The Day Coen Was Born

It was a Sunday evening.  Vince and I were cozy and settling into a relaxing, quiet evening sitting in the living room, warmed by the crackling fire and just relaxing for a change. Our first grandchild, a grandson, Coen, was going to be arriving the next day!

Our daughter-in-law, Lindsay, was overdue by a week.   Ryan, our son, called to tell us they were going into the hospital that afternoon because Lindsay had an unexplained rash. Ryan insisted she go in. She is a nurse, so she was reluctant as she didn’t think it was severe enough. Ryan called that afternoon with the update that they would be inducing labor the next morning. They were excited to meet this guy finally, and so were we!

Just as we were getting ready for bed, we got another call from Ryan. He was weeping; I said, what is it? He spits out somethings wrong. I heard him but made him repeat it because I couldn’t believe it. He said, “Mom, there’s something wrong with the baby.” Immediately I said, no! I pounded my foot on the floor and began to cry out loud. I could not believe it! My mind just raced, and I said, “no!” This type of behavior is highly unusual for me.  I remember stomping my foot in disbelief while saying no! no! no!

Ryan explained that the doctors took an ultrasound and discovered something was wrong. Coen had a large blood pool on his brain, his heart was enlarged, and there was a considerable risk that he would not live through delivery. I sobbed and sobbed on the phone with Ryan while struggling to put my shoes on to get to them. Vince took the phone from me, and listened to Ryan’s voice, repeat what he told me. Vince was calm and said we would be right there. Ryan said no, just come in the morning as planned. It was so difficult not to be with them, but we did as he requested. I sobbed all night, and Vince comforted me, and we prayed. Faith has always been a big part of our lives, but this would test us thoroughly. 

We were there first thing in the morning. I put on the brave face and tried to be strong for Ryan and Lindsay, but I melted into tears when I looked into their sad eyes. The Doctors were not at all hopeful. By 8:00 am, there was a room full of people. Lindsay’s parents were there, her childhood friends and my youngest son, Rick, Vince, me, and many doctors and nurses. 

Her OB Doctor was a Christian man and asked if we could all pray.  I was relieved by that request.  Everyone in the room, our family, Lindsay’s family, and close friends gathered in a circle around Lindsay’s hospital bed. The Doctor leads a heartfelt prayer for Coen, Lindsay, and the family. It was a moment etched in my mind.  I can imagine the picture and wish there was one.   All these people circled her bed holding hands, and our heads bowed, offering Lindsay and Coen all of our love, hope, faith, and strength. We all cried together while still holding hands, and it was hard to let go of each other. They wheeled her bed away quickly, and we all wiped our eyes and waited quietly—some of us in prayer, some of us pacing and nervously chatting.

That morning there were specialists and nurses around and in the room planning, preparing, and speaking very softly about what?  We didn’t know.

Lindsay hadn’t had an ultrasound past the five-month mark as everything found then. It was her first pregnancy, so she didn’t know if things were abnormal or not.  She experienced some things but just thought they were a normal part of the pregnancy.  They discovered no amniotic fluid, and the baby would have other complications because of that and many different life-threatening health issues.  We would find out more after the cesarean delivery if he made it.  That was a big if.  They weren’t sure little Coen would even be able to take his first breath.

The tension was incredible when they wheeled her off. I wanted to hug Ryan and comfort him, but I was not intense; I just cried and melted every time I looked at him. Oh, the pain I felt for him. His problem was my pain. Vince was solid and was able to hug him and hold him without breaking down. He needed that; they both needed that. I wish I could have given him that.

Later on, I shared with Ryan where my uncharacteristic behavior on the phone arose.  Before Coen’s birth, I knew of a child born to a heroine using father and meth using Mother. The baby was born perfectly beautiful and healthy.  The grandmother of the woman who gave birth was sure her daughter had used so they did a blood test, and it was in the child’s blood. The grandmother was able to take the beautifully healthy, non-addicted child until her daughter got help. She did get help and never used it again. 

Because I knew this story that two drugs using parents had a beautiful, healthy child, I was angry. How can this be? I asked myself this over and over again.  Ryan has never drunk a drop of alcohol or done any drugs.  Lindsay was also very responsible and healthy.

It’s one of those unfair situations that made me question everything.  There was no reason for them to have all these difficulties; they did and have done everything right. 

This was the first and last time I questioned God about Coen.

Ryan made a decision very young in life that he wouldn’t drink or ever do drugs. It wasn’t a religious decision, just a logical one. He’d seen alcoholism on both sides of his family and knew he didn’t even want to try it. By now, he’d also seen kids at school make fools of themselves while entirely drunk. He gained a quick reputation of the guy to call if you need a ride and couldn’t get your folks. He still has that reputation. They are both responsible, caring people.

We waited a long time in Lindsay’s hospital room to hear something, anything.  Please, Lord, please let him be okay.

Coen’s arrival. I still have a hard time remembering his actual birthday because of the dramatic entrance.  This birth wasn’t your typical wait, then celebrate. They told us that it would be so hard on his already taxed body. He would likely not make it.   It became a very stressful, nail-biting, emotion-filled, terrifying day.  Will he make it? Please, Lord, let him make it.

Ryan came back to the room where we were all waiting nervously for the news. He was smiling, that’s good! 

Ryan came into the room wearing scrubs, looking like he was playing a Doctor in a soap opera. One hand on head and one hand showed us pictures on his phone and said, he’s perfect, he’s just perfect.  Oh, and he was, he was just a perfect little precious baby, on the outside. 

Lindsay told us that the Doctors allowed him to take one little breath, and he moaned.   They intubated him immediately.  But, He made it!  They weren’t sure if he would be strong enough, but he was, and it was just the beginning.  There would be a long road ahead.

All we could think about was that he’s here, he made it!! Thank God!  The Doctors didn’t know he would make it through the birth, but he did.  We thought it’s going to be okay!  We were so relieved but had no idea what was to happen next. 

I wish I could say that the Doctors were hopeful.  I wish I could see it in their eyes.  I did not.  In my heart, though, I was.  Maybe I was very naive, but I have always been very positive in general as a person of faith.  I have understood the power of being positive.  As an athlete, I knew the power of being positive and just in my everyday life.   I knew I could rely on something bigger than myself.  If I didn’t have faith, I don’t know how I would have managed through it in a moment of crisis like this. 

You could see the worry the sadness, and concern in even the most seasoned doctors. Maybe it was because Lindsay worked as a nurse at this same hospital and her Mother was currently a NICU nurse for 30+ years. These doctors knew her well, and they were sad and scared for the seemingly inevitable bad news that they were sure they would have to deliver.  We found out that he had a blood pool in his little brain. He had a rare form of a brain aneurysm called Vein of Galen Malformation, the only child in Spokane to have this.  Because this took so much of his blood, his organs were starved of blood and failed.   On top of that, he would likely be blind.

Ryan and Lindsay saw him briefly, took a few pictures, and immediately, the nurses took Coen to the NICU. We knew he would have to have brain surgery for the AVM, the blood pool in his brain the next day.  But it wouldn’t be here in Spokane. They had to find a neurosurgeon willing to do it.

They were very concerned about his enlarged heart and his overall health. He wouldn’t live long in the state in which he was born. They moved quickly, calculating, and calm with skill, fear, and determination.  At the same time, they spoke to the kids about the end of life care.  It was very confusing.

The doctors called in specialists. The facts were that he likely would not live through any surgery because he was so sick. We had two neonatal brain surgeons decline when asked if they would repair the ventricles in his little, perfectly shaped head. They didn’t feel the outcome would be positive, so they declined. The staff finally found a doctor in Portland at OSHU. Dr. Barnum. He was our Godsend. He said, yes! He would take this complicated surgery on even knowing there was little chance. He did not have a big ego. It was worth the risk to him and obviously to all of us! We already saw him, he’s here, and he looks utterly perfect on the outside. His head of perfect black hair, beautiful silky, hairy olive skin. His long skinny legs, and slim arms, long beautiful fingers, and those tiny nails. He’s beautiful. He looked just like Ryan did when he was born.

It was so hard to believe that he may not live by looking at him.  Ryan’s excitement about his new son was so hopeful. We’ll never forget him saying over and over, “he’s perfect” “he’s perfect” It was enough for all of us to be happy for a moment. We were in love with him and ready to do anything to keep him!

Ryan and Lindsay’s good friends Nate and Megan had a healthy baby boy the same day Coen was born. The hospital was very careful and kept Lindsay from seeing their baby. At the time, it was odd and didn’t make sense. We later understood they were protecting her from the likelihood of the loss of her baby. 

The staff had to prepare Coen for a life flight helicopter ride to Portland, OR from Spokane, WA. A team of specialists arrives, a respiratory therapist, a pediatric nurse, and a few others. I was unsure of their titles, but they all worked slowly and meticulously to arrange Coen in the isolate with all the life-saving devices he needed to make the trip. That entire crew looked very young to me but very capable. They were focused and moved around him with each other, like a very well-choreographed dance. The pressure they must have felt working on the tiniest little helpless patient. I wondered to myself, how can those people live with such a stressful job?  A few of them looked at us from time to time. We were in the hall watching the dance. They could see the fear in our eyes when they glanced over, and I’m sure that had to be intimidating.  We were thankful for all of them.

It took several hours to finally get him ready for the tense 46-minute flight to Portland’s OSHU. I remember one of the Doctors being very frustrated with the length of time it was taking to get him ready to go, but he didn’t interfere with the process. I’m glad as they were under enough pressure. Ryan had gone home to pack a bag; he would be flying with his sweet baby boy. Lindsay delivered cesarean and couldn’t go. She stayed for several days, and her father drove her to Portland when the Doctors finally released her. 

It was time to leave for Portland. They started to wheel him away to the rooftop. He was full of tubes and gear, and you could hardly tell there was a baby under all of that. We were in the waiting room and heard the double doors open. There was a staff of at least 5, Coen in the portable isolate, and Ryan with his bag. I hugged Ryan and sobbed and sobbed. I couldn’t keep it together; I am crying now, thinking about it all over again. This could be it; it could be around just like that. How would Ryan cope if Coen didn’t make it on the flight? So many scary things went through my head. I said to the last guy out the door, please take good care of him. He said, we’ll take good care of both of them, and I sobbed out loud. Vince thankfully put his arm around Ryan and walked with them as far as they would let them go. He didn’t say anything to Ryan. He just gave him all of his love from his stronghold around Ryan’s very slim shoulder. I watched them walk away and toward the outside doors and stood in the hall and sobbed and sobbed my head in my hands, shaking my head no.

I knew there was always hope, but at that moment, I couldn’t help my son or his baby.  I had to rely on my prayers to comfort him and protect Coen.

We were leaving the hospital for home, exhausted and confused. We needed to pack and drive to Portland. I’ve never cried so much in my life.  We talked to Lindsay’s parents on the way out.  Bonnie, her Mother, having had firsthand knowledge of very sick babies from taking care of them in the NICU for so many years, said, “It’s not good” and shook her head no.

I told Vince, “Why doesn’t anyone have any hope” on the car ride home?  I called my sister Chris; I said the same thing while sobbing and incoherent.  I was hysterical, and she never had a call like this from me before or after.  I said over and over, why doesn’t anyone have any hope?  Chris lifted me with everything she had and without complaint went about the horrible task of calling the rest of the family whom there are many and giving them the news.  I asked that she just ask them all to pray.

Vince had earlier in the day gone down to the gift shop and bought a beautiful blue rosary. He’s Catholic, but I’m not. I loved that it was so unique and so thoughtful.  We both knew all we could do was pray.  A rosary was something I could hang onto.  In my pocket, around my neck, I found myself clinging to it.  He also gave me a book on how to pray the rosary, which was needed. I’ve always prayed. I’ve always been faithful but found that praying the rosary, while very different for me, was amazingly helpful, peaceful, and meaningful.

We went home and got ready to drive to Portland.  Lindsay’s Mother would fly there, and we would meet later that evening.  Vince was working in Seattle as he had for years.  He drove me to Tri-Cities, where we met my sister Chris, and she moved the rest of the way to Portland.  Vince went back to work in Seattle, saying goodbye with a long hug and not saying much.  We would lean on our faith, and that was the only thing we were confident in.

At the time, I had a cast on my right foot and wasn’t able to drive. I had scheduled foot surgery and was sure I would be out of the cast before the baby arrived.  It didn’t quite work out that way, so there I was with a cast and a scooter. I needed to rely on others to drive me and help me a bit.  Something I’m not used to or comfortable with. Vince went back to Seattle for work.

My sister Chris dropped everything to be there for all of us just as she has her entire adult life.  She offered to drive me to Portland. We got to Portland late, and it was dark.  We were using a navigation system, and it wanted to drive us off a cliff!  We finally found the hospital.  It was at the top of a giant hill.  We saw Ryan right away and hugged each other tightly.  He was tired, but still very positive and upbeat.  Bonnie was there too.  I know she was asking all the right questions of the nursing staff and Doctors.  I was so thankful she was there.  Chris was able to go in and see him that night.  I didn’t because I had a bit of a cough, and it wouldn’t be smart to subject him to any outside germs. When she came out of the room, she glowed with her beautiful smile and was so happy she could see his sweet face.  The hospital let Ryan stay in a little place just across from the NICU unit.  The rest went to a Hotel nearby but hardly slept all night.  It was a very foggy, unreal experience between the tears and disbelief, and it continued like that for days.  He would have his first brain surgery the next morning.

We braced ourselves that morning for his surgery.  The Doctors seemed confident, but I could see by the body language of some of the staff their subtle lack of confidence.  Minimal eye contact with us but suited up ready to face the challenge. 

Several hours later, they emerged.  It had been successful, and they were pleased with the result.  They explained that the next day there would be yet another surgery.  This first one left him very swollen and puffy.  There were so many tubes and cords around him.  He had great loving, thoughtful care from the staff that we will always be grateful for.  I still couldn’t see him, but Chris went in again and returned to her usual cheerful self, providing me with the highlights of how he looked.  Bonnie was very quiet, and I know she was taking in all the details and watching as a Mother would.  So much of what they talked about went right over my head, but she and the staff had very detailed conversations.  Her expression didn’t change much, which made me understand that there was still very little hope, but they would persevere and do their best.

That afternoon, by surprise, my good friend Anne Gleaton sent her beautiful sister Maria who lives in Portland, personally deliver a basket of snacks and food and refreshments that only the most creative caterer could have dreamed up.  Anne has been the dearest friend for many years. She’s a dedicated and sure friend who organized this from afar, knowing just what we needed.  In this state of confusion, fear, and lack of sleep, no one thinks of eating.  It’s one of the most remarkable things someone could do.  It helped us so much.  No one wanted to leave the area.  Not even to eat.  Ryan’s friend from high school came to sit with us.  Kyle Sharpe.  He tightened things up for us and played a funny joke on the doctors that I’m not going to go into, but I’m sure they were confused.  He made us laugh, and we hadn’t done that in days.

Chris had to leave and go back to work. That was difficult. She didn’t want to leave us, and I know she cried the entire drive home.  I spent the time praying and wheeling around close by on my knee scooter. Vince and I communicated back and forth during the day as well. He lifted me with a positive message or saying. He was also praying constantly. He asked his entire family to pray, and they spread the word. His brother, Ed, started a prayer chain in Oregon specifically for Coen. I was only able to speak with Chris and Vince. I couldn’t keep repeating what was happening. So, I relied on them to tell others and keep them up to date. Everyone wanted to know what was happening, they tried to help, but nothing anyone could do except pray.

 Ryan and I didn’t look at each other very much. We just couldn’t. I wanted to be strong for him, but for the first time in my life, I just couldn’t. We knew we would just melt if we did anything more than surface glances with a 1/2 smile or a quick hug or nudge.

 Ryan’s friend from high school came to sit with us.  Kyle Sharpe.  He tightened things up for us and played a funny joke on the doctors that I’m not going to go into, but I’m sure they were confused.  He made us laugh, and we hadn’t done that in days.

Day 2 In Portland

We were preparing for his second surgery, which would be the very next day in the afternoon. I can’t even explain the level of scared that we have been in for so many days.  Very little sleep, nerves just thrashed, and it just continued for so many more days.  Lindsay still hadn’t arrived yet, and I’m sure it was terrifying and sad for her not to be there for her child.  When they did finally release her, I thought it was too early.  She was in a lot of pain, and then she had to drive 5 hours to get to Portland.  It was so hard for all of us both physically and mentally.

But what we didn’t know was that this his third day of life would send us to our knees.

On this day the Doctors will open his brain up again and insert coils and use super glue to shut down the blood supply that was causing the problem.  During the surgery, they lost a bit of glue in the process, which forced Coen to stroke.  I will never forget this next conversation or how I watched it play out in front of me.  As we were sitting in the designated area, a Doctor came out and grabbed Ryan, and escorted him toward the surgery unit with determination and speed that I hadn’t seen before.  Another Doctor came directly to Bonnie. I was sitting a few chairs away.  The Doctor used many terms and words I didn’t understand.

Bonnie followed up with a lot of questions that again made no sense to me.  All I heard was a stroke.  Ryan was gone, and I was trying to decipher this conversation that was going on next to me. I could easily read the body language and it wasn’t good.  At the end of the conversation the Doctor said to Bonnie  “Oh, Bonnie, you just know too much” She knew what questions to ask but the answers were not positive. Bonnie was quiet and didn’t say much after only that it wasn’t right. I felt like I was going to pass out.  It’s the most helpless feeling when you can’t do one thing to fix anything that’s going on around you.   My faith has never been tested so much. I prayed and held my rosary.  Oh no, I thought to myself, they took Ryan back to say goodbye.  I hated that he was alone again in this situation.  He came back out after a while and was exhausted. His body was limp from the experience of the emotion and all the crying.  They were sure this was it. This event will be the one where he will leave us.

But several hours later, Coen was still with us and was going to fight.  Fight he did.  Over and over and over.

 

Lindsay finally arrives!   Her father drove her from Spokane, and her friend Becca accompanied them. It is evident from the moment I see her that it has been a difficult trip.  She was in pain.   These next days we waited for Coen to gain strength.  His little head was so puffy and swollen with a tube in his nose and gauge around his precious little face.  Lindsay hardly recognized her baby. He was so swollen.  It was a good reunion, and she was so relieved to see her baby. Lindsay’s Mother had been a Godsend while there in her place, asking all the difficult questions and understanding more than anyone else there. Bonnie was relieved Lindsay was finally there too. 

The Ronald McDonald House would be where Ryan and Lindsay would be staying for the next several weeks.  What a fantastic organization.  To have never used or needed a place like The Ronald McDonald house. It came as such a blessing.  Ryan and Lindsay were comfortable there, and it was a positive, clean environment to go where they could get some rest on a nice warm cozy bed and eat and engage with others.  The NICU was a place filled with equipment, Doctors, Nurses, and scared-looking people. We were told not to speak to the other parents or connect in any way.  It’s an unusual thing, especially for me, because I love connecting with people and understanding their story.  I know why they do it because some, perhaps, some will be taking their babies home, and some will not. It’s still odd and unusual, socially.  We were all there, fighting for the same thing.  It seems we could possibly help one another.  There were a lot of rules and people watching. Coen’s isolate was placed by the window.  There could only be two visitors at a time in with him at once. So when the kids weren’t there, one of us was.  My friend, Pammy Cha Cha Chambers, lives in Beaverton and picked me up a few nights in a row from the hospital and took Bonnie and me to the Hotel we stayed at nearby.  She offered her home, but it seemed too far away for me.  She helped me down the concrete stairs as I was still in the cast.  As I scooted down the stairs on my butt, she carried the scooter for me.  There was no handicapped access or room. Funny how now we are very aware of handicapped areas and access. She offered me so much love and support. She is someone I know I could call with any request, and she would make it happen. She would find a way.  Pammy is a true blue lovely woman who I am so blessed to have in my life.  She’s the perfect friend for me.  She isn’t needy; we can pick up where we left off.  She’s not offended if I don’t call her back or vice versa.  I love her.  She’s been a shining star in my life for many years and has come to be a big part of Coen’s life as well. She has a special place in my heart for so many reasons. I hadn’t seen her in years and not talked to her much.  But that’s the type of girl she is.  She shows up.  She’s showed up for our family and me. 

Coen was recovering from the stroke at the last surgery. They were surprised that he was doing okay.  It wasn’t up and down it was just the same. They wanted him to become stronger for the next surgery he would eventually have.  They wanted to do this within a few days. I thought about how hard it would be for his taxed body to have yet another surgery.

When Coen was born, I was a Human Resource Manager for a smaller company in Spokane.  We recently had two rounds of lay-offs as the economy finally had hit us. It was an unfortunate thing to do.  These folks worked hard, and it was a very close-knit group. It’s one of the most challenging tasks as a Human Resource professional.  My favorite part of the job is recruiting and finding great talent to join a team. To lay people off after hiring them was very difficult.   You really can’t show that emotion. It just has to be done somehow with some resources, grace, and empathy.

There was a lot of support at work to do whatever I needed and stay as long as I needed for Coen and my family.  My boss, David, who I admire very much, is a lovely, kind, hardworking guy who loves his family and enjoyed the challenge of his job as the CFO.  He was the perfect boss; he was an ideal leader in my eyes.  Do your job, and he stayed out of the way to let you do it.

It had been several days now, and time for Coen’s next surgery.  One thing we were confident in this time was that now we knew he was a little fighter.  He was strong enough again to take on the third surgery.  This surgery would entail putting in a shunt in his brain that would drain any fluid through a tube wrapped around his little chest and into his tummy where it was coiled.  They coiled it, so as he grew, it would unwind and grow with him that way, he wouldn’t have to have any other surgeries to lengthen the cord.  The shunt would have a little chip in it that was programmable.  This was when Ryan started referring to him as his little robot. It was a term of endearment. 

I was waiting for Vic and Bonnie to pick me up at the Hotel to the hospital that morning.  It was a gray and rainy Portland day. I’m still on my scooter. It’s cold and windy as I waited in the hotel parking lot for my ride.  I get a call from David, my boss.  He asked me how it was going, and told him that Coen was going in for his 3rd brain surgery this morning.   He told me he had bad news for me and that the owner and CEO had decided to lay me off.  I was shocked and in disbelief.  Yes, the company was having a hard time, but I didn’t see this coming.  He felt horrible, and I cried.  Talk about raining mud!

I met up with Lindsay’s parents, and we drove to the Ronald McDonald house to pick up the kids.  I stayed in the car because there were too many people to shuffle into the house and their room.  It was taking a long time for Lindsay to come down, so Ryan came outside.  I had the car door open to breathe.  Ryan said right away, “what’s wrong?” I said “nothing” I did not want him to know what was happening, and I was doing everything in my power not to show the shock of this new news.  He wouldn’t let it go.  I finally gave in and said I got a call this morning, and I was laid off from work.  Ryan used a slightly different statement he said, “It’s raining S@&^ on this family.”  I told him it was nothing to worry about, and we would figure something out. 

We all drove to the hospital and saw Coen.  They took him into surgery, it was another long, stressful day, but it was successful.  This baby had just endured his 3rd brain surgery by the time he was two weeks old. Our prayers were being answered over and over again, and we were feeling a little bit more confident.  While a bit more confident, we also had to be very aware because he was never out of real danger.  

In this next week, as he lay there helpless and full of every tube and beeping equipment, he opened his eyes now and then.  He would stare right at me like he already knew me.  We placed the rosary on his isolate right above his head.  When it was my time to see him, I prayed with him and stared at him and told him how much he was loved and meant for us.  A few days into his healing, Lindsay noticed some ticking movement, which we found out were seizures.  This felt like yet another setback. But it wasn’t entirely.  He was getting better, he was responding to medicine, and he was healing. 

On this particular day, the kids went for a meal.  They decided to walk downtown for dinner. It was good for them to get out and breathe some fresh air. I was with Coen by myself for a few hours.  It was another rainy day.  There was a new nurse who was in his area that I had never seen before.  She was older and stiff. She did not smile or really even seem to care. She just did her job. Every other nurse we met was warm hearted and caring, and very good at their job. 

I was praying with Coen and talking with him and didn’t really pay much attention to this new nurse because I could feel she wasn’t warm. She came toward me and said she had been on vacation, and this was her first day back.  She looked at me and said.  “You shouldn’t get so close; you won’t be taking him home.” 

Yes, it’s shocking, yes, it’s unreal, yes, she likely could have gotten into a lot of trouble, but honestly, her words didn’t even affect me.  I said to Coen, “you don’t listen to her,” “You are strong” “She doesn’t know you” I just ignored her and kept talking with him.  My words turned into prayers, my hands on his head, praying as I have never prayed before, begging that God let us keep him. I was thanking him for this gift of Coen.  Several minutes into this, Coen opened his eyes wide and stared at me as I will never forget.  We connected so profoundly and deeply with our eyes and our hearts.  I looked outside the window with tears streaming down my face while quietly crying.  A rainbow appeared in the sky on that hill and I knew that was a present just for us from God. It had been another grey, cloudy, rainy, miserable day.   Then, just like that, the clouds broke apart, and the rainbow appeared.  I knew right at that moment this was it.   He is our miracle baby.  He is going to survive, and we will take him home. Today, Coen talks a lot about rainbows. It always brings me back to that special day in that hospital when he does.

Just over three weeks and Coen took breaths off the ventilator and worked to breathe on his own.  Some of the tubes were going away.  Rick, Ryan’s brother, and my youngest son arrived during this time from Seattle and spent time with Coen and supporting his brother. There is a picture of the two of them on either side of Coen not talking to each other just staring at Coen. I heard they were in that position for a long time. 

For the first time since Coen was born, Ryan and Lindsay were able to hold their baby. This time they let us all be in the nursery.  It was special for sure.  Another memorable moment etched in my head.  I watched each of them getting a turn to hold him.  While they sat in an oversized rocking chair, adjusting pillows and navigating cords, so they didn’t yank any of them from their precious baby. It was a very emotional moment. They were in love and finally had a little hope. The doctors informed us that Coen would likely never eat or swallow.  He would never walk or talk.  While the news was very discouraging, they just didn’t know.  He was a miracle child.

Before we knew it, he was making great strides.  They were taking out more tubes, and he was making daily progress on his own.  They were soon able to fly home to Spokane NICU, where he would spend three more weeks.  At the Spokane hospital, he would learn to eat and breath entirely on his own, breastfeed and bottle feed.  After being so sick when he left three weeks prior with virtually no hope of his survival, he was back! The staff was so delighted for everyone in our family.  Not only that, he made it, but he was thriving!  He was right back where he started, and he indeed was a miracle in all of their eyes and ours for sure.  I had witnessed a miracle with my own eyes, and I know the power of God and prayer.

No-one stopped praying for him.  Everyone dedicated time and enlisted other prayer warriors for him. This is a gift that we will never be able to repay. I know there are still a lot of people that pray for him to this day.

Up until this point, my faith was never as deep or convicted as it is now. Yes, I am and always have been a Christian…..my whole life. I had an amazing foundation of faith very young. As a child, I understood things to be of God, and I knew deep in my heart about his love.  I have believed in God my whole life but never as deeply as I do after experiencing this miracle. During my late 20’s and most of my 30’s, I was in constant overdrive running my life without a lot of thought or putting little if any prayer into it.  I took care of my boys and worked in a sometimes stressful career as a Human Resource Manager.  I used to work a lot and sometimes weekend jobs to make ends meet. I had to stick to the task, get this done, get that done, get the boys dinner, get them in bed, read a story, put on a cassette book story for them, and worry about money.  Get up, make breakfast, lunch, and do it over and over again.  I would fall into bed most nights right after they did with pure exhaustion. Looking back, I wish I had been more reflective and not in such a hurry about everything and worrying that I got everything done.  I now know how to do that.   I look back at those days when I was trying to keep it all together, and while you can’t change anything, I wish I could have been a little easier on myself.

In the next few weeks, there was far less fear about his overall health.  His body had reconfigured (This amazes me) and was healing as no one dreamed, expected, or even thought possible. 

Coen continued to progress, and just before Thanksgiving, he came home.  (insert pictures of Coen on a turkey platter)  He was content, never fussy, slept a lot.  Those first weeks were so great holding him and getting to know him.  He is so loved, and it was the best Thanksgiving of our lives!  These good days continued, and he started cooing and talking and connecting and noticing things.  Albeit as time went on, he was a little behind, but who cares?  He’s doing a lot of the things that they said he would never do.  And, more significant than anything,  he is with us. 

I remember getting a call from someone I didn’t know very well.  She left me a phone message.  She said I’m sure you are very angry, and you have a right to be.   It was odd.  I wasn’t angry, and it was strange that someone I hardly knew, although trying to reach out and be kind, just hit me the wrong way.  I wasn’t mad.  I was glad we all were.  Whatever challenges his going to have, we were going to face them together.  That’s what a family does.

I was applying for various jobs and loving my days taking care of Coen.  Lindsay went back to work in the coming weeks as a nurse working graveyard at Sacred Heart.  Ryan was working for KSPS television station.  Not long after Coen was born, he landed one of his dream jobs in the marketing department for Spokane Community Colleges making videos and taking photos for marketing and advertising.  At Christmas, KSPS took up a donation for Ryan and Lindsay, and it was overwhelming for him.  He couldn’t believe the generosity of the people, some he didn’t even know.  Most people are so good and generous.  I know this is something that will always stay with him.  It made an impact on them, and they were so grateful.

Vince was still working in Seattle and coming home on weekends as he had done for more than 15 years now.  But then he got a call right after Thanksgiving that he too was laid off. Vince was working construction, and the job he was working on was canceled.  In his usual style, he networked quickly and landed another job with Boeing.  The hiring process took some time, but it wasn’t long before he started working again but still in Seattle.  During that time of uncertainty, it was stressful and scary to both be laid off at the same time.  But as of today, I can say I had never had the level of stress I had when Coen was going through his first weeks. Even though a lot has happened to our family and still things will happen, I have let go of much of it.  I work hard to put life in God’s hands now.  It’s so much more comforting.  Coen’s life has put our lives into perspective.  So much STUFF doesn’t matter anymore.  We know what is essential, and we focus on that.

His First Christmas

It was simple and quiet, and we were just so in love.  We were all focused on his beautiful, happy face.  He was looking at us and connecting and cooing, and it was beautiful.  So much to be grateful for, and we were.  Coen was already doing more than the Doctors ever anticipated, and he would continue to amaze us with his ability and understanding.  It was one of the more peaceful, quiet, and laid back Christmas’s that I remember.  I was content and full of thanks for the gift of Coen.  He was and has been the most precious gift of all.

He loved to be talked to and held. He was curious about that four-legged animal who continued sniffing him and was very protective of him. Her name is Lula, and she loved him as much as we did. We held him so much then.  There are so many pictures of all of us just cuddling him.  We were all bonding with him in our profound way.  Coen was making significant progress, was so sweet and easy.  He never cried.  He had a great appetite and was growing like crazy.  His little shunt protruded out on his head, and sometimes people would ask about it.  We just said what it was.  He also leaned over into a C shape if we didn’t prop him up.  He didn’t have the strength to hold his head up straight because of the stroke.  People always said something about that, too, when we were in public.  I would try to position him with a blanket up and around his shoulder to keep his head propped up while we would stroll around.  One thing people always said in addition to “wow, he’s leaning” “Wow, he’s such a beautiful baby?” He was beginning to make people smile even then just a few months old. 

Intervention: Learning New Things

Coen’s first interventions after coming home were with the Spokane Guild School & Neuromuscular Center.  This organization has made such an impact on his life and ours.  They worked on Physical therapy, Occupational therapy (playing), speech therapy, and social skills as well.  I can’t begin to explain the debt of gratitude we have for them.  Initially, they came to the kid’s house and did therapies at home.  After some time, we took him into the school where he saw the most loving, caring, and professional therapists that challenged him and helped him with all those necessary skills that we were told he would never have.  They showed us how to help him and work with him on our own.

We listened and learned and were involved with them every step of the way.  Because of this early intervention and all of these skills he learned, I feel that is why he is thriving so well today.  He learned to hold his head up strong.  He didn’t slump into a C shape. He learned to lay on his tummy and move. He learned to play, eat, and speak.   He learned to stand up in a little walker.  They taught him so much in very little time.  The only sad thing is that they graduate the children out of the school at age 3.  When it was time to go, it was scary and oh so sad.  The relationship that developed between all of us with them was very tight, unique, and a special one.  As with many things, change is difficult, but we moved forward but will NEVER forget what they gave us.

 The Guild School, now Joya is an organization that Beedlebug will be contributing part of our proceeds to.  What they have done for the children with needs in and around this community is immeasurable. 

Lindsay is now a nurse there. 

2nd Birthday!

It was a huge celebration!  I’ve never had a party with this many people for my birthday.  I loved it!   It was at our home, and it was so much fun!  We all celebrated Coen and his accomplishments so far.  People came to honor him and see the progress he has made, and celebrate this miracle! Many of the people who cared for him and prayed for him and simply love him were there.

My Mother was very sick when he was two, so I drove to North Dakota in her last days.  I was there for a week, but after my arrival home, she passed the next day.  It was on October 31st.  Coen turned two just two weeks before.  On October 31st, he crawled for the first time.  He went a long way.  He wanted something that I put in front of him, and he just went for it.  The doctors say that crawling takes a lot of brainpower.  The knees and the hands’ motion and I observed him putting one hand up, one knee, and then the next.  It was difficult, thought out, and intense for him, but he finally did it!  I just have to think my Mom may have had a little help in that or a little something to do with it. 

2nd Miracle

When Coen was two, he had a scan on his little coiled brain.  They saw a problem in his brain and told us that he would have to go back to OSHU for yet another brain surgery to fix the problem.  We rallied up, and I would drive the kids, and we would go altogether.  The day before we left, I was having a respiratory issue, so I went to the Doctor, and of course, Coen was with me.  I would say that I am friends with my Doctor and I know that’s unusual but he’s one of the kindest men I know. I have his cell number, and it’s okay for me to call it, so I think I can say we are friends. This Doctor is so dedicated to his patients; he’s even met me at his office after hours.  I don’t know of any other Doctor who does this. He’s a devoted Christian man and Vince, and I adore him.  I told him we would be traveling the next day for Coen’s surgery.  Dr. Rehmann asked if he could pray for Coen.  He and his nurse, Rosie, also my friend and I were in the room.  Dr. Rehmann put his hands on Coen’s head and asked God to heal him, that his brain’s issue would be gone.  I thanked him and said amen!  I hugged them both and told them I would check in with status when we had news.

We made the long drive to Portland and got to the hospital.  I waited in the waiting room, and the kids went into the surgery prep.  Part of the prep was to do another scan so they could see precisely where the issue was.  They kissed him and made their way back to me in the waiting area.  Lindsay had a tough time.  She was so upset.  She told me that an older woman whose husband had a stroke was having surgery.  The woman said to Lindsay that no baby should have to have this type of surgery.  We knew that and we know she was trying to be comforting in her way, but it was difficult.  She was right.  No baby should.  We were just settling in for what we thought would be a very long and stressful day when they called us in the waiting area and said to come back to prep.  We got there, and you may not believe what we heard next.  THE PROBLEM IS GONE. The scan from Spokane and the scan from today are not the same.  There is no issue; there is no problem; there will be no surgery.  I am amazed again while writing this.  The next few minutes were a giant blur.  In my mind, Ryan scooped him up, and we darted out of that room as fast as we could.    I remember the Doctor stopping us at the elevator, and Ryan kind of pulled Coen into him and away from the Doctor, like, nope, you don’t get a second chance.  The Doctor said, “Does he laugh?” Ryan said, “All the time,” The Doctor said, “He’s going to be just fine!”  Wow!  The song Amazing Grace, how sweet the sound came to mind.  When I think about this, even on the surface, I have so much gratitude.  He had apparent problems just days before, but now there is no problem. It took days for this to sink in. We always knew Coen was with us for a reason. We always knew he had the right family.  But now, it’s so much more significant.  I can’t wait to see the future with this child!

3rd Year

He was going to have a brother very soon!  His name would be Townsend.  I honestly have to say I wasn’t sure about this decision even though this was not my business.  I was worried about change; I wondered how they do this? How can they have a child that needs so much and still give enough to the next one?  It was a selfish thought, but it was how I was thinking.  Our hope has always been that Townie would grow with him, and they would be buddies.  Townie’s personality is quite different from Coen’s.  He’s a bit defiant and very stubborn.  He’s the perfect brother for Coen.  He understands him and has a very soft heart for people with disabilities.  He’s so smart and kind but still defiant and stubborn.  He learned to read at age four. I can say it’s one of the most significant things I’ve done in my life.  Teach this child, my grandchild, to read.  I didn’t teach my children.  I didn’t spend this amount of time with my boys.  I worked a lot and was exhausted most of the time.  Don’t get me wrong.  I gave it all I had every day with them, but it’s just not the same.  When your young and have children, there is so much on your plate.  Career, daycare, bills, school work, housework, bills, meals, send this, do that,  staying on top of school projects, lunches, breakfast, relationships.   As a grandparent, it’s so much different.  You don’t have all those extra stresses.  I was and can focus on them the majority of the time they are with me.  I have loved every minute of this!  Did I plan for this or ever think this is what I would be doing, no.  But I would not change it.

I was watching both of them now several days a week, and I like things pretty structured.  We call it Gigi School.  We worked on phonics and went to the library, we read books and did science experiments, and we baked and played.  Coen, by now, was developing a wonderful sense of humor and laughed all the time.  We enrolled him in Head Start, and he started there just after Guild School ended.  He was socializing with other children. He learned to play a little with cubes and some toys. He learned to eat together with his little friends and to share and learned necessary pre-K skills.  He loves books.  He likes flipping the pages and looking at the pictures.  He remembers and recites books that we read to him.  It feels so great!  He is learning so much every day!

3rd & 4th Year

Coen was doing great! He had a couple of other minor surgeries. The first was to correct his left eye and after several months for an undescended testicle.  Come on, poor guy!  He recovered from both very well and continued to make excellent progress.  During the summer, we spent our days outside in the warm sun.  We have a huge back yard and so much to do. He crawled around on the grass, he loved to swing, we started using a small trampoline, we would read books and play in the little pool, and go on a trike rides. We only went inside to get food and bring it back out.  I love those months when we spend every day, all day outdoors.  He was talking very clearly and singing! He knew his days of the week and was counting and reciting his ABC’s.  He started water therapy at the Guild school and loved it! He also discovered the Ipad. Since learning about the iPad, it’s been his go-to item.  I kind of regret it, but at the same time, he has learned so much by using it and become more independent.  He was figuring out where to find particular apps, and he was maneuvering around like a champ.

It was quiet and beautiful and the days were perfect.  Coen also was fit for his first wheelchair.  Even though he had been walking slowly across furniture and using his walker, the wheelchair would be for longer outings.  By now, he was also wearing AFO’s or splints as we call them.  They help strengthen the stability of a person with a disability. 

Life was good, and we were having a great time!  I had been caring for Coen and now Townie several days a week and on the side working very part-time out of my home, I had a skincare business and men’s clothing business to try and make ends meet. We wanted to help the kids.  We would care for Coen, but it was a financial hardship.  Somehow we managed.  We had faith; that this is what we should be doing, and money would sort itself out.  Vince was still working in Seattle and used to working all the time.  He worked as much overtime he could and most weekends.  He wasn’t coming home much.  I missed him. It was a joint decision, but he’s the one that made the most sacrifice for all of us.  He is the reason that we were able to do this.  I’ve never known anyone who works as hard as this man.  He does the right thing, and he has a heart of gold.  He had no free time.  He worked, ate, slept, and repeated that process for years.  Selflessness is the word that comes to mind when I think of him.

During this time, we found out that Coen was eligible for some home care.  I would be his actual “caregiver” by title.  I had to take a course and get certified and take a test.  He was entitled to 68 hours a month of care.  I had him much more than that, but it was an excellent benefit for us.  A little extra money is doing something I loved.  I’ll say this, though.  I’ve never worked so hard, for so little money, but it’s been with the greatest reward!

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