on dealing with the whirlwind of emotions and doctor appointments. It was confirmed that our daughter did indeed have Down syndrome a week later, but by then we were already prepared to hear the news.

There were appointments every week for a fluid reduction (my body was continually creating more fluid, so every week they would remove 2 liters to get me back to near-normal levels), appointments with the genetic counsellor, the medical geneticist, and pediatric cardiologist to make sure there were no heart defects.

Jason and I faced the reality that there was a chance our first born may not live. To cope, I decided to pack away all the baby things and put them in storage until she was born. If she were to die, I knew I couldn't face coming home to all of the "things" that she would never know.

And if she were to live, we had to come to terms with the fact that we would be raising a child with special needs. I'm ashamed to admit that that scared me almost as much as the thought of her dying. I knew nothing about Down syndrome and could only imagine the worst.

But slowly the weeks went on, with never a sign of preterm labor, and my baby growing bigger and stronger. And I grew stronger too. I sent emails to the local early intervention program and the Down syndrome support group, I did research online, and I met a friend who had a 3 year old son with Down syndrome.

By the time I gave birth to Antalya at 38 1/2 weeks I felt prepared and ready to face whatever came. There was only one nagging fear left. One that I never mentioned to anyone - not even Jason - because I felt so awful saying it.

I was afraid I would think my daughter was not beautiful.

Such a petty thing to be worried about. I know. But it plagued me constantly.

Her birthday finally arrived. Antalya was born and quickly passed through the window into the NICU. After she was hooked up to an IV, Jason was allowed in to see his daughter for the first time. Several minutes later he was back at my side showing me pictures of our daughter on the digital camera screen. I remember exclaiming, "she is so beautiful!" And she was! I couldn't take my eyes off the small image of her face. It was her! My first born! And oh, how I loved her, and how my arms ached to hold her.

She might not have been what had been expecting, but we soon learned that she was just what we needed. She was perfect for our family!

Having Antalya has taught me that life doesn't always go exactly how we think it will, but that's alright, it's life. You take what it throws at you and you turn it into something good.

Antalya was transfered to the children's hospital the next day and had surgery to repair her duodenal atresia when she was two days old. She amazed all the doctors and nurses and was home on full feedings within a month of her birth.

This picture was taken just a few hours before her surgery

And here's my little pumpkin on Halloween - one week before she was released from the hospital.

Sunday, March 21, 2010

Happy World Down Syndrome Day

Today is World Down Syndrome Day. The date (3/21) signifies the 3rd copy of the 21st chromosome. It is a day to celebrate all those individuals with Down syndrome that have touched our lives. Today especially, I am thankful for my daughter Antalya and all she has added to my life in her three short years on earth.

I recently read the beautiful birth story of Nella who was also born with Down syndrome. You should check it out. As I read it, I realized that I have never taken the chance to write down the story of Antalya's birth. So I have begun Antalya's story, but it is getting late, and so I promise to take the time to finish tomorrow and post it. Until then, wishing you all a very Happy World Down Syndrome Day.

How has your life been touched by someone with Down syndrome?

Wednesday, March 17, 2010

Special Exposure Wednesday - Multitasker

5 Minutes for Special Needs
Antalya is rarely not doing something. In fact, she is usually so busy that she has a hard time doing just one thing. Increasing her attention span and focus on a given activity is something that we are working on both at home and at school. I love this picture because it sums up Antalya.

We went for a walk. She wanted to push her stroller, but she also wanted to draw. She would walk a little ways, then stop to draw a bit, then continue to walk aways. She cracks me up!

Monday, March 15, 2010

A Bit of Reality

I had my blog post all planned out. I was going to write about what an absolutely perfect day the girls and I had. How the weather couldn't be more beautiful. How the girls and I had such a fun time riding on the top of the double-decker red bus. How much we enjoyed our picnic lunch at one of the nicest parks in North London. How Antalya ate every last bite of her turkey, cheese, cucumber sandwich. How I stayed so calm and didn't let anything get to me. How perfectly well behaved the girls were on our spontaneous get away.

And then I was going to post pictures. Lots of pictures of smiling happy faces, spring-time flowers, ponds with ducks to feed, and explorations in a new park.

But somehow reality crept in and spoiled our lovely plans.

After picking Antalya up from school and excitingly telling her of all the plans we had the for the afternoon, I was shocked when just one block later we were left with this. And no amount of coaxing, begging, bribing, or pleading could get her to budge.

It was alright though. I had thought something might try to foil our adventure. So I had a back-up plan. Plan B consisted of eating our picnic lunch at home, putting the girls down for a quick nap, and then heading out when they awoke.

Plan B went exactly according to plans. We made it out the door by 2:30. Still enough time for our 25 minute bus ride, an hour to explore, and then make it back home before rush hour. We boarded the bus with three huge grins, and paid the fare. And that's when it happened. Reality hit again!

I turned to see the bus completely full. Victoria suddenly found herself in a new environment and began screaming hysterically. The same crying she did a month ago went she rolled off the bed and suddenly found herself on the floor. In the same moment that Victoria started screaming someone offered their seat to Antalya and grabbed her hand to help her up. It was very kind of them, but definitely not the right thing to do. She begins screaming hysterically - the kind that involves jumping up and down and wailing her arms in the air.

I thought fast and quickly pushed the "stop requested" button.

Three blocks from home we exited the bus, and I was left standing on the curb with two screaming children and a shattered dream of our perfect afternoon out.

But that's the way life goes sometimes. Our best of plans fall through. We're left wondering what went wrong, and what do we do next.

So, what did we do? We headed to bakery and bought some cupcakes to share for Family Home Evening tonight.

They were delicious!

Thursday, March 11, 2010

The Small Things

Spring is just around the corner. Can you feel it? Here in London the tulips are popping up out the ground. When I open my curtains each morning they smile up at me from the garden and remind me that today is a day worth celebrating; that there is beauty all around; that there is so much joy to be found in the small things.

And so, despite the girl's colds that have been lingering way longer than they should, the cold weather that is refusing to warm up even when the sun is shining, we have been doing a lot of enjoying. And trying to catch the moments with the camera.

We've been enjoying picnics on the lawn,

and cute boogery-slobery smiles.

We've been enjoying sticks. Lots of sticks everywhere we go. We dance with them and practice our wizarding spell casting skills.

We've been enjoying sweet moments like this one,

street signs with lots of letters to name,

meal-time messes,

and a daily carton of milk when preschool is over.

We've been enjoying quirky expressions caught on camera,

and spur-of-the-moment naps.

But mostly we have just been enjoying spending time together. Each day passes so quickly, and the girls are growing and changing so much each day that I find myself pleading with Time to please slow down.

Tuesday, March 2, 2010

Individual Education Plan

Her teacher handed it to me yesterday in a brown envelope.

I've been expecting it.

What I wasn't expecting is how it made me feel.

And how the feelings would linger ALL DAY LONG!

Yes, folks, I sadly admit that I walked around most the day yesterday with a pouty face. I know my daughter has Down syndrome. I've know it since before she was born. But for some reason, while I sat and read through her IEP yesterday it was like someone was telling me for the first time that my child has a disability. That my child is delayed. That my child has weaknesses to be improved on.

But like always - Antalya has a way of bringing me back to reality. The sweet reality that is her!

On our way to school this morning she tripped over the speed bump in our apartment complex and skinned her knee. When the kisses and hugs had been given and the tears had stopped, I set her back on her own two feet. And you know what she did? She went back across the speed bump, turned around, gave a quick smile, and then did a perfect replay of how she meant to cross the darn thing in the first place.

And then once at school, the little boy that hung up his coat next to hers quickly put his arm around her when he saw her and walked into class with her. Both with huge grins on their face.

So, really, what does it matter if she is behind in several areas? If she is willing to try again every time she falls, and if there are friends to walk by her side, my little Antalya will accomplish everything she sets her mind to.

Maybe for her next IEP I should make sure it is known that this little one is the best "beanie-wearing, blueberry-pancake-mixing, mommy's-helper" in the whole world!