Sweet Baby Laugh

Tonight, my husband was playing with Joey and currently we are working on his strength, trying to get his to push harder on buttons and such. So after Joey kept making his mini piano toy play, Thomas told Joey, "you are so strong! Like Muhammad Ali!" And then he began the rant, "float like a butterfly, sting like a bee" with which he would follow with pretend punches and punch sounds.

All of a sudden, Joey starts making little sounds like he's actually laughing. As fast as I could, I grabbed the video recorder and got the tail end of the scene...thankfully! It was so precious and cute! After he got tired of it a little and his laugh turned to smiles, we started back with his strength play and we actually got a few of his hard attempts at raising his arm and bringing it down hard (well not really hard, but hard for Joey).

It's amazing to see him smile and follow directions like "bang, bang, bang" because it's all so genuine, deep from his own heart. I know all baby laughs and smiles are genuine but 80% of a baby's development is visual so he's always behind a little. Since he can't see us, he has never seen a smile or copied a smile, they are all his very own. And he can only model from touch and being lead by other's hands. He's very brave. I am such a proud Mommy! His smiles light up my life!

To see the video, click at the top of the list of his videos...it's titled "Baby Joey Laughs".

New Dreams, Hopeful Dreams

Joey is such a punkin! I have never known love like I love my baby boy. We aren’t allowed to go out much, except to doctor’s appointments. I was feeling jealous seeing all these cute photos of my friend’s babies at pumpkin patches so we made a pumpkin patch in our backyard. Joey was cute. He sat on the grass for the first time, felt a pumpkin for the first time, wore shoes for the first time. Of course, he wouldn’t smile for the camera even though he smiles ALL the time.

We’ve had a lot of doctor’s appointments lately. He had a big one with Ages & Stages where they did a 3-hour extremely thorough evaluation on his growth. He did not care for these therapists/doctors one bit. He was so fussy and whiney and eventually fell asleep in my arms. They just sat there and waited for him to wake up. It was awkward but he woke up and still didn’t like them. I can’t say that I blame him. The boy can’t see and they brought this huge bell out and shook it in his ear and when he jumped and then cried, they concluded that “Joey is startled by various noises”. Actually, he isn’t as startled as he used to be. I just don’t typically bring loud noises right next to his head and then catch him off guard. I announce everything I’m about to do repeatedly such as, “getting some ice…loud loud ice…here comes the ice! Ice is loud, isn’t it?” I find that my calming voice mixed in with loud noises distracts him from being surprised.

In all honesty, the therapist/doctors were perfectly nice, Joey just seems to have his preferences I am realizing. We have a helper come 5 days a week for several hours a day and Joey just loves her. Her name is Leslie and she loves Joey too. It melts my heart. She usually comes to appointments with me and when they all left the room that day, she and I sat on the floor with Joey and he began to perk right up. He was kicking and laughing and doing all sorts of things he wasn’t doing for them like raising his hands above his head, looking left and right. He knew our voices, was used to us and felt comfortable. A therapist came back in and jumped on the ground next to him to show me some things to work with him on and immediately, he started whining again. It was kind of funny in a way. Like I said, Joey knows what he likes and likes who he knows.

He’s becoming very particular about people, very opinionated. When we are around new people, he clings to me very quietly. But a few people come around quite often and it’s beautiful to see his connection with those people. Joey loves his Daddy and waits up for him to come home every night after law school. Daddy is funny to him. Joey loves Miss Leslie who loves on him and plays with him. He laughs and smiles for her. He likes to sit in one of our laps and face out so he can be a part of the conversation. He will add his two cents a lot of times too. Joey loves his Nana who makes such an effort to drive the 90 minutes at least once a week to make sure he doesn’t forget her voice, smell and touch. She brought him the cutest winter outfit this weekend. Joey loves his physical therapist who comes once a week, even though she works him so very hard. He will whine but that’s the same thing we do when we work out…grunt and groan and complain. He only sees his visual therapists twice a month right now (each one comes once) so he is still adjusting to them but he isn’t completely put off. It just takes him a little bit of time to get used to them each session. His physical therapy may start increasing soon to twice a week. I like that. The sweet thing about Joey is that he will warm up to kind people after a few visits and then he is such a punkin! He has one visual therapists who constantly tells me how much she adores him and thinks about him, that is he is a little doll baby, because he is just the sweetest. If Joey gets fussy, she will say, "uh-oh, I don't want him to get sad around me and think of me as someone who makes him angry so I will let Mama hold him until he's happy again!" She's so sweet and funny. All his therapists/doctors tell me, “he sure knows his Mommy!” That makes me feel really warm inside.

In the end, the Ages & Stages people evaluated him at a pretty low level but I’m not worried about it. Many of the things they didn’t see, I have seen him perform. He is simply particular about who he performs for. The only thing that makes me a little nervous is this shake he has in his leg. It’s a possible sign of cerebral palsy. However, typically it goes hand in hand with stiff tight muscles and low muscle tone, which he has neither. He is very loose and works out great so hopefully, it is just a little leftover from being a preemie or perhaps I will just start working his muscles a little more from now on. We got him a little sassy bouncer to hang over the doorway so he can bounce and straighten his legs. We placed him in it and let him get the feel of it the other day but he needs to really build up some confidence and strength before he will be able to bounce full force.

He is also getting more used to a schedule which is helpful to me. He has a lot of doctor’s appointments this month and this throws him off his schedule but they are necessary. I can't believe that on November 4th, he will turn 9 months old! This month he sees doctors for neurosurgery, orthopedics, pulmonary and his pediatrician and this is on top of his 6 therapy sessions.

He is such a sweet boy…so cuddly and easy going. I found this toy dog at Target that lets you download his name and a few favorite things like animals and food. Then it sings songs using his name and Joey is absolutely mesmerized by it. The voice sounds similar to my voice when I talk high and sweet and I think he recognizes his name. When we played it for him on Halloween, he would start whining every time it stopped. We were able to pick songs it plays and they can be changed out at anytime. I think this may be something he becomes very attached too. He really likes to touch it and rub the arms and paws and nose.

Joey loves to play his piano. He will press the keys and move both his hands over the keys. I share these things because his therapist tells me repeatedly that most babies with Grade 4 IVH (brain bleed) have all the tightness in their muscles but they also tend to keep their hands in fists and have a hard time with daily functions. She and I are constantly amazed by all of his progress. He is a miracle everyday and learning to use the parts of his brain that aren’t damaged. I was told and I believe that it is such a positive situation for Joey to have a parent at home who can work with him on these things. Even though, we are really struggling. We have had no interest in our house and it will be important to set up roots firmly somewhere when Joey starts school so that he can grow up with the same friends his entire life. It will be the best social situation for him since he is blind as this way, all the kids will know him. They will know, “this is Joey, we were in kindergarten together” or “this is Joey, we have always been in choir together”. It will be more difficult if we have to move and go into a place where they are unfamiliar with Joey during their lifetime. I don’t care about money or things at all, I only want to set up a loving home for him, somewhere where we can commit not only for that purpose but also for the time coming soon when he will learn to hold himself in the crawl position and explore the house. He needs to know that things are always where they are and he needs consistency in his home. I can only hope that our mortgage company agrees to work with us until Thomas gets out of law school so we can stay put. We love our neighborhood, the schools, the location…our home. It’s not a perfect house, it needs work but that will come someday. We have love in our home. We have laughter, we have tears…but most importantly, we know that we can always be our true selves and rely on each other through the hard times. We know that we will come out on the other side together, there for each. Our home has the love this family needs…unconditional love.

To be honest, there has been a lot of sadness in my life this past year, obviously. But since Eli's death, I have learned so much about myself and people around me. I have learned that I have a lot of anger in me, anger I must work through, anger about losing my son, losing the dream of Eli, anger at the loss of Joey's sight and the dream of what could have been. I have learned that I do not matter, that the selfish wants and desires I once had are insignificant. All that matters is the time I spend with my sweet precious baby and the kindness and love and effort others show towards him as well. I have learned that there is a lot of cruelty in the world, cruelty caused by selfishness, lies, ignorance...and I have no desire or time to deal with such cruelty. I have learned that the disappointment people bring into my life is out of my control but their ability to continue disappointing and hurting is something I can control. And I have learned how much we need (I need) the beautiful positive encouragement I receive from so many precious family and friends. I understand why people in the hospital always asked and continue to ask me, "how's your support system?" In a situation like mine, it's easy to get lost and feel alone, overwhelmed and out of control. But most importantly, I have learned to create new dreams. I have learned that the only thing that can keep a person going is hope. And I have hope. I have hope for Joey and his future. I have hope for my small family of 3. I have hope for more children. I have hope for our future roots and love and faith and trust in God's plan for me.

I remember when I was sitting in rounds the last week or so before Eli passed. Every day when I went to the hospital for rounds, I went with my little notebook in hand, ready to take notes, ready to hear the plan of action for the day. Every day, I truly hoped for something positive, a miracle. Everyday, I hoped Eli would get better and I genuinely believed he would get better. One particular day, I listened to the doctors talking (as if I wasn't there - as usual), suggesting that there was nothing they could do. They were just sitting there in silence and I felt my blood start to boil. I tend to cry when I am angry more than when I am sad (although intense sadness brings the tears full force). I remember saying, "I don't understand...what do you mean, there is nothing that can be done?!" One doctor said, "Mrs. Bonura, Eli's body can only take so much." I became more angry, "yes, I understand this...I understand that YOU think he is going to die." I looked at the next doctor and said, "and YOU think he is going to die," and then the next doctor, "and YOU and YOU and YOU all think he is basically dead. So, what I'm hearing is you are saying there is no hope here...is that right?" A doctor said to me (and I am paraphrasing because I cannot remember her words exactly), "Mrs. Bonura, we have tried everything and we think that his suffering is being prolonged by you not accepting this." I sat there with tears streaming down my face and said, "but Eli has beaten this before...twice! Why would I think he couldn't beat it again?" A doctor said, "the kidneys can only take this abuse so many times before they fail." I remember wondering if these people were actually suggesting I tell them to let Eli "go" so I took a deep breath and said, "You are not God. None of you are God. I am not God. It is not my decision, nor is it your decision if Eli will live or die. It is clear that none of you have any hope but let me tell you something, it is impossible to function in this hospital, in this situation without hope. And I have hope! Obviously, I am the only one with hope! And let me tell you one more thing...whether Eli lives or dies, that is NOT your call! That is between God and Eli! I will always have hope for my child, even if I am the only one!"

Unfortunately for my personal desires, God decided that he wanted Eli. But I will still not give up hope. Hope is what gives us dreams, creates desires. I am creating new dreams every day, as I watch Joey progress in therapy, as I research blind school programs, as I question therapists about possibilities and situations. Every question I have, every doctor's appointment, every therapy session, every interaction with my child, I am creating new dreams. Hope is what heals the broken heart. I am hopeful for my family, for our home, for my sweet Joey. I will always have hope for this!

A Day of Remembrance

Today was a very special day for my husband and me. We went to a Remembrance Walk to show our love for our child(ren) who are no longer here with us. When we arrived, we checked in and received an ornament with Eli’s name. The ornament was made of pewter in the shape of a heart and read, “Your life was a blessing, your memory a treasure…You are loved beyond words and missed beyond measure.”

We brought a few things with us. First, we placed Eli’s photo album on the Memory table and I carried a framed photo of Eli and Mommy. The word “Hero” was on the frame because after everything Eli endured (as with Joey), they are my heroes now and forever more. We strolled along the Memory table and as we were there fairly early, there were only a few others who had their precious baby’s (or in some cases, more than one) photos out. There was a pencil sketch of twins that grabbed my attention and I wondered if I could get an artist to sketch the boys together in a drawing since they were never able to lay side by side.

We sat down and waited while people began to arrive. There were couples, most looking solemn, but all seemed bonded together. There were a few large groups of people wearing matching T-shirts in remembrance of their precious sweet ones. It was inspirational to see the support these families had. One mother who was pregnant teared up, I’m sure for obvious reasons, and loved one after loved one comforted her. I had already teared up myself a few times but I was able to hold it together. I asked Thomas to snag some tissues if he saw any as I expected to need them later. He was sitting next to me sipping coffee and he leaned over and said, “A lot of people are looking at your album.” As he was saying these very words, I watched a mother sifting gently through the pages of Eli’s life in the distance.

As I looked around, I saw many people who had shirts stating their sweet one’s name, birth and death dates and a few with only one date. This of course meant that their baby had only survived one day. There was a large group wearing gray shirts that depicted a ladybug with a halo on the back. There was another large group wearing light pink shirts with baby hand and footprints on the back. There were some other groups and then there were some couples who brought the siblings. Looking around, I could see the pain on the mother’s faces. In a way, I was searching for that pain, for a common bond. And when I inadvertently made eye contact, there was a truth that passed between us for that half second, a truth that we both knew how we felt.

I started getting edgy as the crowd grew and I asked Thomas if we could see the more filled Memory table. As we strolled down the table, I watched other people looking at the photos and baby molds. I opted not to bring Eli’s mold as I had already sobbed the day before rubbing his tiny hand and foot on my cheek. It needed to stay in the trunk for now. They called us together so that we could begin the “Walk”. It was to be a silent walk, one to think about our loved one(s) and what they mean to us. We began the walk and I suddenly become filled with thoughts of Eli. I remembered his sweet face, his darting eyes when he looked at a picture book, his tight squeezes, his foot pushes. I remembered when he didn’t want to be on his side facing away from me so he clamped down on his breathing tube and almost caused a code. He was stubborn and strong willed and smart and…oh how I missed him. I felt the warm tears rolling and rolling. They were burning my cheeks as they rolled down, one by one, large tears. I felt each and every one. Every once in a while I would look up at Thomas and he would give a small smile as if to say, “I understand.”

As we finished the walk, we came to be seated. There were large groups of balloons in pink, blue and white. Once everyone was seated the speaker was introduced. She was a woman who had lost two children many years ago. She was an author and today she was going to tell us some truths about this situation, about life, about Jesus. She began by saying that it was interesting to her how there were so many people that inadvertently did not know what to say. Some would say the wrong thing, some would say stupid things and some would say hurtful things. She wrote an article about what not to say after the death of her first child. As she spoke, I felt like I understood her a little bit, there was not only a familiarity in what she was saying that she felt, but also the tone she used, the way her eyes sank. She was still mourning after all these years.

She went on to say that many times, there are people in our lives who we thought would do one thing in such a hard situation and they did the opposite at one of the most sorrowful times in our life. She compared it to Jesus. She wanted us to know that Jesus also felt the same way. She read a verse where Jesus spoke to his disciples, his best friends, because while he suffered, it was as if they didn’t care because they were asleep. Jesus was so sad that He said, “My soul is overwhelmed with sorrow to the point of death. Stay here and keep watch with me….Could you men not keep watch with me for one hour?” That verse resonated with me so deeply because I felt that Jesus felt a piece of my pain that I had not shared, pain I thought I was alone with. And I was comforted to know that the presenter was speaking of familiar situations, familiar to all of us. She encouraged us to forgive these people in time because the reality was, they just did not truly “get it”. My heart was softened in some aspects with her words.

She went on to explain that no matter what people say or do, no one will ever truly understand what it is like to experience what we, those who have lost a small baby, have experienced. We do not have the lifetime of memories of an older child, but only the memories of hopes and dreams that we set for our child. Not to discount the loss of an older child, it’s only a different kind of loss. We are the ones who believed that our child would be born healthy, would grow, survive. The amount of time we devoted, not just physically, but emotionally to our child can never be understood unless you have watched the sweet soul slip away from your fingertips, from your dreams. As I looked around, for the first time in a long time, I felt connected to mothers who were sitting in their quiet spots, tears streaming down their faces. I knew they understood my pain as they went through their own pain…and I began to cry for those mothers. There were over 200 people here and it just didn’t seem fair.

The speaker went on to mention that many of us may have blamed ourselves. Perhaps we didn’t do everything we could to save our baby. Maybe if I had rested more, lay in bed longer, not lifted that box that one time. Perhaps I was being punished for my sins, for the things I had done in the past. But she reminded me that it was not possible that my babies’ death was a punishment because there was already One who took care of that for me. Jesus already suffered for my sins.

She also read a quote from a book and I will have to paraphrase it because I cannot remember it exactly. It was written by a man who also lost his 5 year old child to leukemia. He was asked how he would feel if they discovered a cure for leukemia the day after his child passed. He said he would feel good because it would be of no consequence to him. God had decided and placed his mark on his child before he was born and how he went was just procedural. God always knew He was going to take his child and when He would take him.

That is something I have to remind myself constantly. There are so many times I feel anger towards certain hospital staff who told me this and that or caused me to put Eli down when I was holding him, or told me I should cut his life support or that they didn’t believe in God. I go back in my haunted thoughts time and time again. I catch myself obsessing about the same scenes as I try to fall asleep at night. And I force myself to repeat over and over, “God always knew He would take Eli. God always knew He would take Eli. There was nothing I could do. There was nothing I could have done differently.” Logically, I know that is true. Faithfully, I know that is true. But emotionally, it is still a battle because selfishly, I want Eli with me in my arms.

The speaker was moving and I teared up many times through her speech. I caught Thomas wiping a few tears as well. Her words were an accurate depiction of what many of us have gone through and still struggle with day to day. It was comforting to know we were not alone.

They began to call out the babies’ names. Some people had more than one loss (like us). I felt so guilty sitting there because I hadn’t realized I could have had my first baby called out. I prayed for that one, asking him/her to forgive me, knowing that name would be called out from now on. As we waited, baby after baby was called out. The parents would stand and walk to a tree and hang the ornament. Most mothers had such sorrow and loss in their eyes. Many were crying. The dates of the babies’ birth and death was read and even though for some, it had been many years, there were still tears and sadness coming from the mother’s sweet eyes. We sat and waited to hear Eli’s name and as I waited, I thought if Eli and all his ways and the tears kept rolling.

And then our baby’s name, “Elijah James Bonura. February 4, 2009. June 22, 2009.” I came out of our aisle first, then Thomas. He took the lead and grabbed my hand. The tears were streaming. I didn’t care if anyone was watching me because if they were, I knew they understood. We got to the tree and I asked Thomas where I should hang it and he said, “anywhere, just find a good place.” I found the perfect place. I had to stretch a little bit but I hooked it on and then twisted the ribbon attached to the ornament so I could see his name. It felt….peaceful.

I wished Joey could have been there as I looked around at the siblings, some were twins. Some parents had lost both twins, some had lost triplets. There was a mother who had 4 or 5 miscarriages. I know this because they began to hand out balloons. Every person there got a balloon for each person they were remembering. So Thomas and I each got a blue balloon for Eli and a white balloon for our first baby that we lost in a miscarriage last year. I wrote on Eli’s balloon, “For my sweet angel Eli…Mommy loves and misses you very much…forever.” I wrote on the white balloon, “In loving memory…Mommy loves you…forever more.”

We walked far out to the parking lot of the church and then people began to let the balloons go. I slowly released my strings and they drifted upward. When Thomas released his strings, they became entangled and stayed together. I watched my balloons and saw them drifting slowly apart. I panicked a bit because I couldn’t keep my eyes on both of them and then I finally let myself relax. I watched them drift and drift. I became lost in the moment and only thought of my babies. I was the mother of 3 and could only physically hold one. I thank God for that privilege.

We stared up for a long time and then looked at each other and kissed. I love my husband so much. Things have been difficult for us. Stressful. And at times, lonely. But no matter what, we are not giving up on each other because we know that we were meant to be together and that God has a bigger plan, one that we do not understand. I can understand why some marriages break up because it just seems easier to avoid the pain. And Thomas and I handle things very differently. But we both believe in our marriage, in our family and our future.

Today was a difficult day. It was an emotional day. But I think it was a much needed time and I look forward to doing it year after year, with Joey, with our future children. We will never forget any of our babies and we will love and miss them forevermore.

Playtime

Being Joey's mom, I just think that Joey is the cutest! He loves to play and some of his favorite toys are an octopus that plays notes when you squeeze the legs (and it smells like vanilla) and he also loves this spinning wheel that makes animal sounds. I attached some pictures of Joey with a couple of his favorite toys.

(I am also very annoyed with this blog site as it is not posting things the way I set it up and as it shows me in the preview...anyone with blogspot experience have any tips? These pictures were supposed to be on the side of the blog and it deletes words. Frustrating!)

Difficult Times for Mommy

"When a man loses his wife, he is called a widower.
When a woman loses her husband, she is called a widow.
When a child loses her parents, she is called an orphan.
When a parent loses her child...there is no name for this type of pain...
It is hard to live and has no name."
~Major Bloomberg

Thinking of my Eli...the only day, the only set of pictures where I held both my babies...

I love you and miss you desperately angel baby Eli...do you miss Mommy?

A Very Bright Boy

My little sweetness…how did I get so lucky? With all that has been going on in my life, I cannot be more happy to have my husband and precious baby boy Joey in my life every day.

Joey has been in therapy for a little while for basic developmental skills he may be struggling with due to his prematurity. Just recently, he has also started therapy for his visually impaired issues and he did great. He sees two VI therapists, one for basic coordination…things like touching, feeling, writing later on. His other therapist will work with him on transportation which right now involves getting Joey to lift his head so that he can eventually get into the crawl position. He’s struggling there mostly because there’s not much incentive. It’s hard to lift your head and he can hear everything just fine from the ground. We work on this but at his pace.

Some of the sweetest moments have caught me by surprise lately. I left Joey with his Daddy so I could wash and prepare bottles for the evening and when I came back in the room, Daddy was very meticulously helping Joey feel the edges of these shapes on a puzzle. I mean, I work with Joey off and on during the day, but to see Daddy take such initiative and he was so gentle and loving, well, it was a precious moment that made my heart melt. You really can fall in love with your husband all over again by simply watching him love your baby. He works so hard for us and then goes to law school at night so sometimes, he has to catch up with Joey through video and I know how hard that is for him. Joey has been feeling our faces a lot, especially Daddy’s face. He likes the scratchy beard. He also likes the rough side of Velcro so that makes sense.

The other day I was having a moment where I was really missing Eli. A lot of things piled up on me and I was just sobbing and here was Joey, just playing with the crinkle worm toy I had in my hand. Through my sobs, I was telling Joey how much I loved him, how much I missed his brother, how sorry I was that his brother wasn’t here and how I felt like I wasn’t a good mommy because I was crying right then. I kept telling him, “Mommy will do better, Mommy will do better,” and through all of this I was changing his diaper. He likes to kick (it’s his new favorite thing) and he just starts kicking and cooing and all I could do was giggle through my tears. Those are the best laughs sometimes, the ones that happen in the middle of a good cry. So I picked him up, held him tight, rocked him back and forth and told him I loved him so much. This of course also made me cry. I was already emotional and loving moments like this really get to me.

Now that Joey has been approved for his program, I will start getting respite help during the week. The program actually pays someone to come to my house and help me out, either by allowing me a simple nap, letting me go to the grocery store, do some cooking. I actually found out that they can clean for me if I want, whatever I need. It’s so generous and to be honest, I don’t know what I need. I think it will take me some time to get used to it and so in the beginning, she may just follow me around or chit chat with me. Adult conversation is rare. I just have to be careful to stay on task.

Next week Joey has his pre-op appointment for his (hopefully) last surgery. It makes me so nervous because surgery is so hard on him, especially the anesthesia. But it must be done.

So attached are pictures of his therapy and there is also a video so you can see this very bright boy in action. He really is very bright and my saving grace.

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.