After a rough week with my poor sick boy, we end it with a hopefully calm Easter Sunday. I have always loved Easter as it marks spring and an awakening after winter and a chance to start fresh. I love the colors, the decorations, the candy. This year is mine to make new traditions with my little family and I'm hoping to have a relaxing Easter with my two littles and my two furbabies. Yes, two furbabies. We have Dolce, our orange tabby and now we have Ava, a beautiful peach color soft ball of fuzz that we rescued yesterday. Dolce still hates her but we all love her. She is sweetest, calmest cat I think I have ever met. A stop in a local pet store and *bam* another pet. In time, I hope Dolce loves her, too. In other good news - my girl brought home straight A's again and Will stood up in the middle of the room, with nothing to hold on to, and walked away!!!
This past week Will took a sudden turn healthwise. Took him to the sitter on Tuesday, went to work and got a text around 1:00 that he woke up burning up. I went and got him and it has been rough ever since. A trip the doctor and a chest x-ray revealed yet another viral lung infection. As time passes I will venture a guess that he has RSV or something in the family. This would be RSV #4. We didn't do a rap panel, or the swab that determined virus or RSV infection. He was miserable and has been through enough in his life, the ability to "name" his virus wouldn't change how we treated it.
As I have been up pretty much since Tuesday afternoon, I have much time to think. He is sleeping about 20 minutes before waking up trying to cough up what is in his lungs and too thick to move. I look at his sweet face and my heart just aches. It is a mixed emotion, really. One full of love for this sweet kid and another with pain for all he has endured, and whatever is on the road ahead of us. I fear for him with his superhuman tolerance for pain and inability to communicate with me. I wonder will he ever be able to tell me when something is brewing, when he feels really awful. He had an allergic reaction to Zithromax on top of all this, something I never saw coming. He has had Zithromax before so the hives and welts freaked me out and my brain went straight to bacterial meningitis. Poor kid has been coaxed into looking down so many times ever since - chin to chest = no meningitis. Unfortunately, this is the norm. It is having a newborn baby every single day. The mental checklist earache? teeth? belly ache? flu? and on and on. The need for a treatment for this awful syndrome is very really and very much now. I only affirmed that I will not rest until such a treatment is found. And I really won't as anyone who knows me at all will testify!
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As testament to this, my good friend Venessa Amoroso, is living just this dedication. Venessa lives in Westerville with her husband, two beautiful kids and puppy. Her youngest, Daniel, has Angelman Syndrome like our Will, although his "type" is different. Feeling like she needed and wanted to do something, anything, to make a difference after receiving Daniel's diagnosis, Venessa started the Wings to Fly Foundation (http://www.wingstofly.org). So far, there was the first annual Day for Angels 5k and walk which was a big success. Just recently, Venessa opened the Wings to Fly Playspace (http://www.wingstofly.org/playspace/) a special place for children with needs of all kinds to go play, take a music or movement class or even host a birthday party. The playspace is in Westerville but I hope more motivated people like Venessa take the lead - these spaces are so necessary!! If you will be in the area or have friends or family in the area - PLEASE tell them to stop by and say hello to Venessa, Tom, Daniel and Nicole. Let her know I sent you! She is an amazing, warm woman and will welcome all with open arms! We love you V - your tenacity and dedication are amazing!
I hope you all have an amazing day filled with family, friends, eggs, bunnies and chocolates. I am starting my own tradition - an Easter lasagna (rough week = comfort food!).