Friday, December 31, 2010

Bring It On 2011

6 pm fireworks over the Benjamin Franklin Bridge & the Delaware River

Our wish for you and for ourselves in 2011 is for health, happiness,

love, laughter, joy,

security, strength, grace, silliness,

healing, forgiveness, peace,

courage, hope, & family.

As we prepare to put the girls to bed I looked back to a post from New Year's 2 years ago. I am overcome by the love I have for my family and how much we have grown and changed. I'm a lucky girl.

The night is young and Alexander is going to try to stay up until midnight. It will be his first, if he makes it. We have Candy Land, Chutes and Ladders, Wii, snacks, pink champagne chilling for me and hot chocolate for him, and plenty of activities to keep us going as we wait for the big count down.

Happy New Year Friends. Enjoy the embedded video below. I'll see you all in 2011!

Friday, December 24, 2010

Christmas Eve

Christmas Eve is here! The last chocolate will be eagerly plucked from our Advent calendar by a 5 year old boy with a twinkle in his eye. He will search for Speedy (our Elf on the Shelf) for the last time this year.

When my children grow up it is my dream that they will have fond memories of this wonderful time of the year. If images of baking cookies, making gingerbread creations, stringing lights, decorating the house, Christmas music and movies, the gathering of family, laughter and love come to mind, then I have done my job. With every ornament that we hang, each bell from Santa's sleigh, each shiny string of tinsel, new pair of Christmas Eve pajamas, and every drop of Christmas magic, I hope my family can feel the love and admiration I have for them.
Although I procrastinated, I did finally mail out our cards earlier this week. They might not arrive before Christmas, but that's ok. Thanks again to shutterfly for the blogger promotion of 50 free cards. They turned out so beautifully and I couldn't be more pleased. Thank you also to my dear friend Cecilia for taking the photos. You are amazing.

Tomorrow will be filled with last minute grocery shopping and a marathon event of wrapping presents. We will be watching Santa's progress through NORAD, setting out a plate of cookies for Santa and carrots for the reindeer, and lighting the advent candles. I am giddy with anticipation.

I wish you all a very Merry Christmas and a joyous, healthy new year!

Monday, December 20, 2010

Gingerbread love

Mark's mom, dad, and brother were just here for Christmas and his cousin Greg is staying with us for a while. Despite both a respitory and intestinal flu tearing through our family like a tornado, my quest for making Christmas as magical as I can for my children will go on. When stringing together words to express the immense joy we are in the midst of seems just too darn exhausting, I suppose I'll have to let pictures and video tell the tale of our happiness.

If you can't see the video below, refresh the page or click HERE (be patient as it is loading very slow tonight)

Friday, December 10, 2010

Curve Ball

Sophie had her first appointment with CHOP today (Children's Hospital of Philadelphia). They have a satellite office closer to our house than the big hospital in Philly, so we went there. The visit was to establish a relationship with her new ENT (Ear, Nose and Throat doctor). She had tubes inserted into her ears in March of 2009 and recently her pediatrician couldn't see them during an exam (no big surprise there as most docs can't). We needed to see if they were actually still there.

Like many people with Down syndrome, Sophie's ear canals are very narrow making it difficult to visualize the ear drum without a trained eye and special equipment. Dr. W took a look after clearing out a lot of wax and her tubes are still in place and look good. He surprised me by sending us off to audiology for a behavioral hearing test right there and then. During the last two auditory tests at St. Louis Children's Hospital the audiologists said her hearing appeared normal in the conversational level but showed a mild loss in the lower decibels. (in these tests the audiologist trains the child to turn to a stimulus - a light and toy that makes noise when they hear a sound. Then the audiologist just plays the sound to see if the child will turn to it for the reward of seeing the toy, etc.)

Today the tympanogram showed that the tubes were clear (a good thing) especially as she has a cold though it hasn't migrated to her ears (knock on wood). However the behavioral hearing test showed mild hearing loss in both ears (more loss in the right than the left). The loss is in the conversation range and the higher tones which is different from what the last two tests showed at St. Louis Children's Hospital. Of course, this was done through a behavior test with a little girl with few words and a developmental delay so they can't be certain about the accuracy of the level of loss without further testing.

In February we will head to Philly to CHOP for a sedated ABR to confirm or rule the loss out and to find out about each ear specifically. If the loss is confirmed, hearing aids may be the next step. However, I don't want to get ahead of myself, so I'm trying to reign my thoughts in about that until we know for certain.

My blog has been quiet lately. Writing daily in October really burned me out and I have been working through a lot of old and new personal ~stuff~. I've written posts I haven't published. It's always a trick to know what to share in such a public venue. Blogging has been my outlet and not feeling motivated to write or comfortable in sharing has been something I've been trying to work through.

A recent development is that Helena (who is 18 months old) has surpassed Sophia in vocabulary. While I knew it would happen eventually, adjusting has been...interesting. Mark and I have also both been very homesick. We are saving to buy a house, so we decided not to travel back to the midwest for the holidays. Thankfully family is coming to us. Mark's cousin Greg is staying with us for a while until his new place and job are ready in Jersey. Mark's parents are coming up in the next few days and later next week his little bother will be here. It will be a blow up air mattress slumber party and we're very excited.

So, tonight as I digest the latest curve ball that we've been thrown, I'm trying to keep it all in perspective. Hearing loss is something that we can work with. It is not completely out of left field given Sophie's DS, though it did take me by surprise. I will try and focus on being thankful for our awesome health care and doctors. I am thankful for the opportunity to catch it early, for those with DS who have come before us who have taught us to screen for things like hearing loss at such an early age, and for the amazing technology to help if her hearing loss is confirmed.

our home as taken by iPhone

an avalanche of Christmas bears (2 from 1987!)

Speedy, our hotly debated Elf on the Shelf (but that's another post)

Decorating the tree as captured by the iPhone


Friday, December 3, 2010

Brian's House

"The quantity of a life is a tangible. The quality of life is less distinct." (excerpt from article on Brian Tuttle's death, author unknown)

Brian's House is a residential home co-founded by David and Nancy Tuttle. It was a home for their son Brian who had a developmental disability that left him unable to speak. He did not develop past the age of a 6 month old. He could not sit up without assistance. He could not feed himself and only lived to age 19. Brian's House was a home for the Tuttle's son, but it was also a vision for a better way of life for others with developmental disabilities. In a time when people with disabilities were locked away from society, warehoused in institutions where an unfathomable existence defined their lives, the Tuttles wanted a different life for their son. Deemed unfit to be cared for at home, uneducable, unemployable, and burdens on the community and families, people with disabilities were sent away to be kept out of sight and forgotten in large institutions. The Tuttle's vision for a real home for Brian and others with disabilities was realized in 1978 when Brian's House opened its doors.

Brian's House is currently home to eleven residents with severe developmental and physical disabilities. On a gorgeous autumn, day three friends and I took a scenic drive through picturesque Pennsylvania. The foliage was at peak and the explosion of red, gold, and purple was right out of a book. We made small talk and took our time exiting the car once we arrived. We were early for our appointment to meet with Christine who has been working at Brian's House for 10 years and we were all nervous.

I'm not sure what I expected to see inside those walls. Images of institutions like Willowbrook came to mind, though I knew times had changed, at least in this country. I had never been in such a place and a knot of fear gripped my stomach. I was afraid of what I would see and smell. I was afraid to learn things about myself that I didn't want to know.

We met Christine at the back door. Although it was her day off, she was happy to make the drive and give us a tour. We entered near the kitchen where a staff member was cleaning up breakfast. I was surprised that the house smelled like syrup. I guess I was expecting a mixture of bleach and human waste. I quickly took notice of a resident who was in the kitchen. She moved around by crouching down low with bent legs and did not speak.

Christine showed us around the house and introduced us to the residents who were all in the large living room in front of a television. Some residents were in wheelchairs. Others were on sofas or chairs. We were introduced to all of the people, but there were a few that stood out for me. A young woman who used a wheelchair had her hair and makeup done. Christine later explained that it was a requirement. She liked to look good so the staff made her up every day. A young man was on the floor and later moved to the couch. He was self soothing by inserting his entire fist into his mouth. When he removed his hand I could see that his skin was chapped and his cheeks were permanently stretched out. I'm not sure, but I think our visit upset him. As Christine explained how she came to be involved in Brian's House I noticed another young woman who spent a great deal of time wandering around. To me, she looked as if she were lost or needed assistance but Christine assured us that she was fine.

As we were headed from a rec room to the bedroom areas, one of the residents began wailing. It was a long, shrill, mournful sound that hit me right in the back of my spine. In all honesty, it frightened me and I had the urge to run. As we passed through the hall we noticed a grouping of photos. Christine explained that it was their wall of angels. The pictures were of residents that had passed away and Brian Tuttle's picture was in the middle.

After our tour we met a nurse who was pleasant and cordial. Christine had only explained that we were doing the tour as a requirement for a class. However, when we told her that we all had children with developmental disabilities and that our class was to teach us to be the best possible advocates for our children, her whole demeanor changed. She explained that they resisted the label "institution." For them the residents of Brian's House are family and the house is their home.

My homework was to write about my experience and impressions of the facility. Instead when I returned home I chose to hold Sophia tight and bury it. I'm still processing what I saw that day. Yes, it felt like a home and not an institution. Yes, the staff appeared to love their residents which was very encouraging. It was really clean with fun artwork on the walls. They even have an indoor pool. However, it was my response to the people that I haven't wanted to think about. I felt so blessed to have Sophie just as she is and then immediately felt guilt for being grateful that my children are not living with such severe disabilities.

My feelings are complex and don't necessarily make sense, even to myself. Sometimes I think about returning as a volunteer. When I looked into the eyes of the residents (the ones that would allow that) I saw living souls. I saw life with value. I saw love. So my fear and level of discomfort have really rattled my cage. I realize that I still have a lot of work to do and I am so grateful to my daughter Sophia for opening up a whole new world to me.