Thursday, July 9, 2009

Will you say Hi?

Such an easy word to say. Well, sometimes. If you see some one who is homeless, do you smile and say, "Hi." Or do you look away? If you see someone who is in a wheelchair, do you smile and say, "Hi." Or do you look away? If you see someone who appears to be Developmentally Delayed, or mentally impaired; do you smile and say, "Hi." Or do you look away?

I know that it is uncomfortable to be presented with the impairments of others. I know that awkward feeling when all is right in your world, and you meet someone who does not have the same abilities or opportunities or fortunate circumstances as you; and you just don't know what to say. Before Ellie was born I was like you. I didn't know what to say. I didn't know what to do. I didn't want to say the wrong things, or do the wrong things and make anyone uncomfortable. So I just didn't say anything. I looked away, or somehow avoided the situation.

That cold, snowy day in December, 2 days after Ellie was born, when we first received the news that she might have Down Syndrome changed everything. All of the sudden I realized, in a very gut-wrenching way, that people with disabilities are. just. like. you. and. me. This beautiful, joyful, smiling baby wasn't someone that should be shunned. I don't know why it took being a parent to a child with disabilities to finally get it through my thick skull. It's not that I shunned people with disabilities before. I had worked at a local printing company that had a Goodwill Worksite and I would visit with the Goodwill employees in the cafeteria. I still remember Richard. He had a great work ethic and a great sense of humor. But outside of work, I didn't interact with people with disabilites.

I have sometimes wondered if Ellie's DS is some sort of sick pay-back for my overly frequent use of the R-word as a teenager. But then I remind myself that I don't think God is vindictive or mean or spiteful. Down Syndrome is just one of those crazy quirks of genetics - if you stop to think of the odds of having a child withOUT disabilities you get pretty bowled over.

But what happens when these cute kids who stay child-like so much longer than the rest of us, grow up? Are they accepted in society? Is there a place for them in our circle of friends? Is there a place for them in our church group? Is there a place for them on our softball league? How do they make connections and friends in the community at large? I wonder about Ellie's future as an adult. Will she make lasting friendships and connections with others or will she be alone? Being an eternal optimist, I try not to worry about this. I hope that the future will be bright for her and all of our kids.

So I found this website from British Columbia, Canada through a friend in the DS community. It's worth a look: Start With Hi.

Keep your eyes open: you will see some really neat things

I just never know when to expect a new skill or ability. They sometimes appear on queue while I have a planned activity. That happened with a lot of signs after we began watching Signing Time. But gross motor skills have arrived on the spot after much gnashing of teeth and screaming and fussing. In fact we have suffered through weeks and months of painful and difficult physical therapy sessions before some gross motor skills arrived. Things like crawling, walking and climbing stairs required really painful, long, drawn-out therapy sessions and lots of practice before they emerged. In fact, they even required changing therapists and approaches to therapy.

But then, there are some things that just surprise you at unexpected moments. Tonight was one of those times. We had a swim meet at our old swimming hole: the YMCA's waterpark. We were members of the team last summer and have lots of friends there. It is a 30 minute drive from our home and less than 10 minutes into that drive we pass a county pool with a swim team. We chose to try that team out this year as that shorter drive helps me with potty training Ellie. However, we miss our friends. That made tonight's meet a real treat and we sat with our old team instead of our new team. The kids had a blast. Alex got to hang with his buddies who also swim year round with him, and Ellie got to sit with some old friends who brought a bucket of Lego. Well she kept handing me little pieces of Lego connected together. I didn't realize at first, but she was putting them together herself. I caught on to this idea after a few minutes, and then she finally tapped me on the arm so that she could show me how she does it. Watching her master this fine motor skill made my heart leap with joy! She has over-pronated her hand for all grasping and drawing and eating activities since day 1. (Imagine holding a spoon with your thumb under the handle) However, watching her hold those Lego correctly I realized she CAN hold a pencil correctly and manipulate it for a proper writing grasp. I have been doing more work with her this summer and I think it is finally paying off. Yea!!!!!

Lego Rocks! And for those of you who didn't know this: looking for little Lego pieces in a pile of Lego builds your brain's synaptic connections (still searching for the link). So keep your eyes open for two reasons: you might miss something really amazing and you can get smarter looking for Lego. :D

Wednesday, July 8, 2009

Spending My Life In Plan B ..... includes skin cancer? Really?

What a crazy week. I knew it would be as hubby flew out of town on a business trip. And of course when hubby travels - things always go wrong. This time it was sick kids. Alex is still coughing up a lung every night. Why is it always 10 times worse when they go to bed than it is during the day???

It started out as any summer vacation week begins: getting ready to go to swim team. Summer swim team practice prep is easy: bathing suits. Check. Towels. Check. Goggles. Check. It also includes: jogging stroller. Check. Water. Check. inhaler. Check. Goldfish. Check. I run with Ellie in the jogging stroller every time Alex has an outdoor swim team practice.

We were also going to stay at the pool for free swim after practice, so I packed a lunch, sunscreen, toys and towels and suits for me and Ellie. We managed to get out the door on time and had a great time at the pool. Alex got a mild sunburn in spite of the sunscreen, so we skipped the evening swim team practice at the YMCA with his year-round team. Thus began a downward spiral to the week. We missed all the remaining swim team practices as Alex developed a fever Tuesday afternoon and a cough on Wednesday. The fever broke by mid-day Thursday, but the cough is still pestering him. Mostly at night when he is trying to sleep. When the cough developed I called the Doc to see if they could fit him in. Thankfully they saw him at 4pm and confirmed it wasn't swine flu or strep throat. He is on antibiotics, musinex and cough syrup.

On Friday morning I got a rude wake up call to USE SUNSCREEN WHENEVER I AM OUTSIDE. I was mentioning to a friend this funny red bump on my neck and how it had been there for 4 weeks and it's condition (color, shape, size, itchiness, & crustiness) reminded me of a Basal Cell Carcinoma I had removed from my neck 7 years ago. My friend said, "Well if you're concerned about it you should call your Dermatologist." Very good advice. Don't know why I didn't think of it first!

Well, I remembered to call the Dermatologist after I scheduled Alex's appointment. The Dermatologist was able to fit me in on Friday. I brought the kids, thinking it was only going to be a quick evaluation. The PA came in and after a quick look-see through a huge microscope said, "That's a keritosis, and it needs to come off." Out he went, and back in as quickly he came with a tank of liquid nitrogen. "We're going to freeze this off. It will sting a little bit, and be sore for a while." My son thought that was SO COOL! He didn't know Doctor's offices had LIQUID NITROGEN. Wow! And, yep, it stung, and was sore for a while after that, but it went away quickly. I covered it with a very cool pink Barbie band-aide. I covered the rest of me with SPF 70, and back to the pool we headed.

So what is a keritosis? It wasn't a basal cell carcinoma like I had 7 years ago. I wasn't too worried about that when I learned they don't metastisize and they are "cured" by cutting them out. The one I had removed was on the back of my neck near my hair line: not even a really visible scar. The PA told me that the keritosis was not a basal cell, but pre-cancerous. So I googled keritosis, and Google was polite; asking me "Did you really mean KERATOSIS?" Oh, yeah, thanks for the spell-check. A quick trip off to MedicineNet and I have my answer. Well, there is some debate in the medical community as to whether it IS cancer, or it is just PRE-cancerous. That's maybe good. But regardless of the debate; it is definitely pre-cancerous to squamous cell. Is that good? According to the MedicineNet website "Anywhere from 5%-10% of AKs can potentially go on to become skin cancers." I guess it's not melanoma and won't turn into melanoma, so it must be good. Right? Oh. Squamous cells are all over the body. Oh. Unlike Basal Cell Carcinoma Squamous cell cancer CAN matasticize. Not so good. Also, the website says: "While AKs may give rise to skin cancers like squamous cell carcinomas, they do not turn into melanomas. Nevertheless, it is important to keep in mind that people with AKs may be more prone to melanomas simply by having more sun damage." Great.

I feel like I'm on a new journey. I imagine skin cancer is like that bear in the woods. You go hiking, knowing that there are bear, and that they are very dangerous when encountered, but you still enjoy nature and hiking so off you go. Forewarned of course and with your wits about you and the knowledge of what to do if you encounter one. I too have knowledge of what to do to reduce my risks now. I sunscreen always: SPF 30 or higher depending on my activity and repeated hourly if I'm out that long. I wear a hat, especially when I'm running or gardening. I try to avoid spending lots of time outside at the high point of the day. Instead I run and garden in the morning or late afternoon/evening when I can. But I do have two young kids, one a swimmer. So I am not going to hide inside all summer long. I am not afraid of cancer. If it does pop out of the woods on the trail ahead, I will meet it head on. In the mean time I will enjoy the hike.

Since I started this two weeks ago, I found another possible keratosis on my right arm, and as I was researching last night I found maybe a few more on my right leg. Guess I have a call to make today. I was hoping they were just more mosquito bites like I got on the 4th of July. But, they aren't bug bites. Mosquito bites get big and red, and REALLY itchy. So ITCHY I scratch and scratch till they open and bleed. These are small, and sort of itchy, but don't open up like bug bites. Instead they are the same size/shape as the keratosis that he removed. So to all my swim team friends past and present: get your sunscreen on!