Reality Sets In
I was not expecting today to be such a hard and difficult day but it has been. I should probably be going to bed but I know I have a few more hours still to process the sadness from today. I know I shouldn't be sad, I have all sorts of reasons to be happy I mean, seriously, it's not everyday you get an all expense paid trip for your whole family to New York City!
This week, we have lost two very special children to mitochondrial disease and one Shwachman Diamond girl has been given just a few weeks to live. Little Jasmine received a bone marrow transplant a couple of years ago and she has been fighting rejection for a long, long time. Her brother passed away just before she received her transplant; he too had SDS. One of the mito kids who died was a young girl, just 24 years old. I don't think I need to elaborate on how much that hit home.
Today, Shelbie had a tough day at the hospital. It was so hard and strange, it seemed surreal. While all the craziness was happening there, Spencer was home sick again! That poor kid has been home more than he has been in school. I had a big surprise party planned for him to give him the itinerary for New York and his wish granters came to present him with his back pack. The restaurant I had reserved double booked, but with Spencer sick, we had to scale back and keep it quiet. It turned out okay, three friends came, the wish granters Lori and Jo Ann, two of my favorite people I might add, and his friends invited his favorite teacher Mr. Bair and his wife. Spencer faked being healthy very well. Most kids fake being sick, mine fake being healthy.
We got home and went through the details of the trip and then it all fell apart. I don't even think I can find words to describe the heartbreaking sadness I saw from Spencer. He is completely overwhelmed and exhausted on all counts! He is so far behind in school, he has a solid list of 'F's. I try to help him get caught up but it seems like after all the other necessary things are done, like trying to keep my jobs and find new ones and take care of sickness every other day, school gets left behind. He basically said he was going to drop out and there was no point to trying to get all his work caught up.
We kind of argued back and forth, okay, we argued back and forth. I was probably a little hard on him. We said prayers and sent them all to bed. He came and apologized and I apologized too. Nothing good comes from a debate about school work at 11pm when one person is sick and the other is tired.
The thing about Spencer is that he is just like me. Sad but true. It will be a rare moment when he actually speaks what's on his mind and be truthful about it. We are so good at being FINE even when we aren't. I hugged him and said, "Spencer, you can do this, you can get caught up, we will work on it together."
"Mom," he said with tears welling up in his eyes, "I'm just not getting better, I'm never going to be better."
Again, I was speechless. I hugged him and cried. It's just so sad. These are the hard days, the moments when we can't pretend things are fine anymore.
I don't want to sound ungrateful or to be misunderstood but getting a wish from Make A Wish, though it's wonderful and exciting to get a dream come true, it's sad to think your children meet all the requirements for a child to get a wish. It's not me who asks for a wish for them, it has to be a doctor who applies on their behalf because their life is threatened by disease. I live so much in denial that they are going to get better, or that they really aren't as sick as other kids but then days like today, I realize that our life includes qualifying for Wishes.
I have put every ounce of energy into creating this happy life, I have taught them to laugh in the face of fear, I have taught them get up and get out, to help someone else even when they feel defeated themselves and despite the sickness we have fun but then, when I stand there dumbfounded with nothing witty or funny to say or exciting plans to take the sting out of some bad news, I hate it. I hate that I can't change the course of their life. I hate that they have to feel sadness and fear. I hate these moments, I don't want to be in this space of helplessness as a mom, when all I can offer is a shared tear and shoulder to cry on. Most of all, I hate to see other mothers, say goodbye to their children.
Humbly and gratefully, we will try to get ready for New York. I will pray that everyone will be somewhat stable to travel and that we can deal with the little setbacks of nausea and dizziness and fatigue as they will surely come while we are gone. My little surprise party for Spencer ended up being small but just right. I will post pictures of that tomorrow. I am really glad that my brother in law is taking time off work and paying for a large portion of his plane ticket to meet us in New York so I won't be alone with the kids. That is comforting to know he will be there to help me get us where we need to be and if something should go wrong, I know he will protect us and if we need the Priesthood, he's there. I am grateful to my sister for being willing to loan him to us for a week.
This week, we have lost two very special children to mitochondrial disease and one Shwachman Diamond girl has been given just a few weeks to live. Little Jasmine received a bone marrow transplant a couple of years ago and she has been fighting rejection for a long, long time. Her brother passed away just before she received her transplant; he too had SDS. One of the mito kids who died was a young girl, just 24 years old. I don't think I need to elaborate on how much that hit home.
Today, Shelbie had a tough day at the hospital. It was so hard and strange, it seemed surreal. While all the craziness was happening there, Spencer was home sick again! That poor kid has been home more than he has been in school. I had a big surprise party planned for him to give him the itinerary for New York and his wish granters came to present him with his back pack. The restaurant I had reserved double booked, but with Spencer sick, we had to scale back and keep it quiet. It turned out okay, three friends came, the wish granters Lori and Jo Ann, two of my favorite people I might add, and his friends invited his favorite teacher Mr. Bair and his wife. Spencer faked being healthy very well. Most kids fake being sick, mine fake being healthy.
We got home and went through the details of the trip and then it all fell apart. I don't even think I can find words to describe the heartbreaking sadness I saw from Spencer. He is completely overwhelmed and exhausted on all counts! He is so far behind in school, he has a solid list of 'F's. I try to help him get caught up but it seems like after all the other necessary things are done, like trying to keep my jobs and find new ones and take care of sickness every other day, school gets left behind. He basically said he was going to drop out and there was no point to trying to get all his work caught up.
We kind of argued back and forth, okay, we argued back and forth. I was probably a little hard on him. We said prayers and sent them all to bed. He came and apologized and I apologized too. Nothing good comes from a debate about school work at 11pm when one person is sick and the other is tired.
The thing about Spencer is that he is just like me. Sad but true. It will be a rare moment when he actually speaks what's on his mind and be truthful about it. We are so good at being FINE even when we aren't. I hugged him and said, "Spencer, you can do this, you can get caught up, we will work on it together."
"Mom," he said with tears welling up in his eyes, "I'm just not getting better, I'm never going to be better."
Again, I was speechless. I hugged him and cried. It's just so sad. These are the hard days, the moments when we can't pretend things are fine anymore.
I don't want to sound ungrateful or to be misunderstood but getting a wish from Make A Wish, though it's wonderful and exciting to get a dream come true, it's sad to think your children meet all the requirements for a child to get a wish. It's not me who asks for a wish for them, it has to be a doctor who applies on their behalf because their life is threatened by disease. I live so much in denial that they are going to get better, or that they really aren't as sick as other kids but then days like today, I realize that our life includes qualifying for Wishes.
I have put every ounce of energy into creating this happy life, I have taught them to laugh in the face of fear, I have taught them get up and get out, to help someone else even when they feel defeated themselves and despite the sickness we have fun but then, when I stand there dumbfounded with nothing witty or funny to say or exciting plans to take the sting out of some bad news, I hate it. I hate that I can't change the course of their life. I hate that they have to feel sadness and fear. I hate these moments, I don't want to be in this space of helplessness as a mom, when all I can offer is a shared tear and shoulder to cry on. Most of all, I hate to see other mothers, say goodbye to their children.
Humbly and gratefully, we will try to get ready for New York. I will pray that everyone will be somewhat stable to travel and that we can deal with the little setbacks of nausea and dizziness and fatigue as they will surely come while we are gone. My little surprise party for Spencer ended up being small but just right. I will post pictures of that tomorrow. I am really glad that my brother in law is taking time off work and paying for a large portion of his plane ticket to meet us in New York so I won't be alone with the kids. That is comforting to know he will be there to help me get us where we need to be and if something should go wrong, I know he will protect us and if we need the Priesthood, he's there. I am grateful to my sister for being willing to loan him to us for a week.
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