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!