Just got back from the cemetary to pay Colton a visit on Christmas Eve day. I took him new flowers and his Daddy wrapped him up a little gift which we opened. We played some Christmas music and tried to make it a happy time, rather than sad. I have realized this year that it really feels almost as if its our first Christmas without Colton because last year was such a blur. I'm sure the pain isn't quite as great but the reality is much stronger.
We made it through Colton's Angel Day just fine. The day itself was filled with activities and love. I am surrounded by family, friends and support who continually allow me to share Colton and honor him with others. That means a lot. After his Angel Day I did feel a sort of relief. A sense that a last milestone had been passed. A lightning of the load that meant I had fully lived through every memory and emotion at least once. I know passing the year mark won't miraculously make it better, but I'm still standing. I might be wounded but I'm still here. I feel like I can begin to look forward and find my new path, but with a little buddy always with me. Its time for me to find a new partner and try to build a new family. Its going to be a scary journey, but Colton will be by my side, cheering me on. I know I can do this because I've made it through a year I could have never imagined.
I never wanted to have to visit my son on Christmas anywhere but in my own home, but as I stared at his picture hanging on his little tree, I do feel blessed and I can smile. It is moments like these that I know mean I'm moving forward. That on the eve of Christmas I can look at his photo and smile. I still miss him like crazy and I've learned to accept that missing him doesn't mean that I haven't made progress.
I will light a candle tonight for him and sit in front of my tree, playing Christmas music and picturing him ripping tissue and wrapping paper. It is the Christmas I can have with him in my thoughts.
I hope you all have a peaceful holiday and give a little wink to the stars tonight for little Colton. Merry Christmas.
The NICU adventures of Colton Chilla as he grew and the journey of his mommy after he became an angel.
Thursday, December 24, 2009
Monday, December 14, 2009
Hours with Colton
I've been very busy today, filled with work and to-do's but the back of my brain is filled with the memories of what today last year was like. This was the last "full day" we had with Colton. It was pretty amazing.
Colton at this point was pretty much drugged to the max in order to keep the siezures under control. In fact, they had to give him a paralytic so he would tolerate being moved from his isolette to kangaroo. It was not an easy process by any means, but the nurses and RT's would do anything for us. Nobody other than myself and Donny had held him the entire four months. We always thought we had time later. Well, we wanted his grandmas to get to hold him. So on this day, Colton shared special moments with both his grandmas and his aunt. They got to hold him, smell him and feel his warmth. It was the epitomy of bittersweet. I was so proud to see him held by my mom but it never left me that this was the only time I would ever see that.
Colton got shared that day with his family and I feel thankful that he had that time with them. After everyone left for the day, Colton and I got some time alone. Just me and him. It was the first time in days that we had totally alone time. We rocked and I leaned my cheek on his head, closed my eyes and held him tight. I had his flat teddy with us and a blanket and it was so cozy and warm. Throughout Colton's life I always felt so at peace when I held him and rocked. No matter what else was going on, if he was having a bad day or I was, it all melted away when we kangarooed. I haven't had that feeling since and I so miss it. Just hours of peace and love and warmth. I felt like I was protecting him, that my arms wrapped around him would keep out all the bad stuff. I felt like he was cozy and warm and could hear my heart beat like when he was still inside.
As we rocked, even knowing that it was one of the last times I would ever do this with him, I still felt that sense of peace. All was calm, all was right. As we rocked something made me open my eyes and look down at his face. There was my little Colton, drugged up to the max, looking up with his eyes wide open. We hadn't seen his eyes open in days. When he looked at me I immediately felt this sense of "it's ok mommy, I'm ready to go." I remember saying, "hi baby! I miss those eyes!". He stayed awake for a few minutes and then drifted back off to sleep again. I had been second guessing our decision all day and it really felt like he was giving me a sign that it was ok.
Donny came in about 10 that night to take over and I passed Colton over to his daddy. I went him to prepare for the long day ahead. When Donny got home in the middle of the night, he said to me, "Colton opened his eyes and looked at me and it felt like he was telling me goodbye." I melted. Donny and I hadn't discussed that Colton had opened his eyes for me at all, nor had we talked about how I felt. It was just another of Colton's little gifts of peace.
Colton at this point was pretty much drugged to the max in order to keep the siezures under control. In fact, they had to give him a paralytic so he would tolerate being moved from his isolette to kangaroo. It was not an easy process by any means, but the nurses and RT's would do anything for us. Nobody other than myself and Donny had held him the entire four months. We always thought we had time later. Well, we wanted his grandmas to get to hold him. So on this day, Colton shared special moments with both his grandmas and his aunt. They got to hold him, smell him and feel his warmth. It was the epitomy of bittersweet. I was so proud to see him held by my mom but it never left me that this was the only time I would ever see that.
Colton got shared that day with his family and I feel thankful that he had that time with them. After everyone left for the day, Colton and I got some time alone. Just me and him. It was the first time in days that we had totally alone time. We rocked and I leaned my cheek on his head, closed my eyes and held him tight. I had his flat teddy with us and a blanket and it was so cozy and warm. Throughout Colton's life I always felt so at peace when I held him and rocked. No matter what else was going on, if he was having a bad day or I was, it all melted away when we kangarooed. I haven't had that feeling since and I so miss it. Just hours of peace and love and warmth. I felt like I was protecting him, that my arms wrapped around him would keep out all the bad stuff. I felt like he was cozy and warm and could hear my heart beat like when he was still inside.
As we rocked, even knowing that it was one of the last times I would ever do this with him, I still felt that sense of peace. All was calm, all was right. As we rocked something made me open my eyes and look down at his face. There was my little Colton, drugged up to the max, looking up with his eyes wide open. We hadn't seen his eyes open in days. When he looked at me I immediately felt this sense of "it's ok mommy, I'm ready to go." I remember saying, "hi baby! I miss those eyes!". He stayed awake for a few minutes and then drifted back off to sleep again. I had been second guessing our decision all day and it really felt like he was giving me a sign that it was ok.
Donny came in about 10 that night to take over and I passed Colton over to his daddy. I went him to prepare for the long day ahead. When Donny got home in the middle of the night, he said to me, "Colton opened his eyes and looked at me and it felt like he was telling me goodbye." I melted. Donny and I hadn't discussed that Colton had opened his eyes for me at all, nor had we talked about how I felt. It was just another of Colton's little gifts of peace.
Saturday, December 12, 2009
Last Days
I feel like we've entered into the last days of a long marathon, reliving Colton's last days. Its really difficult to put it into words how much it is in the back of your mind all the time in these pivotal days. Maybe its the weather, maybe its looking at the date on the calendar. I look back on my blog posts from last year and think about some of the choices I made then and realize what shock I was in. At the time, I thought I had it all together, but I know now that in a way, I had to detach just a bit to cope. I'd like to share a bit more of what we went through those last few days. I'm hoping to make an entry each of the next few days up until Colton's Angel Day.
At this point last year, Colton has just had his 24 hour EEG study because he was suffering from ongoing, uncontrollable siezures. After being off the vent for about 3 weeks, he had to go back on because of all the meds on board. It was painful to watch what was happening to him. He had gone from a calm, relaxed baby to one without control of his limbs, sensitive to sound, touch and light. The siezures wracked his little body. The worst part was that because of the EEG and his instability we were unable to hold him at all for over a week. That was the one comfort Colton (and me) had and we couldn't do it. In my heart of hearts I think I knew where we were headed, but at the same time I was in a bit of denial. Colton had rebounded before, maybe he would now.
The day the neurologist was to come and read the EEG study, our nurse Cindy was on with Colton. I had been there in the afternoon and hoped to catch the neurologist. I think it was about 4:30 and I headed out to go home. As I was getting onto the elevator to leave I saw the neurologist get off the elevator and head toward the NICU. I knew he was going to read Colton's study. I stood there. One part of me wanted to follow, the other wanted to run. Denial kicked in again and I headed into the elevator.
I got home that evening and called in about an hour after I had left to check on Colton and talk to Cindy. When she picked up the line I knew in her voice something was wrong. What she shared with me was to forever change the course of our lives, but what a blessing she gave me. You see, nurses aren't supposed to deliver news that the doctors would give. But dear Cindy, ever the rule-bender, had our best interests at heart. She told me that she didn't want me to be caught off-guard in our doctor meeting that was scheduled the next day. I said, ok. She said I'm so sorry, but its really bad. My heart started racing at that point and my eyes welled up. The lump in my throat felt like it was going to choke me. I asked Cindy, "how bad? Is it we're going to lose him bad?" She couldn't answer anymore questions and I could tell she was having a hard time holding it together on the other end. Her voice was shaking and she just said "I'm so sorry." I knew. I knew. I knew. I hung up the phone and crumbled into a ball on my bed. I sobbed and shook. It was so surreal, I didn't really know what to do. I called Donny and told him to come home from work. After that I don't really know what happened. Honestly I don't remember. I just know it was like a dream, well I guess a nightmare. It was obvious where we were headed but I still needed someone to say the words to me.
The next morning Donny and I got up, went through the motions of getting ready and headed up to CHOC to see Colton before the big meeting. His condition was much the same as the day before but there was a clear shift in the dynamic with the nurses. His nurse on duty that day asked me when the last time I held Colton was. I said over a week ago. She said, well we are going to fix that and immediately they went to work on getting it done. I saw the sad looks from other nurses and RT's. I had a few come up and hug me. I still hadn't heard the words yet, but the air was different. Looking back now they had shifted into palliative care, I just didn't see it. I'm sad because I dont' really remember kangarooing with him that day. I know I did it, but I don't have a memory of it. So much happened so fast in those days. I have such crystal clear memories of some things and others are just a complete blur. I wish I could remember every moment I had with Colton, but my brain just didn't retain it all.
The time came when we had to go to the doctor meeting. We put Colton back into his isolette and headed down the hall to the conference room. I didnt' know what to expect but bless the staff. We had a full house. All of our support people were there that had held our hands through our journey at CHOC. Some even came in on their day off to be with us. We all sat around the table waiting for the neurologist to arrive. Nurses, social worker, family services coordinator, neonatologist, us. All sitting around a table waiting for the inevitable words to come. The neurologist was late, he bustled in seeming flustered and sat down at the table. He was very cold, very matter of fact. I have seen more empathy from a flea biting a dog. But it is what it is. Maybe its the way I needed to hear the news. He said, (and I paraphrase) the damage to your son's brain is profound. He will never walk, he will never talk, he will never eat on his own, he will most likely never leave the hospital. There is too much damage.
I sat there hearing the blood rushing through my ears. I had one question. I don't know why I had to ask it but I did. I asked the neurologist, "was Colton born with a normal brain?" He said yes. And there it was. We did this to him. We ruined him. Because he was born so early, because he had a VSD, because he was given so many meds his poor little brain was assaulted and ruined. I know logically that everyone did their best. But there will always be a part of me that feels like Colton was born perfect and we ruined him. I'll never know his potential. I'll never know his voice. I'll never know his cry. I'll never know his hugs and kisses. I'll never know what he wanted to be when he grew up. I'll never know happy holidays with him. All of that died with his poor little brain.
The neurologist jumped up at that point and promptly left. He left us shattered. The neonatologist (who was much more senstive, thankfully) told us that we now had to make some decisions. We had the choice of removing support, or doing a DNR. Donny and I had already discussed that we wanted to remove support because of the truama and fight Colton had been through. We second guessed ourselves over the next days but it was the decision that we had made. We hadn't thought past the initial decision and we had to discuss when we would remove support. I had to choose the day and time my son would die. It was an excruciatingly heavy burden then and still is now. That I had to make that choice. Its so unnatural that a parent should have to do that. The neonatologist left us to talk further and when he left I crumbled. I remember putting my face in my hands and sobbing. I heard Donny sitting next to me sobbing. I looked up and saw tears running down everyone else's faces at the table. SO much love for one little boy, who we now had to let go.
Much after this is again, a blur. I recall them saying that they would move Colton into a private room, and that all the rules were essentially lifted for us. We didn't have to leave at shift change and we didn't have to be present for family members to come see him. I think we stayed with him for a few more hours after that.
We quickly made decisions about what we wanted to do. We knew we wanted him baptized. We knew we wanted others to get to hold him. We came home that evening and started making phone calls. I was exhausted. I remember making call after call. Telling the same story over and over again. I felt robotic, like it wasn't really happening to me. I would drift in and out of feeling detached to feeling like someone was sticking a hot poker in my chest. I sat down to write a blog entry to let everyone know what was happening. I wrote an email to my clients explaining why I wouldn't be available the next few days. Who was this happening to? This wasn't supposed to be my life. I was supposed to have Colton and bring him home and have him grow up with his cousin and be a mommy. Shockingly I did sleep that night. I think I was just too exhausted not to.
The last thing I remember about that day is that the last thing I did each night before I went to sleep was to pump. I had the pump on the nightstand next to my bed. I looked at it and realized that I no longer needed to pump. I guess I had to let my milk dry up now. For four months I had to fight for every stinkin drop of that milk. I had to take drugs that made me exhausted to help with it and even my girlfriend had to supplement my milk with hers when Colton was eating more than I could produce. Everything had been such a fight. And now I had to lose that too. It was the final admission of what was to come. I hated that pump. And now I already missed it.
At this point last year, Colton has just had his 24 hour EEG study because he was suffering from ongoing, uncontrollable siezures. After being off the vent for about 3 weeks, he had to go back on because of all the meds on board. It was painful to watch what was happening to him. He had gone from a calm, relaxed baby to one without control of his limbs, sensitive to sound, touch and light. The siezures wracked his little body. The worst part was that because of the EEG and his instability we were unable to hold him at all for over a week. That was the one comfort Colton (and me) had and we couldn't do it. In my heart of hearts I think I knew where we were headed, but at the same time I was in a bit of denial. Colton had rebounded before, maybe he would now.
The day the neurologist was to come and read the EEG study, our nurse Cindy was on with Colton. I had been there in the afternoon and hoped to catch the neurologist. I think it was about 4:30 and I headed out to go home. As I was getting onto the elevator to leave I saw the neurologist get off the elevator and head toward the NICU. I knew he was going to read Colton's study. I stood there. One part of me wanted to follow, the other wanted to run. Denial kicked in again and I headed into the elevator.
I got home that evening and called in about an hour after I had left to check on Colton and talk to Cindy. When she picked up the line I knew in her voice something was wrong. What she shared with me was to forever change the course of our lives, but what a blessing she gave me. You see, nurses aren't supposed to deliver news that the doctors would give. But dear Cindy, ever the rule-bender, had our best interests at heart. She told me that she didn't want me to be caught off-guard in our doctor meeting that was scheduled the next day. I said, ok. She said I'm so sorry, but its really bad. My heart started racing at that point and my eyes welled up. The lump in my throat felt like it was going to choke me. I asked Cindy, "how bad? Is it we're going to lose him bad?" She couldn't answer anymore questions and I could tell she was having a hard time holding it together on the other end. Her voice was shaking and she just said "I'm so sorry." I knew. I knew. I knew. I hung up the phone and crumbled into a ball on my bed. I sobbed and shook. It was so surreal, I didn't really know what to do. I called Donny and told him to come home from work. After that I don't really know what happened. Honestly I don't remember. I just know it was like a dream, well I guess a nightmare. It was obvious where we were headed but I still needed someone to say the words to me.
The next morning Donny and I got up, went through the motions of getting ready and headed up to CHOC to see Colton before the big meeting. His condition was much the same as the day before but there was a clear shift in the dynamic with the nurses. His nurse on duty that day asked me when the last time I held Colton was. I said over a week ago. She said, well we are going to fix that and immediately they went to work on getting it done. I saw the sad looks from other nurses and RT's. I had a few come up and hug me. I still hadn't heard the words yet, but the air was different. Looking back now they had shifted into palliative care, I just didn't see it. I'm sad because I dont' really remember kangarooing with him that day. I know I did it, but I don't have a memory of it. So much happened so fast in those days. I have such crystal clear memories of some things and others are just a complete blur. I wish I could remember every moment I had with Colton, but my brain just didn't retain it all.
The time came when we had to go to the doctor meeting. We put Colton back into his isolette and headed down the hall to the conference room. I didnt' know what to expect but bless the staff. We had a full house. All of our support people were there that had held our hands through our journey at CHOC. Some even came in on their day off to be with us. We all sat around the table waiting for the neurologist to arrive. Nurses, social worker, family services coordinator, neonatologist, us. All sitting around a table waiting for the inevitable words to come. The neurologist was late, he bustled in seeming flustered and sat down at the table. He was very cold, very matter of fact. I have seen more empathy from a flea biting a dog. But it is what it is. Maybe its the way I needed to hear the news. He said, (and I paraphrase) the damage to your son's brain is profound. He will never walk, he will never talk, he will never eat on his own, he will most likely never leave the hospital. There is too much damage.
I sat there hearing the blood rushing through my ears. I had one question. I don't know why I had to ask it but I did. I asked the neurologist, "was Colton born with a normal brain?" He said yes. And there it was. We did this to him. We ruined him. Because he was born so early, because he had a VSD, because he was given so many meds his poor little brain was assaulted and ruined. I know logically that everyone did their best. But there will always be a part of me that feels like Colton was born perfect and we ruined him. I'll never know his potential. I'll never know his voice. I'll never know his cry. I'll never know his hugs and kisses. I'll never know what he wanted to be when he grew up. I'll never know happy holidays with him. All of that died with his poor little brain.
The neurologist jumped up at that point and promptly left. He left us shattered. The neonatologist (who was much more senstive, thankfully) told us that we now had to make some decisions. We had the choice of removing support, or doing a DNR. Donny and I had already discussed that we wanted to remove support because of the truama and fight Colton had been through. We second guessed ourselves over the next days but it was the decision that we had made. We hadn't thought past the initial decision and we had to discuss when we would remove support. I had to choose the day and time my son would die. It was an excruciatingly heavy burden then and still is now. That I had to make that choice. Its so unnatural that a parent should have to do that. The neonatologist left us to talk further and when he left I crumbled. I remember putting my face in my hands and sobbing. I heard Donny sitting next to me sobbing. I looked up and saw tears running down everyone else's faces at the table. SO much love for one little boy, who we now had to let go.
Much after this is again, a blur. I recall them saying that they would move Colton into a private room, and that all the rules were essentially lifted for us. We didn't have to leave at shift change and we didn't have to be present for family members to come see him. I think we stayed with him for a few more hours after that.
We quickly made decisions about what we wanted to do. We knew we wanted him baptized. We knew we wanted others to get to hold him. We came home that evening and started making phone calls. I was exhausted. I remember making call after call. Telling the same story over and over again. I felt robotic, like it wasn't really happening to me. I would drift in and out of feeling detached to feeling like someone was sticking a hot poker in my chest. I sat down to write a blog entry to let everyone know what was happening. I wrote an email to my clients explaining why I wouldn't be available the next few days. Who was this happening to? This wasn't supposed to be my life. I was supposed to have Colton and bring him home and have him grow up with his cousin and be a mommy. Shockingly I did sleep that night. I think I was just too exhausted not to.
The last thing I remember about that day is that the last thing I did each night before I went to sleep was to pump. I had the pump on the nightstand next to my bed. I looked at it and realized that I no longer needed to pump. I guess I had to let my milk dry up now. For four months I had to fight for every stinkin drop of that milk. I had to take drugs that made me exhausted to help with it and even my girlfriend had to supplement my milk with hers when Colton was eating more than I could produce. Everything had been such a fight. And now I had to lose that too. It was the final admission of what was to come. I hated that pump. And now I already missed it.
Thursday, December 10, 2009
Dragonflies
This is a sad week. No way around it. I'm doing much of the "what was I doing this time last year". So, I thought I'd write about something positive. I'm not much for signs. It's probably the part of my father that I inherited. Logic/science. But sometimes in life you just can't ignore them. I've never set out to find something that reminds me of Colton. I've never looked hard for signs that he is with me. I've heard others talk of signs, but thought they maybe just looked for them so hard because they were looking for a connection.
This summer I was no longer able to ignore. :) One day at the pool there was a dragonfly that hovered over. I kid you not, this little guy was hanging around for at least a half hour. Well all the kids at the pool noticed him and started trying to "get him." I remember being overly concerned that the dragonfly was going to be drowned or shot down. Strange.
Then at Colton's spot, where I go to see him each week, a dragonfly kept showing up while I was sitting with him. It would dart in and seem to hover above his spot. It would fly off and then return a couple minutes later. This happened, no joke, three weeks in a row.
Toward the end of summer I was driving onto my street and looked out of my windshield and there was a dragonfly, flying above my car. OK now I was starting to wonder.
Not too long ago a dear friend of mine decided to look up the meaning of a dragonfly. Chills. Take a gander yourself and google it.
The latest in my dragonfly encounters, was a friend of mine was talking to her mom and discussing our Angel of Hope event and her mom interrupted her by saying she had found a dragonfly pin in a gift shop. OK I'm convinced.
Somehow, some way my little Colton has decided to remind us of his spirit with a dragonfly. I have rain in the winter and dragonflies in the summer. My boy has covered it all!
This summer I was no longer able to ignore. :) One day at the pool there was a dragonfly that hovered over. I kid you not, this little guy was hanging around for at least a half hour. Well all the kids at the pool noticed him and started trying to "get him." I remember being overly concerned that the dragonfly was going to be drowned or shot down. Strange.
Then at Colton's spot, where I go to see him each week, a dragonfly kept showing up while I was sitting with him. It would dart in and seem to hover above his spot. It would fly off and then return a couple minutes later. This happened, no joke, three weeks in a row.
Toward the end of summer I was driving onto my street and looked out of my windshield and there was a dragonfly, flying above my car. OK now I was starting to wonder.
Not too long ago a dear friend of mine decided to look up the meaning of a dragonfly. Chills. Take a gander yourself and google it.
The latest in my dragonfly encounters, was a friend of mine was talking to her mom and discussing our Angel of Hope event and her mom interrupted her by saying she had found a dragonfly pin in a gift shop. OK I'm convinced.
Somehow, some way my little Colton has decided to remind us of his spirit with a dragonfly. I have rain in the winter and dragonflies in the summer. My boy has covered it all!
Monday, December 7, 2009
Angel of Hope
Last night I attended a service called Angel of Hope. All over the country are Angel of Hope statues and last night, simultaneously, a candlelight service was held for people who have lost children of any age. I had the privilege of sharing Colton as I was asked to speak at this year's service. I thought I would share my words with those of you who didn't get to attend:
August 17th, 2008 changed my life because my child was born. December 15th, 2008 changed my life even more profoundly, because that was the day my baby became an Angel. My son, Colton, was born premature at 27 weeks. For 121 days he fought for every milestone and showed us a strength we never imagined in such a tiny package.
During this time, we anticipated his homecoming and dreamt of the years ahead we would spend watching him grow up. However, suddenly and swiftly Colton’s health took a turn for the worse and our time with him here had come to an end. The fleeting moments we had with our beautiful boy here on Earth held the thrill of parenthood. But it has been the moments since he became an angel that have been the most powerful.
After Colton passed, I searched for meaning and purpose. Through hours of tears and the long journey through grief, I have found peace in finding ways to have Colton remembered. As a parent who lost a child, my worst fear is that his life will be forgotten. Colton existed. He is my child today as much as he was on August 17th, 2008. Having Colton was a gift and I have taken that strength he showed me and found ways to keep his memory as alive as his spirit.
We have been able to honor him by starting Colton’s Kangaroo Club to provide gliders to the CHOC NICU for parents who want to spend their precious moments, just like we did, with their babies. We have had a team two years in a row at the CHOC Walk and raised almost $10,000 for CHOC Children’s. We have many plans in the near future for Colton’s Kangaroo Club and I am thrilled to have my son’s name attached to something so wonderful.
I am a proud parent and love to share my son. I want to talk about him and I want others to remember his strength and love. I have had my dark days, my moments of feeling cheated. I miss my son every moment of every day. Just as other mothers raise their children here on Earth, I believe that it is my job and my gift to nurture my son’s spirit and share the love and light he brought to those he touched.
I am here tonight to remember my son, just as you are here to remember your child, your niece, your nephew, your grandson or granddaughter. These precious souls left us too soon, but we can share them with others and they can live on through us. I’d like to share a poem with you all that encompasses those feelings and the life long journey we are all on. It’s entitled “My Child.”
Go ahead and mention my child,
The one that died, you know.
Don’t worry about hurting me further,
The depth of my pain doesn’t show.
Don’t worry about making me cry,
I’m already crying inside.
Help me heal by releasing the tears that I try to hide.
I’m hurt when you just keep silent,
Pretending he didn’t exist.
I’d rather you mention my child,
Knowing that he’s been missed.
You ask me how I am doing,
I say “pretty good” or “fine”.
But healing is something ongoing,
I feel like it will take a lifetime.
Peace be with you all.
August 17th, 2008 changed my life because my child was born. December 15th, 2008 changed my life even more profoundly, because that was the day my baby became an Angel. My son, Colton, was born premature at 27 weeks. For 121 days he fought for every milestone and showed us a strength we never imagined in such a tiny package.
During this time, we anticipated his homecoming and dreamt of the years ahead we would spend watching him grow up. However, suddenly and swiftly Colton’s health took a turn for the worse and our time with him here had come to an end. The fleeting moments we had with our beautiful boy here on Earth held the thrill of parenthood. But it has been the moments since he became an angel that have been the most powerful.
After Colton passed, I searched for meaning and purpose. Through hours of tears and the long journey through grief, I have found peace in finding ways to have Colton remembered. As a parent who lost a child, my worst fear is that his life will be forgotten. Colton existed. He is my child today as much as he was on August 17th, 2008. Having Colton was a gift and I have taken that strength he showed me and found ways to keep his memory as alive as his spirit.
We have been able to honor him by starting Colton’s Kangaroo Club to provide gliders to the CHOC NICU for parents who want to spend their precious moments, just like we did, with their babies. We have had a team two years in a row at the CHOC Walk and raised almost $10,000 for CHOC Children’s. We have many plans in the near future for Colton’s Kangaroo Club and I am thrilled to have my son’s name attached to something so wonderful.
I am a proud parent and love to share my son. I want to talk about him and I want others to remember his strength and love. I have had my dark days, my moments of feeling cheated. I miss my son every moment of every day. Just as other mothers raise their children here on Earth, I believe that it is my job and my gift to nurture my son’s spirit and share the love and light he brought to those he touched.
I am here tonight to remember my son, just as you are here to remember your child, your niece, your nephew, your grandson or granddaughter. These precious souls left us too soon, but we can share them with others and they can live on through us. I’d like to share a poem with you all that encompasses those feelings and the life long journey we are all on. It’s entitled “My Child.”
Go ahead and mention my child,
The one that died, you know.
Don’t worry about hurting me further,
The depth of my pain doesn’t show.
Don’t worry about making me cry,
I’m already crying inside.
Help me heal by releasing the tears that I try to hide.
I’m hurt when you just keep silent,
Pretending he didn’t exist.
I’d rather you mention my child,
Knowing that he’s been missed.
You ask me how I am doing,
I say “pretty good” or “fine”.
But healing is something ongoing,
I feel like it will take a lifetime.
Peace be with you all.
Tuesday, December 1, 2009
New home, new holidays
December 1st. Been anticipating the arrival of this month all year, and not in a good way. Since I last wrote, I've moved. Leaving Colton's room was so very very hard. Packing up this things into a single box, taking each treasured piece I have of him and putting it into something that seems so impersonal was one of the hardest things I've had to do this year. Even though he never made it home, his room was sacred ground. I pumped for him in his room. I talked on the phone in his glider to friends and family about his progress. I went in there to reflect on his life, think about him and be with his things after he passed. It was Colton's room in every way, and leaving it felt like another loss. In my condo, I have photos of Colton in my bedroom and on my desk and I've found a special spot for some of his most treasured items, so I'm coping. I've recovered his glider and use it in my living room. I find myself rocking in it and it makes me feel a little better. :)
Since the big move is over, I find myself having more time to focus on what's around the corner. Colton's Angel Day is fast approaching. Last year, we were well into our four month fight for Colton's health and managed to put up the Christmas tree, but that was about it. Of course you all know that he passed 10 days before Christmas and it was surreal that we had put up the tree when he was alive and took it down when he was already gone. I was really hesitant to jump into the Christmas season this year because it is all tied to a visceral memory now. I allowed myself to just wing it and see how I felt when it came to decorations and participation in activities. In fact, I had pretty much resolved myself to NOT decorating this year. More on that in a minute.
So, Thanksgiving rolled around last week and I had several family events to attend and hadn't really given the holiday much thought. No dread or special meaning attached to it, so I was completely caught off guard when I woke up Thanksgiving morning and was a complete MESS. I woke up with a pit in my stomach, cried all morning and had a really, really hard time. I sat down with one of the photo books I have and went through it, trying to think about why I was having such a hard day. After much thought, I think it was that last year at Thanksgiving, Colton was probably in the best health he had been the entire journey. He was off the ventilator, we could hold him with out too many tubes/wires. He no longer needed an IV tree, he got to meet his great Grandpa and his great uncle Milan. We had so many neat memories packed into that week, and still had so much hope. Colton had appeared to defy what doctors had told us and looked like we were finally on the upswing. Nurses and family were all speculating on when he would finally come home in the new year. I got to watch Colton suck on a pacifier without a ventilator tube in his mouth and we could finally see his beautiful face without tape and tubes. In a way I felt like we had finally climbed to the top of some huge mountain. Colton showed us his best on Thanksgiving last year. I miss feeling so hopeful and being a proud parent. I was so proud of him. He had fought so hard for every little milestone and to hold him without tubes and watch him do something so ordinary like suck on a pacifier held so much awe.
I pulled myself together to head out to family events. My nephew was introduced to some of our family that he hadn't met before and it was hard that I didn't get introduce Colton to them ever. The selfish part of me feels cheated. I don't get to be a mommy. I don't get to pass my handsome boy around and watch him smile and play with new people. Holidays are hard because it is then when I'm slapped in the face with the harsh reality that my life is completely different than is was last year. In my heart I'll always be Colton's mommy, but as time marches on, the outside world just sees me as the old Amy. Single gal with no children. Kind of like I was 10 years ago, like nothing ever occured. I wish I could wear a sign on my forehead that says, I am Colton's mommy. Just because you don't see a baby doesn't mean I'm not a mommy.
After all the Thanksgiving hub-bub was over I turned on the holiday tunes and sat on my couch to see how I felt. I decided that I was going to put up a tree and do some light decorating. No matter what, I'm going to feel crappy. Why not do it with some holiday dressing? As I pulled out my ornaments for the tree, I came accross four ornaments that friends/family had given us for Colton as well as the stocking that the NICU nurses had made for him. I chose a special spot on the tree and put all his little ornaments/stocking together. I love that he has a spot on my tree. I'm happy that I pulled it all out and can enjoy a little of the holiday spirit.
I plan to write several entries over the next couple of weeks. There is much that happened last year that I didn't write about as at the time it was too jarring and sad to put into written word. I want to share with you this year the final days of our journey with Colton and some of the tiny miracles that occurred.
I miss you terribly Colton. I have many more good days than bad, but I hope you give me strength as we head into these next few weeks. Until someday my little man...
Since the big move is over, I find myself having more time to focus on what's around the corner. Colton's Angel Day is fast approaching. Last year, we were well into our four month fight for Colton's health and managed to put up the Christmas tree, but that was about it. Of course you all know that he passed 10 days before Christmas and it was surreal that we had put up the tree when he was alive and took it down when he was already gone. I was really hesitant to jump into the Christmas season this year because it is all tied to a visceral memory now. I allowed myself to just wing it and see how I felt when it came to decorations and participation in activities. In fact, I had pretty much resolved myself to NOT decorating this year. More on that in a minute.
So, Thanksgiving rolled around last week and I had several family events to attend and hadn't really given the holiday much thought. No dread or special meaning attached to it, so I was completely caught off guard when I woke up Thanksgiving morning and was a complete MESS. I woke up with a pit in my stomach, cried all morning and had a really, really hard time. I sat down with one of the photo books I have and went through it, trying to think about why I was having such a hard day. After much thought, I think it was that last year at Thanksgiving, Colton was probably in the best health he had been the entire journey. He was off the ventilator, we could hold him with out too many tubes/wires. He no longer needed an IV tree, he got to meet his great Grandpa and his great uncle Milan. We had so many neat memories packed into that week, and still had so much hope. Colton had appeared to defy what doctors had told us and looked like we were finally on the upswing. Nurses and family were all speculating on when he would finally come home in the new year. I got to watch Colton suck on a pacifier without a ventilator tube in his mouth and we could finally see his beautiful face without tape and tubes. In a way I felt like we had finally climbed to the top of some huge mountain. Colton showed us his best on Thanksgiving last year. I miss feeling so hopeful and being a proud parent. I was so proud of him. He had fought so hard for every little milestone and to hold him without tubes and watch him do something so ordinary like suck on a pacifier held so much awe.
I pulled myself together to head out to family events. My nephew was introduced to some of our family that he hadn't met before and it was hard that I didn't get introduce Colton to them ever. The selfish part of me feels cheated. I don't get to be a mommy. I don't get to pass my handsome boy around and watch him smile and play with new people. Holidays are hard because it is then when I'm slapped in the face with the harsh reality that my life is completely different than is was last year. In my heart I'll always be Colton's mommy, but as time marches on, the outside world just sees me as the old Amy. Single gal with no children. Kind of like I was 10 years ago, like nothing ever occured. I wish I could wear a sign on my forehead that says, I am Colton's mommy. Just because you don't see a baby doesn't mean I'm not a mommy.
After all the Thanksgiving hub-bub was over I turned on the holiday tunes and sat on my couch to see how I felt. I decided that I was going to put up a tree and do some light decorating. No matter what, I'm going to feel crappy. Why not do it with some holiday dressing? As I pulled out my ornaments for the tree, I came accross four ornaments that friends/family had given us for Colton as well as the stocking that the NICU nurses had made for him. I chose a special spot on the tree and put all his little ornaments/stocking together. I love that he has a spot on my tree. I'm happy that I pulled it all out and can enjoy a little of the holiday spirit.
I plan to write several entries over the next couple of weeks. There is much that happened last year that I didn't write about as at the time it was too jarring and sad to put into written word. I want to share with you this year the final days of our journey with Colton and some of the tiny miracles that occurred.
I miss you terribly Colton. I have many more good days than bad, but I hope you give me strength as we head into these next few weeks. Until someday my little man...
Subscribe to:
Posts (Atom)