What Life is Like

Tomorrow marks the second anniversary of Cole's journey to Heaven. Two years. Eric and I differ on how that time has passed; to him it seems like it happened a long time ago, and to me it feels like it happened nearly yesterday. It is still surreal, and while I think we both have moved forward in our grief, neither one of us will ever completely get over losing Cole. But life is good, and God continues to teach, challenge, and bless us. We live our lives with hope and faith, along with big doses of laughter and twinges of sadness and fear. Hey, we're human, after all. We pray daily for another child, but as far as we're concerned, no other child can replace our precious Cole. If my mind goes to that place of thinking about living the rest of my life without Cole, it overwhelms me. But I know that once my earthly life is done, I will finally get to see my son again. How awesome will that be? It's incomprehensible.

Speaking of Heaven, I wonder all the time what Mr. Cole's life is like now. I'm certain he's just having the best time. Perhaps he takes turns sitting on the laps of his great grandparents, including the one he was named after. Maybe he's still a baby, or maybe he's a rambunctious 2 1/2 year old. I'm sure he's still cute. I know for sure Cole's life is free of pain, sadness, and trouble of any kind.

My sister-in-law, Melanie, was in town for three weeks in August. We went to lunch one day, and we talked about Cole like we often do. We pondered his Heavenly life. Melanie happened to be in town for my birthday, and she gave me the most beautiful gift. She is an incredible artist, and the gift was inspired by our conversation about Cole. I opened it, and was literally speechless.



This sketch of Cole as a toddler gives me a whole lot of joy. Not only did she capture Cole's features perfectly, but she surrounded him with things that have special meaning to us: a pinwheel, tulips (my favorite flower), and a little stuffed lamb that resembles the one we have in Cole's room and the identical one that is "with" him. And did you notice the little bird? We have two little zebra finches and enjoy birds in general. Cole looks so peaceful, happy, whole, and perfect here. What a sweet depiction of what Cole's life might be like.



Two Years

 

Today is your birthday, Cole McKee. Two years ago, you entered this world and changed my life forever. You were so tiny and sweet. You were beautifully unique, and your little spirit left an imprint on many, many hearts. We almost lost you when you were born, but God wasn't quite ready to take you just yet. He had a plan for you from the moment you were conceived, and although I don't fully know or understand it, I trust it and know it is perfect. For 4 1/2 months I watched you struggle, fight, and grow. Each day, I loved you more and more. You were amazing, and God worked some big miracles in your life. I miss you so much, my baby boy. Although your birth was scary and brought such uncertainty, YOU, my love, brought me such joy. Happy birthday, Cole. I love you.

2 weeks

 



4 months

Missing

I haven't been here in awhile, and to be perfectly honest, I feel like I am not okay. My head is swimming, and physically I am run down. I miss Cole so much, and it just hurts. I remind myself repeatedly that where he is now is wonderful, but as his momma I want Cole to be here. I miss his skin, his cheeks, and the blonde fuzz on his head. I miss giving him a bath and the funny little shimmy shake he would do when I tried to clean his neck. I was never sure if it tickled or if he was annoyed. Whatever it was, it was just one of the qualities that made Cole unique and so very special. I miss how he would pull his knees up tight when we would change his diaper. We even had to go up one size sooner than necessary to make changings easier. For a baby who wasn't supposed to have much awareness of his surroundings, he sure would let us know that he didn't like to be messed with!





I miss his fingers too. Two on each hand were fused. The fingers on Cole's left hand were contracted most of the time except for the pointer finger. We would laugh when it looked as if Cole was pointing at something or someone. It was just so cute! But those fingers were also a sad reminder of Cole's host of issues that would take him from us too soon. I miss Cole's physical presence, but if he was still here, his struggles would be too. I miss my baby, but he's okay now.



The holidays have come and gone, and they were tough for me, even more so than in 2011, the year that Cole died. I don't know. I was probably still in some kind of shock then. I am in the second year of grief now, and I have read and heard that the second year is harder. I'm beginning to think that it is true. Eric and I have six nieces and one nephew that we adore.They all live out of town, and were here with their parents for Christmas. We have been blessed and are so fortunate that since the beginning of our relationship, our families have gotten along very well, and we typically spend holidays all together even if it is just us and both sets of parents. While it was wonderful to see our three siblings and their families this past Christmas, it seemed to magnify the painful fact that Cole isn't here. My sister-in-law even said to me that when she first saw us, it didn't seem right that Cole wasn't with us. He was missing.

 

We miss you Cole,

but we know you are whole

and perfect in every way.

 

You brought us such joy

our sweet baby boy.

We want you here today.

 

We know you're just fine,

but we long for the time

to be with you in Heaven.

 

Until that day arrives

we'll cherish your life

and the memories we've been given.

photos courtesy of Keri Dummerth Photography



The Battle

September is here, and it's been a hard month so far. I knew it would be. The first anniversary of Cole's death is less than 2 weeks away, and well, that just seems crazy. And I actually feel a bit crazy right now. I just cried and cried because I miss Cole so much. We have a busy month ahead, and all the things happening and coming up are good and positive, yet I feel like a crazy person emotionally. I'm overwhelmed by the busy-ness, and my heart is still broken. We just began a wonderful project to benefit others and to honor Cole's memory, and I am thankful for that opportunity. Our journey has brought new friends into my life and has re-connected me with old ones. This is all good, right? I know it is, yet none of it would have come about if Cole had been a normal, healthy baby. Cole struggled for 4 1/2 months, then he died. And now all these "good" things are happening. I don't know if I'm properly articulating the way I feel. It's just an emotional, spiritual battle.  I ask God "why" when I know full well I may never get the answer I want. I know He wants me to simply trust him. I need to trust that his plan for me is good. It is way better than anything I could dream up myself. Everything that happened last year and everything that has come to us as a result is part of that plan. Everything yet to come is part of that plan.

I will trust. It may be a battle, but I will trust.

A Really Good Day

Yesterday was a really good day. I wanted so much to write about it yesterday, but good things kept happening and I didn't have time to sit down at the computer. After weeks and weeks of extreme heat, St. Louis is finally getting a break in the weather. It has been beautiful this week, in fact, it feels like fall! I decided to start getting up earlier as often as I can to start the day with a walk in my lovely neighborhood, which is surrounded by hills and trees. Anyone who knows me well will agree that this is a big deal as I am not a morning person. I have not been exercising as often as I should, and unfortunately I am still carrying a lot of the weight I gained when I was pregnant with Cole. I am turning 40 next week (gulp!), and I want more energy. I need a whole lot more energy. Let me tell you that on the two days where I had walked in the morning, I felt absolutely energized. It was incredible! Yesterday was one of those days.

I headed out to run some errands, which included Target and Trader Joe's. Shopping at either of those places is always a good thing in my book. On my way I decided to take a detour and go to the cemetery. The day before, the 16th, marked 11 months since Cole's death, and the heat had kept me away from the cemetery for at least a month, maybe even two. I was overdue for a visit. I have mentioned the pinwheel we have on Cole's spot before. Whenever I see it spin, I picture Cole waving to me from Heaven.  As I drove up yesterday, I could see it just spinning away, and it was like Cole was waving and saying "Hi Mom! Where've you been?". I got out and crouched down to pull some weeds and long grass that had grown along the edges of the headstone. The pinwheel was still. Out loud I said, "I really miss you Cole", and that thing started spinning again! I laughed and kept talking, telling Cole about all the people that miss him. The pinwheel would move ever so slightly here and there. I never quite know what to make of that pinwheel, but it makes me really happy. Yesterday it was like Cole was right there with me listening and responding. I loved it. The weather was similar to what it was like the day of his funeral. The sky was bright blue, the temperature was pleasant, and there was a nice breeze. It was perfect. Needless to say, this visit with Cole energized me even more. The tone had been set for a really good day.

I went to Target and ended up being there longer than I had planned (as usual). It was lunch time, so I grabbed a sandwich and headed to a nearby park so that I could sit outside and eat. I didn't see another person there, and that was fine. I sat under a pavilion with my sandwich and my snazzy new smart phone (an early birthday present from Eric), and pulled up some music to listen to. A couple of the songs I heard as I ate reminded me of God's love. I needed that. I left for Trader Joe's and stocked up. I even bought some sunflowers which suited my mood. If you are reading this and don't know what TJ's is, you should google it. Then you should go to their website and suggest they build a TJ's near you. I'm serious.

I went home and still felt all that energy. I visited with a friend in my neighborhood up at her house, then popped in on my mother-in-law, who lives just across the street from that friend. Yes, my in-laws live in my neighborhood and it is the best. I couldn't have asked for better in-laws. Anyway, I headed back home an hour and a half later. Eric was home from work. We had our usual Friday night pizza, then to take advantage of the weather, we decided to go play putt-putt. He beat me by one point. Whatever. :) It was so much fun, and a good end to a really good day.

Thank you Lord for yesterday and for every day. Thank you for all of your blessings and for giving me reminders that you love me.





Sharing

I've been invited to take part in a retreat in October for moms who have lost children. Sometimes it is just surreal that I am in that category, in that group of moms that I used to feel so sad for. I still feel sad for them. And now I'm one of them.

Right now I feel like I can go on the retreat without any problem. It still seems pretty far off, but I know that as it gets closer and closer, I'll start to feel nervous about it. I've opted not to go to any support groups since Cole died. I haven't felt like I've needed it. Eric and I have had such strong support from our family and friends, plus I've had the opportunity to talk with a few people one on one, whether in person or online, who have lost a child, and that has been incredibly helpful. Sharing my feelings in a group setting will be very different, and I hope I'll be ready.

I began filling out the lengthy retreat application today. Only 25 women get to participate, hence the application. I couldn't fill it out in one sitting. I finished the first two pages or so which included describing my relationship with Cole and the story about his death. That was enough for me for today. I had to fight back tears as I wrote about the last moments of his life. One of these days, I will write that story here. The tricky thing about my blog is that it is a mix of past and present, where I think most blogs focus on the present. I'm probably over-thinking it (like I often do with most things), but I'm still figuring out how to balance the story of Cole's life with what is currently happening in my life. I want to share so much, and I want to do it right.

To all of you who have read newsighted, thank you so, so much! Please be patient with me as I figure out how and when to share the details of Cole's story. If you have read my blog and only know what you've read here, I feel like I've left you hanging. Thanks for hanging, though. I hope you'll continue to come back .

It's Okay to Ask

It's okay to ask me about Cole.

I appreciate the thoughtfulness of friends and family who ask me about Cole's life, death, and how I am dealing with it. There are some who never ask, and well, it hurts. I try my best to give them the benefit of the doubt since I know that everyone deals with loss very differently. But really, if I'm face to face with someone, and I know that they know what happened last year, and they don't ask me about any of it, then I feel like there's a big elephant in the room. And then I feel disappointed, confused, and angry. Do they want to spare my feelings?  Do they want to just spare their own feelings? Have they forgotten about Cole? Is that even possible? I don't know the answer, and I surely never confront them. I guess at some point I won't expect to be asked all the time, and I pray that will happen sooner than later. Grief is a process though, and I don't know that I can change it or speed it up. So for now I want to be asked. Maybe I need to be asked. And if you've asked already, I really, truly am thankful.

Home

For the sake of noting another anniversary, I'm jumping way ahead in our story. On July 8th one year ago, after spending the first 10 1/2 weeks of his life in the NICU of two different hospitals, Cole came home. It was one of the greatest miracles of his life. He had proven just days before that he could breathe completely on his own. It was so unexpected and simply amazing. I was ecstatic. Eric and I spent the night at the hospital the night before going home to have a trial run with Cole. He had a very set schedule of medications and feedings, and it was our job that night to handle those responsibilities ourselves, knowing there were nurses just outside our room to help us if we needed it. We made it through the night without much sleep, and I figured we'd be leaving the next day by noon at the latest. But that day ended up being long and filled with a mix of emotions. There were many papers to sign. There was medical equipment to learn how to use. We had a quick course in CPR. The car seat had to be installed and rigged in a certain way to ensure Cole could breathe okay. And there were many, many goodbyes to the doctors and nurses who cared for Cole and for our family so wonderfully. I remember some of his nurses, who referred to themselves as Cole's girlfriends, talking about Cole going to the zoo. The zoo? I discovered at some point that in their sadness over seeing the babies leaving the hospital, they referred to home as the zoo. It made it easier on them, I guess.

I was a wreck by the afternoon; so exhausted and so incredibly anxious to get Cole in the car and go. We were finally packed up and ready around 4 pm. Cole looked so tiny in his car seat. I got in the back seat and just kept my eyes on Cole as we headed down the highway. He looked content. My heart was content. At last we would have our son in our home, in his home, free from monitors and excess noise. At last we would have a baby in the crib that had been empty for too long. At last we would be a family under one roof with some sense of normalcy.

Thank you Lord for that day. You made it possible, and I will be forever grateful.

Cole's room at St. Louis Children's Hospital

all snuggled in

Here we go!

home at last

The Beginning

I got pregnant in September 2010, about 3 1/2 years after Eric and I got married. We'd been trying for nearly a year, so of course we were very excited when it finally happened. I've wanted to be a mother for as long as I can remember. I could hardly wait to find out if the baby was a boy or a girl. I really, REALLY wanted a son. My husband is a sweetheart, and I just knew that any son of Eric's would be very sweet too. And  I wanted a son named Cole. Eric's middle name is Cole, and his grandfather, great-grandfather (I believe), and uncle were named Cole. I just loved it. The name Cole was simple and sweet.


At my 20 week ultrasound, it was confirmed that we were having a boy. I was overjoyed. We both were. But our joy suddenly diminished when we were told that the ultrasounds were showing several calcification spots. One was on the baby's heart. I asked my doctor what the worst case scenario could be, and she said it could be a marker for Downs Syndrome. She sent me to another doctor to get higher-resolution ultrasounds. He confirmed that the baby did not have downs, and we were relieved. I had these ultrasounds every three weeks from that point on to monitor the spots, and they eventually became a non-issue. At some point, we were told that the baby was small. I am 6 feet tall, and Eric is 6'2", so this didn't make much sense to me. Plus my belly was huge! I was retaining a heck-of-a lot of fluid. The doctors never seemed particularly alarmed. At the 32 week ultrasound, Cole was 3 lbs. 12 oz. He had been growing at the same rate at every checkup, though, so that was good. We didn't need to be worried. My mother's instinct felt like something was not right. I remember thinking at one point that I might have a baby with special needs. I think God was starting to prepare my heart.


On Sunday April 17th, 2011, I began having some contractions and light spotting. We went to the hospital in the middle of the night, and we spent about three hours there. I was sent home because I was not in labor, and I was told to take some medication to keep the contractions in check. I was fine for about a week. On the following Sunday, which happened to be Easter, the contractions and spotting started again. I tried to ignore them and felt if we went to the hospital again, I would just be sent home. The contractions persisted. Night time came, and I could not sleep at all. Finally at about 3 am, I woke Eric and told him we better get to the hospital. During the 25 minute drive, my contractions seemed to come about every 5 minutes, and I started to feel panicked. Cole was not due until June 9th. It was too soon. I'd had that last ultrasound a week before, so I knew how small Cole was.


We arrived at the hospital, and my water broke, but only a little bit. We were told I was going to have that baby. Tears came instantly. What was going on? I hadn't even had my childbirth class yet. I didn't know how to breathe through contractions. I had not had my baby shower. We were just not ready. The doctors decided to stop labor for at least two days so that I could receive steroid injections for Cole's lung development. Those two days were absolutely terrible. I'll spare you the details, but I don't think I've ever felt physically worse in my whole life. The medication was indeed stopping labor, but its side effects were horrendous.


Cole had a strong heartbeat just like he had throughout the pregnancy. The nurses laughed about how active Cole was. We could hear him on the fetal monitors, and I just couldn't imagine what he was doing in there. He just sounded so busy!


On Wednesday April 27th, the doctors stopped "stopping" my labor, and we all thought it would just start to roll along. It didn't, really, even after I was given pitocin. Concerned about infection, my doctor broke my water completely, and all Hell broke loose. I could feel all that fluid just gushing out, and suddenly I began having unbelieveably intense contractions. They kept coming without hardly a pause in between. I've never experienced pain like that. I couldn't see it, but my doctor said I was bleeding, and just like that, I was rushed out of the room for an emergency c-section. I was told my placenta had probably abrupted, and I might have to be put under. They didn't end up doing that, but I sure felt like I was going under, and it was scary. What happend next is a blur. I remember bright lights and many people rushing around. I remember receiving the epidural and Eric standing next to me saying, "You should see what I'm wearing." Then he said "Cole is out", but I couldn't see Cole. Instead I heard a voice somewhere behind me counting quickly. Somehow in my fog, I realized Cole was receiving CPR. I felt no emotion. I was too drugged.


In the recovery room, someone told me that Cole needed to go to the NICU at a different hospital, but I would be able to see him before he was taken away. He had stopped breathing during the delivery. He was put on a ventilator, but the doctor had a very difficult time putting the tube down Cole's throat because his airway was so small. I was told that Cole's ears were lower than normal, his toes and a few fingers were fused, his head was small, his jaw was pushed back too far, and worst of all, he was having seizures. I listened, still in a fog, and still felt no emotion. Cole was brought into my room in one of those incubator-looking beds. He was swaddled, wearing a hat, had his eyes closed, and wasn't moving much. This was not the active, busy baby I thought I was going to have, but he was here nonetheless.  He was here, and I couldn't hold him, and he was going to be sent about 10-15 minutes down the road to another hospital. It seemed like there were many people in the room with us in addition to my parents and Eric's parents. This was not how I pictured meeting my son for the first time. In my foggy, nauseated state, I reached my hand through one of the holes in Cole's bed, slipped his hat off, and stroked his head. My doctor told me much later that someone else in the room had asked quietly, "Does she get it?". Right then I didn't. None of what was happening seemed real. I'm not sure how much time passed, but it was time for Cole to leave. According to my doctor, I wouldn't get to see him until probably 4 days later.


This was just the beginning of our unexpected, painful journey with our son.

Cole, not long after his birth

Cheeks

I cried tonight.


I hadn't done that in awhile. I'd been fine all day. So what was the trigger? Facebook, or more specifically, photos of babies on Facebook. It's not that I envy the friends who have babies. I'm truly, genuinely happy for them. Those photos sometimes remind me of all the things Cole was not able to do, and tonight was one of those times. Maybe I should just block the friends to keep their posts from showing up in my news feed. Or maybe I should just stop checking Facebook. Neither of those will ever happen because I love babies (and I really enjoy Facebook). I love  baby toes and baby skin. I love fuzzy baby heads, and soft baby cheeks. My friends with babies have been given sweet, little gifts. I hope they all realize that as they are dealing with sleepless nights, feedings, diapers, and laundry. So keep the photos coming, friends. I really do love seeing your babies and everything they are doing.


Speaking of cheeks (we were, right?), Cole's were the best. Little man weighed only 3 lbs. 12 oz. when he was born. He was so little, but as he grew, his cheeks seemed to take over. They were soft, squishy, and oh so kissable.


Here are some of my favorite cheek photos:

So peaceful

I grabbed the camera since I knew his eyes
wouldn't stay open for long.

*Showin' some attitude



*One of my most favorite photos of Cole

*Snuggling with Mommy

*I posted this already, I know, but I can't help it.
CHEEKS!

*The best.

*Photos courtesy of Keri Dummerth Photography

Anniversary

Nine months ago today, Cole passed away. Last month, the 16th went by, and I didn't realize it until a couple of days later. From October until April, I was emotional on the 16th. Even in the few days leading up to the 16th of those months I felt down. Perhaps I was subconsciously aware of it. Having "let" that day go by last month, I felt like maybe everything was getting easier. But here it is, the 16th of June, and I felt sad for part of the day. Maybe it's also because tomorrow is Father's day, and Mother's Day was hard for me. I asked my husband yesterday how he was feeling about Father's day, and he said he was just proud to be Cole's daddy. He wanted to visit the cemetery today, so we did. As strange as it sounds, I love to go "visit" Cole. The cemetery sits behind a quaint little country church surrounded by trees, and it's only about 15 minutes from home. It's so quiet and peaceful there. I enjoy brushing stray pieces of grass from Cole's stone and admiring the cute little lamb we had engraved on it. We have a blue pinwheel stuck in the ground, and when it spins and spins, I picture Cole waving excitedly to me from Heaven. I just know he's having a beautiful, perfect life there. I miss my baby. Nine months is much, much too long to have not seen him. But I know he's happy. I know with certainty I will see him again someday.

Newsighted: What's in a Name

The term "newsighted" came to mind as I remember my baby boy, Cole. He was born with numerous, serious medical issues that made up a condition that doctors were unable to diagnose. One aspect of his condition that I think broke my heart the most was that Cole was blind. My son rarely opened his eyes, and when he did, usually just barely or for a very brief amount of time, he couldn't see. I wanted my son to see colors, the sky, flowers...everything, and most of all, the faces of all of us that loved him. Right before Cole died, his eyes were opened wide. They were blinking and moving. We were astounded! Did God give our son sight to see us before he left this earth? God can do anything, so that was a real possibility. What a gift that was; to see Cole's deep, dark, blue eyes for a sustained amount of time. We knew he was ready to leave us and was going to be okay. Now that Cole is in Heaven, his little body is new and perfect. I feel such joy when I think about all that Cole is doing and SEEING!

Not only does Cole have new sight, but so do I. Losing a child has changed the way I view life, death, God, my husband, you name it. Cole's life was short, but it was full of purpose. I may never know the full extent of God's purpose for Cole, but I know for certain that Cole had an impact on many, many people. I love this quote that I came across on a baby loss website, "There is no foot too small that it cannot leave an imprint on this world".

So true.

photos courtesy of Keri Dummerth Photography

UPDATE 2017: After nearly six years of extensive research, we received confirmation of a diagnosis. Cole had a rare genetic condition related to the RTTN gene. About ten to twelve cases have been reported in the world, and because it is so rare, his case will be reported in a medical journal and entered into a gene matching website (think match.com, but for genetics). This information could potentially help doctors, researchers, and families with children with the same symptoms and characteristics who don't yet have a diagnosis. This is just another way God will use Cole's life for good.