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.

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!

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.

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...

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 makes me happy to remember those days. :)
Until someday, my little man....

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.

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....

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.