Thursday, December 31, 2009

Counting my blessings in 2009

It's New Year's eve and what better time than this to take stock. It's been a wonderful year and I have much to be thankful for - from the mundane to the truly extraordinary.

Right at the top of my list is Angel's miracle life. Who would have guessed that this baby with Down Syndrome would surprise all of us? A year ago at her birth, the doctors' prognosis wasn't exactly heartening. But here we are with a baby who is one smart cookie. No, no we are not in denial nor are we deluded. Angel has really accomplished a lot in the first year of her life; much more than anyone expected and I am very grateful for that.




I'm also thankful that I could take a break from my career to spend with my young kids. Having missed much of the action earlier, I am now savouring every little moment with my little ones. Bliss!

The other bright spot over the past year was discovering all the wonderful mommy blogs that kept my spirits up at a time when we were still coming to terms with having a baby with Down Syndrome. I love the honesty and sincerety that shows through all the mommy writings, especially those by moms of children with special needs. They have been a comfort to me on some of my darkest days. Thank you Moms and may God bless you all.

Some of the happiest memories of the year are those of time spent with the family - trips across the country and holidays at home. Makes me feel all warm and fuzzy :)


And finally I am thankful for my family - my two wonderful girls (make that four girls - including my two amazing nieces), my husband, my sister (should be somewhere on top of the list of things I'm thankful for), parents and other members - friends, good health and some of the material things that may not make life worthwhile but sure make you happy for a while.


So here's a big thank you to all those who made (and continue to make) my life so wonderful.

I'd love to hear from you about all the things you're thankful for this year.


Love and best wishes for a wonderful 2010,
JD

Saturday, December 12, 2009

Angel's birth story

I've had my share of dark days too. Probably one of the lowest phases of my life are the days following Angel's birth. And here's where our story begins -

Angel arrived at 2:35 am on September 26, 2008 after a very brief labor. And the first thing the doctor in attendance said was – oh, she’s a very cute baby. I peered at the round little head nestled on my tummy and heaved a sigh of relief. For me, it was evidence enough that all was well.

I know it’s not unusual for any mother to fret about how their baby looks, but I was quite desperate for reassurance because for a good part of my pregnancy my gynecologist had expressed concern about the baby. My ultrasound reports had revealed that the baby’s kidneys were distended. The doctor said that there could be a problem but there was a possibility that this was only a transient issue and might resolve itself. Other than that, every test report – including the triple marker – didn’t throw up anything alarming.

So I was elated to see my cherubic little girl. It didn’t even bother me that the pediatrician attending the birth said that the baby must be moved to the neonatal intensive care unit (NICU) even though she was 6 lbs at birth and was apparently healthy. I was just too exhausted from the effort and lack of sleep.

Angel was in the NICU for two days and I didn’t suspect a thing. The pediatrician felt obligated to offer me a reason for the baby’s prolonged ICU stay and said something about the baby not feeding properly. It didn’t occur to me that the explanation being given to me was flimsy. I was only focused on getting back home.

Two days later, when I was alone in my hospital room, my gynecologist dropped in. This part is so clear in my memory as if it happened yesterday. While he was going about his routine examination, he dropped the news. “The pediatrician suspects that the baby might have a genetic condition; she might have Down syndrome,” he said. He held my hand briefly; I felt the warmth of his palm against my skin which had gone dead cold. Then he walked out.

I froze for what seemed like an eternity. Did I really hear right? Did he really say that my baby had Down Syndrome? Was it my baby he was talking about? No, that just wasn’t possible. She looked so normal. Then it hit me with such a violent force I burst into tears. Every part of me ached with a pain that only another parent in a similar situation will understand. The very thing that I had dreaded, the very thing I had tried to avoid by having the baby on the supposedly right side of the 30s had happened to me. I remembered all the conversations I had with friends and family about the increased risk of the baby being born with some genetic condition if we wait too long. And now it had happened to me, of all the people I knew.

I called my husband who was at home with our older baby and told him what the doctor had just said. There was silence at the end of the line and then he said I’m coming back to the hospital right away. Then I called my sister who tried to console me. I realized that they already knew. My stomach churned and I felt sick. A while later, I went to the hospital chapel and prayed – Please God, let it not be. I hope this is all a mistake.

The next few days are a blur, I kept going from extreme fear to grief to envy as I watched all the other families celebrate the arrival of new members. While all the other mothers cooed over their babies as they nursed them in the NICU, I just stared at my baby and felt the tears welling up in my eyes. Many times she would look into my eyes and I found myself falling in love with her. Those were the most beautiful eyes I had ever seen - an iridescent gray with a ring of light colored flecks. She looked like a little doll.

Surely they had got it all wrong. They said she wasn't feeding properly, but from what I could see she was nursing like a champion compared to the other babies that were there and while the other mothers coaxed their babies to nurse, my little one would latch on and go with relative ease (by day 2). They said she was not alert, but she kept me up for a good part of the first night she was out of NICU.

The pediatrician, however, said that he was sure about her having Down Syndrome. Her features were evidence enough, he said. He added that they were only waiting for her karyotyping report which would confirm their diagnosis. He said if the report comes any different we could hit him on the head. I let myself smile for the first time in days. Our family and friends had been praying and I was confident that I would hit the pediatrician on the head, at least figuratively.

Then he gave his prognosis of what he thought her life would be. He said she would, at best, have the intelligence of a 12 year old and would most probably need support throughout her life. His words were cold and blunt. They didn't offer any comfort or promise. Our hearts bled but we held on to the hope that the karyotyping report would say that she was fine.

After we returned home, we continued to storm heaven. The day her karyotyping report was supposed to be ready, the sun didn't shine. It was a dark, gloomy day and it even rained. It was unusual for an October day and in this part of the world October is usually a time when the days are bright. As the day wore on, the sky kept getting darker. It was like a sign. Stop it, I wanted to scream; it's not funny, thinking that God has a wierd sense of humour. And this time I was not amused.

The karyotyping report confirmed our worst fears. The next few days continued to be dark and gloomy. It was as though nature was mourning with us as we grieved and raged about our fate and that of our child. We worried about her future, our future, how this would impact the life of our other child. Our family and friends rallied around us and that helped soften the blow a little bit.

The days crawled and slowly the heaviness in our hearts lifted. As they say, time heals all wounds. And it did ours too though we still worry about what the future has in store for Angel. It’s just over a year since she came into our lives and we have realized that life isn't as bad as we feared. In fact, we are discovering the many joys of raising this baby, who never ceases being loving and cheerful. She is no less of a miracle. She is a delight to our hearts, the wonder of our wonderful life. She is our very own little angel and we are truly blessed to have her.

If you are a new parent with a baby who has been diagnosed with Down Syndrome, I would like you to know that while this may be one of the toughest phases, it will pass. And when you look back, you might even find that your life has been enriched by the arrival of this baby. Congratulations and I wish you, your family and your new baby every happiness.

Thanks for reading,
JD