|I will never forget that moment. Anthony was being prepped for surgery and Doctor DiLuna came in to talk to us one last time to make sure we understood everything that was about to happen. He had someone alongside him who was pushing a computer. He asked if we wanted to see the imaging of the tumor. I instantly felt nauseous and angry. ABSOLUTELY NOT! I did NOT want to see this demon that was inside my son’s head and causing my family to be in this situation at this current time. So NO! I do NOT want to see the tumor. But Rob did. It’s the strength he carries when it comes to the medical situations that I wish so badly I could have…especially for Anthony.|
|I understand why Rob wanted to see, but I couldn’t. At least I couldn’t see while it was still in his head. Because my thoughts instantly went to what if this thing I’m about to look at is about to kill my son. For that reason alone, I just couldn’t do it. As Doctor DiLuna walked away, a million emotions ran through my head. I looked at Rob and said do you think I should have looked at it. He simply shook his head and said not if you don’t feel you want to. And there is was. The mix of emotions we had dealt with on this journey that left me feeling so troubled. I want to but I don’t want to. I should but I can’t. I need to but I’m scared.|
|Nine long hours later, Anthony emerged from the surgical unit with a swollen face and head. Although his head looked so much larger than the last time I saw my son, it was so much lighter without this tumor. The size of a small orange. For a little man like our Anthony, that’s a big pill to swallow. My son was living with a tumor that was the size of an orange. It was causing him incredible headaches. He was such a happy baby but in loud environments he cried so hard he would hold his breath. He vomited for days before doctors could diagnose him and even then they were WRONG.|
|It wasn’t until the veins were bulging in his forehead and his eyes went crossed from the pressure that we were able to figure out there was a real problem. And there he was. My precious little smiling son now crying with needles hanging from his little arms and an incision in the top of his head that would drain the excess spinal fluid. The crying would stop only because a ventilator would breath for him while he was fully sedated to undergo a more intense MRI and see the problem that we would fix the following day. My dad, the strongest man I have ever known, could barely stand at the sight of him. My stepchildren weeped at his bedside, I’m sure thinking they were coming to say goodbye to their brother. My mother standing strong as she always does…the rock in my madness. Rob’s cousins and aunts running to our side to hold me up and encourage me to keep it together. When I say this whole experience took an Army, it’s not an exaggeration.|
|So you wonder why this month of May is so important to me…why brain tumor awareness means so much. Despite popular belief, from a past filled with people who will never understand, it is not about standing on a soap box and feeling sorry for us. The strangest part of all of this is that I don’t feel sorry for any of us…not even my son. I feel strong because of this. I feel like this journey has brought us all so much closer, surrounded our son with so much love, filled our lives with incredible people, and humbled us beyond belief. But I do go back to that time. The time where the doctor looked in our eyes and said ten years ago there was no cure for your son’s illness. The time where the doctor looked in our eyes and said five years ago we had a cure but it still had its kinks. And when he looked in our eyes and said now we can do this surgery pretty successfully, however, your son’s tumor is resting against an artery. We need to cut off the blood supply to that artery for me to be able to remove the tumor. It really is a 50/50 shot.|
|Rob and I fought at that moment. We fought about who would sign the paper that would allow that surgery. We worried that the burden of responsibility should something go wrong would fall on that person who put the pen to the paper. I signed. He signed the paper for the tumor resection. It was a 50/50 deal from his parents. Anthony had a 50/50 shot and we all made it. Thank GOD!|
|So to the people who love me. To the people who love my husband. To the people who love my son. This month is so important to us. Without raising awareness, I would have lost my precious son that Rob and I worked so hard to bring into this world. As he gets older he makes me more and more aware of how blessed I am to have him. I have, since that day, looked at the image of his tumor. I’m not going to lie about it and act like I’m this incredibly strong woman. The first time I saw it…I couldn’t breath. It took my breath away. But now I look at this image with appreciation. I’m sure it sounds crazy to you. But I appreciate our struggle. Through it, I have found my greatest heroes, I have accomplished things I never thought I could, I have learned so much about love and life, and I have formed myself into a strong and loving woman.
My son was fighting for his life. I didn’t think he would make it. I couldn’t look at his tumor, but that tumor became the image at the front line of our battle. I know you might feel I’m on a soap box for my son’s illness, but what you will never understand is that it is far beyond that and far beyond your small minded way of thinking. I will continually work to find a cure for pediatric brain tumors. I will do this similar to the way that other have done before me that allowed my son to be alive. I have seen way to many precious souls die because of this terrible disease. I won’t take our journey lightly, Anthony WILL make a difference in the life of other brain tumor fighters.
And for those below us who like to justify our greatness as being on a soap box, I will tell you this. Soap box or not, we are making a difference. Spend as much time making an effort as you do talking shit and you will see how wonderful this world can be. God Bless!
Dear adorable gentleman standing next to me in the store today,
I am sorry that I so rudely stared at you for about five minutes straight while you were trying to get assistance from an Apple technician with you iPad. I’m sure to you I seemed pretty rude and you were probably wondering why I was being so nosey. I can assure you that I didn’t hear a word of your conversation between yourself and the Apple technician. The thing is that I lost my Dad almost three months ago. When I glanced over at your hand holding your stylus, tapping on your iPad with such grace, a loose fitting wedding band on your finger, you reminded me so much of the Dad that I just lost. The handsome, charming, and gentle man who made my life so darn happy. As I continued to study your mannerisms, your striking resemblance to my father intrigued me and I simply could not physical draw my eyes away from you.
I watched you smile caringly at the technician who was doing his best to assist you. I couldn’t hear what you said, but I’m pretty sure you were paying him quick little compliments like my Dad would have done. You even looked at me and smiled. That was the exact reason I couldn’t stop staring at you. Because if my Dad were sitting there with some younger woman staring at him, he would never judge her, he would simply smile. He might even ask for a hug. I watched you finish up your business and walk away and everything in me wanted to run after you. I wanted to chase you to hold onto this feeling of my father in the flesh. But I knew that wasn’t a realistic option so I watched you walk away. As you walked away, you brought me back to that day.
My mom and I sat with my Dad in a hospital room as he was dying. He had spent way too many days in that hospital to begin with, but unfortunately it was our only choice. There were about five days that he spent “actively dying.” Five whole days where we didn’t know if each moment would be his last, if we said all we needed to say, if we did all we needed to do, if he had all he needed to have. Friday afternoon they told us he wouldn’t make it through the night. Just as he would have liked it, the hospital waiting room filled with family and friends. We took turns spending time with him in ICU and each said what we thought would be our final good-byes.
As great as they were, those nurses didn’t know my Dad. Mike Dalton would do it his way, and he would only go to the other side when he was good and ready and when he decided. For five grueling days I watched him fight the inevitable. Through lots of tears, questions, anger, desperation, and of course a million laughs, those five days were our what seemed to be a long, drawn out goodbye. Now I realize it was not long enough. I remember telling him so many times that it was okay for him to go. That I would be okay. That I want him to be at peace. That it was time. The truth is that I lied. I told him what I thought he needed to hear at that time. I didn’t mean it. I didn’t mean one word. And if I have one regret in my relationship with my father it is that I told him I would be okay without him. Looking back, I never wanted him to die thinking that my life as I knew it could exist without him. The truth is that it can’t. And it doesn’t.
As I watched him take his last breath, I immediately wished I could pull each one of those words back into my mouth. Because since that last breath, not one ounce of me has been okay. Just as we watched the fading pulse in his neck as he held on to the last possible second, a large part of who I am faded away as well. We were holding hands when my Dad died. I knew the exact second when his body gave up and he ended his battle with cancer because I felt him let go of my hand. That was the only time in my life I felt my Dad let go of me. Whether it was a hug, a kiss, a phone call, holding hands, or a goodbye, my Dad ALWAYS waited for me to let go first. That moment of feeling him let go with live in my memory forever. That moment is when I knew I had just not only lost my father, but my best friend (the fortunate yet unfortunate part of our relationship).
So to the man who smiled at me when I was so rudely starting at you in the store today, I just want to say thank you. Thank you for being kind in such a cruel world. I wasn’t staring at you because I was being rude, I was staring at you because you gave me a feeling I hadn’t felt in almost three months. You reminded me of my Dad in the flesh and gave me hope that he very well may still be here. While I may have been making you uncomfortable, you made me feel at ease. And you know what, that’s just what my Dad would have done for some strange girl staring at him.
The girl who misses her Daddy
I find it interesting that I am actually able to sit down to write tonight. Yesterday and today have been pretty surreal. I find my mind drifting and my thoughts all jumbled into one huge mess in my head. Where do I begin? Obviously good-byes are always hard, but, if you are lucky enough, you have planned your next face to face and have something to look forward to. This is not the case at the current moment for us. So to say that I catch myself finding it hard to breath is an understatement.
As I said, Valerii came to us by chance. We chose Zhenya. The difference in those two personalities is something you could never imagine. I chose Zhenya because of the twinkle in his eye, the mischief in his smile, the freckles on his nose, and the beautiful red hair he has. What lay beneath the surface of his exterior is something I don’t think I was ever prepared for or will ever completely wrap my brain around, but I don’t regret him coming here for one minute. Valerii is someone who snuck into our home and completely stole our hearts. I will never ever believe this was anything short of fate. Whether it was God or destiny, all I know is that that boy was meant to be here. And he will never leave my heart for one second for the rest of my life.
As we drove them to the airport, I couldn’t hold back my tears. I am usually pretty strong, but my heart was melting and aching at the same moment. Melting while looking at the cool new hair cuts Valerii and Zhenya were sporting and aching that this was goodbye. We tried to explain to Valerii that he was going back to the Ukraine but it just seemed like he wouldn’t accept what we were saying. We approached the airport and he started pointing at the planes yelling Sasha! Sasha! I suddenly realized that in his mind, we were pulling into Newark Airport to pick up his sister so we could all live happily ever after. I’m sorry to say that this was the farthest from the truth.
As we waited for his group to come through from their connecting flight, I told him that he would be getting on a plane to go back to the Ukraine. “You will be leaving with me?” I swallowed the lump in my throat as I answered no. “You will come tomorrow?” The tears dripped down my cheek as I again had to say no. “I will never see you? You will never come?” I didn’t lie when I explained that I would do everything in my power to see him again, and I will stand by that until the day I die. He simply said to me “I will not go.” I think he believed in his heart that Rob wouldn’t allow this to happen. The relationship the two of them had developed in the last two weeks of his stay is something I will forever admire my husband for.
I never expected Rob to open his heart to these boys the way he did. The patience he displayed, his ability to get through to them on a different level than I sometimes could, his playfulness, his genuine love for them, his compassion to their needs, and how he threw all that he “was” out the door to change his life for them is something that leaves me feeling indebted to him. I’m happy. I’m happy that Zhenya and Valerii, for the first time, knew the love of a father. They knew that “Papa is good.” But at the same time, I knew that Valerii’s separation from Rob would crush him. Equally crushing would be his departure from Anthony. Not as if it surprised me, but Anthony’s resilience through the tough times, his desire to help these boys, and the love he showed them despite the circumstances left me feeling proud of my son once again. Through the broken toys, the bumps and bruises, the need to suddenly share his Mom and Dad, Anthony continued to be his loving and happy self. While his relationship with Zhenya was a tumultuous roller coaster, him and Valerii became brothers. They would laugh together, kiss each other goodnight, and look out for one another day after day. He still walks through the house yelling “Larrrrrrry??????” (The nickname Valerii gained as a result of Anthony’s limited language at this moment 🙂 )
I hugged Valerii tight and we held on for a while near the gates. I pulled his face away from me, kissed him and said “I love you. Be a good boy.” NO MAMA! NO! I couldn’t stop crying. I told him to go hug his Dad and he did. In usual Anthony fashion, my son came over to comfort him. He hugged his head, kissed his forehead, wiped his tears, grabbed his face and kissed his cheek saying “K, Larry?” When it was his final moment with us, Valerii wouldn’t go. He had to be pulled away from us which hurt so much more. There is no feeling of pain I have ever experienced like this moment. Our son was diagnosed with a brain tumor and it didn’t hurt that bad. After thinking about it I realize that this is because I knew Anthony would be ok. I’m not with Valerii to know the same for him.
Zhenya is an amazing little boy in so many ways, but he really tested us. His issues were far beyond the realm of my ability to provide him with what he needed. Although this is the case, I can confidently say that I tried my hardest. And I do think that, for him, my hardest was good enough to get us all through this. I saw great changes in him while he was here, but the minute we got to the airport and he returned to the familiar I saw all that leave him. He gave us a simple goodbye and was on his way. Zhenya is inquisitive and curious, he is silly and tenacious, he is playful and energetic. I always loved the way he puckered his lips to me when he had done something wrong. He knew my weaknesses and he played to them and for that I can say he is so smart. If I could take all the pain of his past, the scars of what came before us, the trauma that has left him broken, I would jump through hoops to do that. But I can’t. And for that reason I must only say I will continue to love him with all my heart and to pray for his well being. I can hope that he felt my love, that it will change him in some way, that he knows that he is so deserving of what I offered him these last three weeks and so much more. He will always be my little mischievous red headed Z and I will always be his Mama. I’ll miss his affection, his needs, and his laugh. I love that boy.
Throughout our constant need to provide Zhenya with a watchful eye and lots and lots of attention, Valerii was emerging as a perfect fit for our family. He is so smart. He picked up on many English words right away. He is meticulous, neat, and organized. In many ways, he reminds me of Rob. He enjoys being clean, putting on his cologne, dressing up, wearing a watch. Rob became his role model and he copied his every move. His love of music, Dunkin Donuts, and Starbucks makes me laugh when Rob says “he is YOUR son!” He is artistic and creative. He is thoughtful and helpful. He is kind. He is protective, strong, and steadfast. He is so, so loyal. And much to my surprise, Valerii is loving. In a world where he doesn’t no much of what we do, he is a devoted, inspiring, and loving soul. I honestly never expected it from him, but he blew me away. He grabbed a huge part of my heart, packed it in his little green backpack, and took it right off to the Ukraine with him without looking back. He needed that to get him through, but I am confident he will bring it back when I see him again. He will care for it as if it is worth a million dollars.
To the two boys who instantly became our sons. This home is so void without you. I thought I was missing peace and quiet, but I have realized I don’t miss it at all. I miss you! Each day will be a day of wondering, of worrying, but of hoping that I will see you soon. You have taught me so much more than I could have ever taught you. You have given me so much more than I have to give. You have loved me as much as I love you, and that has been one of the greatest gifts I have ever received.Я люблю и скучаю по тебе мои сладкие мальчики! Don’t worry, somehow, someway, some day, we’re coming for you. And we won’t stop until we fulfill our promise.
It’s hard for me to even fathom how this experience has shattered my heart. I don’t know what I expected going into it, but I think the excitement of being able to help these two boys over shadowed the idea of how heart breaking this journey could have been. The harsh reality of the pain that goes along with this situation is finally setting in. I’ve been through a lot in my life, but tonight is ranks pretty high on shittiest moment of my life.
I just put in their final load of laundry, gathered their suitcases and backpacks, and sat down to make them a photo book to take with them when they go. All of this, as I’m sure you can imagine, has left me with a lump in my throat, tears in my eyes, and an aching pain in my chest that can’t imagine how I will ever get over the void that leaving these two boys will leave in my heart and my life.
Every single night, I smother Zhenya and Valerii with hugs and kisses before they go to bed. They each climb into their beds and wait for me to come cover them up, tell them I love them, and say good night. I come downstairs to try to make sense of the huge mess I’m left with after dinner, baths, and crazy last minute play sessions that seem to get all their energy. When it’s time for me to go to bed, I sneak into their bedroom and give them one last kiss before I head off to sleep. Some nights, I have to do acrobats just to get to Zhenya because he sleeps so wild. Some nights, I know Valerii is awake and pretending to be asleep because I see him smile when I kiss him cheek. But every night so far, I have made sure that I don’t miss that opportunity to give them one last kiss goodnight.
Tonight weighed heavy on my heart as I squeezed them extra tight knowing that this would be the last goodnight kiss I would be giving these two boys who have become my sons. Valerii squeezed me extra tight tonight, not because he knew it was his last night but because they both had an exceptionally good day. I couldn’t hold back the tears as I held on as tight as I could. Both boys saw me crying and looked to me as if they had never seen someone they truly love be upset.
Zhenya climbed out of bed and over to Valerii and I and we sat there hugging each other for a while. As if I wasn’t enough of a mess, they both wiped tears from my cheeks and said OK Momma? I lied and told them that these were happy tears because I love them so much. Zhenya patted my head and hopped back into his bed. Valerii hugged me one more time just to make sure I was ok. I wish somehow they knew how they have completely changed my life. I wish somehow they knew that what I thought was going to be an opportunity for me to provide them with the best experience of their life has actually turned into one of the most amazing journeys I have ever been on. I wish somehow they knew that they gave me more than I could ever give them. I wish somehow they knew that this experience, through them, beside them, and now without them will be something I think about for the rest of my life. I wish somehow they knew how deep my love runs for them and that I would do anything in my power to keep them if I could.
Tonight I gave these boys one of their last goodnight kisses. Tomorrow I will kiss them goodbye. There won’t be a moment in my life that I don’t think about them, wonder what they are doing, hope that they become successful, loved, amazing adults, miss them, and love them with every ounce of my being. I can’t imagine what tomorrow will feel like knowing how hard tonight has become. But there is no doubt in my mind that I will do everything in my power to make something happen for these boys. For now, I hope they sleep with sweet dreams not realizing what tomorrow will bring, in the house that has become their home, knowing that their Mom will soon be up to give them a goodnight kiss just like she has done every night. Sleep tight my sweet boys. Mom loves you so very much.
Today was a roller coaster of events ranging from destructive moments to loving breakthroughs. We started the morning with Zhenya in rare form-breaking blinds, picture frames, hitting me and my Mom, throwing himself all over the house-and I just wasn’t sure how I would make it until the time they went to bed. With some extra efforts, Zhenya turned the corner and we were able to enjoy the day at the aquarium followed by a Hibachi dinner where we celebrated their birthdays.
Unfortunately, as Zhenya engages in bad behaviors Valerii quietly makes amazing strides in his life here with us. My Dad insisted on buying him a 100 piece activity set for Christmas. (Yes all you who know him know he just did it to drive me crazy) What he didn’t realize when he bought it was that Valerii thrives in his artistic abilities. We finally gave him the gift since my Dad can’t be here and right away he took out a piece of paper and started drawing. He drew the most intricate and thoughtful piece of art and lovingly signed it “To:Dedushka Love, Valerii.” We plan on bringing it to him at the nursing home tomorrow so he can put it up in his room.
Zhenya’s bad behaviors began again when it was time for bed. I tend to have a lot of patience when it comes to Zhenya because I know that his impulsiveness is not something he can help and my heart just aches for him. As always, Valerii agreed to go to bed to help Zhenya fall asleep easier. As I came down the stairs after tucking them in with goodnight kisses and I love you, there laid a subtle reminder that this whole crazy, love packed, ready to pull my hair out experience is quickly coming to an end.
One more night. I came to the bottom of the stairs and looked at the two pairs of sneakers that seemed to jump out and grab me as if they were staring at me as a reminder. Zhenya and Valerii picked out those sneakers when they first got here. They were much more comfortable than the heavy boots they came in that didn’t quite fit. Zhenya picked his Adidas because they were soccer shoes. Valerii picked his because they had flashlights on them. He would even stop me going out the door at night, hold my hand, and turn on his lights to make sure I was walking safely in the dark. Tonight those shoes pretty much kicked me in the face. They reminded me of all I’m going to miss.
The chaos. The constant running around. The messy house. The huge piles of laundry. The loads of garbage that is scattered throughout my car. The marks and bruises I have. The dings in my walls. The broken toys that lay throughout the house. I’ll miss all of these because of what has gone along with them. The smiles. The long hugs. The fact that my heart has now tripled in size. The oohs and ahhs of new experiences. The excitement of meeting new people. The laughs. The blaring of music throughout the house as the cutest efforts to sing in English are accompanied by a strong Russian accent. The kisses and the love. The sound of footsteps pounding around my house as all three boys run and play and laugh and fight together. And those two pairs of shoes that Valerii meticulously places at the bottom of the stairs every time he knows he is home for the night.
I will miss these boys with every ounce of my being. I can’t imagine what life is going to be like when they leave because part of me can’t remember what it was like before they came. One more night and they will be flying far far away from their safe home filled with so much love for them here in America. One more night and 2/3 of my heart will be gone forever. One more night and everything changes for everyone. One more night. I have no more words for what I’m feeling tonight except that I’m going to miss those shoes.
It’s funny how God works. Yesterday was an excruciatingly painful day for me. I work so hard in many aspects of my life. Certain circumstances that occurred in this past week have made me feel unappreciated, disrespected, and as if I was being treated unfairly. It’s times like these that the major things in my life-my sick father, the stresses of the emotions these boys have brought into our lives, my constant desire to be the perfect mother to Anthony-come to a head and leave me feeling down. I work so hard to keep my head up…to stay positive…to be the better person.
At the end of the day, I’m human. I hurt too. There are days that I look at myself and only two words come to mind…EPIC FAIL. Should I be a better Mom to my son? Should I find a way to make more time for my parents? What could I do to be a better wife? Am I working hard enough to spread awareness to Anthony’s Army? Am I giving these two boys all that I possible can in the three short weeks that they are with me?
It’s sad, but I’m sure everyone experiences this kind of cruelty in their life. When someone who should be supportive of you feels the need to drive you to the ground, it rocks your world a little bit. When you work your ass off and don’t get an ounce of respect, it can make the happiest person feel depressed. When you have given so much of yourself and someone just expects so much more. What happens when you have nothing more to give?
I guess in many cases you retreat. You give up. You throw in the towel. But my life has given me so much strength that when I feel that way, something happens, someone comes along, the winds blow a different way. Instead of wanting to give up, I feel renewed. I find a second wind. I suddenly have the energy to do all I was doing before I felt down in the dumps and so much more.
That happened to me last night. I had a situation that dragged me pretty far down. I started to question myself. I wondered what’s the point. I was ready to just give up. A co-worker who I admire and respect told me to keep my head up. Although I responded that I always do, it seemed a little harder this time around. Then I received a message. The message was from a stranger.
“I don’t know you but have seen several of your posts through mutual friends that we have. I have been so in awe of all that you have endured with your son and how you have kept such a positive attitude and continue to be so charitable to others…I just felt compelled to write you to say thank you for being such an inspiration to others and showing us that good people still exist.” This summary of the key points of this message that changed my attitude last night is proof to me of God working in miraculous ways.
I needed that message at that exact time. It renewed my strength and drive to continue to be myself even if others want to bring me down. It gave me a second wind. Today I had more energy than I have had in a while. The boys and I had a blast at the park, went to lunch, and visited the Peabody Museum. We ended the night with a visit to my father. I’m headed up to bed with my son and husband. I’ll lay my head on the pillow tonight with a smile on my face and thoughts in my head for how I can make tomorrow an even better day.
So to the woman who sent me that message. I’m glad I’m able to inspire others. But I want to take the time to thank you for giving me what I needed at a time I wasn’t feeling so great about myself. Last night, you inspired me. And for that I’m so thankful. Goodnight all.
I grew up in a family where the words I love you echoed freely throughout my home multiple times a day. In my childhood, we never left the house or hung up the phone without saying I love you. It was just our thing. In my adult life, that same habit has carried over into my marriage and now my relationship with my son. I probably tell Anthony about 3,567 times a day that I love him. I say it until it absolutely annoys him! But I say it so much because I sincerely mean it from the bottom of my heart.
I have been telling these boys I love them from the first night they slept in our home. They have always repeated it back to me, but after a few days Rob told me to put it in the translator so they actually know what we were saying back and forth. I put it into the translator and Valerii looked at me with a blank look. I translated that saying from Russian to English and it translated correctly. So I took to one of our translators to have them utter these simple words to the boys in their language so they could understand. I will never forget that blank look on Valerii’s face when I knew he was understanding these words but not comprehending them.
I have continued to tell them I love you every single day, multiple times a day. I tell them because I mean it. I tell them more and more because my feelings of love for them continue to multiply. Valerii told me I love you the other day at a completely appropriate time. He also yelled to Anthony “I love you so much!” when we dropped him off at daycare.
I took to the translator again. I asked Valerii if he knew we loved him. He said yes. I asked him if he loved us too. He said yes. I asked him if he knew what love was. He smiled and said yes. I asked him what he thinks love is. He answered “Mama, Papa, and Anthony.” I couldn’t help but cry. If nothing else, we have taught these beautiful children exactly what love is. Now I know in my heart that when I say I love you, they know what it means. When I say I love you, they know I say it because I sincerely mean it from the bottom of my heart.