I'm writing this entry mostly to just record this so I don't forget in the future. This one I want to remember. I probably won't do it justice because it will be hard to describe the emotions I was having in the dream which is really what made it so powerful.
As you know, I've been convinced by repetitive visits that Colton's spirit somehow has associated itself with dragonflies. I see them CONSTANTLY! They've even started making appearances when I'm with groups of people now too. I never believed in signs or much of that "woo-woo" stuff before, but this one was just too hard to ignore. Ever since, I've decided to try and keep an open mind and receive whatever little gifts come my way.
I've always feared that I would lose that connection with Colton as time goes by. The fear has lessened a bit but I think it will always be there to a degree. We are approaching the two-year mark since he passed away and I continue to learn and grow from his life and his death. He profoundly changed me and I believe that is one way to honor his spirit. To embrace those changes and become the person I know he was put here to allow me to be. But still, as the days tick by, I often find myself wondering if I will really "feel" his spirit around me. I get that a bit when I see the dragonflies, but that is more of a playful smile as they flit around.
Last night I went to bed just as I always do, fell asleep and at some point in the night found myself in the most wonderful dream. I've had many, many dreams, but rarely (if ever) do they come packed with such a strong level of emotion and certainty of what it was about. Usually you have to wake up to interpret what the dream meant. Not this one!
In the dream I was standing in the front yard of the house I grew up in (in rural Maryland). There was a big tree outside my bedroom window and I was standing barefoot in the grass under the tree. I remember in my dream, thinking about Colton and then as quickly as that thought came through my head, the wind came and gently picked me up into a horizontal position. Imagine a mosh pit where you feel hundreds of hands under you moving you along over the crowd. This is what it felt like, but in a very gentle way. There was also the feeling of a little hand holding mine walking along side me as the wind floated me toward the back yard. I looked over and there wasn't anyone standing there but I knew, without any uncertainty, it was Colton holding my hand. I can't explain it but I just knew it.
The wind carried me back to where we had our family garden and put me down into the grass next to the garden. I remember feeling the little hand let go, but I wasn't sad. I laid down in the grass next to the garden. In it, was a pile of leaves and garden debris. It began to move a little. I laid my head down in the grass to watch. From underneath the pile came a little baby bird. It just hopped out like it was just born and then flew away. I felt such joy and peace. I felt connected and I felt happy. There was no question in my mind and the powerful energy I felt that Colton had been with me and he had orchestrated that.
Reading it without experiencing it probably doesn't hold the same power, but for me, it did. And I was the one it was meant for. I guess that answers my question about feeling connected! Maybe I'm turning into one of those "woo-woo" people but I'll take it. Wow!
The NICU adventures of Colton Chilla as he grew and the journey of his mommy after he became an angel.
Thursday, November 18, 2010
Sunday, August 29, 2010
CHOC Walk Time Again!
Hard to believe that this will be our 3rd year participating, but excited to see how our team does this year! We'll be there bright eyed and bushy tailed at Disneyland on October 17th! Join us or sponsor us to raise money for a great hospital, CHOC Children's!
Our team page is www.chocwalk.net/coltonskangarooclub. Thanks for your support!
Our team page is www.chocwalk.net/coltonskangarooclub. Thanks for your support!
Monday, August 16, 2010
Colton's 2nd Birthday
It is the night before Colton's 2nd birthday. Well, really it feels like his birthday because he was born at 2:55 am. :) I was traveling the last few days, which was good, it was a welcome distraction from the way I've been feeling the last weeks. I love to travel, but have a hard time with airplanes. I don't think I've shared with anyone, but about 2 weeks before Colton was born I was on a business trip and we had a pretty bumpy ride to say the least. For some reason I vividly remember that plane ride because Colton was insanely kicking each time the plane made a drop (we had lots of them. Summer, East Coast, major thunderstorm, missed runway, need I say more?) It was probably my adrenaline going to him but he was a kicking machine. Now, whenever I'm on a plane it just takes me back. I look out the window and see the clouds and I absolutely cannot stop thinking of him. Weird, I know but who can explain the way our brains work? I surely cannot. On my way back this trip, there was a ton of humidity in the air which made for some marshmallowey, puffy white, gorgeous clouds. It reminded me of the sheepskin Colton used to lay on in his isolette. Awesome. Why does everything remind me of Colton these days? Isn't this supposed to get better as time goes on? I had a hard time holding it together on the plane, but I did, just as I do.
I feel lately as I did toward the end of Colton's life. Worn out, weary on bad news and bone tired. I know its a phase and I'll work through it but I think this year is different than last because I'm not dealing with other issues. I'm not selling a home, looking for a new place to live and adjusting to life without a partner. All that was on my plate last year and maybe this year I'm just calm enough to really process what has happened over the last two years. But enough about me, it is Colton's birthday after all!
My beautiful Colton came into this world a fighter. We were told that when he was born he wouldn't cry. But he did. Imagine the tiniest little kitten mew and that is what his cry sounded like. Who knew that at 27 weeks of age he could have his daddy's fingers and toes? Who knew that I would cherish the hours of time spent kangarooing? No matter how crazy the day had been, I felt at complete peace doing that. Who knew that a little boy so tiny could smell so wonderful or have the strongest of grips? Who knew that those soulful, deep blue eyes would live through more medical procedures than most of us could ever dream? Who knew you could feel love like that? Who knew that if you poked him gently on his nose or cheek he would smile? Who knew someone that small could make such a stinky diaper? Who knew that something as simple as sucking a pacifier would make me the world's proudest mom?
Who knew we would have to live a lifetime in four months? Who knew a hospital would be his only home? Who knew we would have to only try and remember his smell and touch? Who knew we would have to let go? Who knew I would look in the mirror someday and miss the person I used to be? Who knew I would have a completely different identity two years later? Who knew that an ache could run this deep?
And if I knew all of this, would it have made a difference? Who knows. I am deeper, I am stronger, I have lost much, I have loved even more. I am who I am, all because of a beautiful little boy named Colton. What an amazing impact. Happy 2nd birthday my little love. Mommy hopes you are dancing on one of those marshmallow clouds.
Monday, August 9, 2010
Sometimes its just exhausting
I thought I should check in again since Colton's birthday is right around the corner. Once again, this "journey" has caught me by surprise. I was feeling so strong for quite awhile and while I think of Colton every day, many times a day, I was managing. I was looking forward, plodding along nicely. Then came July. I call it the start of "the season". When I was pregnant with Colton, just about everyone in my life was also pregnant it seemed. We all had little boys, starting in July and ending in October. Colton was going to have so many buddies! The first little buddy, Liam, turned 2 in July and I went to his birthday party. And so it begins. Watching all the other buddies turn 2 and wondering what my little boy would be like. That's right, Colton would be a little boy by now, no longer a baby. Don't get me wrong I love watching these little dudes grow and run free. In a way I see Colton growing through them. But at every turn it is in my mind what he would be doing, saying, getting into. :)
I am blessed with great friends who have Colton's birthday marked on their calendars and want to celebrate it with me. But I don't talk about him much anymore, it seems odd. And I know people don't ask me as much because they are afraid to bring it up or upset me. It's the natural evolution of things, I know. I appear on the outside to have it together but sometimes on the inside, its just plain exhausting. Living with grief literally drains the energy right out of you. As "the season" progresses and we near Colton's 2nd birthday, the irony doesn't escape me. The memories get fuzzier but in some ways the pain gets sharper. Yes, I manage it better, but it is so sad that the 2nd year has passed.
Which leads me to the other aspect of this that I struggle with. I feel like I don't have a place where I fit anymore. I don't get to have another child (at least not right now). I don't have any other children. I don't have a husband anymore and I certainly don't feel like I fit in with single people who haven't had any of it at all. Again, I am so happy to have friends that overlook these things and include me in everything, but sometimes, I take a step back and look around and feel so alone. Walking this walk by myself has been a very lonely journey. Doing it without a spouse has been very hard at times. I believe everything happens for a reason, but some of these happenings have me at a loss for reasons!
I know I am strong and this too will pass. Life moves forward, whether I'm hanging on tight or not. I share when I'm having good times and I'll share when I'm not. This just happens to be some of those not so happy days when I'm feeling a bit weary from this journey. But something will come along and lift me up as it always does. I live on because of my Colton and because when I see him again I want him to be proud that I am his mommy.
I am blessed with great friends who have Colton's birthday marked on their calendars and want to celebrate it with me. But I don't talk about him much anymore, it seems odd. And I know people don't ask me as much because they are afraid to bring it up or upset me. It's the natural evolution of things, I know. I appear on the outside to have it together but sometimes on the inside, its just plain exhausting. Living with grief literally drains the energy right out of you. As "the season" progresses and we near Colton's 2nd birthday, the irony doesn't escape me. The memories get fuzzier but in some ways the pain gets sharper. Yes, I manage it better, but it is so sad that the 2nd year has passed.
Which leads me to the other aspect of this that I struggle with. I feel like I don't have a place where I fit anymore. I don't get to have another child (at least not right now). I don't have any other children. I don't have a husband anymore and I certainly don't feel like I fit in with single people who haven't had any of it at all. Again, I am so happy to have friends that overlook these things and include me in everything, but sometimes, I take a step back and look around and feel so alone. Walking this walk by myself has been a very lonely journey. Doing it without a spouse has been very hard at times. I believe everything happens for a reason, but some of these happenings have me at a loss for reasons!
I know I am strong and this too will pass. Life moves forward, whether I'm hanging on tight or not. I share when I'm having good times and I'll share when I'm not. This just happens to be some of those not so happy days when I'm feeling a bit weary from this journey. But something will come along and lift me up as it always does. I live on because of my Colton and because when I see him again I want him to be proud that I am his mommy.
Saturday, May 8, 2010
Mommy's Day Again
It's been a long time since I've written and that has been because I've really felt the heavy blanket of grief has lifted. I needed to take a break and begin to look forward at how my life looks now. Make no mistake, I will never move on, but I am moving forward. There is still not a day that goes by where I don't miss and think of my little Colton. I have to imagine that will probably be for the rest of my life.
I don't cry every day anymore, in fact I will go weeks without a tear now. Last year was filled with dread leading up to Mother's Day because it was going to be my first without Colton. I didn't have that same dread this year, but on the eve of Mother's Day I find my heart heavy and the tears flowing. I don't know if Mother's Day will ever feel right for me and its just something I have to accept. I have wonderful friends and family who text, email, call and even drop by with little tokens that show me they know I'm still a mommy, just now to an angel rather than a little boy. I'm amazed that even now, well after most have expected me to move on that people think of me. I am truly blessed.
I watch other mom's who are going through this Mother's Day as a first without one of their children. The pain is raw and deep. I see how far I've come, but yet it's still there for me too. I know how much Colton changed me and how his light will always be with me. I wish he could be returned to me each Mother's Day just for 24 hours. Wouldn't that be neat?
Last year I think I hit one of my emotional breakdowns. I remember sitting on the floor of my living room sobbing after I got home from Colton's spot. I felt so alone and so cheated. I've tried really hard this entire journey not to throw a pity-party for myself but that day I just couldn't pull it off. This year I'm not sure how tomorrow will be, but I have to imagine it will be better than last year.
So, tomorrow, for the second year, I will wake up without my baby on Mother's Day and have a moment of "why me" and then pick myself up, and go to his spot where I will sit and think about him and try and feel him close to me. I'll clean his marker and place fresh flowers and feel like I've done something for both him and me for the day. I'm sure there will be tears, as there will be every Mother's Day. But the thing is, I wouldn't have it any other way. A mother's love is deep and I wouldn't trade that for the world.
Happy Mother's Day to all of you with chilren here on Earth and angels in heaven.
I don't cry every day anymore, in fact I will go weeks without a tear now. Last year was filled with dread leading up to Mother's Day because it was going to be my first without Colton. I didn't have that same dread this year, but on the eve of Mother's Day I find my heart heavy and the tears flowing. I don't know if Mother's Day will ever feel right for me and its just something I have to accept. I have wonderful friends and family who text, email, call and even drop by with little tokens that show me they know I'm still a mommy, just now to an angel rather than a little boy. I'm amazed that even now, well after most have expected me to move on that people think of me. I am truly blessed.
I watch other mom's who are going through this Mother's Day as a first without one of their children. The pain is raw and deep. I see how far I've come, but yet it's still there for me too. I know how much Colton changed me and how his light will always be with me. I wish he could be returned to me each Mother's Day just for 24 hours. Wouldn't that be neat?
Last year I think I hit one of my emotional breakdowns. I remember sitting on the floor of my living room sobbing after I got home from Colton's spot. I felt so alone and so cheated. I've tried really hard this entire journey not to throw a pity-party for myself but that day I just couldn't pull it off. This year I'm not sure how tomorrow will be, but I have to imagine it will be better than last year.
So, tomorrow, for the second year, I will wake up without my baby on Mother's Day and have a moment of "why me" and then pick myself up, and go to his spot where I will sit and think about him and try and feel him close to me. I'll clean his marker and place fresh flowers and feel like I've done something for both him and me for the day. I'm sure there will be tears, as there will be every Mother's Day. But the thing is, I wouldn't have it any other way. A mother's love is deep and I wouldn't trade that for the world.
Happy Mother's Day to all of you with chilren here on Earth and angels in heaven.
Wednesday, January 13, 2010
Colton's on Facebook!
It is my passion and my hope that 2010 will bring good things for me and for Colton's legacy. 2009 was a year of healing and while I still have a long way to go, I want 2010 to be a year of hope and joy.
We raised money early on for Colton's Kangaroo Club to be able to donate gliders to CHOC Children's NICU. That gave us such joy to know that we made a difference in the lives of other NICU families that I want to perpetuate that and made Colton's Kangaroo Club an ongoing fundraising vehicle. Through you, we will be able to champion those tiny fighters and help their mommies and daddies bond with them.
To that end, we have BIG plans for Colton's Kangaroo Club in 2010! We are working on a web site but until then, visit Colton on Facebook! Become a fan of his and get ongoing updates, photos of events and connect with other fans here: http://www.facebook.com/home.php?#/pages/Coltons-Kangaroo-Club/247479423917?ref=nf.
I am excited!
We raised money early on for Colton's Kangaroo Club to be able to donate gliders to CHOC Children's NICU. That gave us such joy to know that we made a difference in the lives of other NICU families that I want to perpetuate that and made Colton's Kangaroo Club an ongoing fundraising vehicle. Through you, we will be able to champion those tiny fighters and help their mommies and daddies bond with them.
To that end, we have BIG plans for Colton's Kangaroo Club in 2010! We are working on a web site but until then, visit Colton on Facebook! Become a fan of his and get ongoing updates, photos of events and connect with other fans here: http://www.facebook.com/home.php?#/pages/Coltons-Kangaroo-Club/247479423917?ref=nf.
I am excited!
Thursday, December 24, 2009
Merry Christmas Colton
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.
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.
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...
Monday, October 26, 2009
Halloween Last Year
We've been decorating little Colton's spot each week for Halloween. Its always been one of my favorite holidays so, of course, Colton gets decorations! I was packing up some things in the house and came across a pile of clothes that I saved that Colton wore. On the top of the pile was his "I love my Mummy" onesie. His nurse Jami was such a sweetie last year and bought Colton his first Halloween outfits. His night nurse Suzie bought him his actual costume, our little football player! I wanted to post a few photos from last year of my handsome little man. It make
s me happy to remember those days. :) 
Until someday, my little man....
s me happy to remember those days. :) 
Until someday, my little man....
Tuesday, October 20, 2009
Balloons & Walks...October Marches On
What a whirlwind lately. Balloon release, A Walk to Remember, CHOC Walk, moving, work....life. We've had many events in October that have been centered around remembering Colton. It makes for special days and bittersweet moments. I didn't write on the blog this month on the 15th like I usually do. I'm not sure how I feel about that. I of course thought of him that day, but I forgot to write that night. Does that mean I'm moving forward? I don't know. Yes, I'm feeling a little more like myself but, again, bittersweet. I've been so busy lately that I don't think I've had time to feel.
I started out the month with a great balloon release and picnic with my support group in Dana Point. October is Infant and Pregnancy Loss Awareness Month, hence all the events. The next weekend was A Walk to Remember at UC Irvine, where hundreds of families gather to walk for the babies they have lost. An emotional day but comforting to be surrounded by those that are walking your walk. They had music playing in the background and one of the songs from Colton's funeral kept looping, which I hadn't heard since last December. It gripped my heart and took me back to that time. Wow...powerful.
This last weekend we had the CHOC Walk. Such a fun event (although way too early in the day!). I had so many emotions standing there at the start waiting to hear our team announced. What a different place I'm in this year as opposed to last walk. We were still so hopeful last year. Colton was in the NICU and doing fairly well and we were walking for him, almost like his cheerleading squad. This year, so different. I loved that we
can keep his memory alive by walking for him, but as I stood at the start I began to tear up, missing my boy. I'm so thankful for those of you that donated and/or walked. Beyond supporting a great cause, it lets me know that you still think of and love my little boy. That means more than anything, that he is remembered.
can keep his memory alive by walking for him, but as I stood at the start I began to tear up, missing my boy. I'm so thankful for those of you that donated and/or walked. Beyond supporting a great cause, it lets me know that you still think of and love my little boy. That means more than anything, that he is remembered. As October comes to a close, I have more events on the horizon. My nephew's first birthday party, Halloween, and of course, my pending move. Life marches on but my heart seems to stay in one place, with my little boy. I understand now that while I will move forward, I will never move on. I am forever changed and I'm learning to be OK with that. Its a strange acceptance to my new reality. I am mentally bracing myself for December and what it will bring. So as I take it day by day, I look for the little gifts my Colton leaves me. I smile and cry at the same time. This is a wonderful, exhausting, emotional, life-altering journey that I'm on. I'll close this post with a quote that was passed on that I know I've mentioned before and I hold very close to me these days:
"Life isn't about waiting for the storm to pass, but learning to dance in the rain."
Until someday my little man....
Tuesday, September 15, 2009
Colton's Gifts
Today is another 15th. I am now 9 months along in my journey. This month has been hard with a lot of change in my life. The days go by fast but the feelings linger. I still miss my boy every minute of every day. I see other families with their children and hear of stories and I feel a little lost and out of place. I'm on a road that I didn't choose and steering in a direction that takes me farther away from the life I thought I would have. But sprinkled throughout these uncertain times are little gifts. Gifts that I cannot ignore and believe that Colton gives me.
I've been able to really start getting involved with my volunteer work at CHOC. I feel so passionate about this and feel that it is a way that I can take my experiences and help future families that might be in our situation. I've made great new friendships with people that I probably would not have met if I hadn't had Colton. I've found strength that I didn't know I had, but I've also found that I am quicker to admit weakness. I've learned that its OK to be overwhelmed and not always in control.
Finally, I had a particularly neat gift today. A friend, Rick Brotherton, happened to send me the logo samples for Colton's Kangaroo Club. I love them, and am hopeful that we will be able to do great things through this vehicle for families related to Kangarooing. I smiled when I saw the email this morning from Rick. Of all the days of the month for it to arrive, today was the day. Me thinks someone upstairs had something to do with that. :) I get my little gifts wrapped up in loving packages and I feel so lucky, even when I'm sad.
I love you my little man. Mommy hopes to see you in my dreams tonight.
I've been able to really start getting involved with my volunteer work at CHOC. I feel so passionate about this and feel that it is a way that I can take my experiences and help future families that might be in our situation. I've made great new friendships with people that I probably would not have met if I hadn't had Colton. I've found strength that I didn't know I had, but I've also found that I am quicker to admit weakness. I've learned that its OK to be overwhelmed and not always in control.
Finally, I had a particularly neat gift today. A friend, Rick Brotherton, happened to send me the logo samples for Colton's Kangaroo Club. I love them, and am hopeful that we will be able to do great things through this vehicle for families related to Kangarooing. I smiled when I saw the email this morning from Rick. Of all the days of the month for it to arrive, today was the day. Me thinks someone upstairs had something to do with that. :) I get my little gifts wrapped up in loving packages and I feel so lucky, even when I'm sad.
I love you my little man. Mommy hopes to see you in my dreams tonight.
Tuesday, August 18, 2009
So Blessed
Yesterday was Colton's first Heavenly birthday. I felt so blessed yesterda
y. While of course it was a sad day that Colton wasn't with us, the thoughts, well wishes and sweet touches made a for a special day. We went to the cemetary and decorated Colton's spot.
For more pictures of his birthday celebrations and cute photos of my nephew eating Colton's bday cake visit: http://www.flickr.com/photos/29664626@N07/sets/72157621955394017/
y. While of course it was a sad day that Colton wasn't with us, the thoughts, well wishes and sweet touches made a for a special day. We went to the cemetary and decorated Colton's spot. Some of Colton's Auntie's came to do a balloon release and have cupcakes in his honor. We sent the balloons to heaven with our wishes for Colton to have a peaceful and happy birthday. We felt so much love and enjoyed spending time with everyone and talking about Colton. The emails, Facebook messages and cards all meant so much. The support we feel every day from our friends and fa
mily is so wonderful.
mily is so wonderful.
That evening I went to my support group that I attend twice a month. We had a celebration there as well for Colton. The gifts I received were so thoughtful and so personal. Even though he isn't with us on Earth, he is with us in spirit and I know Colton's spirit was full of love and joy yesterday.
For more pictures of his birthday celebrations and cute photos of my nephew eating Colton's bday cake visit: http://www.flickr.com/photos/29664626@N07/sets/72157621955394017/
Happy 1st Birthday my little man. Until someday...
Sunday, August 16, 2009
Labor a year ago
Last I left Colton's story, they had stopped labor. The days following were fairly uneventful, albeit uncomfortable. After about five days on the Mag I started to have real problems. I couldn’t breathe, every breath was like a knife in my shoulders. I couldn’t sleep from the pain. I was so tired and hopped up on meds that I was completely emotional. I felt helpless and looking ahead and how many weeks, I didn’t know how I was going to do it. That day the docs told me that they wanted me off the mag as it wasn’t a long term solution and my health was deteriorating. I panicked. I just knew that taking me off the mag was going to send me into labor. I expressed my concerns but they said there was no choice and they had other drugs to try. I had been doing well and they didn’t see any reason why I would go into labor.
They took me off mag, let me up for a shower and took out the cath. I felt like a new woman! The sense of relief and instant human-ness was great. If I could stay like this for the next weeks, I would be a-ok. I had my first decent night’s sleep (save nurses checking in on me every few hours). The next day I awoke feeling like I could get some work done and had a positive outlook. About 1pm I started to feel slightly crampy again. I said something to the nurse and she insisted that my contraction monitor wasn’t picking anything up. The day progressed, I continued feeling crampy. I asked several more times to move the monitor, etc. Nothing. I ate dinner at 6 and was really starting to get crampy. At shift change my new nurse came in (someone I knew from previous night) and told her that I didn’t feel right, and didn’t think the monitor was picking up right. She moved my monitor and instantly picked up contractions. I was so angry! If we had caught this 5 hours before we could have gotten on some meds early instead of chasing labor the rest of the night.
They checked me and I was still at 3cm. Good. Put me on oral tributalene extra dose. I felt like a crack addict. I started watching the printout from the contraction monitor like a hawk. An hour goes by, no change. They inject with me IV tributalene. Really feel like a crack addict. Shaking, heart racing. They wait another hour, no change. I’m dilated to 4cm at this point. Time for the mag. They have to try and cath me twice and give me a double loading dose of mag. I instantly throw up dinner and continue to vomit in between contractions. I’m in active labor now and am gripping the bed through each contraction. This is what I imagined labor would feel like. They give me more tributalene and keep the mag drip high. They won’t give me anything for the pain, I just have to grit my teeth through it. I am amazed at how fast time goes by. I look up and its almost 11pm. They check me again and I’m at 6cm. Not good. Nurse seems to be getting worried. I’m worried, but can’t really focus on anything other than the pain. Maybe that’s a good thing? I tell my husband to call the families, because in my gut I know what’s going to happen. There is nothing left to give me at this point except more of the same drugs. I’m shaking violently, I’m throwing up, I’m in excruciating pain, I feel like I’m on crack and I can’t see straight. I felt so awful that I finally told my husband that I didn’t think I could do this anymore. I’m strong, but not this strong. The nurse checks me again (am getting no relief from contractions anymore) and says that I’m at 10cm. Stupidly I ask what that means. She says, you are having this baby. Like anything could be any more surreal at this point, it is. About 7 nurses, 3 docs enter the room. I feel like it’s an onslaught. I ask if I can have an epidural and they actually say yes. The anesthesiologist has to do it w/ me lying down. As soon as those meds were on board I felt really weird like I was going to pass out. So, they give me more drugs, load me with ephedrine to raise my blood pressure. I started to feel the effects of the epidural in a good way. Didn’t get rid of the pain, but took the edge off. Things were moving fast, they moved me into a delivery bed and told me to push. Again, didn’t have time to process, just had to act. I pushed for a half hour and nothing. The docs all left because they thought he was going to come slowly. Only took about two more pushes and he was on his way. So another mad rush to get everyone back in the room.
We had asked before what to expect. We were told not to expect much as he is very early. He wouldn’t cry, we wouldn’t hold him, etc. I think I expected something that didn’t even look much like a baby. Colton came out and instantly cried. It sounded like a cat’s meow. I couldn’t cry. I don’t know what I was even feeling at that point. I just craned my neck to try and see what they were doing to him. They were trying to intubate him and were having some trouble. But I kept hearing things about good color and high Apgar scores. They whisked him away to the NICU while they kept working on me. I think I was in shock.
We were able to go see Colton at about 4am in the NICU. I was wheeled up and we saw him in the isolette. He was so tiny at 2 lbs. (but big by their standards) but looked like a perfectly formed, little baby. Nothing appeared wrong and we were told how well he was doing. It was a strangely peaceful few hours after that. We were naively optimistic and already deeply in love with our little Colton.
I reflect on this, on the eve of his birthday. Colton came into this world, already a fighter!
They took me off mag, let me up for a shower and took out the cath. I felt like a new woman! The sense of relief and instant human-ness was great. If I could stay like this for the next weeks, I would be a-ok. I had my first decent night’s sleep (save nurses checking in on me every few hours). The next day I awoke feeling like I could get some work done and had a positive outlook. About 1pm I started to feel slightly crampy again. I said something to the nurse and she insisted that my contraction monitor wasn’t picking anything up. The day progressed, I continued feeling crampy. I asked several more times to move the monitor, etc. Nothing. I ate dinner at 6 and was really starting to get crampy. At shift change my new nurse came in (someone I knew from previous night) and told her that I didn’t feel right, and didn’t think the monitor was picking up right. She moved my monitor and instantly picked up contractions. I was so angry! If we had caught this 5 hours before we could have gotten on some meds early instead of chasing labor the rest of the night.
They checked me and I was still at 3cm. Good. Put me on oral tributalene extra dose. I felt like a crack addict. I started watching the printout from the contraction monitor like a hawk. An hour goes by, no change. They inject with me IV tributalene. Really feel like a crack addict. Shaking, heart racing. They wait another hour, no change. I’m dilated to 4cm at this point. Time for the mag. They have to try and cath me twice and give me a double loading dose of mag. I instantly throw up dinner and continue to vomit in between contractions. I’m in active labor now and am gripping the bed through each contraction. This is what I imagined labor would feel like. They give me more tributalene and keep the mag drip high. They won’t give me anything for the pain, I just have to grit my teeth through it. I am amazed at how fast time goes by. I look up and its almost 11pm. They check me again and I’m at 6cm. Not good. Nurse seems to be getting worried. I’m worried, but can’t really focus on anything other than the pain. Maybe that’s a good thing? I tell my husband to call the families, because in my gut I know what’s going to happen. There is nothing left to give me at this point except more of the same drugs. I’m shaking violently, I’m throwing up, I’m in excruciating pain, I feel like I’m on crack and I can’t see straight. I felt so awful that I finally told my husband that I didn’t think I could do this anymore. I’m strong, but not this strong. The nurse checks me again (am getting no relief from contractions anymore) and says that I’m at 10cm. Stupidly I ask what that means. She says, you are having this baby. Like anything could be any more surreal at this point, it is. About 7 nurses, 3 docs enter the room. I feel like it’s an onslaught. I ask if I can have an epidural and they actually say yes. The anesthesiologist has to do it w/ me lying down. As soon as those meds were on board I felt really weird like I was going to pass out. So, they give me more drugs, load me with ephedrine to raise my blood pressure. I started to feel the effects of the epidural in a good way. Didn’t get rid of the pain, but took the edge off. Things were moving fast, they moved me into a delivery bed and told me to push. Again, didn’t have time to process, just had to act. I pushed for a half hour and nothing. The docs all left because they thought he was going to come slowly. Only took about two more pushes and he was on his way. So another mad rush to get everyone back in the room.
We had asked before what to expect. We were told not to expect much as he is very early. He wouldn’t cry, we wouldn’t hold him, etc. I think I expected something that didn’t even look much like a baby. Colton came out and instantly cried. It sounded like a cat’s meow. I couldn’t cry. I don’t know what I was even feeling at that point. I just craned my neck to try and see what they were doing to him. They were trying to intubate him and were having some trouble. But I kept hearing things about good color and high Apgar scores. They whisked him away to the NICU while they kept working on me. I think I was in shock.
We were able to go see Colton at about 4am in the NICU. I was wheeled up and we saw him in the isolette. He was so tiny at 2 lbs. (but big by their standards) but looked like a perfectly formed, little baby. Nothing appeared wrong and we were told how well he was doing. It was a strangely peaceful few hours after that. We were naively optimistic and already deeply in love with our little Colton.
I reflect on this, on the eve of his birthday. Colton came into this world, already a fighter!
Thursday, August 13, 2009
Doing His Work
There is so much sadness surrounding a loss. There is a hole in my heart that I know will never go away, no mater how much happiness I will go on to find. I've had a hard time this week anticipating Colton's birthday, remembering my hospital stay and reliving the moments that led to his birth. I'm trying to feel the things I wasn't able to last year so I can be in the moment and hopefully continue to heal and move along on my journey. But, that sadness has brought with it some huge gifts. Today was a great example of those gifts.
I went to visit Colton today to do my usual Thursday flower drop-off. I met my friend Kristen, who's son is also buried by Colton. Kristen is such a gentle soul, overflowing with warmth and compassion. She has walked my walk and is such a source of strength. I've never been one to "need" people. I've always been fiercely independent and never liked to rely on others. Through the loss of Colton, I have had to learn to accept what others offer and ask for help. I believe that losing Colton has made me a better person. I know I will never be that same person I used to be, but that's ok. I think I'm a better version of myself. I know that gift comes from Colton. There are times when I believe he plays such an active role in making things happen.
While Kristen and I were visiting our boys today, we saw a family pull up to the baby section. This is never a good sign, because we knew that they had lost their child. As the family walked the cemetary, clearly in shock and draped in grief, Kristen and I both looked at each other and knew what a hard journey they had ahead of them. As time went by, various family members came up to us to inquire if we had children there and to share with us about their precious Hailey, who they had lost only two days ago. We spoke with both mom and dad and shared hugs, tears and stories about our children. There is an immediate bond that is felt among parents who have lost children. I walked away today from visiting Colton and realized that he is doing his work from heaven. He helps bring together a special group of people, allows me to forge new relationships with special people I would not have otherwise met. He allows me to share his story with others who truly appreciate his spirit. My little man does so much for me, he reaches his hand down from heaven and guides me.
I went to visit Colton today to do my usual Thursday flower drop-off. I met my friend Kristen, who's son is also buried by Colton. Kristen is such a gentle soul, overflowing with warmth and compassion. She has walked my walk and is such a source of strength. I've never been one to "need" people. I've always been fiercely independent and never liked to rely on others. Through the loss of Colton, I have had to learn to accept what others offer and ask for help. I believe that losing Colton has made me a better person. I know I will never be that same person I used to be, but that's ok. I think I'm a better version of myself. I know that gift comes from Colton. There are times when I believe he plays such an active role in making things happen.
While Kristen and I were visiting our boys today, we saw a family pull up to the baby section. This is never a good sign, because we knew that they had lost their child. As the family walked the cemetary, clearly in shock and draped in grief, Kristen and I both looked at each other and knew what a hard journey they had ahead of them. As time went by, various family members came up to us to inquire if we had children there and to share with us about their precious Hailey, who they had lost only two days ago. We spoke with both mom and dad and shared hugs, tears and stories about our children. There is an immediate bond that is felt among parents who have lost children. I walked away today from visiting Colton and realized that he is doing his work from heaven. He helps bring together a special group of people, allows me to forge new relationships with special people I would not have otherwise met. He allows me to share his story with others who truly appreciate his spirit. My little man does so much for me, he reaches his hand down from heaven and guides me.
Tuesday, August 11, 2009
August 11th, a turning point
You'll probably see a lot from me over the next week or so in terms of new entries. This next week is full of milestones we had with Colton and I feel the need to write about them. One year ago today was the day that I was admitted into the hospital with pre-term labor. Its strange to me that a day can be so engrained in your memory when it started out so ordinary. August 11, 2008 was a Monday. We had spent time with Donny's family the day before and I recall being really tired that evening. I woke up on Monday morning feeling "off". I couldn't put my finger on it, still can't today, but just felt kind of wierd. I worked for a couple of hours that morning answering emails and doing some tasks, but at about 10:30 am I went downstairs and sat on the couch. Just couldn't concentrate on work and attributed it to being tired from the day before. I fell asleep and took a couple hour nap. When I woke up I had to go to the bathroom. Now, without getting too graphic (those of you who are women and have had children know what I'm talking about!) my body was obviously trying to clean itself out. That was my first eyebrow raise. Just because I'd been around so many pregnant women, I had heard the stories. But I thought in my head, ok, I'm 26 weeks pregnant, this is just a fluke. As the afternoon wore on I started feeling a bit crampy, but really nothing out of the ordinary. I attributed it to the walk I had taken the day before. At about 5pm I started feeling the cramps at an almost regular interval...odd. In my head I'm still saying, its nothing, I'm 26 weeks pregnant! I called my mom and after telling her what was going on she told me that I was in labor. I told her, no way. I'd heard about labor and I envisioned doubling over pain and losing the ability to talk. She convinced me to call the doctor and see. So I made the call and the doctor said I was too early in the pregnancy to be having those symptoms so I should come on into the hospital and they would hook me up to a fetal monitor and see if I was having contractions.
Donny and I made the 5 minute drive to the hospital and even then, I expected to be told I was the crazy preggo and they would send me home in a couple of hours. The events that unfolded were shocking, to say the least. They admitted me into Labor and Delivery to check me. The monitor picked up that I was having contractions (still not what I expected) and they checked me internally to find that I was not dialated, phew! They gave me an oral dose of Tributalene (sp?) to stop the contractions and we waited about 1/2 hour. Nada, contractions continued. They checked me internally again, 2 cm dialated. Not good. They gave me a shot next to stop the contractions. That stuff makes you so jittery and your heart races. We wait. Doctor gets called in and checks me. 3cm, really not good. Once you go to 4cm you are in active labor and its really, really hard to stop. They tell me that they have to dose me with Magnesium. Lord, I had no idea what that really meant. Worst drug ever. First they have to give you a catheter because they have to monitor your fluid input/output so carefully, and in my case, because I was no longer going to be getting out of bed at all. They did a loading dose of Magnesium which immediately sends a massive wave of nausea and makes your eyes go blurry (you literally cannot focus) and you get hot and more thirsty than you have ever been in your life. They also proceeded with the Steriod shot in the butt in case Colton did come that evening. It is a 48 hour course they give to try and give rapid development to the baby's lungs. After being poked, prodded, checked and re-checked I was told in no uncertain terms that I would not be going home the rest of the pregnancy and they were going to try their best to get me to 32 weeks.
I'm telling you at this point, I really just feel like I'm in a dream. Who is this really happening to? Finally at about 2am my contractions die down and I have officially stopped at 3cm dialated where I will stay for the next week. I'm hoping and praying that the crisis has been averted, for now.
Donny and I made the 5 minute drive to the hospital and even then, I expected to be told I was the crazy preggo and they would send me home in a couple of hours. The events that unfolded were shocking, to say the least. They admitted me into Labor and Delivery to check me. The monitor picked up that I was having contractions (still not what I expected) and they checked me internally to find that I was not dialated, phew! They gave me an oral dose of Tributalene (sp?) to stop the contractions and we waited about 1/2 hour. Nada, contractions continued. They checked me internally again, 2 cm dialated. Not good. They gave me a shot next to stop the contractions. That stuff makes you so jittery and your heart races. We wait. Doctor gets called in and checks me. 3cm, really not good. Once you go to 4cm you are in active labor and its really, really hard to stop. They tell me that they have to dose me with Magnesium. Lord, I had no idea what that really meant. Worst drug ever. First they have to give you a catheter because they have to monitor your fluid input/output so carefully, and in my case, because I was no longer going to be getting out of bed at all. They did a loading dose of Magnesium which immediately sends a massive wave of nausea and makes your eyes go blurry (you literally cannot focus) and you get hot and more thirsty than you have ever been in your life. They also proceeded with the Steriod shot in the butt in case Colton did come that evening. It is a 48 hour course they give to try and give rapid development to the baby's lungs. After being poked, prodded, checked and re-checked I was told in no uncertain terms that I would not be going home the rest of the pregnancy and they were going to try their best to get me to 32 weeks.
I'm telling you at this point, I really just feel like I'm in a dream. Who is this really happening to? Finally at about 2am my contractions die down and I have officially stopped at 3cm dialated where I will stay for the next week. I'm hoping and praying that the crisis has been averted, for now.
Wednesday, July 15, 2009
7 Months
Hello my little man. Today marks seven months since you've been in heaven. What a journey mommy has been on. These months seem to just creep up on me and before we know it, your first birthday will be here. This time of year reminds me so much of you. I remember you kicking in my belly during fireworks on the 4th of July, I think you liked them. This year when I watched them, I just kept thinking of what an awesome view you now have. Times like that make me feel close to you. Oh and Colton, speaking of feeling close to you, guess what I got to do today? I got to see your CHOC family! I've been wanting to volunteer for awhile now and strangely (well maybe it was in my subconscious) I decided that I was going to go up for the Family Centered Care meeting today. I got to see Miss Marta, Miss Candice, Nurse Cindy, Nurse Roberta, one of your favorite RT's Man and many more loving faces. What a special day to see all of those people. I didn't tell anyone what day it was but it sure felt special to be there, after all, that was our home together for four months! Miss Candice brought me up to the NICU and oh, do I feel you there! Daddy reminded me, that you would be there holding my hand the whole time. Miss Candice pointed to a window and there was a mommy, kangarooing in one of your gliders. Colton, that filled my heart! You are so important, so loved and so honored every day. On a day that could have been very sad for me, I felt joy. And as time slips by and I feel like you might be forgotten, I got to be in a place where your memory is ever strong. What a gift you are, my beautiful boy. Somehow I know you had something to do with me going to CHOC today, so thank you my little man!
Until someday...
Until someday...
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