Monday, October 17, 2016

Gotta Let Your Soul Shine..

...Shine 'til the break of day.

Josie's teacher has been sending me some photos of our little school girl. She writes, "Josie brings so much joy to our classroom. From the minute she arrives, she's got us all laughing."

That's my girl. Life isn't what we planned, right? We sure didn't plan that Josie wouldn't be able to walk into her kindergarten classroom by herself or talk to her friends, but if she can laugh every day and be someone who brings joy to those around her, well, she's doing just fine.

So why the title of this post? Soulshine is one of my all-time favorite songs. It's originally an Allman Brothers tune, written by Warren Haynes with vocals by Gregg Allman. Warren's kept it strong with his Gov't Mule version.

So get this... in two nights in NYC, there will be a benefit concert celebrating the 20th anniversary of a beautiful foundation called A Song of Love Foundation. It's a non-profit organization that is dedicated to creating professional, uplifting songs for children going through a tough time - either medically, physically, and/or emotionally. And for this event, they've chosen Josie to be the recipient of the 27,000th Song of Love!!

Pretty amazing, huh? It gets better... the event is a concert featuring the music of the Allman Brothers performed by some incredible artists like Scott Sharrard, Jackie Green, Scott Metzger, Marc Quinones, Shawn Pelton, Pete Levin, and Brett Bass. Check out the announcement on Gregg Allman's website!

Two full sets of Allmans. There are just so many incredible songs. I mean, Whipping Post, Midnight Rider, Blue Sky, In Memory of Elizabeth Reed, Jessica, Melissa.. The songbook goes on and on.

But this is why it's so personal and meaningful.. Before the sets kick off, the entire audience will be given the lyrics to the brand new Song of Love.. Josie's song! Josie is going to have her own song! We're so moved by this and just so grateful for every opportunity to help raise awareness for Foxg1. Thank you so much Songs of Love!

Stay tuned for my post with Josie's song!

Back to this post title, Josie has given me a new definition of Soulshine. She speaks and loves through something so much greater than words and body language. It's something I don't know that I'll ever have the words to describe, but she sure let's her soul shine.

Let your soul shine,
It's better than sunshine,
It's better than moonshine,
Damn sure better than rain.
Lord, now people don't mind,
We all get this way sometimes,
Gotta let your soul shine, shine till the break of day.

Oh and here is Josie with her new friend in school, Jasmine. Note their hands:

Josie: Oh girl, Hillary crushed the Donald in round one of the debate!
Jasmine: But that red pants suit? A little much.

Thursday, September 8, 2016

Good Morning Little School Girl

Today is momentous.

I am writing this from the second floor, in the boardroom aka "the parents waiting room," of the Little Village School while Josie is downstairs in her Kindergarten classroom.

Josie's first day of school. Josie's first day away from home.

Throughout 2014, when Josie's seizures were bad, really bad, and we were in and out of the hospital, it was hard for me to envision this day. The idea of handing her over to spend the day without us nearby, or without her Janny (Janice/nanny) was unfathomable. And here we are.

I'm sitting in this boardroom alone, surprisingly. I guess it's not every child's very first day away from home. Yup, this is my first rodeo. People from the school, including the school director, have been coming in to give me reports.
"Josie is doing great, she's laughing hysterically at animals noises."
Obviously, who doesn't laugh when adults make animal noises?

Josie's new PT just came by to see me and immediately said, "wow, she's cute." That face is gonna get that girl everywhere, I tell ya.

There is just so much I can say about how this day feels. I know, while I'm sitting in this room, which, by the way, now has four more (emotional) moms, that I won't be in this room every day. This is a new chapter and Josie is able to receive the education that is available to her. This is exciting and amazing. And eventually, or maybe never, I'll get used to not knowing exactly what she is doing every minute of the day. I do know that she is spending her days in the most enriching environment. She has her own nurse who is looking out for her every need.

When we came for "meet the teacher" yesterday, we walked into her classroom to a parade of Teacher Assistants celebrating Josie's arrival. Janice and I both cried on the spot. Her teacher is perfect. The six TA's are perfect. The teacher next door came by to meet us because she's from our town!

Oh two dads and another mom just joined this "parent's waiting room." It's a party now.

One of the most beautiful things about being a special needs mom is meeting so many people who choose to work with disabled children. I think some people are born with a gene to care for those who need more care. They're so patient, truly excited, concerned, soft, strong, thoughtful, comforting, and loving. I am so grateful for this breed of people who choose to follow their caring passion. They are instrumental in our children's progress. I've always loved to watch the excitement in our therapist's eyes when Josie does well. And while they go on and on talking to me about all the different thoughts they have about Josie's therapies, abilities, and their plan for her, I can't help but drift off and think, man, are we lucky you care so much.

This school, the Hagedorn Little Village School is filled with these incredible people who make a tremendous difference. If you can feel energy around you, this place is humid with love. I feel really good about this. I'm confident our little Beanie girl is in great hands.

I think I'll stop being anti-social and join the party of parents in this waiting room, now.

This post title couldn't be more fitting. It's an old blues song by Muddy Waters that Widespread Panic (and others) cover sometimes. And these are the very words I said to Josie when she woke up this morning, "Good Morning Little School Girl." She smiled. And to make it even more perfect, I'm going to see Widespread Panic on Saturday night in Coney Island with my closest friends. Ain't Life Grand? That's another Panic song. I'll stop before I keep speaking in song.

Josie's teacher, Kaity!

Janice trying not to cry while saying goodbye to Josie as she gets on the bus for her first day.

How many days will I go to school with you, Jojo?

Monday, August 15, 2016

Sorry, Not Sorry.

I'm officially a published writer for The Mighty!

It's an incredible site with the tagline: We face disability, disease and mental illness together.
It's user generated content, generated by people who are faced with the aforementioned challenges. I feel very lucky to have a platform to talk about Josie and Foxg1, all while raising awareness and potentially spreading some positivity to other parents of special needs children.


Or read the text here:

When I Hear These 3 Words as a Special Needs Parent

Is it possible, for what kids with FoxG1 lack in terms of cognitive and physical ability, they make up for in cuteness and sweetness?

You might be reading this and thinking, how is there anything cute about a severe, rare, neurological condition that hinders the ability for children to do most things?

Well, let me tell you about my FoxG1 girl, Josie. She was born with this doozy of a genetic disorder. She is four-and-a-half-years old and cannot sit up unassisted. She can’t talk, nor can she take care of her most basic needs. Her brain just won’t tell the rest of her body what to do.

People often say to this, “I’m so sorry.”

And I admit, as a mother, I am sometimes sorry for her, too. She would love to do all the things four-year-old girls do. She’d love to run and play, and make videos (the app) with her brother. She sees what’s going on all around her. She wants in.

And sometimes, only sometimes, I’m sorry for us, too.

Of course there are times when her brother, father, and I all wish we could do things with her she’s not able to do.

But, don’t be sorry for us.

Sorry, we’re not sorry.

For all that we don’t have, we have something else.

I always say “it’s just different.”

Josie wakes up with the biggest smile on her face. And she’s got that kind of smile that just grows and grows. You know when the sunset turns the sky all beautiful shades of pink and yellow and orange, and you think it can’t possibly get more beautiful… and then it does? That’s what Josie’s smile is like. And she smiles all day. And she laughs. It’s contagious. You simply cannot be unhappy around this little ray of light.

OK, well, she doesn’t smile while she is having a seizure or when she is tired. But most of the time, she is the happiest little girl in the world. And this is one common characteristics of most FoxG1 kids.

Watching the will this little girl has puts life into perspective. She doesn’t give up. She will try to move her little tushie forward to get to her toy all day long. Her will is tremendous, and it is my constant reminder that I should never give up either.

She’s also given us something beyond value; she gives us something to teach others. Life doesn’t always turn out the way we planned. Sometimes children aren’t born with all the abilities most others have. Some things are harder and some things are easier. When that ridiculously adorable face is smiling at me as she tries over and over to bring her hand to her toy, all I think is, this is just different and we are so lucky for our “different.”

We’re not sorry.

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.

2. Seizure-free!
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.

Friday, May 6, 2016

Jeremy Spoke in Class Today...

Josie didn't get into the school I gushed about in my last post, the Henry Viscardi School.

I'm not going to lie. It was disappointing. They had us go there for two days of evaluations and really sold us on the school. We spoke at length to the medical team about what to do in the case of a seizure. They wanted every detail of her medicines, and so much more. I really think they should consider changing their process. Why not just evaluate the child first? Don't give parents false hope. And then, if you accept the child, bring the parents in to discuss everything the school needs to know about that child. There was more that disappointed me in the way they handled it, but no point in writing about it.

Their reason for not accepting Josie was, "We don't feel this is the right program for her." Ok, so why did you spend so much time telling me how the school has expanded its program to meet the needs for "kids like Josie." We saw a boy we knew from Keep Moving Forward who is no more able than Josie, so we figured, if he is here Josie's a lock. Multiple people at the school said, "Don't worry, she will get in." That shouldn't be allowed.

Oh, am I still talking about it?

I was hopeful because it is the closest school to home. By close, I mean 20 minutes away. I think I was trying to paint Viscardi as the best possible school for her, even though in reality, it might be too focused on academics for her. When they said they "expanded the program," they didn't really. They're just accepting kids with more cognitive disabilities, but they haven't actually changed the program to meet those kid's needs. She needs more sensory and physical attention. I certainly don't want her to just sit there not actually learning because the program is too advanced. I was telling myself it was the only option because I didn't want to consider a school that, while might be much more appropriate, is farther away.

Well, I have to get over that.

I ran into a friend in a store recently and talked about special needs schools with her. I don't see this friend often, but when I do, she often says the one thing that makes me see things differently. I have mounds of respect for her as a mother and when she looked at me and said, "You need to get over the distance." I knew at that moment she was right. She is also the same woman who said one of the greatest things to me a few years ago. When I said to her,"Josie has a long way to go." She responded with, "She has a long way to get there." That changed me, Margaret Higgins.

Fast forward to yesterday. I brought Josie to the Hagedorn Little Village School in Massapequa for evaluations. It was a lovely experience. This school came very highly recommended from several therapists who know and love Josie. It's smaller than Viscardi and I never once felt like we were interviewing for Harvard. The supervisor we met with pointed out all the great things Josie was doing right away, "I love how you look at me when I say your name, Josie." "Oh look how you grab exactly what you want."

They told us all about the school and how the classroom will work. They said we will request that Josie has a one-to-one aide with her all day. I love that.

When I asked when will I know if Josie is accepted? She quickly said, "Oh, she's accepted!"

Don't cry, Nicole. Be cool.

What a relief. I felt this overwhelming sense of opportunity for my little girl. She can experience something new. Something that will help her progress in so many ways. She loves to be around other children and now she could be on a daily basis. I felt very comfortable there.

Oh, but then I remembered the 40 minutes it took me to drive there and the multiple expressways. How I hate merging.

This isn't going to be easy. I've never handed Josie over to anyone. She's always been home with us or with Janice.

She will take a bus. There will be a matron on the bus watching her. The issue is that if she were to have a seizure, that person can't administer medicine. The driver would have to pull over and call 911. I'm wondering if there is a medical transportation option instead. Then again, perhaps her seizures are a thing of the past anyway. Positivity, Nicole, positivity.

I still have questions to ask, and still have to meet with the school district to discuss many things. But, for now we know she has a great school to go to in September. I just hope my comfort level with the long bus ride only gets better.

On another note: two days ago, Josie was home with her speech therapist and Janice. Tanner and I said goodbye to everyone and walked out the front door. A few seconds after we left, Josie said "Mama." I missed it! It's like she was calling me. It was the first time she said mama, although my mom says she heard her say it once before. I've been pretending to leave the house ever since.

She'll say it again. She'll do so many things. She has a long way to get there.


The reason for my blog post title: Josie spoke with her speech teacher, all this talk of school, and the fact that I just saw two incredible Pearl Jam shows at Madison Square Garden. They played "Jeremy." Man, I love that band. I admit, I cried when Eddie Vedder told the crowd about a condition called EB that the band is raising money for. The next day I looked up EB and watched a video about this severe and rare skin disorder. Heartbreaking.
The greatest thing about a band like Pearl Jam raising awareness and money for EB Research is that a cure for EB can also mean a cure for Foxg1 and the 6,800 rare disorders out there. If one gene mutation can be fixed, perhaps they all can.

Thank you Pearl Jam.

Wednesday, March 30, 2016

This is happening : An overdue update!

It's been too long since I've posted and I have so much to share!

1. So, after I wrote the last post saying that Josie hadn't had a seizure since Dec. 30th, she had one the next day.

Go figure.

That was in early February. She had another in early March. That's two seizures in the past three months! And to be honest, the second one is questionable whether it was a seizure or not. Two mild seizure in three months is an incredible thing to report. Since her seizures started in April of 2014, she averaged four a week. For the first six months, they were often grand mal seizures. As anyone who has been following this blog knows, we had been continuously adding and changing her meds to find the right cocktail to stop them.

As I said in the last post, I'm crediting this to good 'ol marijuana! Who would've thought the one thing that saves my child's brain is the very thing kids grow up being told to stay away from. I swear I may go to Jamaica and pray to ganja g-ds for their dedication to the plant. Well, that's probably not necessary.

She's still on her heavy duty meds: depokote, fycompa, onfi, and a ketogenic diet. But none of the aforementioned worked this well.

And she is doing so great all around.

Before these last three months, she'd start to progress and then WHAM a seizure would set her back. They say having a seizure is like your brain running a marathon. Think of it as a 26 mile setback. And she was averaging four a week! My poor baby. But Josie girl never stopped trying. I swear she is so smart. And now she has the opportunity to progress without the setbacks.

It's amazing to see her now. She's so happy. She's so vocal. I mean SO vocal. She yells and laughs and babbles all day (and some nights). She's putting words together; her "hi" is clearer. She says "yeah" and she means it. And she will follow our mouths and imitate the movements when we say words like "love" and "mama."

It's adorable to hold her, look her in the eye, and very slowly say: IIIIIIIIIII LLLLLOOOOOOOVVVVEEEEEE You! She smiles immediately when she hears IIIIIII and then she puts her tongue under her top teeth like she's trying to say LLLLLL.

She's getting much closer to crawling and scoots in complete circles. In her walker, once she gets her groove on, she walks so quickly across the house to get to her favorite toy with the funny orange monkey. We call him Georgie. "Get your Georgie, Josie." She won't stop until she's got him! I always think of Johnny Depp in Blow when we say Georgie and never told anyone that until just now. "Money isn't real George." I digress.

Ok..on to number two.

2. We're hoping to get Josie into school in the Fall. There's only one school that I feel comfortable sending her to. It's the Henry Viscardi School and it's only 25 minutes away. We would pass by it on our way to Keep Moving Forward (PT gym) and I'd always point to it and say, "Josie you might go there one day."

I really hope she gets in. We had two days of evaluations recently. It was a strange experience. I was so nervous that when I got home I had to take a nap! It's a strange thing bringing your disabled child in for evaluations for the school you so hope accepts her. You see, Viscardi just recently expanded its program to include more "children like Josie." Before, it was for kids with more physical disabilities, but not such cognitive disabilities. They're opening it up to include more children with cognitive challenges.

I was hoping she would be her most alert, adorable, engaging, self during the evaluations. She was tired.

Rich apologized for her and said, "she's very tired right now," I kicked him under the table and said, "no she's ok!" It was almost an SNL skit. But, she stayed awake and flashed her winning smile.

The following day was more intense. She was asked to point to certain things on a poster board. She did pretty well if you ask me. She pointed to the right things. When the man asking her the questions asked "where are the boy's knees?" she swiped the bottom of the boys body.
The man said, "so not purposeful."
And I said, "oh those are his knees!"

I may or may not have tapped Josie's knee under the table to remind her what knees are. She didn't need my help, though.

So, we should know soon. Fingers crossed. Oh, I forgot to add, there is a pool there! She would swim twice a week!

Here we are outside Viscardi:

And here is Georgie and some pictures of Josie on her bike.

*Post title song reference: This is Happening is an album by LCD Soundsystem. I just saw their reunion show after a five year hiatus and it was bananas.

Thursday, February 4, 2016

Peaceful Easy Feeling

I'm afraid to write this, but I'm going to put superstition aside and share the good news that Josie has not had a seizure since December 30th, 2015.


This is her longest seizure-free stretch since they started in April of 2014. It could be due to the CBD oil. She's still on a pretty heavy arsenal of meds on top of the CBD oil, but I do believe it's the CBD oil that's helping the most. Ain't that kind of funny, Mom? Soon, we may try dosing down on some of the other meds to see if we can reduce them. That would be fantastic.

It gives me such a "peaceful easy feeling" to think of Josie being seizure-free. Her brain is calm and she can move forward cognitively without being set back over and over again.

Of course, that post title is a tribute to Glen Frey. May you rest in peace. And may the great David Bowie and Maurice White also rest in peace. Sigh. No more for a while, please!

Some recent photos for your cuteness pleasure... Oh those pigtails!

Sunday, January 24, 2016

The "R" word

"What a retard." "Are you retarded?"

I hear the word used all the time.

Many of my friends say it. People I'm related to say it. I've even heard another special needs mom say it. Yes, I hate it. But, no, I don't blame the people who use it so freely. It's just the way they (we) grew up. I've said it my fair share in the past. It was probably part of my regular vernacular for a while. It's always been a commonly used word and some people just use it more than others.

I cringe.

I want to tell the person not to say it around me. And if you're close enough to me, I will tell you not to say it. The real reason I'll tell you is not just because I find it offensive, but when you say it, it's clear that you really don't know any better. And as an adult, or even a kid, in 2016, you should know better.

Look around and see the rise of children with autism and other conditions and disabilities. Chances are, your family member, a close friend, or someone you work with is dealing with a child with a disability. It's just so far from being an appropriate term to use.

A few months ago, a friend asked me to explain exactly why the word affects me the way it does. She said, "suddenly, because you have a special needs child, you take offense to a word people just say? It's like you're relating it to your kid."

I didn't have the right answer to explain it at that time. Now I do.

The other day I was able to feel the magnitude of why the word is so offensive. I knew it would make me cringe whenever I'd hear it. I also knew that by hating it so much, I'm connecting it to my daughter. But, I didn't quite clearly understand exactly why I hate it so much.

Until I got a form to fill out for the school I'm hoping Josie is accepted to one day.

The form said:
If a child has multiple disabilities please check all that apply:
Mental retardation
Emotionally impaired
Speech impaired
Visually impaired
The list goes on.

I couldn't check mental retardation.

I wanted to write next to it, "Don't you call her that." Is that even the term still? Isn't there a new term for it since the "r" word has been so widely used to mean the stupidest a person can be? Can't we just say intellectually disabled.

My daughter isn't stupid. Her brain won't tell her body what to do. But, she's in there. She is smart. She knows. I'm sure of it. Because of the gene that was misspelled while her DNA was being written, when she wants to speak, her brain can't send the signal to her voice and mouth to put it together.

When she wants to reach for something, again, her brain can't coordinate it with her arms. She has a neurological genetic condition that has limited the ability of her brain to function the way she wants it to.

Oh, it's just semantics. Sure. But, the word "retarded" has been polluted to the point that when anyone says it near a mom who has been asked to confirm that her daughter is in fact, mentally retarded, he or she is absolutely, unequivocally affecting that mom.

That person is making her cringe inside.

I want to say ALL of this every time someone says, "how retarded" something or someone is, but 90% of the time, I don't say anything. I don't want to defend myself on this one. I can brush it right off. I realize they have no idea. My hope is one day, they will just know better.

And if they've read this, they know now.