What does normal life for us even look like? We are not actually sure and to be honest, is normal possible after planning your own child's funeral? We are in Radium, B.C., with my family and I find parts of myself are still here, but that I struggle to find the 'old Amy' from before Hope joined our family. I find myself laying on the couch and lazily watching the rest of my family doing things for myself or for Shawn and Sadie. I struggle to get up and do things at times and find myself tired. In the mornings Shawn and I usually snuggle with Sadie for a bit, but then send her to my parents or my sister to be taken care of while we sleep in. I feel badly at times, but also realize that we need the sleep right now and we should take advantage of having them all here.
In the midst of our sorrow and the pain of losing Hope, we also feel freedom. We have been in hospital or isolated at home for the last 13 months of our lives too. It feels weird to wake up late each morning and not have somewhere to be. It feels wrong to not rush to the hospital. It feels incredible to have Sadie with us all day and not send her off to be raised by someone else. I have spent more time with Shawn in the last week than I have in 13 months. In some ways we are a family again, yet our family is smaller than it was ever meant to be.
I find it too difficult to pick up my nephew. He is so much younger than Hope, but feels the same size in my arms and makes my heart ache too deeply. I hear myself refer to 'our girls' before I realize we only have one now. I say 'my kids' and realize it is no longer a plural statement. I don't know if these things will ever get easier.
On Tuesday before we left for Radium, Shawn and I went to the funeral home and picked up Hope's ashes. For the first time since August, we brought Hope into our home to stay. We had talked about spreading her ashes in different places and lots of other beautiful ideas. Now that Hope is back with us, we do not feel we are ready to let her go. One day we hope to spread her ashes somewhere beautiful, but for now we want to keep her with us. We may become that creepy family that carries her around for years, we don't care.
On our way out of the city, I managed to walk into the Children's Hospital to drop something off for the nurses on Hope's old unit. It was painful and I know I need more time before I can go back with Sadie to visit all of the amazing people there. It was good for me to get that "first time back" out of the way and to know that next time it won't be the first and I can go in knowing that it's ok.
We continue to feel so loved by all of those around us and are so blessed by our community. I often wish Ellen or Oprah were personal friends of mine so I could have them do wonderful things for all of the people that have selflessly served our family. I dread the day Shawn returns to work and yet I know we need to have a more normal routine. Until then, I cherish this time with my family and daily miss the feeling of Hope cuddled up in my arms and the sound of her voice when I walked into her room each morning. I miss her big blue eyes, I miss everything about her.
Wednesday, 29 May 2013
Monday, 27 May 2013
Saying Goodbye
I'm not even sure where to begin today. Typing in the address for the blog is difficult enough, now to put my emotions into words feels like an impossible task. I should first say that through this tragic reality we have seen incredible kindness from our community. I have not cooked at all and my freezer is full of frozen items to be eaten next week. It's an incredible blessing when someone drops off dinner to Shawn and me, but currently people are dropping off dinner for my entire family, 16 people. A person I have never met started an account to raise money for our family to go on vacation, a friend offered to clean my house, my table is covered with flowers and the cards took hours to read through. We do not question whether we have the support of our community around us right now. We most definitely feel loved.
I guess I'll begin where I left off. On Wednesday morning after updating the blog, I went into Hope's room and sat on her floor. The tears that came turned into sobs and soon my mom and sister were next to me as I'm sure the sounds woke them up after very little sleep. I was numb, exhausted and overwhelmed. Shawn did not even attempt to get out of bed. Around lunch time Shawn's parents came to drop off Sadie and Shawn pulled himself out of bed and had a strength that was incredible. Having Sadie is so important for us right now, she gets us out of bed every morning. We pulled Sadie aside and told her that Hope was with Jesus. She was confused and to be honest, appeared more afraid of our tears than of our words. We decided to drop it and let her ask questions as they came to her mind and follow her lead.
It was probably 4 pm on Wednesday before we even began to consider Hope's funeral and how we wanted to celebrate her life with our friends and family. How do you even begin to plan a funeral for a 1 year old? I had googled funeral homes in Calgary but found the pages covered with pictures of old people and advertisements about pre-planning your funeral. It reminded me of how wrong it is to lose a child and I was unable to proceed. My sister in law jumped into action and called some funeral homes, started the process and made all the arrangements for a funeral home, a church to host the funeral and a caterer. I sat on the couch and watched her on the phone, unable to move.
On Thursday at noon, Shawn and I drove in silence to the funeral home. Anyone who knows me would be able to tell you that I like to eat when I'm hungry. I do not tolerate feeling hungry very well and will start to feel ill if I don't eat something. Usually a meeting at noon would be terrible for me as I would worry that I wouldn't be ready for lunch before and would be starving before it was over. On Thursday, I didn't care if I ever ate again. We sat down with a woman that took us through catalogues of caskets. They are horribly ugly for children and look like a minky 80's suitcase. We couldn't bear the thought of our precious daughter in something so ugly. We decided to put her in a nicer, much more expensive casket. The funeral home wasn't sure how long they needed the casket to be. In order to figure it out, I had to take the sleeper I had brought of Hope's and lay it out in the casket to see which one she would fit into. It was the most disgusting thing I've ever had to do and it will forever haunt me.
After going through a lot of logistical details for planning the funeral; locations, flowers, cremation, clothing and many other things, we had to pick out an urn. We'd decided to have Hope cremated. The idea of her body rotting in the ground was more disturbing than the idea of cremation for me. We hope to take Hope to some of our favourite places, places we were never able to show her during her life. They asked what we wanted the urn to say and the first thing that came to my mind was a quote by Francis of Assisi- "Preach the gospel at all times, and when necessary, use words". We felt that it summed up the life of a 13 month old that never spoke, but truly made a difference in the kingdom of God.
That night we talked with family about what to do for her service. I remember a funeral I went to in 2002 for a young Godly man that was taken too soon. I remember seeing his wife worship Jesus and wondering how she had the strength to even sing. I wasn't sure I'd be able to get a word out, but I really felt that I wanted to try. God is still good and I wanted Him to know that I still loved Him, even though he took away someone I loved more than anything. We talked about speakers, programs and the multitude of details that go into planning a service like this. It was overwhelming to put something together so quickly. I can honestly say that I had very little to do with it. It was almost completely done by others and would not have come together without all of the help we received.
I also took that terrible trip to the mall, a trip to pick out clothes for my own child's funeral. I wasn't sure how I would do, but managed to find some clothes and avoid a complete breakdown. It was one of the first shopping trips that never involved glancing at price tags or checking the sale section first. I needed an outfit, I wanted to find something quickly and I didn't care what it cost, I just wanted to go home.
Friday was a difficult day. We woke up with anxiety about seeing Hope. I wanted so badly to set eyes on her again, but feared I'd be disappointed with what I saw. We had held her for hours after she'd died, but she was only dead for a short time. I worried that she would look disgusting to me when I saw her in a casket and that I wouldn't be able to look at her. I worried that standing there next to her as each person we'd invited came by would drain me and I'd completely collapse from exhaustion. When we finally got into the car I felt like it took hours to get there. We impatiently asked the funeral director to hurry up and bring her to us as he set things up. As soon as they opened her casket, Shawn and I stepped forward and sobbed as we looked down at such a beautiful angel. She still looked just like our Hope and I wanted so desperately to pick her up. I could not get over the beauty I saw, even in a dead body. In many ways she was more beautiful in that moment than I'd ever seen her. I pulled a rose from the flowers on top of the casket and placed it in her tiny, lifeless hand.
We cried with many friends that night and introduced Hope to some for the very first time. I thought I would never leave her. Sadie reached her breaking point by 9:30 pm, as she was 2.5 hours past her bedtime and was begging us to take her home. Shawn and I tucked Hope in and closed the lid of her casket. We didn't like to the idea of someone else doing it for us. I left with the dread in my heart that the next day would be the last day of my life that I would lay eyes on my baby girl.
Saturday was not easy. I got ready for my own child's funeral, an absolutely horrible feeling. We drove to the church with a happy Sadie in the backseat without a clue of what was ahead. We walked into the room where Hope had been placed and Shawn and I opened her casket. For the next hour, I never left her side. I knew that others needed to say goodbye and that people wanted to see her, but I thought of no one other than myself at that time. I wanted to look at her and I couldn't imagine walking away from her in that moment. I looked at my watch multiple times with the dread of needing to say goodbye. Just before 1 pm I saw the funeral home staff looming near me. I looked up and they told me it was time. Shawn and I wept over our baby girl as he tucked her in for the last time ever. A gift that most parents have nightly for years with their children. Something that had been stollen from us much too early.
We walked down the aisle of the church behind Hope's casket. Something amazing happened as we walked through the crowd that had gathered to celebrate her life. We found some strength in the Lord and in our community. I had thought I would need a massive box of kleenex to survive that service, but I only used one. We found the strength to stand and celebrate our daughter's life. We do not deny that the pain is terrible and completely raw, but we acknowledge that God is good and we believe in His perfect will.
When planning her service, we had asked to have the message of Christ shared. The only value we can see in Hope's death is salvation. If someone hears about and believes in Jesus as a result of Hope's life and death, it is all worth it. To anyone that heard the message of Christ for the first time or the 50th time that felt that pull in your chest. We pray that you put your trust in Christ and believe in Him as your personal Saviour. The only comfort we find is knowing that we will spend eternity in Heaven with Hope. We pray that many join us in eternity because of the testimony that Hope's journey has been in your life. If you do, would you tell Shawn and I? We would be so encouraged to know that someone accepted Jesus for the first time and is now alive in Christ.
It is now 6 days since that horrible night in Edmonton that we held our lifeless daughter. Many people have asked how we are doing. That's a difficult question with a constantly changing answer. We have moments of joy; watching Sadie laugh and play with her cousins, but we have moments of deep pain as well. We are not sleeping well and avoid going to bed. We struggle to imagine returning to normal life and are trying to even grasp what that looks like for us. It's been so long since our life was "normal" that we do not even know where to begin.
We feel we need to get out of Calgary and Shawn is not ready to go back to work. We want to be somewhere we feel comfortable and have made a few plans. We will spend some time with my family in Radium for a few days, thanks to the kindness of some wonderful people. After that, Shawn and I will be leaving with Sadie next week to go to Maui for a week. We have friends that are away and have offered us their home and their vehicle. The flights were very reasonable and we felt it was the best place for us right now. We still plan to get away on an exciting vacation when our heads are clear enough to plan it, but for now are happy to go away.
I have been asked multiple times if I will continue to blog. I don't have a true answer, but as I feel like writing, I will. I'm not sure for how long, I assume that one day I'll be ready to finish this story and put an end to Mending Hearts and Bending Knees. When that will be, I have no idea. Please continue to pray for our family. I think we are most afraid of how we'll feel when the flowers stop arriving, the meals no longer come and we are left alone. I believe that is when the true pain will set in and we have no way of preparing for those days. In those moments, we pray that God continues to give us the strength we need.
I guess I'll begin where I left off. On Wednesday morning after updating the blog, I went into Hope's room and sat on her floor. The tears that came turned into sobs and soon my mom and sister were next to me as I'm sure the sounds woke them up after very little sleep. I was numb, exhausted and overwhelmed. Shawn did not even attempt to get out of bed. Around lunch time Shawn's parents came to drop off Sadie and Shawn pulled himself out of bed and had a strength that was incredible. Having Sadie is so important for us right now, she gets us out of bed every morning. We pulled Sadie aside and told her that Hope was with Jesus. She was confused and to be honest, appeared more afraid of our tears than of our words. We decided to drop it and let her ask questions as they came to her mind and follow her lead.
It was probably 4 pm on Wednesday before we even began to consider Hope's funeral and how we wanted to celebrate her life with our friends and family. How do you even begin to plan a funeral for a 1 year old? I had googled funeral homes in Calgary but found the pages covered with pictures of old people and advertisements about pre-planning your funeral. It reminded me of how wrong it is to lose a child and I was unable to proceed. My sister in law jumped into action and called some funeral homes, started the process and made all the arrangements for a funeral home, a church to host the funeral and a caterer. I sat on the couch and watched her on the phone, unable to move.
On Thursday at noon, Shawn and I drove in silence to the funeral home. Anyone who knows me would be able to tell you that I like to eat when I'm hungry. I do not tolerate feeling hungry very well and will start to feel ill if I don't eat something. Usually a meeting at noon would be terrible for me as I would worry that I wouldn't be ready for lunch before and would be starving before it was over. On Thursday, I didn't care if I ever ate again. We sat down with a woman that took us through catalogues of caskets. They are horribly ugly for children and look like a minky 80's suitcase. We couldn't bear the thought of our precious daughter in something so ugly. We decided to put her in a nicer, much more expensive casket. The funeral home wasn't sure how long they needed the casket to be. In order to figure it out, I had to take the sleeper I had brought of Hope's and lay it out in the casket to see which one she would fit into. It was the most disgusting thing I've ever had to do and it will forever haunt me.
After going through a lot of logistical details for planning the funeral; locations, flowers, cremation, clothing and many other things, we had to pick out an urn. We'd decided to have Hope cremated. The idea of her body rotting in the ground was more disturbing than the idea of cremation for me. We hope to take Hope to some of our favourite places, places we were never able to show her during her life. They asked what we wanted the urn to say and the first thing that came to my mind was a quote by Francis of Assisi- "Preach the gospel at all times, and when necessary, use words". We felt that it summed up the life of a 13 month old that never spoke, but truly made a difference in the kingdom of God.
That night we talked with family about what to do for her service. I remember a funeral I went to in 2002 for a young Godly man that was taken too soon. I remember seeing his wife worship Jesus and wondering how she had the strength to even sing. I wasn't sure I'd be able to get a word out, but I really felt that I wanted to try. God is still good and I wanted Him to know that I still loved Him, even though he took away someone I loved more than anything. We talked about speakers, programs and the multitude of details that go into planning a service like this. It was overwhelming to put something together so quickly. I can honestly say that I had very little to do with it. It was almost completely done by others and would not have come together without all of the help we received.
I also took that terrible trip to the mall, a trip to pick out clothes for my own child's funeral. I wasn't sure how I would do, but managed to find some clothes and avoid a complete breakdown. It was one of the first shopping trips that never involved glancing at price tags or checking the sale section first. I needed an outfit, I wanted to find something quickly and I didn't care what it cost, I just wanted to go home.
Friday was a difficult day. We woke up with anxiety about seeing Hope. I wanted so badly to set eyes on her again, but feared I'd be disappointed with what I saw. We had held her for hours after she'd died, but she was only dead for a short time. I worried that she would look disgusting to me when I saw her in a casket and that I wouldn't be able to look at her. I worried that standing there next to her as each person we'd invited came by would drain me and I'd completely collapse from exhaustion. When we finally got into the car I felt like it took hours to get there. We impatiently asked the funeral director to hurry up and bring her to us as he set things up. As soon as they opened her casket, Shawn and I stepped forward and sobbed as we looked down at such a beautiful angel. She still looked just like our Hope and I wanted so desperately to pick her up. I could not get over the beauty I saw, even in a dead body. In many ways she was more beautiful in that moment than I'd ever seen her. I pulled a rose from the flowers on top of the casket and placed it in her tiny, lifeless hand.
We cried with many friends that night and introduced Hope to some for the very first time. I thought I would never leave her. Sadie reached her breaking point by 9:30 pm, as she was 2.5 hours past her bedtime and was begging us to take her home. Shawn and I tucked Hope in and closed the lid of her casket. We didn't like to the idea of someone else doing it for us. I left with the dread in my heart that the next day would be the last day of my life that I would lay eyes on my baby girl.
Saturday was not easy. I got ready for my own child's funeral, an absolutely horrible feeling. We drove to the church with a happy Sadie in the backseat without a clue of what was ahead. We walked into the room where Hope had been placed and Shawn and I opened her casket. For the next hour, I never left her side. I knew that others needed to say goodbye and that people wanted to see her, but I thought of no one other than myself at that time. I wanted to look at her and I couldn't imagine walking away from her in that moment. I looked at my watch multiple times with the dread of needing to say goodbye. Just before 1 pm I saw the funeral home staff looming near me. I looked up and they told me it was time. Shawn and I wept over our baby girl as he tucked her in for the last time ever. A gift that most parents have nightly for years with their children. Something that had been stollen from us much too early.
We walked down the aisle of the church behind Hope's casket. Something amazing happened as we walked through the crowd that had gathered to celebrate her life. We found some strength in the Lord and in our community. I had thought I would need a massive box of kleenex to survive that service, but I only used one. We found the strength to stand and celebrate our daughter's life. We do not deny that the pain is terrible and completely raw, but we acknowledge that God is good and we believe in His perfect will.
When planning her service, we had asked to have the message of Christ shared. The only value we can see in Hope's death is salvation. If someone hears about and believes in Jesus as a result of Hope's life and death, it is all worth it. To anyone that heard the message of Christ for the first time or the 50th time that felt that pull in your chest. We pray that you put your trust in Christ and believe in Him as your personal Saviour. The only comfort we find is knowing that we will spend eternity in Heaven with Hope. We pray that many join us in eternity because of the testimony that Hope's journey has been in your life. If you do, would you tell Shawn and I? We would be so encouraged to know that someone accepted Jesus for the first time and is now alive in Christ.
It is now 6 days since that horrible night in Edmonton that we held our lifeless daughter. Many people have asked how we are doing. That's a difficult question with a constantly changing answer. We have moments of joy; watching Sadie laugh and play with her cousins, but we have moments of deep pain as well. We are not sleeping well and avoid going to bed. We struggle to imagine returning to normal life and are trying to even grasp what that looks like for us. It's been so long since our life was "normal" that we do not even know where to begin.
We feel we need to get out of Calgary and Shawn is not ready to go back to work. We want to be somewhere we feel comfortable and have made a few plans. We will spend some time with my family in Radium for a few days, thanks to the kindness of some wonderful people. After that, Shawn and I will be leaving with Sadie next week to go to Maui for a week. We have friends that are away and have offered us their home and their vehicle. The flights were very reasonable and we felt it was the best place for us right now. We still plan to get away on an exciting vacation when our heads are clear enough to plan it, but for now are happy to go away.
I have been asked multiple times if I will continue to blog. I don't have a true answer, but as I feel like writing, I will. I'm not sure for how long, I assume that one day I'll be ready to finish this story and put an end to Mending Hearts and Bending Knees. When that will be, I have no idea. Please continue to pray for our family. I think we are most afraid of how we'll feel when the flowers stop arriving, the meals no longer come and we are left alone. I believe that is when the true pain will set in and we have no way of preparing for those days. In those moments, we pray that God continues to give us the strength we need.
Friday, 24 May 2013
Hope's Funeral to be Streamed Live....
Some amazing people have worked very hard and have been successful at arranging for Hope's funeral to be streamed live tomorrow. At 1:00 p.m. Calgary, Alberta time (or 3:00 p.m. Eastern standard time), you can go to the following link and share in the celebration of Hope's life with us.
https://new.livestream.com/FoothillsAllianceChurch
We are so thankful that so many of you, who have supported and prayed for our sweet Hope, will be able to join from afar and be a part of this day with us.
Thursday, 23 May 2013
Funeral Arrangements for Little Miss Hope
Hope's funeral service will be held on Saturday, May 25th, at Foothills Alliance Church in Calgary, Alberta, (333 Edgepark Blvd NW) at 1:00 p.m. There will be a private visitation on Friday night at 7 p.m.
In lieu of flowers, donations to heartbeats.ca would be gratefully appreciated. Thank you.
We are working on having the funeral service streamed live on the internet but we're not sure, at this point, if it's possible.
We would be honoured by your attendance at Hope's funeral as we remember her short but impactful life. She has changed our world and we know that many of you feel the same.
Thank you for keeping Shawn and Amy and Sadie and the rest of their families in your prayers during these extremely heartbreaking days.
In lieu of flowers, donations to heartbeats.ca would be gratefully appreciated. Thank you.
We are working on having the funeral service streamed live on the internet but we're not sure, at this point, if it's possible.
We would be honoured by your attendance at Hope's funeral as we remember her short but impactful life. She has changed our world and we know that many of you feel the same.
Thank you for keeping Shawn and Amy and Sadie and the rest of their families in your prayers during these extremely heartbreaking days.
Wednesday, 22 May 2013
From Amy's friend......
Hi friends,
A few months back Amy shared a wish with our small group. She said that it would be amazing to know the impact that Hope's life and story has had. She said she knew that she would likely not know the full impact of her life until they were in Heaven together. I think it would be amazing to give Amy a small glimpse right now.
If you have a story to share about the way that Hope has touched your life, your relationship with God/Jesus or how cuddling sweet Hope in the hospital has impacted you please share it with us and I will compile it in a book for Amy and Shawn.
Do you have a picture of Hope that Amy hasn't seen or was lost on her FB wall? It would be great to get those together with your story. These stories don't have to be big to share, Hope has touched us in big and small ways. Maybe her fight has brought you back to your knees for the first time in a long time, maybe you are a prayer warrior and you supported the family that way regularly. Encouragement is a wonderful and tangible way to support this family.
The deadline to submit is May 31st.
This is not a place to give advice! As the editor of this book I reserve the right to not include things that are not encouraging or life giving.
This book will be digital and then printed out so please send your stories and photos to this email address:
hopesreach13@gmail.com
One last thing, would you share this event with anyone who has been impacted by Hope or has been reading the blog? If you have questions direct them my way. Thanks!
Hope's Perfect Heart
Yesterday evening, Hope finally received her perfect heart. She fought hard and waited patiently for God to provide a new heart for her here on earth, but last night He chose to take her home to Heaven instead. It happened quickly and was not only shocking, but truly heartbreaking for our family.
On Tuesday morning I arrived at the hospital and found that Hope was more lethargic than the day before. She did not look well and was fighting to stay awake. She threw up a little and had some diarrhea as well as poor colour and no energy.
The doctors decided to draw some bloodwork and the initial screen showed that her inflammatory markers were sky high, likely the sign of an infection. As soon as she spiked a fever, antibiotics were started which required a new IV and an echo of her heart was ordered. The culprit was thought to be a line infection, something we have battled with Hope many times.
In the afternoon they made the decision to send Hope to Edmonton. Her heart was weak and this infection would make it more difficult for her to fight. They felt she would be safer in Edmonton. Shawn and I talked on the phone and he felt that it would be best for me to go up with Hope and he would follow me on Friday with Sadie. We've done this so many times and assumed that this trip would be long and it was best for him to stay behind to work as much as possible.
The doctors decided that with Hope being lethargic, it was safer to transport her intubated. I was not prepared to watch them do this alone and called Shawn to come right away. He arrived shortly after the tube was in and was able to sit with me. We left the hospital at 4:15 pm to get home so I could grab some clothes before leaving for Edmonton. A friend had agreed to drive up with me so I wouldn't be alone.
There was terrible traffic leaving the hospital and it took 45 minutes to get home. I started to get very impatient and almost crashed our car at one point in my rush. Shawn asked me to calm down and I disrespectfully refused. I felt a strong sense that I needed to hurry but could not explain it. Once I was home I had everything packed and ready to go within 30 minutes and was on the road.
Upon entering Edmonton outskirts, the doctor in Edmonton called to ask where I was. I told him and he told me that I needed to speed up and get to the hospital immediately. He told me that Hope had turned a bad corner and was fading quickly, they weren't sure if I was going to make it there in time. I called Shawn in hysterics to hurry to the hospital. I was so hysterical he asked to speak with Katie as he could not understand what I was saying. I raced to the hospital and left Katie and our car at the front door as I ran through the hospital. As soon as the elevator doors opened to take me up, the doctor called again to tell me to hurry. I ran down the third floor hallway to PICU and found the doctor waiting at the door for me. He told me they'd been doing chest compressions on Hope for 13 minutes and had lost her, but her pulse had come back very weakly.
I stood next to my little girl all alone, with a room full of doctors, as they told me there was nothing more they could do. I screamed 'No' over and over as I stroked her face and lay my hand on her tummy that continued to go up and down with every breath. I called Shawn again and told him we were losing her and that he wouldn't make it. He asked me to kiss her. The surgeon came to see me and told me that he would take her to try ECMO (life support), but it would take 2 hours to even attempt to connect her because of the clot in her neck and he was positive she didn't have two hours. They began giving her shots of adrenaline every 30 seconds to keep her alive. Finally they told me that she had come back long enough to see me, but was now only alive because of the adrenaline. They stopped giving it to her and told me that slowly her heart would stop beating.
They agreed to let me hold her and moved a couch into her room and took out the bed. I asked them to bring in my friends; Graeme, Carissa and Katie from the waiting room. I sat with them and cried and held my girl as her heart rate slowly dropped for the next hour. At 9:30 they came in and removed the breathing tube because her heart was nearly still. At 9:45 the doctor came in with the stethoscope and told me she was gone completely. I held her just the same and knew that I would not give her up before her Daddy got to hold her one last time.
Shawn and James arrived at 10:30, shortly after my mom arrived from the airport as well. They were all able to hold her and say goodbye one last time. The staff came and took plaster casts of her hands and feet for us. We made foot and hand prints and were able to bathe her ourselves and wrap her in a new blanket. We held her in that cold room until midnight when a security guard came and walked Shawn and I down to the morgue with our nurse. At the door of the morgue, Shawn handed our baby girl's body over for the last time. We knew that she was already with Jesus and although her body would spend the night without anyone there, her soul was with so many in Heaven.
It was late, but I couldn't bear the thought of waking up in Edmonton to this sick reality. We made the drive home and crawled into bed around 3:30 am this morning. I thought I would sleep forever and avoid this nightmare that is now our lives. I woke up less than 3 hours later and soon felt the bed shaking from Shawn's tears as he thought about telling Sadie today that her sister is gone forever. How do we explain something so difficult to a child so innocent and loving?
We are shattered and broken. Her life was full of purpose and God used her to reach so many. Her fight simply seems so unfair when she would never get a chance to run, talk or laugh with her sister here on this earth. This journey is now beginning again for us, a journey of grief. Today I will have to call a funeral home and plan a funeral for our child, a task no parent should ever have to do. Today the reality will set in more deeply as the shock fades.
We believe that God is good, even when he doesn't give us what we wanted. We believe that He is loving, even when He takes those that we love. We know that we will spend eternity with Hope and that she no longer has scars, clots or damaged organs. We know that she will never be poked again and that she is running free. Yesterday we got our freedom back as well, freedom from this suffocating journey and all we want is to be trapped and have that freedom removed again. Please pray for our family.
On Tuesday morning I arrived at the hospital and found that Hope was more lethargic than the day before. She did not look well and was fighting to stay awake. She threw up a little and had some diarrhea as well as poor colour and no energy.
The doctors decided to draw some bloodwork and the initial screen showed that her inflammatory markers were sky high, likely the sign of an infection. As soon as she spiked a fever, antibiotics were started which required a new IV and an echo of her heart was ordered. The culprit was thought to be a line infection, something we have battled with Hope many times.
In the afternoon they made the decision to send Hope to Edmonton. Her heart was weak and this infection would make it more difficult for her to fight. They felt she would be safer in Edmonton. Shawn and I talked on the phone and he felt that it would be best for me to go up with Hope and he would follow me on Friday with Sadie. We've done this so many times and assumed that this trip would be long and it was best for him to stay behind to work as much as possible.
The doctors decided that with Hope being lethargic, it was safer to transport her intubated. I was not prepared to watch them do this alone and called Shawn to come right away. He arrived shortly after the tube was in and was able to sit with me. We left the hospital at 4:15 pm to get home so I could grab some clothes before leaving for Edmonton. A friend had agreed to drive up with me so I wouldn't be alone.
There was terrible traffic leaving the hospital and it took 45 minutes to get home. I started to get very impatient and almost crashed our car at one point in my rush. Shawn asked me to calm down and I disrespectfully refused. I felt a strong sense that I needed to hurry but could not explain it. Once I was home I had everything packed and ready to go within 30 minutes and was on the road.
Upon entering Edmonton outskirts, the doctor in Edmonton called to ask where I was. I told him and he told me that I needed to speed up and get to the hospital immediately. He told me that Hope had turned a bad corner and was fading quickly, they weren't sure if I was going to make it there in time. I called Shawn in hysterics to hurry to the hospital. I was so hysterical he asked to speak with Katie as he could not understand what I was saying. I raced to the hospital and left Katie and our car at the front door as I ran through the hospital. As soon as the elevator doors opened to take me up, the doctor called again to tell me to hurry. I ran down the third floor hallway to PICU and found the doctor waiting at the door for me. He told me they'd been doing chest compressions on Hope for 13 minutes and had lost her, but her pulse had come back very weakly.
I stood next to my little girl all alone, with a room full of doctors, as they told me there was nothing more they could do. I screamed 'No' over and over as I stroked her face and lay my hand on her tummy that continued to go up and down with every breath. I called Shawn again and told him we were losing her and that he wouldn't make it. He asked me to kiss her. The surgeon came to see me and told me that he would take her to try ECMO (life support), but it would take 2 hours to even attempt to connect her because of the clot in her neck and he was positive she didn't have two hours. They began giving her shots of adrenaline every 30 seconds to keep her alive. Finally they told me that she had come back long enough to see me, but was now only alive because of the adrenaline. They stopped giving it to her and told me that slowly her heart would stop beating.
They agreed to let me hold her and moved a couch into her room and took out the bed. I asked them to bring in my friends; Graeme, Carissa and Katie from the waiting room. I sat with them and cried and held my girl as her heart rate slowly dropped for the next hour. At 9:30 they came in and removed the breathing tube because her heart was nearly still. At 9:45 the doctor came in with the stethoscope and told me she was gone completely. I held her just the same and knew that I would not give her up before her Daddy got to hold her one last time.
Shawn and James arrived at 10:30, shortly after my mom arrived from the airport as well. They were all able to hold her and say goodbye one last time. The staff came and took plaster casts of her hands and feet for us. We made foot and hand prints and were able to bathe her ourselves and wrap her in a new blanket. We held her in that cold room until midnight when a security guard came and walked Shawn and I down to the morgue with our nurse. At the door of the morgue, Shawn handed our baby girl's body over for the last time. We knew that she was already with Jesus and although her body would spend the night without anyone there, her soul was with so many in Heaven.
It was late, but I couldn't bear the thought of waking up in Edmonton to this sick reality. We made the drive home and crawled into bed around 3:30 am this morning. I thought I would sleep forever and avoid this nightmare that is now our lives. I woke up less than 3 hours later and soon felt the bed shaking from Shawn's tears as he thought about telling Sadie today that her sister is gone forever. How do we explain something so difficult to a child so innocent and loving?
We are shattered and broken. Her life was full of purpose and God used her to reach so many. Her fight simply seems so unfair when she would never get a chance to run, talk or laugh with her sister here on this earth. This journey is now beginning again for us, a journey of grief. Today I will have to call a funeral home and plan a funeral for our child, a task no parent should ever have to do. Today the reality will set in more deeply as the shock fades.
We believe that God is good, even when he doesn't give us what we wanted. We believe that He is loving, even when He takes those that we love. We know that we will spend eternity with Hope and that she no longer has scars, clots or damaged organs. We know that she will never be poked again and that she is running free. Yesterday we got our freedom back as well, freedom from this suffocating journey and all we want is to be trapped and have that freedom removed again. Please pray for our family.
Monday, 20 May 2013
Broken Hearts Made Whole
Tomorrow at 9:30am Ontario time, my mom will be sharing on television about Hope's story. It's on CTS here, not sure what channel that will be for each of you, but it's 51 at our house. I believe it will air at 9:30am here as well, but I'm recording all morning just in case. I'm looking forward to watching it when I get home from the hospital. Please join me in praying that her story not only draws people closer to the Lord and gets them on their knees, but that it raises awareness for organ donation and that it floods the gates of Heaven with prayers for a heart for Hope.
Today was a day I have been dreading. It was the first day of training for the run with Heart Beats in October. The last time I ran, was for the run last October! Seven months later, I've begun to run again to work towards my goal of running the entire 5 km without needing to walk. As we get closer, I'll post a link for anyone that would like to sponsor a runner on our team. If you're interested in running, let me know and I can send you the info to sign up for the 5 or 10 km run or the walks. My faithful running buddy arrived this morning and I dragged myself outside. It was honestly not as horrible as I had anticipated. The last 10 minutes were much harder than the first, but I have survived and I'm truly looking forward to the exercise and the time it gives me to chat with friends as we run. Last year we ran as team Hope Holly Lincoln. We plan to have the same name this year and run for the 3 babies that started this journey together. I was thinking our team t-shirts should say, "Running for broken hearts made whole" or something to that effect. We know that Lincoln's broken heart was made whole in Heaven. Holly's 1/2 heart was made whole when she received her transplant last August, and we await that day that Hope's 1/2 heart will become a whole. We pray that is here on earth, but know that Jesus will give her a perfect heart in Heaven, even if not here on earth.
I had an amazing afternoon cuddling Hope and looking into her beautiful face. I was struck by how amazing our God is today. Hope was created with only 1/2 her heart, but there were also people created with incredible brains that found ways to surgically keep a child with 1/2 a heart alive. That absolutely amazed me today. I looked down at my precious girl and imagined a heart 1/2 the size it's supposed to be and yet working overtime to keep her organs running and her body alive. It's simply a miracle and absolutely incredible to witness. Every heart beat is a miracle and I choose to celebrate each one.
Hope was getting a bit warmer as the day progressed and I'm worried she may develop a fever overnight. Shawn noticed that her heart rate was a bit higher as we headed out for the day and we are hoping it's nothing. Please join us in praying against infection. Our cardiologist is wonderful and told me this morning that he overruled the decision to lower Hope's heart meds at this point. They may consider it in a few days, but he felt she still needed the higher dose and I couldn't agree more.
My mom arrives tomorrow night, she flies out after her interview. Over the next week my entire family will slowly arrive in Calgary. We had hoped to go on a family vacation this year, it's the only time we're all together. With Hope's serious condition, it was clearly not an option and they've all chosen to come here so we can be together. I keep telling Shawn that once they all arrive, both our entire families will be in the same city. Could there be a more perfect time to receive the call that a heart was found for Hope? Last night I had a dream that the call came when our house was full of people. I could only make out the face of one friend, but perhaps the rest were family. I was amazed that as I grabbed my things to rush to Edmonton in my dream, I felt total and complete peace. Lord, give us your peace until you give Hope a heart that is no longer broken.
Today was a day I have been dreading. It was the first day of training for the run with Heart Beats in October. The last time I ran, was for the run last October! Seven months later, I've begun to run again to work towards my goal of running the entire 5 km without needing to walk. As we get closer, I'll post a link for anyone that would like to sponsor a runner on our team. If you're interested in running, let me know and I can send you the info to sign up for the 5 or 10 km run or the walks. My faithful running buddy arrived this morning and I dragged myself outside. It was honestly not as horrible as I had anticipated. The last 10 minutes were much harder than the first, but I have survived and I'm truly looking forward to the exercise and the time it gives me to chat with friends as we run. Last year we ran as team Hope Holly Lincoln. We plan to have the same name this year and run for the 3 babies that started this journey together. I was thinking our team t-shirts should say, "Running for broken hearts made whole" or something to that effect. We know that Lincoln's broken heart was made whole in Heaven. Holly's 1/2 heart was made whole when she received her transplant last August, and we await that day that Hope's 1/2 heart will become a whole. We pray that is here on earth, but know that Jesus will give her a perfect heart in Heaven, even if not here on earth.
I had an amazing afternoon cuddling Hope and looking into her beautiful face. I was struck by how amazing our God is today. Hope was created with only 1/2 her heart, but there were also people created with incredible brains that found ways to surgically keep a child with 1/2 a heart alive. That absolutely amazed me today. I looked down at my precious girl and imagined a heart 1/2 the size it's supposed to be and yet working overtime to keep her organs running and her body alive. It's simply a miracle and absolutely incredible to witness. Every heart beat is a miracle and I choose to celebrate each one.
Hope was getting a bit warmer as the day progressed and I'm worried she may develop a fever overnight. Shawn noticed that her heart rate was a bit higher as we headed out for the day and we are hoping it's nothing. Please join us in praying against infection. Our cardiologist is wonderful and told me this morning that he overruled the decision to lower Hope's heart meds at this point. They may consider it in a few days, but he felt she still needed the higher dose and I couldn't agree more.
My mom arrives tomorrow night, she flies out after her interview. Over the next week my entire family will slowly arrive in Calgary. We had hoped to go on a family vacation this year, it's the only time we're all together. With Hope's serious condition, it was clearly not an option and they've all chosen to come here so we can be together. I keep telling Shawn that once they all arrive, both our entire families will be in the same city. Could there be a more perfect time to receive the call that a heart was found for Hope? Last night I had a dream that the call came when our house was full of people. I could only make out the face of one friend, but perhaps the rest were family. I was amazed that as I grabbed my things to rush to Edmonton in my dream, I felt total and complete peace. Lord, give us your peace until you give Hope a heart that is no longer broken.
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