Last Christmas was Max's 1st Christmas. We had so many visitors and hundreds of Christmas gifts. My mom and siblings brought their Christmas to the Ronald Mcdonald home, and we had Christmas there so we could all be with Max. His crib and his room was completely decked out in new toys, new blankeys, pictures and all! He had such a great first Christmas and managed to stay awake for so much of the day! All of our family came up, everyone adjusted their plans to be with our bubba! We are so thankful to have had such awesome family and friends to be with us while our little man was struggling to stay alive. Not one of us would have thought that he would be gone just 3 weeks after Christmas...
On December 27th, 2010
We had a big meeting with some of the top specialists in the world that had been working with Max and studying his body since we arrived at Hope Children's Hospital in Oak Lawn. They sat down, and slowly explained to us in a long drawn out process, that our son was going to die, and that it could happen in a few years, or a few months, and that he had a 30% chance of living to be 6 years old. I remember how devastated we were. Ron and his mom were in shock, and me and my mom just couldn't stop balling. I couldn't believe it. I was so sick I wanted to throw up I just could not handle it. In my head, I just told my self I would kill myself too. We thought we would at least get a few more months and years with him, and that we would do everything with him in that short time. We would go on a vacation and just do everything imaginable with our baby. We didn't think his life would end in a few weeks. We were told that we would prepare to get him healthy enough to take him home and have home hospice care and a 24 hour nurse. We thought that was the worst of it. We didn't think that he would not even be able to come off the ventilator. He had been working SO hard for so long. His poor little heart just couldn't do it. I am so incredibly proud of him for making it and living as long as he did. He was always so happy and everyone could just tell how special he was. Even before we knew he was going to die, he was different, he was so special, and gave you a special feeling.
Anyway, I don't remember much about this day. I remember the pain, and how devastated and sick I was from that moment on. I would take a nap in an upright position in the chair next to my baby's crib, and I would wake up and just scream! When I slept, I didn't have to be in the real world where my son was dying. I felt so horrible for sleeping so much after that news. I just couldn't help it. I just remember that part I hated was waking up to my reality, and realizing what was real all over again and just random moments of overwhelming tears, fear and devastation.
So after this news, we decided that we would prepare Max for an open heart surgery that would temporarily relieve the pressure in his heart. They tried to tell me that he may not survive this surgery, that he had a 10% chance of survival, but it wouldn't get through to me. In my mind, I couldnt handle any other way, and I was only thinking about myself, my pain without my baby. I did know it would be so painful for him, but it was just too painful to even think about letting him go with out trying this surgery. It was painful for everyone. There was no solution. Max became everyone's everything. and we lost him. and the thought of losing him before we lost him, and being told we were going to lose him, was the most devastating, painful feeling in the world. We had no control.
Sometimes it seems like the days leading up to the day we lost him were so much worse, and the news that we were going to lose him. I think that is because we had no preparation. My body had no idea what was about to be dropped on my heart that day of the meeting. I had no numbness. After Max passed away, my body has since, been numb. Sometimes it wears off. I don't take any sort of medication or use any sort of drugs. My body knew that losing my baby would be THE worst pain I would ever experience, and so the days leading up to him passing away, and after he passed away, I had built something. I dont know what it is but it allows me to survive. But I didn't have this when they told me he was going to die. So it was much different and so painful and I felt every bit of it. I am thankful for this numbness. It allows me to have a plastic smile and get through the day, with small moments of joy here and there. Underneath it all, I am the most devastated, broken person. But the numbness allows me to miss my baby in a graceful manner, vs. the howling, screaming moments in the middle of the night that I have when it wears off. Those moments are too needed and I supposed healthy for my grieving, but if I was in that pain all the time, (which I am, but my body takes over) I would be dead too.
Anyway, I am just so thankful for the time that I had with my precious little man. He couldn't have been a better son . He was so perfect. He had so much love to give. He was so different and special. I just love him so much and I am so sad and in so much pain because he had to go. But I also find it incredibly beautiful and amazing that he did what he was meant to do in this life, in such a short time. He brought so much joy in the short time he was here, and he still brings me joy. I just love this little boy so much and wish I could hold him again. My heart hurts, my arms hurt, my chest literally hurts. I want him here so bad. I just want to hold him. I just want him to be here and healthy but I know that I will have this one day. I am just trying to remember that this life doesn't last forever, but there is another one after this that does, and I will never have to feel this pain again. I can't wait to be with you again bubba! I love you! Merry Christmas sweetie! You are so loved!
On December 27th, 2010
We had a big meeting with some of the top specialists in the world that had been working with Max and studying his body since we arrived at Hope Children's Hospital in Oak Lawn. They sat down, and slowly explained to us in a long drawn out process, that our son was going to die, and that it could happen in a few years, or a few months, and that he had a 30% chance of living to be 6 years old. I remember how devastated we were. Ron and his mom were in shock, and me and my mom just couldn't stop balling. I couldn't believe it. I was so sick I wanted to throw up I just could not handle it. In my head, I just told my self I would kill myself too. We thought we would at least get a few more months and years with him, and that we would do everything with him in that short time. We would go on a vacation and just do everything imaginable with our baby. We didn't think his life would end in a few weeks. We were told that we would prepare to get him healthy enough to take him home and have home hospice care and a 24 hour nurse. We thought that was the worst of it. We didn't think that he would not even be able to come off the ventilator. He had been working SO hard for so long. His poor little heart just couldn't do it. I am so incredibly proud of him for making it and living as long as he did. He was always so happy and everyone could just tell how special he was. Even before we knew he was going to die, he was different, he was so special, and gave you a special feeling.
Anyway, I don't remember much about this day. I remember the pain, and how devastated and sick I was from that moment on. I would take a nap in an upright position in the chair next to my baby's crib, and I would wake up and just scream! When I slept, I didn't have to be in the real world where my son was dying. I felt so horrible for sleeping so much after that news. I just couldn't help it. I just remember that part I hated was waking up to my reality, and realizing what was real all over again and just random moments of overwhelming tears, fear and devastation.
So after this news, we decided that we would prepare Max for an open heart surgery that would temporarily relieve the pressure in his heart. They tried to tell me that he may not survive this surgery, that he had a 10% chance of survival, but it wouldn't get through to me. In my mind, I couldnt handle any other way, and I was only thinking about myself, my pain without my baby. I did know it would be so painful for him, but it was just too painful to even think about letting him go with out trying this surgery. It was painful for everyone. There was no solution. Max became everyone's everything. and we lost him. and the thought of losing him before we lost him, and being told we were going to lose him, was the most devastating, painful feeling in the world. We had no control.
Sometimes it seems like the days leading up to the day we lost him were so much worse, and the news that we were going to lose him. I think that is because we had no preparation. My body had no idea what was about to be dropped on my heart that day of the meeting. I had no numbness. After Max passed away, my body has since, been numb. Sometimes it wears off. I don't take any sort of medication or use any sort of drugs. My body knew that losing my baby would be THE worst pain I would ever experience, and so the days leading up to him passing away, and after he passed away, I had built something. I dont know what it is but it allows me to survive. But I didn't have this when they told me he was going to die. So it was much different and so painful and I felt every bit of it. I am thankful for this numbness. It allows me to have a plastic smile and get through the day, with small moments of joy here and there. Underneath it all, I am the most devastated, broken person. But the numbness allows me to miss my baby in a graceful manner, vs. the howling, screaming moments in the middle of the night that I have when it wears off. Those moments are too needed and I supposed healthy for my grieving, but if I was in that pain all the time, (which I am, but my body takes over) I would be dead too.
Anyway, I am just so thankful for the time that I had with my precious little man. He couldn't have been a better son . He was so perfect. He had so much love to give. He was so different and special. I just love him so much and I am so sad and in so much pain because he had to go. But I also find it incredibly beautiful and amazing that he did what he was meant to do in this life, in such a short time. He brought so much joy in the short time he was here, and he still brings me joy. I just love this little boy so much and wish I could hold him again. My heart hurts, my arms hurt, my chest literally hurts. I want him here so bad. I just want to hold him. I just want him to be here and healthy but I know that I will have this one day. I am just trying to remember that this life doesn't last forever, but there is another one after this that does, and I will never have to feel this pain again. I can't wait to be with you again bubba! I love you! Merry Christmas sweetie! You are so loved!
