Thursday, November 18, 2010

Watching my future run and jump

Earlier this week, I had the pleasure of meeting with another mom who has a child with Prader Willi Syndrome. This woman has been a lifeline to me in more ways than one since Olivia was born. When Livie was diagnosed and I had our first visit with the geneticist, at the end of the visit he asked me if I had any more questions. I only had one - did he know of anyone else in South Carolina who had been diagnosed with PWS? And could I talk to that family?

Lucky for me, he did. AJ was diagnosed at 8 months and is now 3. Her mom called me not too long after that conversation with Dr. Pai. I had so many questions for her. I was still in a daze, and many times over the past year I have asked her the same questions over and over again. She has never ceased reaching out to me, even when I absented myself from the world for a little while. I am so very grateful for that. She gave me some hope when I didn't have any, and she gave me some valuable resources that we would have never known about otherwise for quite a long time. Without her, we would probably not have found Dr. Miller for quite a while, and as a result Olivia has better care than she would have otherwise.

She saved me hours of research by passing along shortcut information... and she did it cheerfully and without ever making me feel obligated or intruded upon. It's a fine line to walk when someone needs help and she did it with grace, compassion, and an open heart.

As blessed as I am by all that, I am even more blessed to meet her precious daughter. Ayden Jane is so stinkin' cute, spunky, and funny. We told her she was a hoot, and she grinned up at us - "NOT hoot!" She totally got it. She knows she's funny. More than anything else, that gave me hope. For a child to be funny, they have to have an understanding of nuance and subtlety. It's a great sign of intelligence.

AJ is on the higher end of the PWS spectrum, and she's very much like any other 3 year old in many ways. She has a very strong sense of self, likes and dislikes, and was very polite. She did have some delays, but they seemed minimal and mostly speech related. Not at all what I envisioned for our life a year ago. The very best part of my day was Ayden Jane taking my hand twice - once as she walked down the stairs, and once while walking along outside. This really touched my heart. When Amelia was born, we snuggled constantly and she was rarely out of my arms. When Olivia was born, that was impossible. Even after we brought her home, to feed her required this odd position on my knees where she wasn't even held close to my body. One of my deepest sorrows was missing all that physical contact when she was a baby and wondering if we would snuggle and wrestle and play around with each other as she grew up. For some reason, the simple act of AJ taking my hand told me it was going to be all right.

While she played - running and jumping - so did my heart.

Safest place in America to trick-or-treat

We live in the ultimate gated community! There is only one way onto Parris Island, and the gate guard has a rifle. You need ID, insurance and car registration to get past him. The long causeway has water on either side of it, and in case you drove past the first guard without stopping, there is another one at the other side of the causeway to catch you.

We're surrounded by water - no one can get on without going through the front gate.

Military Police patrolling the streets in a car and on foot throughout the evening.

"Hi, Daddy!!"

Some of the neighbor gang... fun to trick or treat with your friends!
One of the military chaplains and his decorations.

Amelia with her favorite "Princess Hair". Her hair is so naturally curly that if I pin it up while it is freshly shampooed, it looks absolutely beautiful.

Home at last!! The best part... eating the candy! And this is how Olivia spent her second Halloween... very different from last year. She was snoozing in the hospital instead of at home in a nice cozy bed. Look, Rafe! She's lying on her side! No more nap nanny!

Saturday, November 13, 2010

Developmental Objectives

I've found some great blogs over the past few months that are helping me wrap my mind around some of the things I will need to be teaching Olivia. I'd rather be proactive and learn about it now so I can have tools available when the time comes. I'll probably still be behind the power curve because it takes me a while to get organised, but this is one with great thoughts and ideas that I really enjoy. It confirms many things I'm already doing with Amelia and shares some new information I could use in the future.


Low Country Oyster Roast!

One of the advantages of living on or near a military base are the fun programs they offer for families. Tonight we went to an Oyster Roast at Laurel Bay and it was fabulous! The community center is right by the water, and as we arrived there we were lucky enough to see the brilliant orange and pink sunset through the mossy oak trees reflecting off the water. It was absolutely beautiful.

Amelia, of course, was not too interested in fresh hot oysters. She had a few bites of hotdog and some crackers and then played with the other kids. But Mom and I dug in! We brought our own oyster knives and towels (a custom down here that I learned the hard way - by forgetting them at the first oyster roast I went to). They roast the oysters in big mesh metal boxes, then dump them out in big piles onto the middle of the tables. There are buckets by the sides of the tables for the oyster shells, and you start opening them up and popping them into your mouth as quickly as you can, tossing the shells into the buckets to be saved and returned to the marsh. We had sleeves of saltine crackers, squeeze bottles of tabasco and cocktail sauce and lemons on the tables. The oysters down here come clustered together in big chunks, so you could grab one cluster and end up with 6-7 oysters sometimes. You just keep turning the cluster around and opening up more shells.

Off to the side, someone was manning Frogmore Stew - basically crab boil or seafood seasoning (like Old Bay) with cob corn, shell on shrimp, potato chunks and sausage. The original Frogmore Plantation is not too far from here on St Helena Island. We missed the local Gullah festival this weekend as Olivia really needed to stay home and rest, as did all of us after the last few weeks.

I wish I had pictures, but I was way too busy eating! By the time we were done, we had a 2 gallon bucket full of oyster shells.

The Montessori Way

This is a post from a blog I really love, and just another confirmation that putting Amelia in a Montessori school was the perfect choice for her. I know we won't always be able to afford it, but I love what it's doing for her now. I couldn't agree more with the Finnish approach.

Monday, November 8, 2010


How is it that the days go by so quickly? I've a lot to report and not much time to report it in this week. Maybe tomorrow night.

HI friends and family and curious onlookers.