A brush out of my comfort zone

I recently participated in a Paint Nite event at a local bar. You have probably heard of this but if not, it's a program where local artists conduct a 2 hour art class teaching a group of people how to create a certain painting. They are usually held at bars and  people can enjoy some wine or other beverage while painting. I do not drink so unfortunately I couldn't blame my lack of talent on drunkenness! :)
By the way, they tend to have Groupons for these events if you are interested! 

I had been nervous prior to the event, wondering how in the world I would be able to see what the artist was doing. Before that night, I don't think I had painted since childhood (unless pottery painting counts.) In my family, my mom and my sister are the ones with the artistic talent. In fact, my sister is probably the most talented artist I know. My parent's house is full of her beautiful and unique artwork. My friend, Shanna, who went with me is also very artistic so I was a bit intimidated going in. 

But luckily, when I got there, my  nerves settled a bit. The room was set up in a way that there were seats very close to the artist, so I snagged the closest one. I then told the artist and the event assistant that I am visually impaired. They were very cool about it and suggested I snap a photo of the finished painting. This was a terrific idea. And the artist actually suggested it to everyone.
  
The artist teaching the class was awesome! He was encouraging and non-judgemental.  He made me feel more at ease than I thought I could be. He explained each step clearly and was open to questions. The painting we did was called "Blue Twilight" and according to him was very easy and "forgiving" (meaning you could basically do no wrong with it.)  He was not the original artist of the painting. The finished product depicted a foggy forest at twilight. I feel like mine portrays a "Spooky Old Tree" (Berenstein Bears reference) but I am pleased with the outcome. It will not win any awards but I am actually okay with people seeing it!  

I am glad I gave this a shot!   I now feel a bit more comfortable with a paintbrush in my hand. I am actually looking forward to trying again!  

My kids teach me to "see" what matters

It's been a while since I have posted on here! Not even sure where to begin. So I will start with what is on my mind.

Right now I am in Rockport (a small beach town in Massachusetts)and the kids are taking a walk with their Nana. I have a few minutes so I figured I would get a bit of writing in.
It's crazy to think back to three years ago when my parents insisted I come up to Rockport every week because they were worried about my mental health. And to be honest.. So was I! Ayla was only 1 month old and was a pretty cranky baby. Alexis was 2 1/2 and very happy and active. I was suffering from postpartum depression and basically just going through the motions of life. I felt hopeless and  could not even imagine feeling like myself again. Thank God that after a few months and lots of help, those feelings subsided.

Now it has become tradition to come up to Rockport for a few days a week during the month that my parents are here. In fact, for a while Alexis would list the seasons as: Winter, Spring, Rockport and Fall!  Now Ayla is three and VERY happy. Luckily her mom's depression at the beginning of her life did not have a lasting effect on her ability to enjoy life.
I still do get overwhelmed with life but it is very different than those dark days. I find myself stressing about money, the house, the future, etc. Bu when I just sit back and watch my kids, I am usually able to push through the anxiety and not allow it to take over.

A few nights ago I had a moment that made me realize I needed to let the stress go and enjoy life as it happens. I was putting the kids to bed and Alexis noticed that I was wearing my new "Life is Good" shirt. She said "It should really say 'Life is Great!'" 'I realized that she was right and I am so happy she feels that way. It makes me feel like I am doing something right if my children are this happy.  And it shows me that feeling happy and loved is what matters. Somehow things will work out.. Bills will eventually get paid.  The house will probably stay messy.  But we will be OK.
Everywhere we go people comment on how happy Ayla is. It's probably because she never stops singing no matter where we are or who we are with. I am curious to see how she adjusts to preschool when she can't just belt out songs at the top of her lungs whenever the urge hits!

It's wonderful that my parents share their vacation with us.  The kids absolutely love coming here - playing on the beach, taking walks, getting ice cream and cupcakes, watching movies and more.  I love spending time away from my house for a while!  (Of course we miss Chip!)  It's hard being stuck at home for days on end. This way, we enjoy a few days playing in our yard and a few days here... Breaks up the routine.  And being with my mom and dad is always a treat!

I am going to try to get back in the swing of writing more regularly. There is no excuse for not being able to set aside some time for something I enjoy.
I hope everyone is having a wonderful  summer!

You are not alone

This post is directed to people who have recently been diagnosed with a visual disorder or have a loved one who has. I know it is a shocking diagnosis and you will certainly need some time to process it. You have every right to be angry, sad, scared, even pissed off. Believe me, these are normal reactions. What I want to convey here is that you are not in this alone. You might feel like you are. You probably do not know anyone else with the same diagnosis. But we are out there. One reason I love social media (and there are reasons I do not like it as well) is the way it can connect people who are in a similar situation. 

"You never know how strong you are until being strong is the only choice you have." You will learn through this process that you are stronger than you ever thought. There will be times when you feel helpless, lost, unsure of the future. But you need to remember there is so much more to you than this. You will get lots of reactions from friends, co-workers, even strangers that often are the opposite of helpful. I have heard on many occasion "I could not live without my car." This statement always makes me cringe. I feel like saying "Actually you could. It would just take a lot of changes in your life."

You will have certain friends and family members who will try to understand and offer as much support as they can. Embrace their help and be honest with them about how you are feeling.  I know how hard it is to lose so much of your independence. Asking for help is not easy and can make us feel inadequate. But think about how much you would want to help others if the roles were reversed. There should be no shame in needing assistance.

I also hope that you will seek out others in your area who are blind or visually impaired. Being able to confide in someone who has gone through the same thing is priceless. It might take some time before you feel comfortable doing this but please try . Check out your local chapter of the Foundation Fighting Blindness. You will probably at times want to stay in bed and cry. That's OK too...  but I hope you will not let this feeling of helplessness overcome you. You have your life to live. And this life can still be full of happiness, love and beauty.  

I think it is important to stay active. As a teenager, I ran track every winter and spring season of high school. I also played soccer and ran cross-country track. I did not realize it then but this gave me an outlet for my emotions. The anxiety, stress, anger I felt got channeled to my running and it propelled me to do very well. I could not play other sports I would have liked to play (such as lacrosse) so I made the most of what I COULD do.

That is key... Focus on what you CAN do. You will find creative ways to accomplish your goals.

As a friend once said to me... You do not need good vision to be able to see the beautiful things in life.  What makes this statement even more meaningful is that it comes from someone who was diagnosed with Stargardt's last year. She has amazed me with the strength she has shown while going through this! 

Foundation Fighting Blindness

Laugh With Me

Things have been a bit stressful lately so I have the urge to switch gears and focus on humor for a bit.

Last month, my husband and I went to a comedy club in Boston to see the hilarious Josh Blue. We knew of him from when he won Last Comic Standing a few years ago, and we have talked about catching his show if he comes to town. So for Chip's birthday, I bought tickets to his show at Laugh Boston.  If you are unfamiliar with Josh Blue, I encourage you to check him out. He has Cerebral Palsy and finds humor in himself and life situations. He has a stage style all his own.   The show was great despite the drunk members of the audience who seemed to want their 15 minutes of fame. They were a major distraction and undoubtedly affected the overall tone of the show. But I imagine this is par for the course for stand up comics. We had some good laughs which is always good for the soul! We even got to meet Josh after the show! 

Recently we started watching the new sitcom Growing Up Fisher. It is a semi-autobiographical series about an 11- year old kid and his father who is totally blind. I remember a few months ago when I saw ads for the show, I was quite skeptical. A show about a blind guy that is supposed to be a comedy? Doesn't seem very politically correct and  might be a bit offensive.

Well, turns out I love the show. In fact, it is one of my favorites. 

This week's episode had a touching moment that sticks with me. The boy, Henry, was nearing his twelfth birthday and was very worried that he was going to go blind just like his dad had. He does not mention this fear to his father.  Instead he gets himself into trouble by sneaking into the girl's locker room so he could see naked "boobs" for the first and maybe last time. Only problem was that he and his buddy got caught hiding in a locker and it turned out to be the boy's locker room. Anyway, he finally confides in his dad,and when asked why he has never mentioned his fear to him, he says because he didn't want his dad to think he didn't want to be like him. The response of the dad, Mel Fisher was to say how sweet and insane that was. That of course Henry wouldn't want to be blind. "I don't want to be blind!" he said. And this was surprising to the boy because he had never heard his father complain about his vision. He went about his life and never let his vision drag him down. But no.. He did not WANT to be blind. 

This hit home for me because I do not want my kids to think that I let my vision hinder my life. I want them to know I am string and they are too. If there are things I can't do, we will be creative and come up with a plan. I will probably not cut down trees with a chainsaw like Mel Fisher but I will do what I can!

Again, if you have not seen this show, go on demand and watch it! Do not rule it out because they are laughing at a blind guy. The show has a way of making you laugh but not in a derogatory way towards anyone. You will see what I mean. 

The father is played by J.K Simmons who I knew as Juno's dad and the psychiatrist from Law and Order. He is wonderful in this role. And the boy, Eli Baker, is great as well. The mom, who has recently separated from the dad and is attempting to reclaim her youth is played by Jenna Elfman. She is very convincing as an annoying mom!

They say "Laughter is the best medicine" and I am in full agreement. There was a time nearly three years ago (right after the birth of my youngest daughter) that I did not think I would laugh again. I am happy to say that I got through that very difficult time and am now making sure my life is full of laughter. It is pretty hard for it not to be when you come from the Gangi family, are married to a Garbitt and have two little ones!

I would like to end with a story that relates to my vision and is very funny. So do not feel bad if you chuckle a little.  A few years ago, my good friend Kate was visiting, and while she was here I got a package delivered. I was very excited to see the new curtains I had ordered online for my kitchen. They had looked so cute -black valances with a trim of white with black flowers. 

I opened the package and we looked at them. "Cheetah, Heather?" Kate asked. We both laughed and I did not really need to explain that I did not in fact want cheetah print curtains in kitchen!

Those got stashed away in a closet for months until I asked my mom to help me change them into something I could use. Coffee cups replaced the cheetah print, and they look adorable in my kitchen!  Thanks Kate for sharing that moment with me! And thanks Ma for your constant willingness to help!

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My kid needs glasses... So what?

A recent experience has had me wanting to write a blog post but not quite knowing how.    It is something I apparently needed a long time to process.

On Valentine's Day, we brought our 5 year old to the eye doctor.  We learned that she has an astigmatism that causes her right eye to be weaker than the left and cannot be corrected to 20/20.   She needs to wear glasses.    Big deal, right?

As we were leaving the appointment, the ophthalmologist assured me for the second time "Her retinas look beautiful."

So, obviously this is not a major issue and I am VERY relieved that her retinas are fine.

So, why have I been sad?

The whole experience of our visit to the eye doctor is almost indescribable. It brought back memories of my childhood eye doctor visits.  Sitting in that chair not being able to see much more than the Big E.  Guessing what letters were there and feeling like I should be able to do better.  Obviously knowing I had no control over it but still feeling inadequate.

How awful and heart wrenching it must have been for my parents!

At my daughter's appointment, I sat there not being able to see what she was supposed to be seeing.  So the only way I knew if she was seeing the letters correctly by the doctor's reaction.  When she struggled to see, I so badly wished I could help her... The emotional reaction I had no doubt pales in comparison to what my parents felt years ago. 

I have never had much sympathy for people whose vision is correctable by glasses. While some might complain about wearing them, I wish it were that easy for me.  So, finding out that my child needs glasses should not be a big deal. And it's not.  So why does it make me sad?

Is it that my kid is not perfect? Is it that I want to protect her from the teasing she will inevitably experience at some point?  Maybe its because, I know she does not like being singled out.  Or maybe I have had enough experience with low vision for all of my kids and was hoping they would not have to deal with it.
 I don't know.

But, my  sadness is definitely overpowered by my relief that there are no signs of Stargardts.


The day after her appointment, she was having a hard time falling asleep and when I checked on her, she asked me why she needed glasses and started to cry. It broke my heart. I guess it's just hard to see your child go through any type of struggle, however small. 


When we went to pick out her frames, she instantly selected a purple pair with gems on them. They just so happen to be the pair my husband knew she would go for.  He works at the practice where the optical shop is located so he had scoped them out days before.
She was actually kissing the frames that day!
We picked the glasses up this past Friday.

I must say she looks absolutely ridiculously cute in them!   She wore them to a birthday party for one of her friends on Saturday. I was so proud of her for choosing to wear them.  We had said she could leave them off while at the party (an indoor playground with lots of inflatable slides, structures, opportunities to tumble and fall.)  But she wanted to show her friends.  She got positive reactions, especially from the other parents! I think this will make wearing them to school on Monday an easier transition for her.

To summarize the complexity of my state of mind lately:
I feel sad that she has to wear glasses.
I feel extremely happy that her retinas look good.
I feel guilty for feeling sad
I feel empathy for those parents out there whose kids have vision like mine
I feel grateful for my amazing parents.
I feel proud of my little girl.
I feel lucky.

Daily Life

Some of my friends have told me that they forget about my eye problem. I think sometimes I do too...

Well, not exactly forget.. But go about my daily life the way I do, using tools to help me see. It is just habit to have my ipad or iphone handy to magnify text on labels, bills, etc.  I know I miss lots of details on TV and in my surroundings but it is what I know.  I have accepted it and understand my limitations. 

A few days ago, I had  a Peapod grocery delivery scheduled from 7 - 9 am.  At 7:15, I noticed the delivery driver coming down the driveway. I went out to the mudroom to open the door for him and he said "I'm right here." My assumption is that it looked to him like I was looking around for him or not looking directly at him.

It got me thinking of how people with visual disabilities(or any other impairment) get used to doing things a certain way, establishing our routines, living our lives. Our family and friends know us and are used to seeing these routines, or they instinctively help us with certain things. For instance, my friends will read aloud the flavors at the frozen yogurt shop or my mom will help me complete forms for my daughter's school.

When we come across people we don't know, the dynamic of the interaction is quite different. We might get strange looks from the post office counter attendant when we whip out a magnifier to check an address. Or when we mess up the debit card transaction at a store because we are unfamiliar with that particular keypad . (Personally I wish they were all the same!)

I do like meeting people and making new friends but there is often a fear of what they might be thinking of me. Although I am legally blind, I can sense when someone is looking at me and I start to wonder things like "Does it look like I am not looking at them?" "Am I taking too long to fill out this form?"

I don't blame people for the double take or their curiousity. Its not everyday that you see a 30- ish looking person with such bad vision. And as I have mentioned in the pasr, not using a cane or guide dog makes it even more surprising.


Simple things we do can cause anxiety. I remember when I worked in Boston and took a bus every day, I would feel so much more relaxed if the bus stop was only for that bus. If several buses stopped there, I had to figure out which one was the one I needed. Often I would ask the driver as I got on and I was definitely  met with some annoyance. Some would tell me to look at the sign. Again, as this would be my first interaction with another person that day, it would often sour my mood. At work, I had my computer screen zoomed to a pretty huge font and would often get comments from people about that if they came to see me in my cubicle. Going through the day like this can get exhausting!

Nowadays, the setting and circumstances are different, but they are still there and still cause some anxiety.   Grabbing donuts, crossing the street, shopping for clothes... These are seemingly simple actions. But not necessarily for people like me.

OK enough about things that cause anxiety.  Life's important things outweigh any of this. I can't let a small insignificant encounter affect my mood. I do fluff things off much easier than I did before having kids. They need me to be strong and confident in my abilities as a mom, and that I will always strive to be!