Seeing Clearly

Sometimes I can just stand there and look at my baby boy while he sleeps and suddenly be filled with so much love and compassion that it just makes me cry. I have never known love like this. Joey knows it’s sleep time because we play his lullaby music with his beach sounds. We used to turn on his light mobile but we don’t do that as much. He also knows because I can swaddle him like no one else thanks to being taught by some brilliant nurses at Texas Children’s Hospital.

He sounds like Darth Vader sometimes when he breathes and he snores at night. We saw a pulmonary specialist last week and were told that his lungs are fine but we were referred to an ENT for this coming week sometime. They want to stick a camera up his nose. He will of course hate this. Last week we were also visited by the Visual Specialists from the school district we live in. I had been previously speaking with one about whether Joey should get glasses this young. When she arrived, she had some unsettling news for me.

You see, I don’t know where the misunderstanding took place but as it is, Joey will be visually impaired, blind. We were not expecting this although it all makes sense. There have been some instances where I felt like he couldn’t see what was going on. For example, a few times on his changing table when I would reach away to toss his diaper, I would see his arms go up an out and terror would spread on his face until I grabbed his little hands, got right in his face and said, “Mommy’s here” over and over. This would happen quickly so I convinced myself he was just near sighted.

I have noticed that he doesn’t squint in the morning when I pull the curtain back to let the sun in. And I do this when I change him in the morning as the table is right next to the window. But I decided that it was because he was awake. But there were also times that I felt like he was looking at certain toys. It always seemed like he was partial to this little yellow duckie.

But when the Vision Specialists were here, they read aloud the eye report (something I had not received) and his professional opinion was that Joey was blind. I just kept tearing up and the women were so kind, a little shocked that I didn’t know. It all made sense though.

I asked so many questions. Fortunately, I live in a district where they step in immediately to provide therapies and get him started right off on things he needs. For example, he no longer works very hard to lift his head up when he’s on his tummy. He has no incentive. He used to do it to see Mommy but he doesn’t need that anymore so he hasn’t been trying. This really started after his last eye surgery. I suppose that the eye they operated on was his “good”eye and in an attempt to save it, they had to risk blindness sooner. It was already detaching though so it was inevitable.

Now we have to find incentives that motivate him to lift his head or he won’t crawl or walk. He will be very behind developmentally regardless but we want to help him as much as possible to overcome this. He also drops his head down and he will need to learn to hold his head level so we work on this often.

I had so many questions for the specialist like…should he go to a blind school? What will they teach him now? Will they teach him Braille? Will they teach him to use a cane? Will he be able to ever live on his own? Will he have friends who aren’t blind? Will he be in regular classes or always special classes? What kind of future will he have? Are there camps out there for blind kids? How will I deal with as a parent? How do other parents deal? Should we live in a one-story (if we can ever sell our house)? How will he get around? I should talk to him all the time, right?

The last few days have been filled with so many questions, thoughts, worries. Will he have a girlfriend? A wife? What kind of job will he have as an adult? What if he falls? What if he drops something important? What if he gets lost? So many worries…

I just love him so much.

The vision specialists were wonderful and so kind. They were so sweet to Joey and loved on him and when they left, one said, “Ok Joey, this is Miss Donna kissing your back. I’ll see you next week”. And the other lady clanged her bracelets and then rubbed them on his little arm and said, “This is Miss Elizabeth saying bye bye”. I just started to sob. They were so wonderful and although I know that they deal with this every day, it is new to me and scary. It is a scary road that I am just beginning to travel and I have so much to learn.

I told my husband that we needed to get him involved in music so he got him a mini Casio keyboard. Joey bangs on it for a bit and then gets bored. Babies’ attention spans are not very long. He ordered him some Braille blocks because even though he doesn’t know Braille, blocks are supposed to be helpful, especially the kind with different shapes that are pushed through holes.

A friend gave him a puppy that has a lot of different sounds depending on which arm, leg, ear, tummy you press. It sings songs and Joey likes it. He’s still very young but we play with it every day and I sing along with the songs…
“Head, shoulders, knees and toes (echo…knees and toes)
Head, shoulders, knees and toes (echo…knees and toes)
Eyes and ears and mouth and nose
Head, shoulders, knees and toes (echo…knees and toes)”

…and we touch all those body parts. That song seems to be in my head a lot lately. I strap him in my Moby wrap facing out and we walk around and I let him help me wash bottles or I hold his hands. He mostly likes to suck on my arm right now and that’s fine.

My favorite thing is when I kiss his lips. He sticks out his little tongue and wants me to grab it. He smiles and then sticks it out again. And again. And again. It’s so precious. Have you ever seen something so innocently perfect, so precious, so sweet that it just made you cry? This is one of those moments. I would do it for hours if he wanted.

This requires a lot of time. I cannot put him in a bouncy seat with a toy in front of him and then fold laundry. I talk to him the entire time. All day long. I do get tired but when that happens and I suddenly realize I’m not talking for a second, I look at him and this beautiful baby is sitting there so quietly…waiting. I wonder what he’s thinking about. Is he waiting for me to speak to him? Is he lonely? Is he worried I’m not there? Is he singing in his head? I will suddenly realize what I’m doing and jump down to him and love on him.

Kisses…lots and lots of kisses.

So here we are. My sweet baby boy who has been through so much cannot see. More than ever, we need to sell our two-story house. My husband e-mailed the expert in the field of ROP (Joey’s eye disease) but hasn’t heard back from him yet. My mom is looking into eye transplants but I suspect that this is the road for us. I don’t have time for anything but Joey. And it’s hard. I look at my house getting dirty, the clothes need cleaning, the grass needs mowing. And it will get done. All that is important is this baby boy.

I want Joey to feel safe, to feel loved and cherished, to feel that he has so many people around him that see him as a normal little boy and will play with him and hug him. I want him to know his family, to recognize their voices, to know their presence.

And I want him to have fun, to learn. This is all that he will know so as hard as I think it will be on him, I have to remind myself of that and realize that it will most likely be harder on me because I know what it’s like to see. I will find ways to motivate and stimulate him. We will play and laugh and lift our heads and crawl and dance and sing and hug and cuddle and run and be courageous. We will live.

I love him more than ever. And I am so lucky to have this beautiful baby as my son. And suddenly I can see more clearly than before. I can see what Joey has been trying to tell me all along. And he is patient with me. He is one wise little baby. Joey has such a sweet spirit and he is so unique and special and dear. Joey will succeed where people think he may not.

Joey has made things much clearer for me. I see things so different than before and I consider myself blessed. I haven't figured all of this out but in the meantime, I will love my baby and be his Mommy, his Mommy who he can rely on to be there every time he reaches for her.