Friday, December 25, 2009

Baby Jesus - Thank You

It's Christmas. As a Catholic, a Christian, it's the time of year to especially focus on God and on our Saviour, a little baby who was born thousands of years ago who taught and inspired and performed miracles, and who sacrificed his life to save ours. It oversimplifies things, but in the preschool world Lilly and I live in, playing with her "Little People" nativity scene, we see Baby Jesus and we sing "Happy Birthday" and say "Thank you." And then Lilly points out the sheep next to Him and she says "Baaaaaa!"

Aside from the fact that we are celebrating Jesus's birth this time of year, I have a much more personal reason to give thanks to Him this time of year. As I've mentioned before, exactly 4 years ago Jon and I were lost, or at least we felt that way. 3 months pregnant, armed with the news that our child was not "perfect," we were looking for somewhere to turn. We were in Atlanta for Christmas, announcing the news that we were expecting, hiding our tears and fears that there was something different about our child that others and perhaps even ourselves in some ways would find it hard to accept. We knew right away that we would have this child no matter what, and we knew that we would love this child completely and give her everything she needed. But yet we were sad, looking for a place to turn. I would have loved at the time to have talked to someone like myself, a mom who has been there are raised a child with Down syndrome who had a million and one positive things to say - but I would not meet other parents until after Lilly was born. I would have loved a book like "Gifts" and "Gifts II" which tell a hundred stories of real families living real lives, influenced by their wonderful gift of a child with Down syndrome. Yet those books would not be published for a couple more years. All the prior guides that I had used in my pregnancy that told me what not to eat, when to go to the doctor, etc, like the What to Expect book, were pretty bare when it came to "what to think about having a child with special needs."

We were in Atlanta. We were feeling sorry for ourselves, and wanting our baby to know she was loved, but unsure of what the next step was for us. How were we supposed to survive the next 6 months of pregnancy knowing that our child might be different? I was so protective of my child but I wondered and feared for her future - how others would react, what her life would be like. It was Christmas 4 years ago, dealing with these emotions, looking for inspiration. And then it pretty much smacked me on the head.

It was Christmas. We were celebrating a mom giving birth to her special son. God came to her months before and told her something was different about her child, but to not be afraid. Her child might not be a "typical" child but he would save the world. Despite her fears, she was to stay strong. Her husband got a similar message, to stay by her and their family, and support them. Christmas Eve mass 4 years ago had a homily dedicated to Joseph. About what he was thinking and feeling, how he knew to support his new wife and their child, and to have faith that it would all be ok. I sobbed through the entire message.

I understood these parents, their fears and their love for their child. I understood Mary, young and pregnant and unsure of the future her new family would face. She was ready for the challenge, and suddenly so was I. She gave me the faith and courage that this would turn out just fine. While our baby was not God, it was a precious gift from God - children with Down syndrome are not accidents or mistakes. Lilly was entrusted to our care because God knew we were a perfect match - not only because we would be good parents to her, but that she would teach us so much as well.

4 years ago, I was uncertain but suddenly had faith that it would all turn out ok. And it did; my beautiful 3 year old is sleeping peacefully with her red snowman nightgown in her white big girl bed, and I am anxiously awaiting her to wake up (and Jon to get home from work this morning) so that we can run downstairs and see what Santa left for her. She certainly has been a good girl, and she's so excited about Christmas this year. We did a trial run with presents last night, as Jon's parents sent her lots of gifts that she loved tearing the wrapping paper off and appreciating each thing that was inside. And we baked cookies for Santa and I had her leave two cookies and three carrots and a cup of milk out for him underneath the chimney. And she promply ran off with both the cookies and ate one of the carrots and drank most of his milk before posing for a picture with Santa's snacks. My daughter is indeed perfect, and we are ever so grateful things turned out the way they did. She is a Christmas gift, our little miracle. So for so many reasons - "Baby Jesus, Thank You."

Tuesday, December 22, 2009

Disney... Again

We found out a few months ago that Lilly has a small hole in her heart, that needs to be repaired. Fixing it entails a catheterization procedure that brings a little device up to her heart that will permanently clamp the hole shut, and we've set it up for January. As far as heart surgeries go, it's a relatively minor deal - but it's my baby, and it's her heart, and it's scary. So upon hearing the news, it's obvious what we did next:

We planned a trip to Disney World.

Obviously. Because when we found out that our daughter would be born with a chromosome abnormality, we took a babymoon to Disney World. And when we found out she'd get her tonsils taken out at 13 months of age, we took her to Disney World. And when we moved to New Zealand, we went to Disneyland on the way out and Disney World on the way back. So to subside the guilt and anxiety over her upcoming procedure, we *had* to take her to the happiest place on earth. :)

But we just went to Disney World for a week in June - which was such a wonderful trip - so we wanted to do it differently. In June, we hit every character meal, every ride, every thing we could do to make it a magical trip for Lilly. With a week, we were able to relax, hit the pool each day, and really immerse ourselves in the Disney magic. And honestly, while I love Disney World, thinking about doing it that way again just 6 months later did not sound that exciting. So we decided to think outside the box.

How about a Disney Cruise? we decided. We had never been on a cruise, and I've heard so many wonderful things about Disney Cruises from my cousin Suzanne. In researching, I found that there were great deals for mid-December. We booked a 3 night cruise, and I was so excited that I mentioned it to my whole family. And suddenly, one by one... they all booked it too! So then we had me, Jon, Lilly, Jon's twin brother & his wife and their son, and my three sisters and their spouses and kids. 15 of us going on a Disney Cruise! And to top it off, we booked an additional 3 nights at the new Bay Lake Tower at the Contemporary with Jon's brother's family. I couldn't wait to see Walt Disney Resort's holiday decorations!

We just got back a few days ago... did we have a good time or was a big family vacation too much for us to handle? And would we get seasick on our first cruise? You'll have to wait and see...