And then....I tripped
So, I continue on with my strong week plan. Today, I felt like a boxer in the ring, getting ready for the final championship. I stood in my corner, a spring in my step, my muscles were loose and pliable, I felt confident, ready for the challenge of the day and came out of my corner swinging. A productive, positive outlooked dripped as energy spilled all out around me. It was going to be a good day and then...I tripped.
That's right, fell flat on my face tonight! Life crept from behind and delivered a quick jab to the heart of the matter leaving me on the ropes.
Last week, the kids had heard about a fundraising dinner that Red Robin was hosting to raise funds for a family whose son was just diagnosed with Mitochondrial disease. They suggested we should attend to show our financial support. That seemed to be a great idea and fit right in with my 'good deed a day' plan for this week to keep us occupied instead of wondering why we haven't received any results. It was sort of a hassle getting there, the kids' homework took a lot longer than we planned. It was nearly 7 before we even left but no big deal, figured we would get a table, eat, head home. Never once did it occur to me that the family would be there. Well, they were there.
As we walked to the door of the restaurant, the father approached us explaining that tonight, the proceeds would be going to his family to help pay for their son's mito treatment. I said, "Yes, I read the advertisement, that is our reason for coming in tonight. We are awaiting news on mitochondrial disease as well."
"Wow, let me get my wife, this is so amazing!" He motioned for his wife, about my age, "Honey, a family going through mito testing!"
We introduced ourselves and briefly explained the situation we are in. We shared our Seattle experiences, they are seeing the same docs we are in Seattle. I shared where we are in the whole process. She asked about insurance, income, symptoms. It felt surreal, a duplicate life of ours. Their insurance company dropped them when their son was diagnosed. The medication is outrageously expensive. We talked about my current jobless status and what that means. The first person I have met who totally understood my quandry. If I get a full time job, who stays home to take care of my kids and lately, that alone has become a full time job. How will I pay for medication for three kids (assuming they all have it which I realize remains to be seen)? She is doing what I assume I will have to do, start my own business of some sort so I can take care of me kids. She confirmed that it is really hard to do that too. The woman was truly amazing. She is meeting with an Ombudsman of Regence to advocate for families who are struggling with mito disease to get affordable coverage. She is meeting with fortune 500 companies like Melaleuca next week to see if they will provide some vital minerals at a discounted cost.
While still standing in the parking lot, her oldest son arrived who also has mito disease. We were introduced to him. A young man in his early 20's I think she said. He was very nice, very shy and his symptoms sounded so familiar. It was shocking to me. They may as well have been talking about my kids, Shelbie especially.
Mito isn't just a big word I can read about on a website I stumbled upon through Google. It's a face, a human, a family, financial devastation, a burden and heartache, a thief robbing children of any sense of well being and security. A father working hard to provide for his family, a mother doing all she can to save her children, fighting for care, fighting for rights. Mito became more than just a big word tonight, it feels bigger than life itself!
We exchanged personal information then went into the restaurant to wait. The lobby was crowded of course. I felt like I was on a merry go round from hell. The voices became abstract, strange and unfamiliar sounds that boomed through my head. I tried to get my focus but the room was spinning, I no longer felt as strong as I did this morning. This is life, this could be our life and it just slapped me senseless! Shelbie turned to me, tears streaming down her face, panic set on her jaw. "MOM, that's me!" She turned and made her way through the crowd to the bathroom. I couldn't hold my tears, they escaped without permission and there I stood, surrounded by people but more alone than I have been in my life. A wave of worry consumed me...my thoughts were scattered, how will I handle the news, how will I pay for treatment, what will happen if I can't find a job, what if I do find a job, how can I leave my children, how do I do this when I am all alone? Ughhhh...I never would have come if I had known it would be so hard. The sad thing was, I couldn't be strong anymore. I couldn't make everything okay anymore for my kids. There was no pep talk to cheer them up with so, we stood, the four of us in our own world I no longer recognized. A heavy, sad moment.
Of course, I composed myself, found my happy face and conversation turned to lighter topics like onion rings and bottomless fries. I wish life could always be about onion rings and bottomless fries and the biggest decision to make? Which dipping sauce to try, bbq or marinara!
We did find a way to enjoy ourselves. That's the tender mercy I guess. We have really bad, pitiful moments of grief but quickly turn our frowns...upside down and make the best of things. Halfway through our meal, a different waiter came over, knelt down beside Shelbie and said to her, "Are you doing okay?"
"Ummmm, ya, I'm fine." and then I butted in, "Do you guys know each other?" Shelbie looked like a deer in the headlights, like it was some friend she was surprise to see and I was a little confused.
The waiter replied, "No, we don't know each other but when the most beautiful girl in the restaurant is crying, I need to make sure she is okay."
"Thank you, that was so thoughtful."
So......was he just being nice or trying to make a move on my daughter? Hmmmmmm......
It didn't take long to realize he was hitting on my daughter! Yup! When we left, he put his tray of food down, walked across the dining room, told her again how beautiful she was and asked how old she was. At least he was careful to make sure she was over 18!! He then asked if she would consider calling him and gave her his name and number. Okay....get me out of the twilight zone! Unbelievable night in so many ways! I bet you're jealous your life isn't as dramatic and exciting as mine? Who needs reality tv when I provide all the insane entertainment one could possibly want?
That's right, fell flat on my face tonight! Life crept from behind and delivered a quick jab to the heart of the matter leaving me on the ropes.
Last week, the kids had heard about a fundraising dinner that Red Robin was hosting to raise funds for a family whose son was just diagnosed with Mitochondrial disease. They suggested we should attend to show our financial support. That seemed to be a great idea and fit right in with my 'good deed a day' plan for this week to keep us occupied instead of wondering why we haven't received any results. It was sort of a hassle getting there, the kids' homework took a lot longer than we planned. It was nearly 7 before we even left but no big deal, figured we would get a table, eat, head home. Never once did it occur to me that the family would be there. Well, they were there.
As we walked to the door of the restaurant, the father approached us explaining that tonight, the proceeds would be going to his family to help pay for their son's mito treatment. I said, "Yes, I read the advertisement, that is our reason for coming in tonight. We are awaiting news on mitochondrial disease as well."
"Wow, let me get my wife, this is so amazing!" He motioned for his wife, about my age, "Honey, a family going through mito testing!"
We introduced ourselves and briefly explained the situation we are in. We shared our Seattle experiences, they are seeing the same docs we are in Seattle. I shared where we are in the whole process. She asked about insurance, income, symptoms. It felt surreal, a duplicate life of ours. Their insurance company dropped them when their son was diagnosed. The medication is outrageously expensive. We talked about my current jobless status and what that means. The first person I have met who totally understood my quandry. If I get a full time job, who stays home to take care of my kids and lately, that alone has become a full time job. How will I pay for medication for three kids (assuming they all have it which I realize remains to be seen)? She is doing what I assume I will have to do, start my own business of some sort so I can take care of me kids. She confirmed that it is really hard to do that too. The woman was truly amazing. She is meeting with an Ombudsman of Regence to advocate for families who are struggling with mito disease to get affordable coverage. She is meeting with fortune 500 companies like Melaleuca next week to see if they will provide some vital minerals at a discounted cost.
While still standing in the parking lot, her oldest son arrived who also has mito disease. We were introduced to him. A young man in his early 20's I think she said. He was very nice, very shy and his symptoms sounded so familiar. It was shocking to me. They may as well have been talking about my kids, Shelbie especially.
Mito isn't just a big word I can read about on a website I stumbled upon through Google. It's a face, a human, a family, financial devastation, a burden and heartache, a thief robbing children of any sense of well being and security. A father working hard to provide for his family, a mother doing all she can to save her children, fighting for care, fighting for rights. Mito became more than just a big word tonight, it feels bigger than life itself!
We exchanged personal information then went into the restaurant to wait. The lobby was crowded of course. I felt like I was on a merry go round from hell. The voices became abstract, strange and unfamiliar sounds that boomed through my head. I tried to get my focus but the room was spinning, I no longer felt as strong as I did this morning. This is life, this could be our life and it just slapped me senseless! Shelbie turned to me, tears streaming down her face, panic set on her jaw. "MOM, that's me!" She turned and made her way through the crowd to the bathroom. I couldn't hold my tears, they escaped without permission and there I stood, surrounded by people but more alone than I have been in my life. A wave of worry consumed me...my thoughts were scattered, how will I handle the news, how will I pay for treatment, what will happen if I can't find a job, what if I do find a job, how can I leave my children, how do I do this when I am all alone? Ughhhh...I never would have come if I had known it would be so hard. The sad thing was, I couldn't be strong anymore. I couldn't make everything okay anymore for my kids. There was no pep talk to cheer them up with so, we stood, the four of us in our own world I no longer recognized. A heavy, sad moment.
Of course, I composed myself, found my happy face and conversation turned to lighter topics like onion rings and bottomless fries. I wish life could always be about onion rings and bottomless fries and the biggest decision to make? Which dipping sauce to try, bbq or marinara!
We did find a way to enjoy ourselves. That's the tender mercy I guess. We have really bad, pitiful moments of grief but quickly turn our frowns...upside down and make the best of things. Halfway through our meal, a different waiter came over, knelt down beside Shelbie and said to her, "Are you doing okay?"
"Ummmm, ya, I'm fine." and then I butted in, "Do you guys know each other?" Shelbie looked like a deer in the headlights, like it was some friend she was surprise to see and I was a little confused.
The waiter replied, "No, we don't know each other but when the most beautiful girl in the restaurant is crying, I need to make sure she is okay."
"Thank you, that was so thoughtful."
So......was he just being nice or trying to make a move on my daughter? Hmmmmmm......
It didn't take long to realize he was hitting on my daughter! Yup! When we left, he put his tray of food down, walked across the dining room, told her again how beautiful she was and asked how old she was. At least he was careful to make sure she was over 18!! He then asked if she would consider calling him and gave her his name and number. Okay....get me out of the twilight zone! Unbelievable night in so many ways! I bet you're jealous your life isn't as dramatic and exciting as mine? Who needs reality tv when I provide all the insane entertainment one could possibly want?
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