The Brittany Bowl-A-Thon

Once every 1 1/2 years, I put together a Bowl-a-thon, in honorary of my daughter, in order to raise money for a worth cause. The charity recipient is chosen based upon one of Brittany's multiple disabilities (seizures, gastric intestinal, CP and more). This event started because my family and friends felt helpless when Brittany was having uncontrollable seizures. They all wanted to do something but they (and I) didn't know what they could do. So, my friends and I began the Brittany Bowl-A-Thon. The money isn't just donated, the recipient gives me a few ideas of what they need and we choose something (we've done a respite and camp program for kids with seizures, we began an infantile spasm study program to try to find out why infantile spasms begin, we've created a program at the Epilepsy center). This year, we decided to build a Soft Gym for the children and United Cerebral Palsy Nassau. The Children's Learning Center is the name of the school. The Soft Gym will allow the children to get out of their wheelchairs and play in the least restrictive environment.
This event was October 29 at our local bowling alley. What a great night it was. The event actually brings happy tears to my eyes as I step back and in disbelief see 125 of my closest friends, family and neighborhood friends just bowling, laughing and having a great time. The neighborhood merchants donate the raffle prizes. Close friends donate jewelry, electronic equipment, wine and so much more! It's a night that brings a warmth to my heart and reminds me just how much people do care.
This year we raised, $8,000. I don't ask for ridiculous prices like some charities ($65 a couple). And then people buy raffles etc. Bernie & Susan Leifer (my aunt & uncle) agreed to donate the balance of what the gym would cost..so it's a reality. I get so much fulfillment from that. Granted, I am cursing the week before but somehow it all falls into place the night of the event. So now I am truly on cloud 9. It feels good to be able to play such an important role for children who so deserve it. The next few posts, I am going to include pix from the Bowl-A-Thon!

I Love Charity Work

To me, nothing is more rewarding than raising money for charities. If I was independently weathly, besides from writing out my own personal checks, I would volunteer at some of my favorite charities. Have you ever volunteered? Well I am the President of the PTA at my daughter's school and I volunteer at a lot of events (in addition to doing a Bowl-A-Thon every year to raise money for one charity).
This year, the charity happens to be UCP-Nassau-The Children's Learning Center. These children are from ages 5-21 and they all have various disabilities. With the money we raise, we hope to be able to build a soft gym so the children can get out of their wheelchairs and experience interacting and playing. The event is this weekend and I really hope it goes well. I'm competing with Halloween and Katrina donations so it probably won't be as successful as in the past, but whatever we can raise will help to build this gym.

I want to tell you that if you have never worked with children with disabilites then you should really do it. The return is so much more rewarding than the investment. These children are very special and are the sweetest and most sincere children you will ever meet. Even when they are in pain, they manage to smile and their eyes sparkle. So I really mean it, if you see someone with a disability. Give them a chance to show you what an amazing person they are. It may take them a little time to talk or to get their message across because of their disability but you will see it is worth the wait)!

The Ants Come Marching In....

Nothing grosses me out more than ants, bugs and creepy crawly things in my house. And Jessica loves hiding cookies in the house for a later date. Her emergency stash. So with all the rain, the ants came marching into the diningroom. How do they know that there is food in a house on the floor? How do they find the food I can't even find? Well, I vacumned and scrubbed and ripped apart the room. Now you know it is time for a vacation, when you see one little ant left and he's scurrying for the door and you start to seriously think...."I will let you live and you better go back and tell your friends about the massacre and that they should find another place to hang in the rain". I made sure he left and I felt a sense of conquest.....just so you know, when you come visit me after they commit me, I love flowers and books!

Tested by a 3 year old

Jessica is the child that should have been my first born. I also should be 26 years old not 40! She constantly tests me. I was cleaning the window today, I turned around, she starts fingerpainting on the window with her drink. I go to the table to clean it, she starts putting her fingerprints all over it and proceeds to sit on it. The more I say no, the more she laughs at me. When I raise my voice, she puts her hands on her hips and gives me a dirty look. She is a pissa! Today's big event was pulling down her pants. Everytime, I pulled them up, she pulled them down. Of course she kept falling trying to walk...I finally took them off. I need strength for this little terror. But while I am exhausted right now, she just keeps me laughing....granted she stuffed up the toilet today, destroyed everything I cleaned but I love that kid so much. I can't wait till she starts talking to me so we can fight!! It's ironic to look at a little you!

Legislative Breakfast for Parent and Advocates

Every year, the Long Island Family Consumer Council hold a Legislative in our area. I truly look forward to it. It's an opportunity to show the parent's unity, the legislators are there and I get re-fueled. There are times when I just don't feel that I can do it anymore but after an event like this, I am psyched to continue the advocacy. It's nice to see the politicians get up there and acknowledge they respect us and encourage us to advocate for our children (even if we are a pain in the ass at times). Both Commissioner Maul and Senator Flanagan spoke. They truly get it and understand. Both are huge supporters are those with disabilities..and while I may have ruffled a few feathers this year, I know they understand that I truly had no choice--(my post on my daughter's wheelchair).

This year, there was a girl there who just blew me away. She is a true savant. She composes and plays the keyboard...her musical is unbelievable. Now, while Brittany (that's her name like my daughter) is autistic, mentally challenged and blind. Her music is not just good because of those issues, it would be amazing even if you didn't know that. But the fact that she has overcome such obstacles truly blew my mind. The first song she ever composed is called "Brittany For Momma". Well, I was crying like a baby. It was so beautiful. I was blown away! I recommend that you go to her site and check out her songs (there are a few samples). It is definitely worth the listen and truly makes you believe miracles can happen!

The Missing Sox

Isn't it funny how for one child you deal with issues like walking, seizures and kidney stones, another one hearing issues, no speech AND another one the type of sox he likes to wear are not clean? And the scary part, all have the same relevance and anxiety this morning!

Welcome To Ability On The Go!

Being a mom of a child with a disability is an amazing life experience. It is a rollercoaster ride. The climbs are extremely exciting and the falls come upon you fast and out of control.
My blog will deal with the everyday issues faced with being a mom of three children and actually two children (my girls) have disabilities! Share my triumphs, share my defeats and share our miracles. Please feel free to leave your comments, advice and your own experiences. The first few weeks, I will back track...to give you an idea of how we have gotten to today. While its difficult, my children are my pride and joy. They have taught me to enjoy the world looking through a different set of eyes. They have taught me to appreciate even the littlest things. So, I have learned from them what is the important things in life!

My Layer Baby--My Messy Jessy

Jessica is my baby. After Brittany was born, we debated whether to have another child. We went through genetic testing and the chance of us having another child with a disability was the same as anyone else. There was no genetic findings. So, I decided I wanted another child. A combination of just wanting another little one to enjoy, wanting to take the pressure off my son and also someone for my son to have in the future (I am an only child and I didn't want him to have the burden alone).

So my little Jessica Hope was born. (Hope because of 9/11). I had a rough pregnancy with gestational diabetes and having to give myself shots (which left me with anxiety). Anyway, Jessica was born and from day one, I noticed she wasn't sucking correctly. Call it a mother that has way too much experience..something wasn't right. The nurse in the hospital (the bitch) told me that I wasn't taking feeding seriously that they were getting 2 oz in her. Now if I was a new mother, I would have been hysterical crying....feel like a failure. But this baby came out of the hospital over 1 pound lighter. They lied. They didn't get the food in her.

On her first checkup, I said to the pediatrician...find something physically wrong with this baby or I'm going to jump (if it wasn't physical it was cognitive). He looked at me and said---she has no uvula. I grew up with this doctor my whole life. So I said.. don't BS me, really what is wrong (I don't want to tell you what I thought the uvula was...and he was looking in her throat-lol). A uvula is the thing that hangs down in your throat. I reality, she had a soft cleft palate. I wanted to die. I ran home and did a google search and came up with a story "The case of the missing Uvula". So needless to say, it goes on to say that you need surgery and that many children turn out to be developmentally delayed.

Okay, so this is where I lost it. And I admit it. Jessica is now 3 1/2 years old. We had the surgeries, we had Early Intervention since she was 3 months. I was determined that child was going to eat. And I got her to eat. Jessica is my layer baby. She has a little vision issues, her tubes are always clogged, a little physical issues, OT issues and she doesn't talk yet. She is a smart cookie and understands a lot but there are issues. She is my drama queen. She is a little me and she makes me laugh so much. She kills me when she puts her hands on her hips and give you the evil eye. The girl has spunk!! She's in a special class and I have done everything I could for her. And I admit it, I am angry. I accepted Brittany's issues and I have accepted why Brittany is here on earth. But I am angry about Jessica and that she has issues. I know the whole process of the acceptance and grieving process (I give lectures on it to parents and teachers at school districts). Yet, I cannot move into acceptance with her. I am having a hard time not being upset and feel like I got a real raw deal in life. But I haven't given up hope. I really hope she will talk...she tries. We communicate but that's probably because I have learned how to communicate with Brittany so Jessica is a breeze.

So that' my Jessy, Messy. She refuses to use a spoon, she reminds me of Pig pen from the Charlie Brown cartoons. As soon as she takes a bath, she looks for the dirt. I love my kids so much!! Just thinking about her makes me smile and laugh!

Brittany's Story-The Long Road-Part 2

We finally took her off of steroids because they weren't stopping the seizures. The next year, the seizures continued. We had tried every drug possible. This baby was on more drugs than you can imagine. We were in and out of hospitals. But I got stronger with each day! I researched and researched and researched. I knew everything about Infantile Spasms. I also learned quickly (which I wish I would have known that first night) that the people who are on some of these sites are those who are (many times) the worst cases. So always take the information knowing that there are less severe cases. Reality is, when Brittany's Infantile Spasms moved on to tonic clonic seizures, I left the Infantile Spasm chatroom.

I was now on the level with my daughter's doctors. I was part of the decision making team. We discussed everything and I had the final say on which route we would take. Honestly because it was all trial and error. So after we all discussed it, I would take their recommendations and make a decision on what the next step was. Actually, a funny story was that I thought I was going to be arrested for drug smuggling. Brittany was put on a non approved FDA drug that we had shipped in from Italy, Canada, Mexico. One day, it was stopped by customs. It took me five days to track it down. When I finally did, they said they weren't releasing it because it was not legal in the U.S. I finally spoke with a supervisor and told him---"MY child is going to die from withdrawals if I don't get that drug. So here are your choices--1) let me know who I have to sue and who is going to take responsibility for her death or 2) come down here and arrest me for drug trafficking but bring the drugs with you... Oh let me know what time you are going to be here so the media can be here to witness it. It was 7AM and I was on the phone calling airlines because I was going up to Canada to get the drug and bring it back. The doorbell rang and miraculously, the pills were delivered.

Brittany received PT, OT, Speech, Special Education. She worked so hard and she hated it. Her muscles were like a Rag Doll now. She had no muscle tone, she couldn't even hold up her head. Her seizures continued and we were running out of drugs. I looked at the book written by a prominent doctor "Understanding Children's Epilepsy", Dr. Orrin Devinsky and decided Brittany needed to go to him. After much string pulling (thanks to my sister-in-law), we got an appointment with him. We also had seen about 4 other doctors who were specialists in her type of seizures and no one gave us much hope. She was hospitalized, wiped clean of all drugs and we started over including a modified version of the Ketogenic Diet. Emergency trips to the hospital, weeks on end in the hospital, we just kept trying and trying. Something had to work. I wasn't giving up. I started meeting other families and now I was becoming known as I guess a parent advocate. I started learning all about the Early Intervention Program, I learned all about the drugs, various treatments, alternative medicine (which we tried a different type every two months including Amma Therapy, Herbs, Cranial Sacral Therapy, BioFeedback, Chromotherapy, Aromatherapy, Music Therapy, Hippotherapy and the list goes on). The Holistic College was so intrigued by Brittany that when the founder came in from Korea, they had her look at her. She said it was going to pass,it needed to escape her body. It needed to come out on its own (wonderful I thought).

Now, neurologists were giving out my number along with various organizations to talk to parents whose children were being diagnosed with seizures and infantile spasms. And everytime I got that call, my heart would ache. Knowing the path these parents were going to have to take. To this day, I still get that ache in my heart as I try to give them enough information and hope, yet I know they have no idea what they are in for emotionally, physically and financially.

So now G-d comes into the picture again. I made a deal. Did I sell my soul, I don't think so but if that's what it would have taken, I would have done it. I asked him to point me in the direction. That I would continue to give, to do charity work, to help any possible way that I could...just help my daughter. And let Him direct me and show me what he wanted me to do. So I kept doing my charity work, I kept talking to parents and I honestly got my support from supporting others.

The turning point was this one major hospital trip. We rushed into the city with her having uncontrollable seizures. This time, I was really scared because they were not stopping. Her heart rate was going crazy, her pressure was going crazy and she was seizing out of control. They doubled the Adavan but I thought this was the end. It had never been like this before but after what seemed like an exorcist 15 minutes, the Adavan kicked in and it stopped. The absolute worse neurologist in the world came in and recommended a drug that caused irreversible liver damage. It's your only chance. I went home and researched until 4AM. My gut told me don't do it. I went with my gut and tried two more popular drugs combined with the diet. It's what my heart was telling me to do. I stopped the start of the drug at 4:15AM. I ran over to the hospital to make sure that she wasn't given the drug. And the neurologist was furious with me. I will never forget her purposely vicious words "You know your daughter will never be normal. She is mentally retarded. You do know that don't you?" It was like a firehose put on full blast and smashed me against a wall. I had never felt such pain from words before..and my answer was "I know she is mentally retarded but I want her to live the best life she can and I want to try this first".

Well, screw you Ms. Neurologist because my decision stopped her seizures (for the most part the were finally under control). You were doing a study on the drug and that's why you were pushing it you Bitch.

So a side note to that sad soul:
I am a big believer that what goes around comes around and honey we will meet again. You are the only person in this world that I am determined to meet up again with and I will. And my daughter will walk to you in her walker and she will show you the beautiful girl that she is. Because you cannot even hold a candle to her as a human being. She certainly outshines you and has changed this world in so many ways, more than you can ever accomplish, she is a star!!!"

So that was a little over 1 1/2 years of torture. Until Brittany was 2. On her third birthday, we didn't have a birthday party. We had a one year seizure free party and had balloons that said 1 year seizure free and cake and invited over 60 people. Everyone who helped us on this long journey of hell. And as all of you know, it didn't stop when her seizures stopped but that was when we started to take a turn for the better. It's been a real slow road (and she has break throughs once in awhile) but at least we leveled off and have been taking steps in the right direction.

That was our beginning...that 1 1/2 years is what was the start to a whole new life that is changed forever. In fact, most people don't know this story because I walked around during that time with a fake smile on my face saying..."Everything is fine". And while most people know all the charity things that I do, they don't know how it all started from that deal and promise that I made. And I could have probably slowed down by now but I get so much from helping others. In fact, there was one organization whose director couldn't figure out my motives. Why would I organize a whole charity event and offer my marketing skills for FREE. I'm still he's still asking himself that question because it truly comes from my heart! I hope you got something out of Brittany's Beginning! It's a hard part of my life to share but I'm sure you will see that this experience not only changed me to be a better person but Brittany is an extremely special person. She has a way of touching people and bringing out the good in them and they go on to help others. So as you get to know us, I hope you will get to see what an amazing miracle Brittany is!

Brittany's Story-The Onset of Seizures Part 1

Brittany's Story--
It has been nearly 9 years since Brittany was born. It has been 8 1/2 years since she had gotten sick. Yet, the story does not get easier to tell. The truth is that no person should have to endure such suffering. It was certainly the hardest time in my life. My whole world crumbled, all my dreams and hopes had died. To this day, when someone calls me because their child is having the seizures Brittany had (infantile spasms), my heart aches for them. They have no idea of the path they are headed down. They have no idea how their life as they know it is going to turn upside down.

I rarely tell our story. In fact, even in my lectures that I give and the support and networking groups I work with, I never go into the deep, deep agony that I truly felt. The first time, I gave a speech, I could barely talk. Now, I am able to hold it together and tell it with a smile. It could be acceptance, it could be healing, it could be that I have supressed all those hard feelings. But I feel it is important to share her story, for people to see the re-building, the re-structuring, the re-born person that I have become and the wonderful person that my daughter has become. There is hope, it just takes time.

At six months old, Brittany was diagnosed with infantile spasms, the worst form of epilepsy. It honestly just started like she was looking up. Thankfully, her pediatrician recognized the signs and recommended a neurologist. (Rule 1- don't take no for an answer). The neurologists receptionist told us she had an appointment for two weeks. We should go on our trip to Hershey as planned. It didn't sound right to me (Rule 2-always go with your gut feeling) so I called another neurologist. This neurologist told us to come in immediately. Within four hours, Brittany was hospitalized and place on steroids (ACTH). My baby blew up within a day, she wasn't acting like my baby. She just kept crying and wanted to eat. Here we are in shock, MRIs, EEGs, Catheters and so much more tubes. Quickly I learned that the responsibility fell on me (Rule #3-the mother is responsible) --I had to record what she was doing before the seizure, how long they lasted, how many times her eyes rolled, how long each cluster lasted. I literally bought a stop watch and kept track of what I could. I was exhausted, I was scared, it was so unreal. My baby was a pin cushion and an observation (Rule 4-don't go into a hospital in July unless you really have to. The new shift of interns come in and you are the freak at the circus). These interns would just come running in and instead of helping would just stare with their mouths open. I can remember driving home from the hospital one night, with the GooGoo Dolls Iris on the radio--"And I don't want the world to see me, cause I don't think that they'd understand, how everything is meant to be broken, I just want you to know who I am". That night, it took all the energy in the world to not put my foot down on the gas and speed out of control until I crashed. I was numb, I just walked around and was in a fog. I was home alone that night. My husband was sleeping in the hospital. I went on the computer and I researched. Just to discover that no matter how horrible I thought this was....it was a million times worse. Basically, she was going to be mentally retarded, non functioning and the seizures would never stop. We were destined to live in hospitals with her the rest of our lives. I laid on my bed that night and the tears for the first time started falling and they wouldn't stop. I screamed and screamed and begged G-d to please stop this nightmare. Please bring my baby back to me. I can still feel that pain of that night and the tears still come to my eyes. Finally, I started screaming, let me know you are there. Help me. And, a picture on my dresser of my family fell over. Now, I never was a believer of spirits being around (and I am not sure if I believe it now) but in my heart I know that my Aunt (who was in that pix and died) and my grandparents were there with me at that minute.

One more weird thing, is that I had a dream while I was pregnant with Brittany that something was going to be wrong with her. And, I know no one would believe me but thankfully I had called my girlfriend crying that day and told her my dream and my weird day. Otherwise, no one would have believed me. I know that. I had this horrible dream that she was sick, my grandmother was with her and my Aunt (both who are passed). I jumped up very shaken by the dream but I went on with my day. I had a doctor appointment that day. As I was driving on the Expressway, there was a bus of kids with disabilities next to me. As I pulled off the exit, there was another bus with kids with disabilities. I was freaking. The topper was when I went to the Y that day, there was some kind of Downs Syndrome event and then at the supermarket, I had another encounter. I called my girlfriend, hysterical. I guess I knew that day and it was tucked away in my subconscious.

Back to the story--after two weeks, we finally left the hospital. While there, I started to learn the ropes quickly. (Rule #5-With a smile, let them know how it is going to be) A lion protecting her cubs. I learned how to make them schedule tests better, that there was no reason for a catheter and if they wanted blood--a person had one shot and they better be a pro at taking blood from an infant. The seizures now were uncontrollable. I slept leaning against her crib for nights on end. I had to learn how to give my baby a shot everyday and take her blood pressure 6 times a day. I was injecting this steroid poison into my daughter's body and watched as I turned her into a zombie. Each day, each shot, I lost her more and more. Until all she did was stare, rock and have seizures. This had to be hell! All she did was rock and cry. All I wanted her to do was smile at me and acknowledge that she knew me. she had to be somewhere inside there.

The next three months, were a blur. I was destroyed, I was lost, I went through the motions. In and out of hospitals (for a year). Never knowing when an emergency was going to surface. Friends and family were always on call for that late night--someone come get my son. Many nights we just threw everyone into the car and my parents would pick my son up at the Emergency Room. The pressure and decision was all on me--when were the seizures so bad that I had to take her to the hospital. The whole responsibility was on my shoulders.

I remember looking in the mirror one day and actually not recognizing the person who stared back. I was an empty shell. I would walk in the supermarket and just walk. Thinking, do these people know I have died. After the initial shock (three months about). I began to put the pieces slowly back together.

Before all this happened, I was a very strong woman. I was actually an Account Executive selling radio time, I owned my own publications, I felt I was invinsible. I always thought if you worked hard enough you could reach any goals. At least, that is truly what I had always believed. But it was now killing me because for the first time in my life, I couldn't fix something or strive for something. I remember the day that I looked out the window and I decided that I was going to fight. I am determined, stubborn, Type A personality who always strived for perfection. I was going to take on this fight. I was going to try and re-build me. I was going to make my daughter the best that she could be and I would keep going until I got her better.
Continued --Part 2- Brittany's Story-The Long Road