Sunday, July 21, 2013

It's Not All Peaches and Cream

Noel thinking I can't see her.

I've been meaning to write a post after reading a fellow angel parent's blog. He captured so well what we go through as parents of children with Angelman Syndrome. Although our angels are happy most of the time, we live with much more than just the happy demeanor.

Regie Hamm's blog post is titled "How's Your Daughter?" and I highly encourage you to read it. You can view it by clicking on the title of the blog post above.

I think people mean well when they ask us questions, but I often think the questions come from not knowing what to say. Regie gets "How's your daughter?" frequently, but the phrase that gets me the most is "Noel got so tall." The reason it bothers me is because she didn't get tall. She is at the very bottom of the height spectrum for her age. She has two cousins that are exactly the same age as her that tower over her.

So why do people say Noel has gotten tall when she hasn't. Probably because her mind and actions are that of an infant. They expect her subconsciously to be smaller in size like a little kid because she acts younger. She's 11 years old.

One thing that really jumped out at me was when Regie began describing what it is to care for an angel that others really don't think about. It is a 24 hour job. You must always be on high alert, never resting for a moment. Otherwise, your angel is going to grab something dangerous. Something as simple as a bottle cap that she removed from a bottle a family member left behind in the house where she can reach it. I won't even begin to tell you the amount of items I have fetched out of Noel's feces. It is only by the grace of God she survived eating those.

Regie is blessed to have a wife to share the responsibilities of raising their angel. I don't have that. He speaks of being mentally and physically exhausted. I can relate. I don't get a break except for when Noel is healthy enough to attend school. She actually has a medical exemption from school because her constant strange illnesses and doctor appointments make it impossible to meet the attendance requirements.

I feel very blessed in that it was easy for me to accept Noel's diagnosis from the very beginning. I don't feel mental exhaustion with Noel (my teenager gives me that), but she is physically exhausting. She is getting heavy to put in the car, go up and down the stairs, etc. because she doesn't help and she even leans in a way that almost makes me fall over often. I actually say a prayer of Thanks to God every single time I get to the top of the stairs safely (and no, I can't put a chair lift on the stairs as my walls are made out of plaster). Then there is the no sleep thing. Noel doesn't believe in sleep. She thinks it is for wimps. That is perhaps the hardest part of Angelman Syndrome for me.

I'm not sure what the right thing would be to say to someone with a child like Noel. I love my life and I love Noel and I couldn't imagine living any other way. I think maybe we as parents just want other parents to understand; to have a glimpse at what life is like for us. I try not to dwell on the things I'll never be able to do, like go to the beach and read a book while my kids play in the ocean, but rather on the things I can do, like go to Florida to visit family.

Sunday, June 16, 2013

My Little Couch Potato

Photo courtesy of TatsuoYamashita

My oldest daughter put the Netflix for Kids app on Noel's iPad. As soon as Noel discovered it she knew what to do. She now watches every Barney video available to her. I can't get her off of it when she's home.

Noel has gotten so addicted to the Netflix app on her iPad that she won't do anything else. In addition, she wakes up in the middle of the night and won't go back to sleep because she wants to play with it. I'm not really sure what to do, as she doesn't understand my words. It isn't like I can tell her there is a time and place for playing with it.

I'm glad that Noel is capable of using the iPad to play the videos she wants. I just wish she'd be as interested in learning how to communicate with it. Maybe some day. Until then, I need to figure out how to get sleep at night.

Tuesday, April 16, 2013

Back from Vacation with a Broken Arm

Noel and Shabooky the Clown

The girls and I took a trip down south to visit family. We were excited about meeting a new addition to the family, baby Callie, and spending Easter break in sunny Florida. We traveled by car and arrived on the evening of the 27th of March. Two days later (Good Friday) my mom and I planned on heading out to purchase gifts for the kids Easter baskets. Because Noel has Angelman Syndrome and requires diaper changes, I had to take her along. I turned around to grab her diaper bag and a cup for her to take along, and in that split second she fell and broke her arm. 

Noel can't talk, but I did notice she was holding her arm out. Still, I ripped off her clothing checking all over for swelling or bruising. I saw none. She wouldn't stop screaming. This alarmed me because she has a high pain tolerance and never cries more than 60 seconds after a fall. After seeing Noel flinch when checking her arm, my mom suggested we go to the hospital to get an x-ray. Sure enough, it was broken. Not the best way to start off a vacation. 

The hospital put a splint on Noel and gave me instructions to see an orthopedic doctor within a few days. It was a holiday, so none of the doctors were open. Noel spend four days in that splint before she could get a hard cast and I'll let you guess how many times she took it off! I had to be super vigilant during that time, which meant no relaxation. We were happy, however, to get an orthopedic doctor that was sympathetic and agreed to put the hard cast on. From that day on, life was so much easier. 

The rest of our stay in Florida was a blast and since Noel has a high pain tolerance it wasn't but a few days before she could stop taking pain medications and enjoy herself. She got to hang out with Shabooky the Clown at my mom's church festival, hold an alligator at the Alligator Farm, see the parade at the Catfish Festival, watch her sister ride a bull at the town fair, and stop by Ponce de Leon's Fountain of Youth park. Of course we also had BBQs with the family, played with baby Callie, went to church, and had lots of good food with family and friends.

We wore ourselves out, but it was worth it. Our doctor here in Jersey says she still needs 2 more weeks in her cast, but that everything is healing perfectly! I'm so grateful God worked it all out and that my mom was around to take us to the hospital at the time of the fall.