Thursday, March 11, 2010

Joey is A Busy Boy

Sorry it has been so long since my last update. February was such a super busy month for Joey. I suppose this is because it was his first birthday and everyone needed to check up on him. So this update will really be a detailed accounting of Joey’s progress, doctor’s reports and potential needs for the future. I know that so many of you have been keeping up with him and praying for him and I appreciate that from the bottom of my heart.

As I write this, I am in the waiting room of my specialty OB, waiting to get a check-up on Baby Girl. There are MANY people ahead of me in line so this may be a very long wait but I am hoping it won’t be as I have an appointment with my regular OB in about 2 hours to check for pre-term labor. I am at the point where I have an appointment every 2 weeks now for this purpose. Since the boys were born at 25 weeks, I didn’t quite make it this far along last time so all of this is still new. I was just chatting with another mother to be and we both agreed that at this point in our pregnancy, everything is exhausting. Getting out the car and squeezing between the two cars alone was an interesting picture, one I’m sure people entering the mall parking lot next to the building I’m entering probably found amusing. It’s ok. I feel so ecstatic to be this far along…here at 29 weeks. Everything changes in the third trimester. The survival rate for early birth goes up to 90%. And the complications that my sweet boys had to go through for 5 months in the hospital and Joey will have to endure his entire life decrease dramatically. It amazes me and saddens me at the same time that 4 weeks make such a difference. If only I could have held those boys for 4 more weeks…lots of if’s.

So I will start with Joey’s therapy. He is currently receiving physical therapy, occupational therapy and visual therapy. PT and OT are through ECI and VT is through the school district we live in. I LOVE his developmental specialist (who also does the OT). She seems to also be somewhat therapeutic for me as talking about all of Joey’s issues and growth and development relieve a lot of stress. Joey works very hard for her and I am so proud of him. She teaches me the exercises to complete and we work on this every day as she only sees Joey once a week. She does lots of exercises to help build his arm, trunk and leg strength and although it looks like nothing, it is really hard for a little baby and by the end of it, he is tuckered out! He is now able to prop sit (sitting while using his arms as props) and he can also balance on all fours for a small amount of time. He gets pretty tired though and will slowly trickle down to his belly. We were working on rolling from his side to his back for so long and he has completely mastered that skill and is now flipping over to his back, not every time, but often without help.

He loves to work on his tactile skills and is very good at handling objects, sometimes a little wildly, but he does use his fingers well and holds things tightly without dropping them (unless it’s on purpose). One of his favorite small toys is a small handled trinket that holds 3 small bells. He loves to bang it down hard on his bumbo desk. He also enjoys having his drum on his right side and uses it as a comparison/safety zone to other sounds he makes and textures. He scratches his fingers on it and bangs on it very loudly.

And music. Joey loves music so much. Any toy that plays music is an instant hit. Once a song starts, he freezes and listens intently. Once the song ends, he immediately searches for the button to restart the music. His CD player will instantly relax and soothe him and he gets his most enjoyable moments cuddling while his favorite CD plays. He doesn’t get sleepy or bored…he simply listens with all of his heart. Afterwards, I will put him on his keyboard and he will bang and bang as he realizes that he is in charge of the sounds. I don’t know a lot of songs but he does enjoy when he play and sing “Do, a Deer.”

He also really enjoys Patty Cake and “Yayyyyy” while we clap our hands together. He is very motivated to lift his head when he knows he will get a “Yayyyy”.

We recently saw an outside PT for an evaluation and it was horrific. She obviously had no experience with visually impaired babies plus her personal communication skills were atrocious. I personally didn’t even know her name until I saw her set her badge down to take Joey. Upon our first conversation, she came across very high on herself. She constantly put down the current OT we were seeing, not that she knew this person, just that what she was doing was all wrong. She was extremely condescending but I was calm and decided that I would be patient and see how things went with Joey.

She basically just grabbed him and threw him around. He was screaming and crying and she was overall…an idiot. She obviously has no business with babies or the blind and when I finally began crying out of anger, she assumed it was because I was upset over Joey’s assessment and said that I probably shouldn’t have been there, that most parents wait in the waiting room. Excuse me?!?! He’s a baby..not happening! Thank goodness I was there because at one point, she simply laid him on his side and walked away with no explanation while he screamed. I jumped down and scooped him up and decided she would never touch him again as all she basically did was terrify my sweet angel. Just to give you an inkling of her ignorance, she shook a toy in front of his face…he’s blind. Good grief. I put a call in to the manager of the clinic Friday but haven’t heard back yet. I’m sure they are getting her side of the story first, as expected. From my experience, I’m sure nothing will happen but I will not rest until I say my peace.

His orthopaedic doctor found a vertebrae in his L2 lumbar that was a slightly misshapen, called kyphosis. It can cause problem with the shape of his spine and push into his spinal cord as well as create problems for Joey trying to sit up tall. He ordered an MRI and a follow-up X-ray and as it turns out, his vertebrae are calcifying in just the right place. His misshapen vertebrae is not pushing into his spine at all. What he did find was a little unnerving though and will have to be handled by a neurosurgeon. He discovered that Joey’s spine is actually too long. It’s called a tethered cord and the neurosurgeon will have to evaluate it and decide if he needs an operation. It’s scary because upon researching the issue, we discovered that not operating on it could cause paralysis or extreme developmental problems and operating on it puts a risk to his spine that could also cause paralysis. He has an appointment in April with the neurosurgeon so we will have to trust what the doctor says and go from there.

So as mentioned above, we will see the neurosurgeon for the spinal cord issue. We are hoping that his shunt is still doing its job. At our last appointment six months ago, it was already becoming clogged with brain matter but it wasn’t too bad. Most shunts, if they are working well have to be replaced within the first two years of life so we are expecting this at some point. We wait and watch for symptoms of clogging which include lethargic behavior, vomiting, fever, reddening and swelling of the shunt area. Once this occurs, we were instructed to drive straight to TCH emergency and request neurosurgery. Joey had extreme hydrocephalus , most likely caused by his bilateral grade IV IVH (brain bleed) and the shunt really did its job allowing the brain to grow and expand. The parts of the brain that were damaged can never be repaired but other parts of his brain could take over and learn how to work for the damaged sections.

We met with a neurodevelopmental doctor (through the Meyer Center) who was actually the first doctor to say that he thinks there may not be as much brain damage as originally thought and the issue may be the “white matter”. He described it like a computer. The brain is the computer and your actions are the monitor. The white matter are the cords. This is where Joey’s problem may lie. So we are waiting for this doctor to evaluate his MRI and get back to us. He is a very nice man and I like him very much. He kisses Joey’s hand a lot during his exams and tells him “we love you” over and over.

His helmet is working to repair the flat part of his head. Joey is supposed to wear it 23 hours a day. I only make him wear it at night. He hates it so much and becomes so lethargic that he can barely function and I just couldn’t stand to see my little boy that miserable. Is he manipulating me? Probably. And he wins. The doctor told us that he didn’t really think it would work on Joey but it is! It’s going very slowly but there is improvement so we are looking at about six more months of helmet time.

We thought that Joey was about to be taken off his monitor. This monitor looks for apnea episodes and also records his heart rate. If his heart rate goes below 60 beats per minute for more that 15 seconds, it alerts us. Lately, it has only been going off when the cords get loose, which is quite startling at night and annoying. Joey only wears it at night. For some strange reason though, the memory light had been coming on saying that he was having a lot of episodes. After reviewing his monitor downloads, his doctor saw some Bradycardias which are due to low heart rate. This is something most preemies deal with and outgrow and we thought Joey had overcome this problem. The monitor hadn’t been going off because his heart rate was only dipping down for a few seconds. So, it has been decided that he will stay on the monitor and do a sleep study. We aren’t sure when the sleep study will be but I was told in the next 2-5 months. Geez…

As it turns out, Joey has a paralyzed vocal cord that may not ever repair itself. His voice will always be soft and quiet. The exam to find this out was awful for him but the doctor was the sweetest. I almost asked her if she had a paralyzed vocal cord because she spoke so quietly and soothingly. I really liked how she explained how things would happen instead of just “attacking” Joey (as I like to call it). She put a syringe full of “goo” into each nostril and that had a numbing agent as well as a decongestant. Then we had to wait 10 minutes. Joey was of course very upset so we worked on soothing him during that time. Then she came back in and I held his body while a nurse held his head and she inserted a thin camera tube in through his nostril to watch his vocal cord. He needed to be awake and crying (which I understood) so she could see the movement. The doctor said it would be the longest three minutes of my life but it only ended up taking about 30 seconds, thankfully. Joey was a trooper. She asked if Joey had a PDA ligation at birth (a clip on his heart) and I told her he had. She said that many times this causes the left vocal cord to become paralyzed as they share the same nerve. The good news is that the vocal cord is paralyzed close to midline so surgery may not be necessary but even if we do decide to try surgery, it won’t happen until he is five, maybe ten years old. We see her once a year.

Joey had a horrific eye exam in February. His ophthalmologist is wonderful and has been with Joey from the beginning but these exams are never easy. It started with a ridiculous wait of an hour and a half. Then his eyes were dilated and they said we would have another 30 minute wait. After another hour, I decided we were done. Joey had therapy scheduled that afternoon and sometimes I don’t know who these people are thinking that it’s just ok to make patients (children) wait indefinitely. I was polite and asked the receptionist how much longer it would be as we had a therapy appointment and she began lecturing me, stating that I should have told someone I had another appointment. I stood there for a second, then decided that she was ridiculous. Why would I think that I needed to tell them at check-in that I have another appointment in FIVE hours?!?! So I said that to her and when her response was not favorable, I took a deep breath and just as I was about to unleash my unlovable side, we were called in. All I can say is that she was saved.

The first doctor we saw was a fellow (and this happens a lot at TCH). She began examining his eyes from a distance and then told me that he was near-sighted in his right eye. I looked at her and almost burst out laughing. “Does he need glasses?” I asked. “Oh,” she stuttered, “I mean if he could see, he would be near-sighted”. Good grief. Where do they get these people? She went on to say his left eye was black, there was nothing there. I just wonder if she could have been a little more direct (sarcasm). Of course it is, it’s detached. I then asked what are some possible upcoming procedures for Joey since his right eye muscle will obviously deteriorate? This woman turned around and literally sighed as if I was completely interrupting her and had no right to ask question and then gave me some ridiculous short answer. I was about to lay into her but I knew we only had 30 minutes before we had to leave so I held my tongue. I was feeling very impatient by now.

The doctor came in and was pleasantly surprised to find that we were expecting a baby sister. He’s known Joey (and Eli) for almost a year, since he was hospitalized. He had me hold Joey while he examined his eyes and this went on forever, mostly because he was looking for something specific. Joey was crying and crying and after a while, I began to cry as well. Afterwards, he told me that he thinks Joey may have something going on in his right eye, maybe he can see shadows or some light on the far right side. But we won’t know anything until Joey can tell us. It won’t be vision but if it’s light or shadows, this will help him with traveling. He will be able to tell when he goes outside or a light is turned on. But we have to wait and see.

It’s almost over! Joey has one more shot this month (he gets one every month) and hopefully it will be his last one. We have been homebound since last September and it’s very lonely. Joey likes to be home more than the doctor and to be honest, it’s probably for the best for me too, being pregnant. I still look forward to play dates and get-togethers with friends as I think the socializing will be good for Joey. And I desperately need some friendship.

Even though I believe Joey can hear just fine, it has been suggested by a few doctors to get his hearing tested so we just completed that task. The doctor was wonderful and asked why I thought Joey could hear. So I told her that he wakes up when we make noise, that music calms him down, that he turns to listen when he hears me getting his toys out, things like that. She then looked at me and said, “well yes, those are all clear signs of hearing…so, why are you here?” I laughed and said that several doctors suggested and I was finally beat down. The test was simple and in the end, even though I thought he would fail it, she said he did fine for his age and thinks he can hear out of both ears well. So we will wait and see if his neuro-developmental doctor wants a more extensive sedated test but for now, we are good.

Physical Medicine& Rehab – this is a clinic at TCH that will really decide if Joey needs any sort of ankle supports, a wheelchair or special walker, and any special rehab. He had an appointment 6 months ago when he was about 7 months old and he was assessed to be at the 2-3 month old developmental age. I really hope he has shown some growth. Well, I know he has. It really just all depends on the person who tests him and how they treat him. He will perform if he feels safe and comfortable but in the past, he has gone through evaluations with some real characters. For some reason, people like to shake loud scary bells really hard in his ear and when he freezes from terror, they say that he either can’t hear or there is something wrong developmentally with him. He usually bursts into tears shortly after. I wonder if they would like to have someone do that to them when their eyes were closed and they weren’t expecting it. Anyway, I guess we will see how it all goes.

This past year has been a difficult one and will continue to be a struggle as there have been many days when I still feel so angry at the loss of my child. It’s been an extremely lonely year as we have been homebound and few people have visited. Some promised and never made it, others had children and didn’t want to risk getting Joey sick, and for most people I understand. They still don’t know what to say or do. And so it has been me and Joey. Although my husband tries, he is consumed with law school and will sometimes go a week without seeing Joey awake due to his late hours and Joey’s bedtime. I miss having friends, going to lunch, going to work, but there is no other place I’d rather be that with my precious boy. It just gets very lonely.

I am terrified to have this baby girl, mostly because I don’t know how I am going to do it alone. Yes, my wonderful mother will be there to help in the beginning and other mothers have done it so I know I will survive. I want to make sure that all of Joey’s needs are met as he has a lot going on. Baby girl will have to go to his doctor’s appointments with us and one thing I hope for her to learn is compassion and loyalty, something l do see lacking in this world at times.

Sometimes I can feel myself becoming very cynical from the past year’s experiences and only God and I know the struggle and relationship we’ve had as I try to understand, to stay with Him. And the core of it will stay that way, between He and I. I will say this…I am grateful that He has stood by so patiently. I have plans and will carry them out. I know what God wants me to do with all of this and so now, it is a matter of waiting until the right time to follow through. But I will.

I still cry for my boys often. I will always be honest about that. This morning while I fed Joey his strawberry yogurt, he was deeply engrossed in the music playing in the background. I rubbed my hands on his little knees and went down his leg, “These are your knees,” I began, “these are your shins, these are your feet, these are your toes…you have 5 toes on each foot…1…2…3…4…5…”. Joey will never see these things for himself, he will only learn them from touch. I feel such guilt that he will miss out on these simple things. So I sobbed for his loss, apologizing over and over. It still breaks my heart when I see him reach out with fear in his eyes for the brief second he loses his bearings. I immediately grab his hands and bring them center and get right next to his sweet face, “Mommy’s here,” I say, “Mommy’s always here”.

So here I am…29 weeks along. I can only hope that I can handle this new adventure, that I have the strength. I hope I can.

Below are some cute pictures I took of Joey this past Fall, right before Christmas…hope you like them.

Wednesday, February 10, 2010

Unending Grace and Love

I woke up this morning and felt incomplete. It’s been a difficult year but in all honesty, the last few weeks haven’t been as hard. Although, I thought about my baby Eli, who passed away over 7 months ago each and every day, I hadn’t actually cried recently. I even attended a support group meeting and managed to hold in my tears, mostly because I was so sick I couldn’t breathe, but I felt like it was improvement nonetheless.

This morning though seemed strangely familiar. I was taken back to a year before and without warning, the tears began to flood my eyes. I remembered lying in the hospital bed and had been telling my night nurse that I was having some pains. When they put the baby monitors on me, they didn’t get serious contractions so she gave me an Ambien and told me to go to sleep. My husband had surprised me with a visit as he wasn’t supposed to be there this particular night due to his late law school night class. The nurse even suggested that he go home and get some sleep.

All of a sudden, I was dreaming of excruciating pain and screams coming from somewhere and realized…it was me! I opened my eyes and for some reason began counting…there were 7 nurses all around me and the one closest to me was telling me that the doctor needed to check me. I was in so much pain, I think. The funny thing is that I believe God makes you forget exactly how the pain felt. Otherwise, I don’t think women would give birth more than once. I can only remember that I was screaming repeatedly about how much it hurt. I think in my mind, I was hoping they would just give me some extreme pain medicine and I would go back to sleep. My babies were not supposed to be born this day. I still had over 8 weeks to go!

After the doctor checked me and said I was fully dilated, they began rolling me down the hall. I vaguely remember a nurse asking me where my cell phone was so they could call my husband and in the midst of my screams, stabbing my finger at #2 on my button as this was his speed dial #. It was all kind of blurry but I remember how fast the pain came and went and then I heard the doctor say, “take her to L&D. We are going to have to take one vaginal and one Caesarean”. What!!!! Oh dear Lord! Apparently, Eli was ready to come out naturally as he had made a comfortable spot resting on top of my cervix while Joey was transverse. As they started to turn my bed, she changed her mind and ordered me to be taken straight to the OR.

There was a nurse by my head who suddenly reminded me that I was still screaming, which I hadn’t noticed and that the screaming was causing one baby (Eli) to start pushing through. I replied by telling her, “oh I didn’t know, I didn’t get to attend the childbirth class! What do I do?!?!” She helped me to breathe and slow down my anxiety a little bit.

In no time at all, we were in the operating room and a sweet and very short anesthesiologist came to my head and said that they were going to put an epidural in my back as it would be best for me and the babies. Doing my best, I began turning slightly and began frantically repeating, “go ahead, go, I’m ready…” But he continued with his explanation of side effects and reasons why he felt this was best for me. I simply kept repeating my catch phrase while turning my body slightly, “go ahead, no really, let's go, I’m ready…”.

The nurses chatted about lifting me over to the surgery table and I began apologizing for being so heavy. They didn’t seem concerned and finally told me I was going to have to bend in half for the epidural. I really don’t know how they got me into the position I ended up being in as I not only had this huge baby bump as a deterrent but I have always struggled with flexibility when it came to bending forward. But somehow, here I was, bent over almost completely in half and as I lay there enduring the intense pain that I can now barely remember or describe, this needle that I had been warned about went into my back and I thought, “that was nothing”. I realized I was thinking out loud and when the meds started,




Epidurals. Ah……….

Suddenly there was a sheet in front of my face and the anesthesiologist was standing next to my head. I asked about my husband and they said he was on his way. And then I heard it...the softest most beautiful baby cry. It was Joey. I asked the doctor, “is that my baby?” He turned to me and said ever so gently, “yes it is”. A nurse to my left shouted, “Momma, look over here” and sweet Joey was whisked by looking so tiny and very purple. He seemed like a million miles away.

In what seemed like hours, I heard another nurse shout, “Momma, look over here”, and sweet angel Eli was also whisked by, also so tiny and very purple. I felt so useless and such joy all at once. I didn’t get to hold them. This was not the movie version I had pictured for myself where they place the baby on your chest and he opens his eyes and looks at you for the first time. My babies couldn’t even open their eyes yet, I would learn later.

My husband came in at that moment. He missed it. And I knew he would be so sad about missing it. He came and took the place of the anesthesiologist and from what I was told, I began chattering to him, while he stood and watched the doctor clean and rearrange my internal organs. His expression was one of awe and disgust combined with a weak attempt at looking at me warmly with reassurance. He told me later that I awarded everyone in the surgery room “merits” for doing such a great job (something related to my teaching job) and that when they lifted and moved me off the surgery table, I shouted “weeeeeeeee….” to which they all giggled. I don’t remember this at all. Drugs.

The next thing I know, I was alone. I had drifted asleep and was in a recovery area and Thomas was gone, they had taken him with the babies to the NICU. I didn’t know this and I just felt scared and so lonely. I didn’t even have my babies in my tummy anymore. There was a nurse next to me and she said my husband would be back soon.

When he returned, I was drifting in and out of consciousness but I do remember when they brought my babies to me…one at a time. They were each in their little own travelling isolet. They were so tiny and I was scared to touch them. The nurse had to tell me that it was ok before I even dared to reach out. It seemed like they were so far away, as if barely within reach and I wondered why the nurse wouldn’t bring them closer. I think in reality, my arm was heavy and tired and I couldn’t extend it fully. So an hour after they were born, I was allowed to “touch” each of my babies. My sweet angels who were not even supposed to be here yet…Joey born at 1:50AM weighing 1 pound 10 ounces and Eli, born at 1:52AM weighing 1 pound 7 ounces.

They took them from me very quickly.

Eventually I was taken to a room, a shared room with another patient. I was terrified because I heard the other woman talking as she had just given birth also. I told Thomas I had to get a different room. I knew they were going to bring her baby to her soon and I knew they were NOT going to bring me my babies. Thomas was very persistent and kept leaving the room to explain this to the nurses. Sure enough, it happened. They brought the baby to the other woman. When I burst into tears, she and her husband began talking angrily in a foreign language. Apparently, I was interrupting their happiness and they also wanted their own room. I can’t say that I blamed them…but what else could I do? My heart was broken.

They finally came and took me to a private room and it was almost 6AM. I desperately wanted to go see my babies, I needed to see them…but no one seemed to understand how that was far more important that getting any sleep. I was told that I had to wait until the doctor came to see me, which could very well be anytime between now and Noon. I wasn’t sleeping, I was frantic. It was so unfair. And to my surprise, the doctor arrived right at 6AM and was so kind and sad for me. As soon as I asked if I could go see my babies, he got this shocked look on his face and looked at the nurse and said somewhat angrily, “what?!? Take this new mommy to see her babies! Of course! You go see your babies, right away!” I began crying at his kindness, at his understanding.

And so we were off to the NICU, to begin one of the craziest roller coaster rides I have ever been on, one that doesn’t quite seem to be ending, one that many people have followed and encouraged me through. I have wanted to write this down for a long time and today, the day of their first birthday, February 4, 2010, it all became more vivid, as if it had just happened.

So on this morning, I lay here, thinking of that day, thinking of Eli. I remember holding him, singing to him, his eyes, his skin, everything. It seems as if he was just with me yesterday. I had this insatiable urge to get up and drive to the hospital as I had every day. It’s still so fresh.

I began to weep.

Thomas stirred and then sat up and held me. He knew. It was going to be a hard day for him as well.

We decided to plant a tree for Eli. I picked a Bradford flowering Pear Tree and Thomas planted it that night. I also got an ornament to hang on the tree. The three of us hung Eli’s ornament and huddled in the cold night on this, their first birthday. I felt a little numb at first and then I began to loosen up and let myself soak in the memories I had for my baby boy who passed away on June 22, 2009. He was known by many from hospital staff to family and friends to strangers all over the world. And yet, few had ever met him. He was a fighter, like Joey, who’s little body just couldn’t take much more. Only when I finally told that sweet angel boy that it was ok, that he could let go, did he ever even stop fighting. I know he did it all for me, his Mommy, because I asked him too. Little did I know, God had plans from the beginning to have Eli by his side and only allowed his physical self to be with us for 139 days. When I think about that, I do feel blessed as Eli was so special, and I got 139 days of his life on earth to love on him, pray for him, talk to him, hold him, sing to him, read to him, teach him things, to be his Mommy...and I got such a punkin full of love and joy and I truly believed he impacted so many people.

My support group (MEND – Mothers Enduring Neonatal Death) sent a single white rose in remembrance of Eli’s birthday and I wept at the idea of the compassion and understanding of that gesture. It was such a beautiful idea and I treasure that rose. It sits next to Eli's Christmas tree (that I haven't had the heart to put away) and next to his cake (returned to its pachaging and sealed), all on top of his trunk of memories.

We celebrated Joey’s birthday that night after we planted Joey’s tree and he was such sweetness. He laughed and played in his cake and was the joy of our life, as usual. I don’t know what I would do without that sweet boy and I love and adore him more than I could have ever imagined.

So this day of their first birthday was bittersweet but I survived it and look forward to many more. Healing does happen…and faith returns…and love and grace is unending. Thank you God for that!

Daddy plants Eli's tree

Eli's present for his 1st birthday

Eli's engraved ornament

The engraving on Eli's ornament

Mommy and Joey hang Eli's ornament on his tree

Mommy, Daddy and Joey

Joey gets a Braille birthday card from one of his visual therapist

Nana loves on Joey on his 1st birthday

Joey says, "oooohhh, what's this?"

Joey likes his beaded abacus

Joey thinks birthdays are pretty fun!

What's up Daddy?

Joey loves his new music/sound toys!

Joey and Eli's birthday cakes

Joey enjoys and destroys his birthday cake

Happy Birthday Joey!

Friday, December 11, 2009

All About A Day

The Day: It had been a very long day. Thomas had a late night at school and I was so stressed and impatient for him to get home. He was usually home around 10:30PM but it seemed like it was taking forever for time to pass. I called him at 9:45PM to make sure he was on his way and he had actually left a little late this particular night. I felt frustrated but I hid it.

When he came in, he seemed to be in a good mood. I told him that something was wrong with the toilet. Then I asked him to go check it out. He walked in the bathroom while I sat in the bedroom holding Joey in my arms and then came back in. He said, “I didn’t see anything wrong.”

“Go look again” I stated in a calm but authoritative voice. He turned around and went back into the restroom. I heard him remove the toilet lid and set it down. A few seconds later, I heard him replace it and he returned to the bedroom.

“I don’t see anything wrong,” he reiterated with worry in his eyes as if he knew I were about to get angry. I put my head in my hands and rubbed my temple.

Two Weeks Before This Day: It had been a long time since I got on my knees and prayed to God. It wasn’t that I stopped believing, I just felt like He wasn’t really listening anymore. I had prayed so hard, believed that He would heal my Eli. He said no. I prayed so hard for Joey, that he would see. God said no. I always believed that if you asked for what you wanted, if you believed, if people prayed and believed, how could you think God wouldn’t provide? I had been feeling like I just didn’t want to pray. I was hurting. I was angry. I was sad. I was feeling guilty. I still feel these things on a daily basis.

But on this particular night, I felt like there really was nothing else I could do. I couldn’t help myself. I couldn’t protect myself anymore. The only one who could help me…wasn’t me. It was God.

So on this night, I got down on my knees and I sat there. My mind was empty. I felt as if I had forgotten how to pray. I didn’t know how to say thank you for this, or please pray for this family, or all the things I used to say. I didn’t know anymore. So humbly and weakly I felt the words creep out of my throat, “God? I don’t know anymore. I know you’re there, but I just don’t feel it anymore. There’s something wrong with me. So God, if you could, if you would, please…Would you just let me know that you still hear me? Would you show me somewhere, somehow, that you are still there, listening to me?”

Then I got up, climbed into bed and drifted off to sleep. I honestly didn’t dwell on my prayer or think about it again.

This Day, Back to the Toilet Issue: I looked up at him with an unemotional smile and repeated slowly and quietly, “go…look…in…the…bathroom…verrrrrry carefully.” He turned and sulked back into the restroom without saying another word.

For about a minute, all I heard was silence. I was sitting so still, the television was muted, the baby was asleep. I could hear my heart pounding. He better see it this time! And then I heard it…a small laugh, then a longer chuckle. He walked into the bedroom and his cheeks were bright red and on his face was the happiest smile with glistening eyes. Oh yeah, he saw it.

“Whhhaaaaat?” he sang, “Is it true?”

I smiled warmly, “yes…it is.”

The Morning of This Day: I felt as if something were off with me. I had been so stressed. I told Thomas that morning that I was “late” and he confirmed my thought that I had been so stressed lately and there was nothing else it could be, “you’re just stressed honey,” he said and I knew he was right. I had been overwhelmed with anger, sadness, guilt, worry. It made sense.

That day at Target, I had Joey and our helper Leslie as I was picking up a few things…diapers, wipes, I can’t even remember what else. We walked down the aisle with the pregnancy tests. I have bought so many of these in the past few years. We went through fertility procedures for 2 years, lost one baby and then had the twins. It brought back a lot of feelings but I grabbed the cheapest 3-pack I could find and nonchalantly tossed it in the cart, trying to avoid any memories. It happened so fast, I don’t think Leslie even noticed. I knew this was just for peace of mind because I was told I could only get pregnant with “help” from a doctor.

When we got home, I began putting up the groceries and ran across the test that I had already forgotten I purchased. I knew I should wait until the morning but I also knew that I just wanted to take one test now anyway. I knew it would be negative and then I could go on with my day as planned. I told Leslie I was using the restroom and left Joey with her.

I took the test out, following directions as I had time and time before. Every test reads differently, two lines mean one thing, a line and a plus sign mean something else, a dark line and a light line mean another thing. Immediately, both windows on the test grew lines. I honestly had no idea what it meant so I pulled out the directions and found the section I was looking for.


Are you kidding me?

I read it again. I held the test next to the paper for comparison. Ok. Hmmm…

I walked out into the bedroom and over to Leslie, “What do you see here in these windows?” I asked her assertively as I held the stick in her direction.

“Two lines,” she replied assuredly.

“Two lines?” I repeated in a question.

“Yes,” she said. I stood there wide-eyed staring at her. “Oh my god,” I whispered, “I’m pregnant”.

Leslie’s eyes got wide and a smile grew on her face, “oh my gosh, that’s so wonderful! Wow!” For about the next five minutes we went back and forth saying things like “wow” and “oh my gosh” and “I cannot believe”.

I went downstairs and drank a bottle of water very quickly. I came back upstairs and sat down with Leslie. We were quiet and we were playing with Joey. I got up and took another test. Positive. I came back in and told Leslie, “I took another test.”

“You did?” she smiled.

“It was positive again.” All of a sudden my mind started going crazy. I’m pregnant. I have a six month old baby and I’m pregnant. Joey! How will I care for two little babies? How will I make sure Joey gets all the attention he needs? How will I love this baby? What if it’s a boy? Can I handle that? Am I cheating on Eli? Oh my gosh, we don’t have the money for this. My car isn’t big enough. Thomas is in law school at night. How will I do this alone? What if something goes wrong again? What if this baby is sick or has different issues? How will I manage two sick babies? How? How? How?

I began to voice all these concerns to Leslie and all I can say is thank heaven she was there. If it had not been for sweet wonderful Leslie, I may have had a small nervous breakdown. Her repeated words were, “this is a blessing, Andi”. She was right.

A little while later, I took the third test. I was starting to feel excitement about this new realization. I half expected it to be negative because I was getting excited. I was actually beginning to feel some joy. It had been a long time since I felt joy in my life. This test was also positive. I lay the third test next to the other two on a tall table I have in the bathroom. There they were. Three positive tests.

Throughout the day, I kept going in the restroom to look at them, still in disbelief, still feeling joy. After Leslie left I talked to Joey about it. I told him that I loved him so much, that nothing would ever change that. I told him how sorry I was that his brother wasn’t here. I told him he was going to be a big brother and I knew he would be the best big brother ever. I kissed him and hugged him. I cried a lot, out of guilt and from joy. It was a complicated evening emotionally.

I was very excited for Thomas to get home. I didn’t want to tell him over the phone. So I left the three tests in the restroom and I would let Thomas find them when he came home from school. It was going to be the longest wait ever.

Four months from this day (December 3rd): I had my appointment to find out the gender of the baby. I have gone through so many emotions. I wanted a boy so he could share a room with Joey, be his best friend, talk about things throughout their life that only they would feel comfortable sharing. But I felt like I was cheating on Eli. It hurt to think about having a boy. So I wanted a girl. She could be Joey’s best friend, she would be sensitive and kind to Joey, help him understand the ladies. Finally, it didn’t matter anymore. God knew what would be best for our family, what we needed, what our future held. I knew I would be happy no matter what.

When I arrived for the ultrasound, the technician was a little worried that it might be too soon to tell. She hoped we would but if not, we would try again the next week. So I lay there looking at the screen, nervous and hopeful.

And this little baby turned its rear towards us and spread its legs for all to see that it was a…..girl!

Joey is going to have a baby sister! I can’t believe it! I am so joyful about this! She is due May 25th but we will most likely do a repeat C-section a week before that. My obstetrician is taking many precautions with me. I am not lifting anything over 20 pounds. Joey is thankfully around 15 pounds. I had a cerclage placed a couple weeks ago. A cerclage is a stitch closing my cervix to avoid any early dilating. Because I never lost the weight from the twins and then turned around and got pregnant so quickly, I am a huge chubby girl now but oh well. It is what it is. I don’t go out much thankfully because Joey is homebound, so I don’t have to worry too much about impressing people. I will worry about my weight later on I guess because I obviously had to get off Weight Watchers (which I was only on for 2 weeks) once I found out. Apparently, it’s a bad thing to diet when you’re pregnant. I still have a lot of worries, anger, sadness, guilt about so many things…but I finally found some joy.

And most importantly I realized something. God is listening to me. He never stopped. He is very patient and loving towards me. I sometimes wonder why. But I am so very grateful. And so very excited that we have a baby girl on her way in 5 months!

Saturday, November 14, 2009

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's titled "Baby Joey Laughs".

Monday, November 2, 2009

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 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!

Saturday, October 10, 2009

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.

Friday, October 2, 2009


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!)

Mommy Loves Joey

Mommy Loves Joey