I stopped writing. I just ran out of anything new to say. Time keeps moving and nothing has really changed. I still miss my son and am still fighting to give my other son a life he deserves. Have you ever wanted a change, but not sure what it would be? I just need a change...a real vacation, a date, a good laugh? Any of those would do I guess.
I feel like I have failed in so many ways, but oddly, I have managed to succeed in a few others. I have given him a home and I know he loves it here. I love being his person. If that is all I have, that will always be enough. He is all that matters.
Monkey gave me some advice last night that I will carry always. "Mommy, just be brave." So little, but so wise.
Tuesday, May 8, 2012
Friday, December 16, 2011
Sunday, September 18, 2011
Monday, September 5, 2011
Fall
The heat outside finally broke this weekend. Finally, cool air and the freedom to be outside without feeling like you will melt. I spent the day in the gorgeous sunshine working in my yard trying to make something pretty from the ugly weeds. I almost felt alive.
For such a good day, how do I end it weeping from the depths of my soul? The last few weeks, I have felt hopeless at times, but mostly just sad for what seemed like no reason at all. Seems, I would put this together by now, but I think I have just refused to let myself go there. In two weeks, my sweet boys will be 5. Well, Monkey will be 5 and Noah, I guess I believe will always be the same sweet baby he was. It's like the changing of the season stirs up the grief to make it fresh and new.
I find myself aching to hold him. The hole in my heart is torn wide open when I think of him. I was working on making Monkey's birthday invitations, when I came across the videos of the day they were born at my parent's house. I, in almost 5 years, have yet to watch them. I can't. I put one in the camera and dared myself to turn it on. There was my family, full and complete. A mom, a dad, and two wonderful babies. Watching his blue eyes made me feel like I could touch him. I only watched a short time, as it became apparent how much Noah struggled to take each precious breath. I almost feel guilty that I fought so hard to keep him alive and yet so guilty for not keeping him from getting sick that fateful day. It makes no sense.
I have struggled this year to get Monkey's BDay celebration planned. I think somewhere in my mind, I think if I put it off, I won't have to deal with it all. I am so proud of what a strong boy he has become and how much he loves his family, including the brother he really doesn't really know except for in his heart. I try to focus on him and how he sees Noah in the moon and stars. I look and look hoping to see what Monkey sees, but I just see an empty sky...
God, I miss him. I pray he is at peace and can feel my love.
For such a good day, how do I end it weeping from the depths of my soul? The last few weeks, I have felt hopeless at times, but mostly just sad for what seemed like no reason at all. Seems, I would put this together by now, but I think I have just refused to let myself go there. In two weeks, my sweet boys will be 5. Well, Monkey will be 5 and Noah, I guess I believe will always be the same sweet baby he was. It's like the changing of the season stirs up the grief to make it fresh and new.
I find myself aching to hold him. The hole in my heart is torn wide open when I think of him. I was working on making Monkey's birthday invitations, when I came across the videos of the day they were born at my parent's house. I, in almost 5 years, have yet to watch them. I can't. I put one in the camera and dared myself to turn it on. There was my family, full and complete. A mom, a dad, and two wonderful babies. Watching his blue eyes made me feel like I could touch him. I only watched a short time, as it became apparent how much Noah struggled to take each precious breath. I almost feel guilty that I fought so hard to keep him alive and yet so guilty for not keeping him from getting sick that fateful day. It makes no sense.
I have struggled this year to get Monkey's BDay celebration planned. I think somewhere in my mind, I think if I put it off, I won't have to deal with it all. I am so proud of what a strong boy he has become and how much he loves his family, including the brother he really doesn't really know except for in his heart. I try to focus on him and how he sees Noah in the moon and stars. I look and look hoping to see what Monkey sees, but I just see an empty sky...
God, I miss him. I pray he is at peace and can feel my love.
Monday, August 1, 2011
Answers
No more pokies right?
So I took Monkey to a new immunologist last week. Poor kid laid like a champ to get poked 49 times during allergy testing. He barely cried and tried so hard to be brave. I felt his fear and pain. I get trying to put on your game face when you are scared to death. He is awesome.
Today was the day for the more blood work. One vial of blood is all we needed and as usual, he was a trooper. Stuck his arm out there like he was daring her to poke him. That is so my boy.
They are running something called a MLB Pathway test. It checks to see if his complement system is working. Basically, it will show if his body reacts to infection and fights it off. I can tell you without a blood test that his body does none of the above. If we get an answer and it isn't working, I guess I get an answer as to why he is always so sick, but the part that sucks is that there isn't much to about it. Treatment is what we already do. Can anyone say antibiotics? My fear is some day that antibiotics won't work anymore. Then what?
I secretly keep hoping that they would find something that we can treat. Something we can do something about. It's not that I want my child to have something wrong with him, but to have a plan and a way to make him better and keep him well would be something.
Nothing to do now, but wait.
So I took Monkey to a new immunologist last week. Poor kid laid like a champ to get poked 49 times during allergy testing. He barely cried and tried so hard to be brave. I felt his fear and pain. I get trying to put on your game face when you are scared to death. He is awesome.
Today was the day for the more blood work. One vial of blood is all we needed and as usual, he was a trooper. Stuck his arm out there like he was daring her to poke him. That is so my boy.
They are running something called a MLB Pathway test. It checks to see if his complement system is working. Basically, it will show if his body reacts to infection and fights it off. I can tell you without a blood test that his body does none of the above. If we get an answer and it isn't working, I guess I get an answer as to why he is always so sick, but the part that sucks is that there isn't much to about it. Treatment is what we already do. Can anyone say antibiotics? My fear is some day that antibiotics won't work anymore. Then what?
I secretly keep hoping that they would find something that we can treat. Something we can do something about. It's not that I want my child to have something wrong with him, but to have a plan and a way to make him better and keep him well would be something.
Nothing to do now, but wait.
Friday, July 1, 2011
Dreams
Sleep with peaceful dreams...I can't remember the last time I slept well.
I woke this morning dreaming of the last few months of my marriage. I almost can't remember anything good anymore. I wish I could calm the thoughts in my head.
I don't miss him. I despise him. The person he is now is not the person he once was. I don't know him anymore. Yet, after all this time, I can't shake the betrayal and the feeling that 10 years of my life was a lie. How could anyone have ever loved someone and then hurt them so badly? I am not wired that way and still cannot understand it.
Sometimes I think, his pain must have been immense, but then I think about what he did. I think of the terrible things he said to me. Did smashing me to pieces make him feel better? Did destroying every part of our life lift his sadness or did it just give him a distraction? If you looked at him now, he appears to have made it through with no scars. How was it so easy to just reinvent his life with someone else? How did he just walk away from the miracle of our living, breathing baby boy?
I am at a crossroads...I want to just forget and move on. In many ways, I have, but the reminder is always there. The pain is there each time he returns Monkey from his visit and each time I think of her being there with them. How do you let your son be in the presence of someone who was so willing to destroy his family? It is killing me, yet I know there is nothing I can do about it. I have really tried to just go with it and not think about it. I stay busy when Monkey is gone, but eventually I have got to just be alone. I really suck at alone. My thoughts take over and the grief of losing Noah, my marriage, and my family comes back. I will myself to work on something just for me, but I will admit it, I am lonely when Monkey is gone and sometimes I am still lonely when he is here. I miss having someone to have a real conversation with. I miss adult company. I think losing that companionship of your best friend has been the hardest thing to overcome. Nothing quite replaces it.
My best girl friends tried to sign me up for online dating. That seriously may be the most terrifying idea ever. I am not sure how to date or how to be with another man. I am so self conscious of every aspect of myself. I need to lose some weight. I have a serious baby pooch. Will someone else see how ugly that is and be totally grossed out by the stretch marks and loose skin brought on my two 7 lb babies? Will they see how damaged I am by loss or could they maybe see that under my false smile is tenacity and strength? Can they understand what it is to just survive and prepare for the next battle because the rug keeps getting pulled out from under you? I do want to meet someone, but it is so uncomfortable and honestly, I don't think anyone would want or understand this life of mine. I am letting my losses define me and my self worth. Right now, my confidence is still not what I would like. I need to find my voice and worth in the real world before I try to open myself to someone else.
I keep hoping that by working on me, I will feel that I am worthy and that someone would love me. The thing about cheating is that everyone will tell you that it isn't about you, but it is impossible not to compare and wonder why wasn't I good enough? I can't seem to excise his voice from head. I have realized that I don't try new things because he would have made fun of me and I still find myself stuffing those ideas down, hearing his voice in my head. Some days, I tell that voice to fuck off and try whatever it is that I want to. Others, I stuff it down and just go home.
Everyone says I need to let go. Can I ask a stupid question? How the hell do I do it? I have tried and really it's not working.
I am toying with the idea of going back to school and moving. It is a pipe dream and quite frankly moving away is scary as hell. Here is all I know. There is this little part of me who knows that I could really do something that matters. I have learned so much and I know I am not living up to my potential right now. I am collecting a check and there is security in that, but no satisfaction. It takes confidence to make a bold move like that. I am not 20 in more. Is 32 too old to start over and become a student again? I also see moving as an escape from a small town where everyone knows and you know there is always a chance of running into them. If I leave, I escape the hold that has on me. I actually scan parking lots when I go the store, etc to make sure they are not there. I avoid old friends in stores because I can't stand the look. I also want the freedom from every one's judgement. I lost touch with most of my friends back in college and the last few years have driven all but the most loyal away. I imagine I look like a huge failure in their eyes. That sucks. I just want to hold my head high and be okay with what is. Why do I care what they think? Maybe I am just jealous. They stand there with their perfect families and I am so far from perfect.
Moving or not, I need to make a change, but I just don't know what. I have started small and at times even that is exhausting. I joined a church, not so much that I am religious, but more that the people there made me feel better and Monkey loves it. It is going to be our thing. A couple of friends and I joined an exercise class this summer. I feel better going, but I still need to do more. I need something more drastic, but fear keeps holding me back. What I really want is something that fires me up. I want to feel passionate about something. I want to be able to sleep at night because I know I have done my best and I am giving Monkey all I can.
Could someone just tell me what to do?
I woke this morning dreaming of the last few months of my marriage. I almost can't remember anything good anymore. I wish I could calm the thoughts in my head.
I don't miss him. I despise him. The person he is now is not the person he once was. I don't know him anymore. Yet, after all this time, I can't shake the betrayal and the feeling that 10 years of my life was a lie. How could anyone have ever loved someone and then hurt them so badly? I am not wired that way and still cannot understand it.
Sometimes I think, his pain must have been immense, but then I think about what he did. I think of the terrible things he said to me. Did smashing me to pieces make him feel better? Did destroying every part of our life lift his sadness or did it just give him a distraction? If you looked at him now, he appears to have made it through with no scars. How was it so easy to just reinvent his life with someone else? How did he just walk away from the miracle of our living, breathing baby boy?
I am at a crossroads...I want to just forget and move on. In many ways, I have, but the reminder is always there. The pain is there each time he returns Monkey from his visit and each time I think of her being there with them. How do you let your son be in the presence of someone who was so willing to destroy his family? It is killing me, yet I know there is nothing I can do about it. I have really tried to just go with it and not think about it. I stay busy when Monkey is gone, but eventually I have got to just be alone. I really suck at alone. My thoughts take over and the grief of losing Noah, my marriage, and my family comes back. I will myself to work on something just for me, but I will admit it, I am lonely when Monkey is gone and sometimes I am still lonely when he is here. I miss having someone to have a real conversation with. I miss adult company. I think losing that companionship of your best friend has been the hardest thing to overcome. Nothing quite replaces it.
My best girl friends tried to sign me up for online dating. That seriously may be the most terrifying idea ever. I am not sure how to date or how to be with another man. I am so self conscious of every aspect of myself. I need to lose some weight. I have a serious baby pooch. Will someone else see how ugly that is and be totally grossed out by the stretch marks and loose skin brought on my two 7 lb babies? Will they see how damaged I am by loss or could they maybe see that under my false smile is tenacity and strength? Can they understand what it is to just survive and prepare for the next battle because the rug keeps getting pulled out from under you? I do want to meet someone, but it is so uncomfortable and honestly, I don't think anyone would want or understand this life of mine. I am letting my losses define me and my self worth. Right now, my confidence is still not what I would like. I need to find my voice and worth in the real world before I try to open myself to someone else.
I keep hoping that by working on me, I will feel that I am worthy and that someone would love me. The thing about cheating is that everyone will tell you that it isn't about you, but it is impossible not to compare and wonder why wasn't I good enough? I can't seem to excise his voice from head. I have realized that I don't try new things because he would have made fun of me and I still find myself stuffing those ideas down, hearing his voice in my head. Some days, I tell that voice to fuck off and try whatever it is that I want to. Others, I stuff it down and just go home.
Everyone says I need to let go. Can I ask a stupid question? How the hell do I do it? I have tried and really it's not working.
I am toying with the idea of going back to school and moving. It is a pipe dream and quite frankly moving away is scary as hell. Here is all I know. There is this little part of me who knows that I could really do something that matters. I have learned so much and I know I am not living up to my potential right now. I am collecting a check and there is security in that, but no satisfaction. It takes confidence to make a bold move like that. I am not 20 in more. Is 32 too old to start over and become a student again? I also see moving as an escape from a small town where everyone knows and you know there is always a chance of running into them. If I leave, I escape the hold that has on me. I actually scan parking lots when I go the store, etc to make sure they are not there. I avoid old friends in stores because I can't stand the look. I also want the freedom from every one's judgement. I lost touch with most of my friends back in college and the last few years have driven all but the most loyal away. I imagine I look like a huge failure in their eyes. That sucks. I just want to hold my head high and be okay with what is. Why do I care what they think? Maybe I am just jealous. They stand there with their perfect families and I am so far from perfect.
Moving or not, I need to make a change, but I just don't know what. I have started small and at times even that is exhausting. I joined a church, not so much that I am religious, but more that the people there made me feel better and Monkey loves it. It is going to be our thing. A couple of friends and I joined an exercise class this summer. I feel better going, but I still need to do more. I need something more drastic, but fear keeps holding me back. What I really want is something that fires me up. I want to feel passionate about something. I want to be able to sleep at night because I know I have done my best and I am giving Monkey all I can.
Could someone just tell me what to do?
Friday, February 4, 2011
Hospital Round 2
Before....
We are beginning day 3 on the pediatric floor and it is amazing what high doses of antibiotics and steroids can do. We came in with a 104 degree fever, raging sinus infection, and developing pneumonia. I had never seen Monkey fight so hard to breath and become ill so very quickly. It started as a little cough over the weekend and exploded into one of our worst episodes overnight.
Monkey has been a trooper. A CT scan, chest x-rays, and a PICC Line later, he barely even flinched. He either is the bravest kid I know or he just felt so rotten that he didn't even care. Watching them take him away to put in the PICC ripped my heart out. I had really hoped it wouldn't come to this again. It has only been 6 weeks since our last hospital visit and he has been on antibiotics ever since. Ironically, the drugs ran out Monday and we were admitted Tuesday morning.
I am fully convinced more than ever, that his immune system just doesn't work. They are running more labs, but it will be a week or so before we know anything. In another two weeks, we will see the new immunologist and I can only pray that he will continue testing until he finds something.
I am guessing we will stay another 3-4 days and keep the PICC another month. Not exactly as I had hoped, but I will do whatever is needed to make my sweet boy feel better. I am thankful tonight that Monkey is beginning to feel better and at least we seem to be on the path to figuring this all out.
Friday, January 21, 2011
Enough
I'm done. I am just freaking done. I am tired and sick of worrying about how all of this will go. The last few weeks have sucked in ways I can't begin to explain. I just need to purge. It's not pretty, but I just need to empty my mind.
Monkey being sick. Work is so busy I can't think. M welcomed his 2nd living, breathing, healthy child without me. I am alone. I am so scared of being alone forever and more scared of letting someone in to hurt me all over again. I don't think I can live through any of it again.
I haven't been sleeping very well. I can't shut off my mind. It's like I take one step forward only to move back 5 more. Right now it feels like it will never be okay. I love Monkey and am so grateful for him, but I am not happy. I lay in bed crying the other night only to realize that Monkey, who I thought was sleeping soundly, was watching me, patting my back, telling me it is okay. How wrong is that? I feel like I am failing in every area of my life. I am trying so hard to hold it all together, make a living, and be supermom all at once. The pressure of it all is sinking me. I feel like I am going to crack. I try to hold it all together until he is asleep. I even failed at that.
I am so selfish sitting her wallowing in my own pity. I have it better than so many others and yet I can't shut up and just be happy. I just feel so broken. Losing Noah took away any confidence I had and M leaving without even looking back just finished it all off. It is weird because I don't miss him, but I miss the security of having another human being to lean on and just talk to. Now it is my job alone to figure out how to make my son better, to work and be with him at the same time, and show him a better life. I can't do it all alone and I don't even know how or what to ask for help with.
I think I have stumbled on a new grief. What if I never hold another baby in arms? I long for a child, but I long more for a family. I know Monkey and I are a family, but it feels broken and like so much is missing. I don't even know how to meet anyone. I don't know how to let anyone into my fucked up world. I can't even answer the question to how many children I have. That alone is enough to send someone running. The one person who really tried to get to know me has given up I think. I pushed him away and second guessed his intentions until he just got tired of trying. I think of calling him and telling him that maybe we could give it a chance, but I am too scared of rejection and of actually having to follow through.
I am trying to move past being perfect and what my idea of perfect was. I thought a perfect family was two parents and lots of kids. Maybe a mom, a Monkey, and an angel will have to be enough. Maybe that is perfect for us. All I want is to make peace with what is and figure out how move forward. I know I need to be happy in order for Monkey to thrive, but it is just so much harder than I thought. Right now, I just want to be able to relax and enjoy what I have. I want to be able to breathe again.
Monkey being sick. Work is so busy I can't think. M welcomed his 2nd living, breathing, healthy child without me. I am alone. I am so scared of being alone forever and more scared of letting someone in to hurt me all over again. I don't think I can live through any of it again.
I haven't been sleeping very well. I can't shut off my mind. It's like I take one step forward only to move back 5 more. Right now it feels like it will never be okay. I love Monkey and am so grateful for him, but I am not happy. I lay in bed crying the other night only to realize that Monkey, who I thought was sleeping soundly, was watching me, patting my back, telling me it is okay. How wrong is that? I feel like I am failing in every area of my life. I am trying so hard to hold it all together, make a living, and be supermom all at once. The pressure of it all is sinking me. I feel like I am going to crack. I try to hold it all together until he is asleep. I even failed at that.
I am so selfish sitting her wallowing in my own pity. I have it better than so many others and yet I can't shut up and just be happy. I just feel so broken. Losing Noah took away any confidence I had and M leaving without even looking back just finished it all off. It is weird because I don't miss him, but I miss the security of having another human being to lean on and just talk to. Now it is my job alone to figure out how to make my son better, to work and be with him at the same time, and show him a better life. I can't do it all alone and I don't even know how or what to ask for help with.
I think I have stumbled on a new grief. What if I never hold another baby in arms? I long for a child, but I long more for a family. I know Monkey and I are a family, but it feels broken and like so much is missing. I don't even know how to meet anyone. I don't know how to let anyone into my fucked up world. I can't even answer the question to how many children I have. That alone is enough to send someone running. The one person who really tried to get to know me has given up I think. I pushed him away and second guessed his intentions until he just got tired of trying. I think of calling him and telling him that maybe we could give it a chance, but I am too scared of rejection and of actually having to follow through.
I am trying to move past being perfect and what my idea of perfect was. I thought a perfect family was two parents and lots of kids. Maybe a mom, a Monkey, and an angel will have to be enough. Maybe that is perfect for us. All I want is to make peace with what is and figure out how move forward. I know I need to be happy in order for Monkey to thrive, but it is just so much harder than I thought. Right now, I just want to be able to relax and enjoy what I have. I want to be able to breathe again.
Sunday, January 16, 2011
Sick Again
I wish I had more time to write. Purging my thoughts seems to help me focus. When I get it out, I can sleep and shut off the running commentary in my head. To say the least, life is a little overwhelming right now.
Monkey has been sick since before Thanksgiving. It started as a cough and landed us in the hospital the week before Christmas. We treated it as a sinus infection to begin with. We figured it was just another round of the usual. For a week, it bothered me that he didn't seem better even with the antibiotics. My daycare called one day after Monkey's nap and said he just didn't look right. I took him straight to our pediatrician and I knew on the way that we just got us a trip to the local hospital. Sure enough, he had pneumonia in one lung and after three days of steroids and antibiotics, he still had a raging sinus infection. Monkey had a follow up CT last Friday and after a month of antibiotics, he STILL has an infection. When the nurse called with the results, I just cried. I am so frustrated. It is NOT normal to keep an infection after being treated for that long. He is beginning to ooze something, so I guess it is time for the stronger meds the doctor suggested. I will call tomorrow and hope his little tummy can take the meds.
I have been researching immune deficiencies online. There is so much info and Monkey seems to fit the description of a selective immune deficiency. Monkey has an appointment with a new immunologist next month. I hate waiting. He could really get sick in the next month. I am guessing we will keep him on an antibiotic until we go. I know it sounds wrong, but I kind of hope they find something. I am ready for a game plan and some other way to treat him. This is the third winter of this. I am tired of the same routine. We do the test, get the Pneumovax shot, and we wait. Well, we have had two shots and it is still the same. Monkey can't get anymore shots, so it is time to really find out why he can't maintain his antibodies. I am scared to know, but I don't want him to have to be sick all of the time. It broke my heart to watch him lay in the CT machine and not even shed a tear. He was brave and damn it, he shouldn't have to be. He is 4. He should be happy and full of energy, not tired and sick.
Monkey has been sick since before Thanksgiving. It started as a cough and landed us in the hospital the week before Christmas. We treated it as a sinus infection to begin with. We figured it was just another round of the usual. For a week, it bothered me that he didn't seem better even with the antibiotics. My daycare called one day after Monkey's nap and said he just didn't look right. I took him straight to our pediatrician and I knew on the way that we just got us a trip to the local hospital. Sure enough, he had pneumonia in one lung and after three days of steroids and antibiotics, he still had a raging sinus infection. Monkey had a follow up CT last Friday and after a month of antibiotics, he STILL has an infection. When the nurse called with the results, I just cried. I am so frustrated. It is NOT normal to keep an infection after being treated for that long. He is beginning to ooze something, so I guess it is time for the stronger meds the doctor suggested. I will call tomorrow and hope his little tummy can take the meds.
I have been researching immune deficiencies online. There is so much info and Monkey seems to fit the description of a selective immune deficiency. Monkey has an appointment with a new immunologist next month. I hate waiting. He could really get sick in the next month. I am guessing we will keep him on an antibiotic until we go. I know it sounds wrong, but I kind of hope they find something. I am ready for a game plan and some other way to treat him. This is the third winter of this. I am tired of the same routine. We do the test, get the Pneumovax shot, and we wait. Well, we have had two shots and it is still the same. Monkey can't get anymore shots, so it is time to really find out why he can't maintain his antibodies. I am scared to know, but I don't want him to have to be sick all of the time. It broke my heart to watch him lay in the CT machine and not even shed a tear. He was brave and damn it, he shouldn't have to be. He is 4. He should be happy and full of energy, not tired and sick.
Sunday, December 12, 2010
4 Years
I can't think. I can't breathe. I can't do anything.
How has four years passed? I look into his enormous, blue eyes in my favorite photo and wonder if he was ever really here. It all seems like a dream. For 90 days I had it all. Forget the NICU, the feeding tubes, the oxygen, and monitors. He was here and he was perfect. If you had asked me then, I would have said that was the happiest I had ever been in my entire life. I had two beautiful boys and regardless of what problems lay ahead, I loved them with all my heart.
How do you mark the worst day of your life? I took the day off work and had planned on getting a massage, but my regular girl is gone until the new year. Maybe I will schedule with someone else, but I can't explain it to a stranger. I will cry and it won't be pretty. I think I will spend the day with Monkey. Maybe make Christmas cookies and cuddle on the couch in our PJ's. I know I will visit Noah, but it is so empty when I go. It is just a hunk of granite and I don't really feel him there. I feel like I should take flowers and sit at his grave, but it is all so forced and doesn't help. What I want is him.
Noah sent me a present though. When he was in the hospital, I came across the band, Mercy Me. The words would literally drop me to my knees. The music was soothing and hopeful. It made me believe that I would be with him again after he died. It just happens that they are performing nearby. I don't think it is coincidence that it just happens to be on Noah's day. I am going with my two best friends. Maybe Noah knew I needed a way to feel him and they knew I needed someone to hold me up. Just maybe this is it. I am looking forward to going, but I am not sure how I will react hearing those songs again.
I have been thinking about how things have changed since he passed. He has changed every ounce of my being. I don't even know who I was before him. I have healed in many ways, but in others I am just as stuck as I was then. I wish I knew how to lift the weight of my guilt and grief. I wish I could forgive myself and see past my failures. My only job was to protect him and I couldn't. I know there was nothing more for me to do, but my body broke him and it was me who got him sick. Tomorrow would have been his surgery if we had gone through with it. I know now that had we done it, tomorrow would have been his last day and I wouldn't have been able to hold and love him while he passed. I believe God had his hand in that decision.
I look back and am so grateful for those blessed 90 days. For 90 days, I was the luckiest girl in the world. I was happy and whole. I ache for him now. I want to remember how the weight of his tiny body felt, how his hair smelled, and hear his tiny sighs. I pray that he is whole and free in heaven. As Monkey often tells me, we carry him in our hearts.
I love you Noah.
How has four years passed? I look into his enormous, blue eyes in my favorite photo and wonder if he was ever really here. It all seems like a dream. For 90 days I had it all. Forget the NICU, the feeding tubes, the oxygen, and monitors. He was here and he was perfect. If you had asked me then, I would have said that was the happiest I had ever been in my entire life. I had two beautiful boys and regardless of what problems lay ahead, I loved them with all my heart.
How do you mark the worst day of your life? I took the day off work and had planned on getting a massage, but my regular girl is gone until the new year. Maybe I will schedule with someone else, but I can't explain it to a stranger. I will cry and it won't be pretty. I think I will spend the day with Monkey. Maybe make Christmas cookies and cuddle on the couch in our PJ's. I know I will visit Noah, but it is so empty when I go. It is just a hunk of granite and I don't really feel him there. I feel like I should take flowers and sit at his grave, but it is all so forced and doesn't help. What I want is him.
Noah sent me a present though. When he was in the hospital, I came across the band, Mercy Me. The words would literally drop me to my knees. The music was soothing and hopeful. It made me believe that I would be with him again after he died. It just happens that they are performing nearby. I don't think it is coincidence that it just happens to be on Noah's day. I am going with my two best friends. Maybe Noah knew I needed a way to feel him and they knew I needed someone to hold me up. Just maybe this is it. I am looking forward to going, but I am not sure how I will react hearing those songs again.
I have been thinking about how things have changed since he passed. He has changed every ounce of my being. I don't even know who I was before him. I have healed in many ways, but in others I am just as stuck as I was then. I wish I knew how to lift the weight of my guilt and grief. I wish I could forgive myself and see past my failures. My only job was to protect him and I couldn't. I know there was nothing more for me to do, but my body broke him and it was me who got him sick. Tomorrow would have been his surgery if we had gone through with it. I know now that had we done it, tomorrow would have been his last day and I wouldn't have been able to hold and love him while he passed. I believe God had his hand in that decision.
I look back and am so grateful for those blessed 90 days. For 90 days, I was the luckiest girl in the world. I was happy and whole. I ache for him now. I want to remember how the weight of his tiny body felt, how his hair smelled, and hear his tiny sighs. I pray that he is whole and free in heaven. As Monkey often tells me, we carry him in our hearts.
I love you Noah.
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