It was during an ultrasound that I heard the terrifying words, "I think that your baby's right eye didn't develop."
About a month later at my next appointment, his concerns were confirmed. Now it was my decision they said as to whether or not to continue with the pregnancy. The next couple of weeks were filled with tests and intensive ultrasounds where every bone was measured to track growth of my baby. The fear was that the pregnancy was going wrong and the baby wasn't developing. I had already made up my mind, no matter what I was keeping my baby. Other people in my life though didn't always feel the same way that I did. I had a man at my husbands work come up to me a few days later and say, "It is not fair for you to even consider keeping that baby. He is deformed and his whole life will be difficult. You need to abort and then you can try again." This unfortunately was not the only time that someone felt it necessary to share their "opinion" with me.
I did research on the internet about what difficulties my child would have to deal with, only having one eye. I was determined to help him live a normal life and not be limited. I looked forward to the day when those people who didn't think that my son deserved to be here, would eat their words.
When he was born he looked perfect. He always looked like he just had one eye closed. His left eye was a gorgeous shade of blue. He was a happy baby and seemed curious and smart. But something began nagging at me. "I don't think that he is looking at me" I would say to my husband and friends. "Oh you are being ridiculous" they would tell me. At about 3 months, we went in for a doctor's appointment at the Jules Stein Eye Institute. It was time to check on the micro right eye and see if it would require any attention. The news at the end of the long appointment hit us like a mac truck. Our son was totally blind and had been since birth. His optic nerves had never developed. He had never seen anything and never would. The diagnosis: Bilateral Microphthalmia. The rest of that time was like moving through vaseline, hazy and thick.
We wanted answers, what had happened? I blamed myself and my husband did the same. We saw a genetisist who ran test and told us she had no answers for us. Another genetisist at Childrens Hospital L.A. said the words that changed my life, "Stop looking for reasons and answers. Stop blaming yourself, it won't do you or your son any good. Accept what is and move on. Treat him normal and he will be normal. Raise him with the same love and expectations that you have for your daughter." I was free.
Now it was time to get down to work, parenting. I was given the number for a mom who had a child who was blind, so I gave her a call for some advice and encouragement. What I got though was a smack of my reality to come. As she methodically listed off the doctor appointment, IEP's, therapies, O&M, braille lessons, and challenges, I sat in my chair with my head screaming, "I can't do this!" I hung up the phone hating that mother. How dare she say those things to me. Today I realize that although her delivery left a lot to be desired, she was preparing me for my future and all it would indeed entail.
At only 6 months old, Josh had his very first surgery on his right eye socket, followed by another at about 12 months old. At 18 months old, Josh became very agitated and cranky and suddenly began to bang his head against walls and the floor. I called a friend who insisted that I take him to Children's Hospital right away. A few days later at Children's Hospital I met with their Ocular Oncologist who informed me that Josh had severe glaucoma in his left eye. The eye would have to be surgically removed right away. I was shattered. That eye to me had been the only tiny window I had into my son's soul. I could read his emotions and thoughts by looking into that eye. If they took that away, I would have nothing, no way to read him anymore. In some ways it was even more devastating to me than anything else had been up to this point. My husband and I were inconsolable, the pain running so deep that we couldn't even be together while waiting during his surgery. But it was during Josh's stay at Children's Hospital that we had our major epiphany and the healing would begin. While eating breakfast the next morning inside the McDonald's located inside Children's Hospital, we witnessed so many children with so many different diseases and ailments and disabilities. There joy and laughter were overwhelming. As we looked around at the parents of these children we realized that many of these children may not ever make it out of the hospital or lead very long lives. We looked at each other and realized how lucky we truly were. I thought to myself, "this is nothing, I can do this." Suddenly I thought what if we stop saying "why me?" or "why him?" What if this is actually a gift and our job is to get that.
Josh's recovery was slow and the toll on him emotionally would set back much of the progress we had made with his occupational therapist. He stopped eating, stopped talking and his joyous easygoing personality seemed to have been marred. It was a long slow recovery time for all of us. The next step after he recovered physically was to continue the process of getting his prosthetic eyes. Up to this point Josh had a spacer in his right eye, which was a clear plastic piece with a tiny handle sticking out. This made for some tough times. Once at a neighbors party, a child walked up to Josh, looked at him and yelled out, "AWWW! MONSTER!" The kid ran to his mom who was standing about 20 feet from me. As the child cried to his mom and pointed, I tried to get her attention and smile and wave her over to me. I thought that perhaps I could turn this negative event into a learning moment for this woman and her child. The woman looked at me and Josh, turned to her son and said "stay away from him." I couldn't believe it.
There are not many books out there for parents of blind children. Information and answers are like searching for diamonds, very limited, time consuming and difficult. The first step was getting Josh services through our school district. This was basically a once a week mommy and me class for parents of special needs children. I found the whole experience terrifying. All around me were parents of children with mental and/or physical disabilities, none of them blind though. All I witnessed were shell shocked parents like myself, trying desperately to find answers and get help but coming away ultimately feeling more alone than ever.
I began working with a specialist from an organization that works with the blind and visually impaired. Although she was able to answer some questions and point me in the direction of more resources, her main message to me seemed to be that no matter what I did, I would never get the proper resources Josh would require from our school district. She encouraged me to hire someone to help me with our IFSP (Individualized Family Service Plan) and hire an attorney after that if needed. None of this did anything to help my feeling of being stressed or overwhelmed. I was feeling pressure to get myself prepared for a war against an invisible enemy that I hadn't even met yet. It didn't take too long for me to realize that the only way to win was to get these people to know and care about Josh. If they met him, they would fall in love with him, and be compelled to help. And it worked! So during every meeting from that day forward, I have brought Josh into our meetings either at the beginning or at the end. He says hello to everyone, gives hugs, and offers any input or asks any questions he wants to. It helps to remind everyone that this is a person not a case file.
Fast forward a few years. Josh is 6, in kindergarten and attending our neighborhood elementary school in a regular classroom. The kids love him and he makes friends easily. He has been taking braille lessons after school for the last 2 years and is already a proficient reader. The teacher loves him and he has a wonderful aide. It is during this time that I go grocery shopping with Josh one day. Josh is begging me to get him some AAA batteries but when I go to get them, I see that they are out. I tell him and he says, "Well show me." I put his had on the empty space where the battery packages would normally be hanging. Josh says, "No, where is the braille mommy." I reply, "Josh there is no braille in the grocery store." "Why not?! How am I supposed to shop then? Mommy, make them put braille up so I can shop too." I laugh. I am perplexed. Of everything I have tried to plan for, I never thought about my son grocery shopping. As always, I jump on the internet for answers but what I see disturbs me greatly. I tell Josh that when he is older and goes shopping he will have to ask someone who works there to take him around and help him pick out his items. He doesn't like this answer one bit and frankly either do I. The next time I am in our local grocery store I talk to the manager ask him if he would be willing to let me put up a few clear braille labels on the shelves for Josh's favorite items, i.e. popcorn, waffles and cookies, so that he can have the experience of shopping when he comes to the store with me. He likes the idea and says that he will call me later that day. But the phone call is disappointing when they tell us no. My husband is furious and goes to the grocery store (same store different location) across the street from his work. The manager at this location is thrilled to help us out and agrees to let us put up as many labels as we want to. My husband tells his friend who is a local newscaster and she gets the approval to film it as a segment for the evening news. A week later we film a segment about it and it airs. The response is amazing. I decide to write a letter to another local grocery store and ask them if we could do the same thing in their store. But then my husband goes into the first store and they rudely inform him that all of the braille labels have been taken down and will not be allowed back up per the corporate office. We are devastated and Josh cries and keeps asking "why?. A few days later the store I had written to calls me back and is not only willing to let us put up a few labels, they want to braille the entire store! She calls it The Joshua Project. The newscaster comes back out and does another story to follow up and it is during this day that one of my husbands friends who is there says to us, "you need to turn this into a non profit and I will give you the money to get it started. My lawyer will call you to get you started."
Four years later, The Joshua Project Foundation is a 501(c)3 with 7 amazing board members. We have put braille into 7 stores in locations including Canada, Boston, Westlake Village, Tarzana and Santa Barbara. We have just had our 2nd annual Fundraiser at the famous Palm Restaurant in Los Angeles, where 75 people ate a 4 course 5 star meal, in the dark, while blindfolded. Our work has gone beyond braille labels. We have developed braille aisle markers, braille maps and even a talking braille scanner. Josh's dream is "to braille the world and Target too!"
Josh is the greatest gift. He teaches everyone valuable life lessons. When people see him or hear about him and so "awww", I laugh and say, don't spend one second feeling sorry for him, he is a superhero. He has super powers we all can only wish we had. You spend one day with him and you will know, that you are the one who is "disabled".
