Marilyn Rose

“Amazing Grace how sweet the sound”…Amazing Grace has always been one of my favorite gospel songs. Little did I know how much being in a state of Grace would save me and give me strength to carry on through this most difficult time of my life. But as I mentioned previously, when I looked into my daughter’s eyes for the first time after her life-saving surgery, I knew that it was Grace that would carry me through. And for me, the definition of Grace is Gratitude, Respect, Acceptance, Courage, and Excitement. Gratitude for my daughters life…surviving surgery against all the odds, became the foundation on which I was able to find a way to be respectful, accepting, courageous and excited throughout the upcoming months I spent with her in the hospital Was it always easy to maintain a state of GRACE? Absolutely not & at times I didn’t, but the only other choice I had was to completely fall apart, and that wasn’t an option. Holly needed us to be strong for her…and so we were, most of the time!

Although she was very alert, not having much pain, and in a pretty good mood the morning after her surgery, that was short-lived. By that evening she was again deteriorating, and in so much pain. Although she was unable to speak because of the breathing tube in her throat, she could mouth words and we tried our best to understand what she was saying. She was very clear when I bent down to read her lips and she mouthed…”Let me go, please let me go”.

Believe me… those were the hardest words I have ever had to listen to & it broke my heart to think that she was in so much pain and doubt that she would get better, that she wanted to die. She had so much to live for, a wonderful life, an amazing husband, a beautiful new baby girl. But I knew she couldn’t see any of that in that moment.  She was crying silently, because she couldn’t make a sound, but there were big tears running down her cheeks, & I knew she meant it!  I cried too as I tried to tell her that she would recover from this condition and that if we thought she wasn’t going to, we would honor her wishes & let her go. We cried together and although I know she wasn’t convinced by what I had told her there wasn’t much she could do about it. I went to the family room and sobbed my eyes out, before collecting myself and returning to her room, determined to do whatever it took to get her though this ordeal and help her find GRACE.

My son Jay & I took turns sleeping in her room those first few nights. I would retire to the family room and Jay would take my place and sleep in the recliningchair the staff had brought in for us. James spent the day and evenings at the hospital, and would take Casey home for the night. We were able to bring the bassineet into the family room, with us when Holly was transferred to ICU and Casey spent time in between there and Holly’s room.  Besides being in pain and hardly able to move, Holly’s blood pressure was through the roof, her body could not regulate her temperate and she was often extremely hot. Luckily there was a thermostat in Hollys room so we could turn down the heat. We would be wearing our coats, and Holly would have no blankets on her because she was so ho! One night it was so cold in her room, Jay wore my big winter coat to sleep in, complete with gloves, hat & a blanket.

I am not sure who told us about Kit’s video. I believe it was one the hospital staff, but whoever it was,..thank you. It is one of those magical things that made such a difference for us and Holly and that we will be forever grateful for. I have to admit when I first saw it, seeing what Kit (a former GBS patient) went through, I wasn’t sure we should show it to Holly. It had scared me to think that she might deteriate to that degree, but it did have a happy ending and Holly did need to see that. As it turns out the progression of Holly and Kit’s symptoms were so simiilar it was uncanny, but comforting at the same time. So, James, Jay & I decided to show it to her. This was right after she had asked me to let her go & I was desperate to find someway to let her know that we were telling her the truth…that she would get better! And it did help her to believe, although I’m sure it scared her too. But it also prepared us for what could and did happen and so it was, that video helped us to have faith and find GRACE!  Thank-you Kit & Tanya!

A mothers story “Once Upon a time” …Chapter Two Blog Book.  Holly had a very restless night that first night. She was getting weaker and weaker by the minute and was in so much pain. It was so hard to watch my previously healthy independent daughter, deteriorating before my eyes. She could no longer walk to get up to the bathroom and cried in pain when the nurses tried to move her in any way. We didn’t get much sleep and although I don’t remember there being anyone in the next bed, there wasn’t much space in the semi-private room Holly was in. I don’t even remember where I slept that night, but the next morning they moved us to a private room and brought in a reclining chair for me to sleep in. I don’t really remember a lot about that next day either. Holly recalls vividly the terrifying experience she went through having an MRI.  I accompanied her down to the x-ray department but wasn’t allowed in the room with her, so I had no idea just how scared she had been. I still thought that things we going to be ok and thankfully at that time, had no idea what was in store.

We didn’t get much sleep again that night as Holly continued to get weaker and the excruciating pain she was having seemed to increase by the hour. By the wee hours of the morning I noticed that Holly was starting to have short periods of apnea…where she would stop breathing for a few seconds then start breathing again. I held my breath each time she stopped breathing and sighed in relief when she started breathing again. I called the nurses and let them know and they promised they would keep a close eye on her. I didn’t sleep at all after that. I was too afraid she would stop breathing and no one would be there to notice.

When the attending neurologist did her rounds that morning and saw Holly, she told us she was going to contact the ICU and have them on standby in case Holly’s’ breathing deteriorated and she needed to be transferred there quickly. She reassured us that she was probably just being “paranoid”, but wanted to err on the side of caution!. Holly’s breathing actually improved and was back to normal, so it seemed like a good time for me to run out and pick up a few things that both Holly & I needed at the hospital. Den picked me up and we headed to the nearby drug store. We were barely gone 10 minutes when James called to say that Holly was being transferred to the ICU as her breathing had deteriorated again and they wanted to start her on another treatment for GBS. We raced back to the hospital, & once again I found myself trying not to panic, telling myself that they were just being cautious and that she would be OK. But she was not!

When we arrived back at the hospital we packed up mine & Holly’s belongings & were asked to wait in the ICU family room, while they got Holly settled in and started the procedure called Plasmapheresis…similar to kidney dialysis. Once the procedure was started, we would be allowed in her room. James & I called friends & family to let them know what was happening, and before long the family room was packed with friends and family members. I wansn’t sure what to tell Holly’s closest friends who lived out of town, when they asked whether they should come or not, so I suggested they wait until she was settled in her room and would be allowed visitors. I promised to call and keep them updated!  I have no idea how much time passed, it seemed like forever, but finally a nurse came and asked us if the Dr. had been in to speak to us yet. When we told her no, she said he would be there shortly. I thought it was odd, but she left before I could ask her why he was coming to speak to us, and he appeared within a few minutes.

I will always remember how he came into the room, closed the door, sat on a footstool and asked if everyone was there that needed to be there. The room got very quiet as he proceeded to tell us that Holly was being rushed for emergency surgery to repair a ruptured artery in her groin. He explained that they had “screwed up” and that her artery had been ruptured during a routine procedure to insert a catheter for the Plasmapheresis treatment. He went on to say that because of her already unstable condition, they were not sure she would survive the surgery!

It was as if time stopped…like you see in the movies when the scene is frozen and no one moves or talks. No one was moving and no one was talking.  And it seemed to last for a very long time, although I’m sure if was only a few seconds. I remember thinking “someone has to say something”. I remember feeling sorry for the Dr. for having to deliver such devastating news. And I remember finally thinking “I guess I’m going to have to be the one to say something…& so I did. I thanked the Dr. for his honesty in telling us the complete truth about what had happened and asked if I could go and see her, not  totally comprehending that she was already in the OR fighting for her life.

After the Dr. left the room, I sat frozen in my seat for a few minutes, trying to take it all int. Suddenly it felt like the walls of the family room were closing in on me and I had to get out of there so I could breath. I was looking for a private place to collect myself and make some calls. I found a deserted hallway with extra beds and stretchers. I sat on one of them & called my dad & Holly’s friends and told them to come. Luckily my amazing husband had followed me out of the room.  From the hallway he guided me to the nearest washroom as by this time I was starting to hyperventilate and felt like I was going to be sick. As I stood over the sink in the bathroom, retching, I looked up and saw my pale, panic stricken face in the mirror. I started to sob and pray…asking God “please, don’t take her, please don’t take her”.  I don’t know how long I was in the bathroom, but when I came out I was a different person than when I went  in. I had been so confident and sure that everything that was happening was going to change in a minute, and she would just be ok. Now I wan’t so sure, and all I knew is that I would have to surrender and accept what came next, and continue hoping and praying for a miracle. That night we got one. Holly survived the surgery and although she was very weak, was on a respirator and unable to talk, she was alive!

From the moment I first saw her after her surgery and looked into her eyes , I knew the love & gratitude I felt in that moment  is what would get me through the rest of the journey ahead. That was the turning point for me. And although we had many rocky days after that, that was the momemt I learned about GRACE.

My 1st Blog book…I promised myself I would start my story about my journey with Holly throughout her ordeal with GBS, as soon as her book “Happily Ever After”  was launched. Now ”Once Upon A time”…there was a beautiful little girl named Holly..is my story and it’s time to share it. I have been asked by many what it was like to go through something like this with my daughter, and like Holly, I can’t answer that in just a few words or sentences. And I have decided that that a blog book is the quickest way to go. This way we can share our stories together & I continue to support her on this new journey and  purpose in her life, and promote her book and inspiring story. After all she inspired me and continues to do so in ways I can never describe fully…but I’ll try through my side of the story.

I was intially going to call it “Hospital”…you’ll have to read why in the book, but just the other night it came to me.. every story that ends in “Happily Every After”, usually starts with Once Upon a time. And since our story is a fairy tale come true, it just kind of made sense.  So let me begin. One chapter at a time…

Once Upon A time…there was a beautiful little girl named Holly, who at age 6 wanted to be a bride for Halloween. “Are you sure you want to be a bride?” I asked her…”what about being a princess?” You see…I had only been divorced for two years, so I wasn’t crazy about her wanting to be a bride!  But she was certain, as she rubbed her hands together and declared estatically…”I want to be a bride!”  I didn’t try and change her mind and not only was she the cutest bride ever with my wedding veil, but she also convinced her older brother Jay to be her groom. Brett wasn’t have any part of the wedding theme, so he went as Robin, Batman’s sidekick and theirs, to protect them from evil, and off they went Halloweening!

Fast forward 20 years! Holly fell in love, got married and became a bride for real!!! She was the most beautiful bride ever. I can say that, I’m her mother, and besides, she was!  Her and James were a beautiful couple indeed. Unbenonst to me, they planned to start a family right away and when she annouced 8 months later that they were pregnant, and a few months after that, expecting a girl, I was estatic.  As a single parent most of Holly’s life, I hadn’t always been there for my children in the way I wanted to be. I was often caught up in the busyness of life, working and trying to provide for my family, while also trying to figure out who I was.  That’s still a work in progress. I was looking forward to be a grandmother & saw it as an opportunity & second chance to be fully present and active in my adult children & grandchildren’s lives. Little did I know I would have more than just a second chance at being a grandmother and what my second chance would entale in the months ahead!

On January 26th Casey Marie Gerlach was born & I can hardly describe the feelings of joy and excitement I felt the first time I held her. It was amazing & I loved every minute I had spending time with her, Holly & James and being a Nana, as I had decided I wanted to be called. (She could learn to say that quicker than gramma and I could hardly wait to hear those words)

I spent as much time with her as I could during those first three weeks, without overstaying my welcome, I hope! But I also had my own life to attend to & keep in balance, and as I love to travel, off I went to Toronto on a business trip. I would only be gone a few days and with I phones, video technology etc…I wouldn’t miss a thing!

I will always remember certain details of what transpired from the moment I got the call from my daughter, on Feb. 22nd, just like it was yesterday. A call no mother wants to get! Just as I was about to order dinner,Holly phoned to tell me she was in the hospital emergency department. She started to cry as soon as I answered the phone. I immediately thought something was wrong with Casey. She reassured me Casey was ok, but that she was not.  “How can this be happening?”, I remember asking myself. She was a perfectly healthy new mon when I left for Toronton, & now she was being admitted to the neurology unit. With my background as a practical nurse, I knew that wasn’t a good sign.That one phone call changed everything and our lives forever!

One minute I was sitting in a restaurant in Toronto, with my collegues, the next I was scrambling to make flight arrangements, get a cab & get to the airport to catch a flight home. One of the details I remember is the long cab ride to the airport! It was after rush hour, but the traffic was almost at a stand still, bumper to bumper because of an accident on the freeway. I remember feeling trapped and so helpless in the back seat of that cab. I remember trying not to panic telling myself that she would be ok, after all she had called me herslf, but my mind raced as I tried to convince myself. I felt much better once I was airborne and on my way home.

I arrived at the hospital around midnight that same night. James was there with Casey but as he was already sleep deprived from not sleeping the night before, so we all agreed he should go home with Casey and I would say with Holly. I stayed that night and the next and the next…and thus began my 3 1/2 month journey with my daugther living in a Hospital!

Stay tuned for Chapter Two and the rest of the story…