Hector the Protector

Hector the Protector: It's been two years since my last post and we have a new addition to our family. We like to refer to him as "Hector the Protector." He stands approximately four feet tall and is quite slender. He sports a clean white look with a spot of red and black here and there. He is willing to take as many bumps and bruises as needed to keep me safe. I've become extremely reliant on my new friend and almost feel a void when he's left behind. You ask, "who is this handsome knight in shiny armor?" Hector is my new white cane, which is a tool used by blind people to give them independence. I was so reluctant to get one and the truth is it has changed my life. Instead of playing human bumper cars when I walk down the streets of San Francisco, it is like experiencing the parting of the red sea again and again. The reality is I can no longer be anonymous or hide my secret, which was a great avoidance tactic. Instead, the white cane is a dead give away. It is a small price to pay for what feels like a new found freedom. It gives me confidence to go places that I may have dreaded or avoided in the past. I now strut with confidence and embrace my cane. He truly is a great protector, but will never replace the number one protector in my life, my husband! I love you to pieces.

The Royal Stink Eye

Everyone has received the infamous “stink eye” at some point in their life. However, “stink eyes” from an over protected, first time mom take on a whole new meaning. I am on the receiving end of these quite often and I have perfected the art of dodging the stink eye beam before it strikes.

The hits most often take place at mommy and me classes and parks. I bet you are asking yourself what spurs a “strike.” Before I answer, a little bit about my parenting skills are needed for some background.

For those that don’t know, I am a mom of two high-energy boys who are five and two years old. They are both extremely independent and social and don’t need a lot of hand-holding. I give them a lot of rope to hang themselves and end up doing a lot of seagull management once they have committed the crime. These child infractions include grabbing a toy out of another child’s hand, pushing another child for no apparent reason, throwing sand for the fun of it in another child’s face, putting sand down a child’s shirt and in the hood of their sweatshirt, or teaching other children how to jump off a four foot platform, jumping naked in a mud puddle at the park, etc. As you can imagine, the list goes on and on, because kids will be kids and there should not be any other way to exist in this world. There is nothing more special than a child’s innocence and ability to experience the world. Every parent would be a liar if they said their child hasn’t committed at least one of the listed infractions. So why even bother blabbing on about these instances…here’s why!
Most moms have the keen sense and ability to prevent these instances before they become a reality. Not so much in my world. Since I am completely blind, I miss them almost 99.9 percent of the time. Hence the STINK EYE! I come flying in once I hear the crying and try to play catch up to even understand what has happened. To the other mom’s defense, she has no idea that I am blind and always late to the game on these things. The bottom line is that I have great kids and if I have to take a few stink eyes in their defense bring ‘em on.

Just yesterday, I received a whopping stink eye and it wasn’t even from the child’s parent. My two-year-old son Ari took something out of my bag and starting running away from me in a crowded park of families. He thought he was so…cute and funny! I started sprinting after him only to trip over a little girl who could not be more than two-years-old herself. I was mortified and felt horrible. At the moment of contact, I heard a complete stranger gasp from behind. I knew exactly what he was thinking, “what is this woman’s problem.” I walked the bawling girl to her parents, said I was sorry and explained that I tripped over her. The parents were extremely understanding and said don’t worry about it. We did not see what happened; she is just tired. The reality is that it was totally my fault. The little girl was in my blind spot and I literally took her out. It took every ounce of energy in my body to not completely lose me shit. These are moments I need to stop, take a breath and remember my limitations. I hate these moments. They remind me of a slap in the face when I don’t need it. I live with my disability every day. I stare it straight in the face and accept our destiny together. But…it’s these moments that make me vulnerable and allow a sadness to seep into my pores that it difficult to shake off.

A Trip To The Holy Land

Ron and I have a short list of all the places we want to visit in the world, especially before the world of darkness parks itself in my eyes. I am so excited to announce that we are going to Israel this summer. We are just finalizing our itinerary, so let us know if you have any recommendations. I will definitely check back in after the trip to let you know how I faired exploring the holy land through my eyes.

The One Hour Flight

I’ve lost count of the number of flights I’ve taken from San Francisco to Southern California, whether for business, pleasure or a simple trip to the in-laws. They are simple in nature, straight forward, no fuss – that is until SFO shuts down a runway, as soon as the wheels lift for take off they seem to be dropping for landing, you don’t cringe if you get the middle seat since it’s only an hour flight, etc. However, all these images change when I take this same flight with two kids under five “sans” Ron. To make matters worse, I decide it is time to save money and skimp on buying my 21 month old a seat. I agree…not my brightest moment.

The truth is I am panicking inside and close to petrified of how I am going to make it home with not only myself intact, but my kids too. This feeling set in three days before the big event, which gave me the courage to stop, recognize the need to ask for help not only for myself, but my children. It sounds so simple when I type the words in black in white, but it is nothing but simple. It is an emotional game of ice hockey in my brain (do I; don’t I…).

This was a huge step for me. It was the first time I asked a complete stranger for help. It wasn’t even a stranger really; it was a huge corporation that has processes in place for people like me. There is a form with a box that reads – sight impaired / blind. It was at this moment that the tears started flowing. I was so grateful for Grandpa’s kind gesture as he handed me his hankerchief and soft touch to my shoulder telling me everything is going to be okay without saying a word. I was grateful that Noah did not see his mommy crying. I was grateful to the kind soul behind the JetBlue counter who was doing everything in his power to make this flight as easy and seamless as possible.

The good news is that we all survived the one-hour flight home. I graciously accepted JetBlue’s assistance, which constituted of the following:

• Allowing my father-in-law to accompany the kids and me to the gate

• Upon arrival, supervisor escort from the plane to baggage

• Supervisor helped secure baggage and escorted us curbside to meet our car

• The supervisor was a second set of eyes to help with the children and just navigate a high traffic international airport

I’ve done it. I can check it off my list. The truth of the matter is I don’t know who was more scared about flying alone with the two kids, Ron or me. You could have a field day arguing each one, but at the end of the day I survived. This is the message that I need to keep telling myself. There will be a million new experiences just like this one as my eyes continue to deteriorate, but I will survive. Remember, it is just a simple one-hour flight, not the end of the world.

The White Cane

The other day I was walking in Union Square when a woman bumped into me and said, “I am sorry; excuse me.” The irony to the situation is that it is usually me apologizing for bumping into someone. It was almost refreshing, but there was something different about this encounter. Normally, I would brush it off and keep walking. Today, I glanced back to see a woman in her later fifties/early sixties walking with a white cane.

This time it was me who said, “excuse me; can I ask you something?” I got up the courage to ask her how she went about securing the white cane and the training process. She was very opened and willing to share. This was a complete stranger in the middle of San Francisco with advice from one blind woman to another. We said goodbye and wished one another luck. As weird as it may sound, it was a very touching moment for me.

It’s the Same Just a Bit More Complicated

Getting from point A to B is a simple process. You can fly in an airplane, drive a car, walk, ride a bike, skateboard or scooter, take public transportation, etc. What makes this simple? You do a little research, figure out the best solution to land at your end destination, and lastly make it happen. However, when kids enter the equation, it complicates everything and this has nothing to do with being blind.

My morning: Ari decided to give us the beautiful gift of sleeping in this morning until 7:20 a.m. I thought my eyes were playing trips on me when I looked at the clock. I fell into my morning routine and realized Noah was still slumbering away and it was 8 a.m. My fabulous gift was now a thing of the past because I needed to give all my brainpower to strategically figure out how to get everyone from point A to B. The clock was ticking and time was running out.

First, I decided to be realistic and recognize there was no way in hell that Noah was making it to school on time unless I could throw him in a car. This was not an option for three reasons. It was a typical foggy San Francisco day; Ron takes the car to work; and I’m not really driving these days.

While the strategic plan was evolving in my head, it looked really messy. I continued to plow through the morning routine:

* Got everyone dressed
* Made breakfast
* Made sure everyone actually ate
* Put Noah on the potty for his morning business
* Made lunches
* Packed Ari’s bag for the nanny share
* Packed my computer bag for my afternoon meeting
* Remembered last minute it was “Sharing Day” in Noah’s class and he needed to bring something he got on vacation to share. Good thing I jogged the memory for this or else I’d be put on the “worst mommy” of the day list.

Finally, I stop and looked at my watch. Oops…it’s 9:10 a.m. and Noah starts school at 9 a.m. Walking is no longer a valid option, which screws up everything. How was I going to get everything that needed to be transported (Noah, Ari, double stroller for nanny share, Noah’s lunch box, Ari’s bag, my bag, and a box of work files) from A to B? My solution was take two trips. It was by no means efficient, but decided to take the path of least resistance.

Next, I throw a little money at the situation. I call a cab and not soon after a cab/SUV pulls up. I realize this could be the complete answer to my dilemma this morning instead of one piece of the solution. However, it required me jumping off my current course and going back inside to retrieve everything listed above to throw in the taxi. I was exhausted thinking about loading everything into the taxi and navigating two kids. I stayed on course and piled us all in the taxi.

Sigh…we are on our way to school, but now what. I call school, explained the situation, and asked if they would meet me at the side door to take Noah to class while the cab waited for me. I am sure this was an unorthodox request for them, but they were more than happy to help.

When Ari and I returned home, to our surprise, we found that Ron had not left for work. This worked in my favor, because he could drop Ari and I off at the nanny share on his way to work. It saved me a 20 minute walk with a bogged down stroller!

Ari is delivered to his final destination and I head to my meeting. I am 45 minutes early, which never happens. I am feeling quite proud having navigating quite a morning. I’m enjoying the quite morning hum in the coffee shop and writing this blog entry when my phone rings. It is the preschool to inform me that Noah has 102 fever. Wow…I moved mountains (or what felt like mountains) to get Noah to school this morning only to pick him up an hour and half later. If I had a received the morning memo that he was going to be sick, I would have left him in bed!

It is now almost two weeks later that I am finishing this post, because Noah ended up having a fever for six days. It resulted in three trips to the doctor and numerous tests with no “real” diagnosis. It was a virus!

Guess what! Ari woke up this morning with a fever. The fun starts all over again tomorrow morning as I navigate getting from point A to B with one sick kid, one healthy kid that needs to get to school, no car, etc. I’ll make a plan and obliterate about 10 times before choosing one that works for that moment in time. If the moment escapes us, we will probably need a new plan. I don’t know about you, but I am exhausted just thinking about tomorrow morning. Good night!

A Trip To The Eye Doctor

You would think after 20 years of visiting eye specialists that I could get through an appointment without crying. Just sitting in the chair triggers a familiar anxiety in my gut. It starts with a simple eye test just like the one you take at your annual eye appointment. Immediately, my imagination takes over and goes to a very dark place. I self diagnose myself and hear the doctor telling me, “the RP is progressing and it’s time to really discuss what this means for your future.”

The truth is I am nervous as hell. I keep chanting over an over the same mantra in my head, “you are tough; you can do this!” These are the same words I share with my boys every time they fall or tell me they can’t do something. It’s not always easy to practice what you preach.

After an hour of tests, I finally sit with my doctor to discuss the results. My appointment was a follow-up to check on some swelling they found in my eye, which is one of the side effects of RP. As the retinas die, they sometimes cause inflammation, which in turn impacts the quality of your vision. My doctor wanted to put me on a medication to shrink the swelling, but I am allergic to sulfa and it is a sulfa-based drug. We decided to wait it out and see if the swelling subsided on its own.

Instead of hearing the cynical words being spewed in my head my doctor says, “looking good. Your vision is holding and most of the swelling is gone.” Who knows, maybe it’s Murphy’s Law – think the worst to receive the opposite outcome. In this case, I’ll take it. Today, the tears were for nothing.