I remember a few things about the morning we went to Riley. 1) I woke up and curled my hair. 2) I did not want to be a frequent member of the Simon family member parking garage. 3) I remember the way the fellow couldn’t look us in the eye before she left the room to get Dr. Plager.
I thought curling my hair would wake me up, slap me out of the nightmare that was the past 12 hours with google at my fingertips. I even tried makeup, only to be cried off in the next few hours. The parking garage led to the waiting room, and I didn’t want any part of it. There were so many kids, playing. And I just kept praying that my kid wouldn’t be one of them. For sake of privacy, we will just call her the fellow. She was kind and she was gentle. She didn’t talk much, she kept doing all these funny things to get Sloane to look certain ways, she kept repeating them and she was doing it to both eyes and that’s when we knew. We didn’t need Dr. Plager to tell us what we already knew. But she brought him in the room and our world had already started shifting, all the what if’s were real and we kept standing and I probably should have known then that we would all be okay.
"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."
Phillipians 4:6-7
I didn’t think we would make it to today. I didn’t think things on our to-do list would include cleaning the carpets and a grocery trip the day before Thanksgiving. Last Thanksgiving was quiet- we were thankful over and over but it was quiet. We prayed a lot and cried more and then the day after Thanksgiving Sloane had an MRI and a port placed and she was admitted to Riley to start her first round of chemo. For a lack of better words, it is so crazy how this year has gone by. At the same time, I feel like it was only an hour ago that Sloane was diagnosed with cancer, but I also feel like it has been ten years. It is hard to put a whole year in perspective in one piece of writing. I just keep telling myself I didn’t think we would get here. In my head I couldn’t picture the year ahead of us. I remember the first week, I can feel how swollen my eyes were, I can see the way Audrey was looking at us with so many questions that she didn’t know how to ask. I remember the way it felt to go to sleep at night, so scared and unsure of what the next day would be like. There were so many phone calls, so many new people, so many doctors, so many tests. But there was also so much love, so many family members just waiting for us to ask for anything, so much kindness, so much prayer. It’s the latter part of those feelings that have carried us through. I remember all the questions asked, mainly revolving around ‘why.’ Why Sloane? Why us? Why now? Why so advanced? Why both eyes? Why God? It was hard not to linger on those questions and to this day still can be hard but it’s a downward spiral and we try to avoid searching for those answers.
What I’ve learned- cancer sucks. Cancer is ugly, cancer is heartbreaking, cancer sucks. Also what I've learned- childhood cancer is NOT rare. Childhood cancer is not funded appropriately. Childhood cancer needs research. Childhood cancer can happen to anyone, at anytime, and anywhere. Childhood cancer is real. Also what I've learned- kids are amazing. Kids are stronger than we are, kids are resilient, and kids know how to fight.
I was talking to a friend a couple of weeks ago just about the whole big vague picture of life and its ups and downs and inbetweens, and I had to just kind of pause and consider ourselves lucky. Lucky is a word I have not tossed around at all in the past year. No, I'm not calling us lucky because our daughter has cancer. More lucky though because of how we have survived this past year. Lucky to be surrounded and lucky to be so loved by so many. I just couldn't imagine our lives without every single person who has come into our big vague picture. Our big picture it hard, it is sad, it makes me cry, it's unfair and it always will be. BUT Sloane is here and she is thriving and she knows how to light up a room. She has opened up our faith in ways we didn't know it needed opening. She has brought us closer to family and helped us make new friends. She continues to make my heart jump every time she smiles. And as I've said before - Cancer really stood no chance - this girl has plans.
I speak for Austin and I both when I say that we will never be able to appropriately thank all of the people who have made a difference in our lives over the past year, but please know we are so appreciative of you. We have never once felt alone in this battle, we have always felt prayed for and we have always felt very loved.
Here's to one year of cancer, a big year of change, and many many more years to come. Happy Thanksgiving and lots of love to all of you.
St. Lucy, Pray for us.
Blessed Father Solanus Casey, Pray for us.
I thought curling my hair would wake me up, slap me out of the nightmare that was the past 12 hours with google at my fingertips. I even tried makeup, only to be cried off in the next few hours. The parking garage led to the waiting room, and I didn’t want any part of it. There were so many kids, playing. And I just kept praying that my kid wouldn’t be one of them. For sake of privacy, we will just call her the fellow. She was kind and she was gentle. She didn’t talk much, she kept doing all these funny things to get Sloane to look certain ways, she kept repeating them and she was doing it to both eyes and that’s when we knew. We didn’t need Dr. Plager to tell us what we already knew. But she brought him in the room and our world had already started shifting, all the what if’s were real and we kept standing and I probably should have known then that we would all be okay.
"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."
Phillipians 4:6-7
I didn’t think we would make it to today. I didn’t think things on our to-do list would include cleaning the carpets and a grocery trip the day before Thanksgiving. Last Thanksgiving was quiet- we were thankful over and over but it was quiet. We prayed a lot and cried more and then the day after Thanksgiving Sloane had an MRI and a port placed and she was admitted to Riley to start her first round of chemo. For a lack of better words, it is so crazy how this year has gone by. At the same time, I feel like it was only an hour ago that Sloane was diagnosed with cancer, but I also feel like it has been ten years. It is hard to put a whole year in perspective in one piece of writing. I just keep telling myself I didn’t think we would get here. In my head I couldn’t picture the year ahead of us. I remember the first week, I can feel how swollen my eyes were, I can see the way Audrey was looking at us with so many questions that she didn’t know how to ask. I remember the way it felt to go to sleep at night, so scared and unsure of what the next day would be like. There were so many phone calls, so many new people, so many doctors, so many tests. But there was also so much love, so many family members just waiting for us to ask for anything, so much kindness, so much prayer. It’s the latter part of those feelings that have carried us through. I remember all the questions asked, mainly revolving around ‘why.’ Why Sloane? Why us? Why now? Why so advanced? Why both eyes? Why God? It was hard not to linger on those questions and to this day still can be hard but it’s a downward spiral and we try to avoid searching for those answers.
What I’ve learned- cancer sucks. Cancer is ugly, cancer is heartbreaking, cancer sucks. Also what I've learned- childhood cancer is NOT rare. Childhood cancer is not funded appropriately. Childhood cancer needs research. Childhood cancer can happen to anyone, at anytime, and anywhere. Childhood cancer is real. Also what I've learned- kids are amazing. Kids are stronger than we are, kids are resilient, and kids know how to fight.
I was talking to a friend a couple of weeks ago just about the whole big vague picture of life and its ups and downs and inbetweens, and I had to just kind of pause and consider ourselves lucky. Lucky is a word I have not tossed around at all in the past year. No, I'm not calling us lucky because our daughter has cancer. More lucky though because of how we have survived this past year. Lucky to be surrounded and lucky to be so loved by so many. I just couldn't imagine our lives without every single person who has come into our big vague picture. Our big picture it hard, it is sad, it makes me cry, it's unfair and it always will be. BUT Sloane is here and she is thriving and she knows how to light up a room. She has opened up our faith in ways we didn't know it needed opening. She has brought us closer to family and helped us make new friends. She continues to make my heart jump every time she smiles. And as I've said before - Cancer really stood no chance - this girl has plans.
I speak for Austin and I both when I say that we will never be able to appropriately thank all of the people who have made a difference in our lives over the past year, but please know we are so appreciative of you. We have never once felt alone in this battle, we have always felt prayed for and we have always felt very loved.
Here's to one year of cancer, a big year of change, and many many more years to come. Happy Thanksgiving and lots of love to all of you.
St. Lucy, Pray for us.
Blessed Father Solanus Casey, Pray for us.
Lucky is a word I have not tossed around at all in the past year.
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