Tuesday, June 28, 2016
Maybe when things are going great, I feel less inclined to blog. No news is good news, as they say. But, there is so much good news to report. Where do I begin?
These are all the things I want to share:
1. Josie is going to school in September!
2. She has been seizure-free for three months now!
3. She's so much more alert and present and just happier than ever!
4. Tanner has melted my heart with the things he's been saying lately.
5. A music group I'm a member of held an event and raised money for Foxg1!
All of the above deserve a separate post, but I'm going to cover as much ground as possible while I'm here.
1. School. It's happening. Josie will be going to the Little Village School in September. Oh the range of emotions I've been experiencing lately. It really hit me hard when her therapies at home came to an end. All these amazing therapists that have been coming over three times a week for the past three years will no longer be coming over (so often). They've become like family and they all truly love Josie. I will miss them and will miss my front door being a revolving door with people in and out.
I was very nervous about the distance to this school. It's 40 minutes away. And the idea of just an aide being on the bus with Jojo wasn't enough for me. I was told that if she has a seizure, they would have to pull over and call 911. No bueno. So, the school district, instead, is providing a nurse who will come to my house in the morning, ride the bus with Josie, stay with her all day in school, and ride the bus back with her. I couldn't be happier and more relieved. This alleviates my concerns and makes it possible for me to send her to school. Thank you, school district.
I'm excited for Josie. I'm feeling a lot about handing her over and not having her home all day, but I trust this is the best thing for her. I just choked up writing that last line.
I bow down and thank the higher power for the creation of CBD oil. Josie's been seizure-free since March 4th, and that one was so mild it's questionable if it even was a seizure. She had one mild one in Feb. and one in Jan.
Before Dec. 30th, for about two years, she was averaging four seizures a week. For two years I felt my heart was living outside of my body. I don't know if that makes sense, but that's how I explain the anxiety. I was always on alert. We learned to deal with them very calmly when they happened, and over time, with all her medicines, they became less severe, but every one broke my heart. And now that she is not suffering from seizures, she is progressing!
3. Josie is so much more alert! She's just more present and is laughing and smiling more. She's sleeping better at night, and she is just happier! She's rolled over from her back to her belly all by herself a few times. And she is trying so hard to talk! She says hi! I've got no doubt that she will continue to progress. People often ask me, "will she walk?" "will she talk?" I will never say no. Let's let Josie show us what she will or will not do. Anything is possible.
4. Tanner. The other day he said to me, "Mommy, isn't it cool that there are only 190 kids with Foxg1 in the world and we got one of them." Heart. Melt. I didn't want to make too big of a deal about how incredible his outlook is. I just said, "right! we're so lucky!" At that moment I realized, that defines how our family feels about our little girl. We are so lucky. She is so amazing and makes everyone who knows her better for it. The whole world should see special needs through the eyes of Tanner. he's something else. And to watch him with Josie... just melt.
***That's how this post got it's title: "Melt." Phish's "Split Open and Melt" describes my heart when I see how Tanner feels about his sister. Plus, I'm going to see my all time favorite band, Phish, with a group of girlfriends tomorrow and I am so so excited. For me, seeing live music with friends is the remedy to all of life's stressors.
5. NYC Music Freaks fundraiser. This past Fall, I was added to a private group called the NYC Music Freaks. It's a group of about 600 people who are, well, music freaks. It's basically an email forum that's been around for 16 years and you can't just join. My "music angel" Julie vouched for my freakiness and had me added. It's like I got the secret society tap. Mom, I made it! I'm officially a music freak. It's fun to read the emails every day; people are always writing reviews, selling tickets, looking for tickets etc.
About a month ago there was a "Freak's talent show" event where the talented freaks in the bunch performed. Some serious talent in this group! My two friends, Julie and Phyllis, asked the event committee if they could add a charitable component and told them about Josie and Foxg1. They immediately said yes, and the event raised about $1200 for Foxg1. I was moved by this and felt such a great connection to this new group of friends.
And get this: one of the founding freaks, Mitty, donated his art for the silent auction. He donated a framed photo of Jerry Garcia on stage with Phish's Trey Anastasio. For those who don't know, this music event never happened. Mitty named the photo "What If." At first, I didn't realize why I was so drawn to it. Well, it was cool and I loved the idea of the two of them jamming out together. The frame matches my decor and I just thought, I'd love a momento from this event. I bid on it and won it. My money goes straight to Foxg1 so it's really like it was a gift. On the drive home I looked at the name "What if" again and laughed. What IFF is the slogan for the International Fog1 Foundation. Our marketing says: What IFF our kids could talk. What IFF our kids didn't supper from seizures. What IFF our kids were cured.
Talk about serendipity. It's now hanging on my wall and has so much meaning.