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Thread: A New Blog Post about saying "I'm Fine" (when I'm not)

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    Default A New Blog Post about saying "I'm Fine" (when I'm not)

    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    I am bad at saying too much actually...recently when I was shoveling the mulch a few weeks ago, one of my neighbors across the street walked over to chat. She asked how Caitlin was doing and I launched into the gory details (the VEEG (which was coming up at the time) and all the med stuff and seizures)...I notice people seem to get a funny look in their eye as I'm going on and on. Like 'oh boy do I regret asking!'. I think I need to do better at coming up with an answer that is inbetween the 'I'm/she's fine' and the big long update, especially for people who care, but can't really help out in any way about it.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Lisa, I know what you mean! I did that once with a POLICEMAN who stopped me for speeding!!! And he kind of reeled back and said "Lady, I'm not giving you a ticket", but I didn't hear him and I just kept talking and talking about Nicks' surgery and how it had gone wrong and finally he shouted "Lady, I said I am NOT giving you a ticket!" haha, you can try that one if you get stopped for speeding sometime :)! xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Donna))))))

    Guilty! Same here. TMI!!!

    Through the years, I have developed the condensed version, and I only provide details if I'm asked.

    That glassy-eyed look ~ know it well. People go into information overload, and they get lost about 5 minutes into our explanation. They care, but they really don't want to know everything.

    But then I think, "how can people learn and understand what we go through, if we don't give them the gory details?"

    And, if I'm always smiling and upbeat and saying, "I'm fine," then they think I really am SuperWoman, and that I must be able to leap over tall buildings in a single bound. That's so unrealistic. Or, they incorrectly think that my sons' issues must not be that difficult or complicated.

    Donna, I'm so glad that you didn't get a ticket! Very funny story in a way that can only be funny to another parent of a child with special needs.

    In the 80's when I was working, after I picked up my boys from their after school program for kids with special needs, driving home, about 3 blocks from our house, a cop pulled me over for speeding. I was speeding, because Michael had just started seizing in the back seat, and I wanted to get home to get him out of the car and to safety in the house. His seizures lasted 20-30 minutes.

    I drove a 1980 Toyota Corolla, and Michael was in the backseat with Jon's folded up wheelchair, and Jon was in the front seat on the passenger side, while Michael's wheelchair was stuffed in the trunk, held closed by a bungee cord.

    After I explained to the officer that we lived just around the corner and that my son was seizing, which was why I was going a little over the speed limit to get him home, the officer turned on his flashlight and shined it on Michael in the back seat, as Michael continued to seize.

    The officer asked me whether this was Michael's first seizure, to which I answered, "no."

    "Then you should have known this was going to happen and been better prepared for it," he said, as he began writing me a ticket.

    He wouldn't allow me to get out of the driver's seat to tend to Michael in the back seat. He didn't call for paramedics. He just wrote me a ticket, handed it to me, and told me coldly not to speed in the next 3 blocks to my home.

    I'm sorry that I went off topic there ... your experience triggered that memory.

    But ... anyway ... "I'm fine."

    Jim and I have adopted the mantra, "As long as Jon's okay, we're okay." It really cuts to the chase.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Smile PS: Donna

    ((((((Donna))))))

    Light years ahead of you in wisdom and experience?

    Now you know why I feel old! Light years! Wow!!!

    And you have a great deal of experience, which I do not have.

    Thank you so much for the compliment! Still giggling ...

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member andromeda31's Avatar
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    ((((Rose))))

    Wow! I can only hope that the karma bus bumped into that officer after that! I did get pulled over for speeding twice in the spring...luckily I had Caitlin's wheelchair in the back of the van both times and I think they both saw it and felt sorry as I only got warnings both times. I am amazed my auto insurance rates are not higher.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    ((((((Lisa))))))

    The karma bus! Good one!

    I'm so glad for you and Donna that you were stopped by compassionate police officers. Unfortunately, where we live, they are the exception rather than the rule. That is why I avoid driving, whenever I can.

    Here's hoping none of us gets pulled over again!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Wow, Rose, that is unbelievable about that cop! You should tell that story to Tracy (Megan's Mum) whose husband is a state trooper. Unbelievable! Your mantra with Jim will be the subject of my next blog post :)! I'm fine if Nicholas is fine, that is so TRUE!!!!! What I would say now to that policeman who wrote you a ticket: "Aren't you trained to help people in emergencies? I thought that was the purpose of police." Argghghh. And Rose, you are not old, but no one I know has nursed two complex care children into adulthood at home. What you and Jim have given to the human race is extraordinary. You are a role model for us all - it's a simple fact. Bless your family and I hope Jon had a great day today on his new mattress!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((((Donna))))))

    Thank you so much for your praise. I'm blushing.

    This is how I explain it to nurses, who tell me how much they admire me:

    God said to me, "Rose, open your arms. I have two angels for you. Two incredible blessings. Their Earthly lives will be tremendously difficult, but I'm entrusting them in your care for your sake as well as theirs. They are going to teach you everything you need to know about life, which actually boils down to one thing: LOVE. When you care for them, you serve Me. I will be beside you and give you strength and knowledge. Someday, I will ask you to return your angels to my arms. You will know profound sorrow, but you will also experience sorrow's sister, bliss, when you are reunited with them."

    I opened my arms wide and answered, "I'm ready. Thank you."

    So many times through the years, I've been asked, "How do you do it?"

    I used to have a snappy comeback, like, "With smoke and mirrors." Or a philosophical response, such as, "If he was your son, what would you do?"

    Now, I answer simply, "With Love." Then I add, "I love my son. I adore my son. He's my heart. My life. My world. My reason and purpose on Earth. He's my everything. That's love."

    That seems to be the answer that most people understand. Because it's real and it's honest.

    That is why Jim and I adopted our mantra and variations of it, such as: "Well, Jon's doing better today, so we're doing better."

    On those days, when Jon is rocking his vitals and peeing and pooping and smiling and laughing, it's a vacation for us! We easily forget the last crisis, or even yesterday. We jump for joy at the amount of urine in his collection bag, we dance, when there is poo in his colostomy bag, we grin, when Jon is happy and talkative. We really are fine at those times.

    When Jon is in distress at home or at the hospital, we aren't fine. We're hanging in there, we're working through it, we're stressed out, but we're okay. We are no where near fine. But we tend to give the impression that we are much better than we are in those situations. That is because we need to be "fine" for Jon.

    Regarding the police encounter ... several members of my family were/are police officers, ironically.

    I could tell you stories of our need for police assistance in our neighborhood that would make the hair on the back of your neck stand straight up.

    How about: midnight, and our neighbor's 12 year old son, who has Down Syndrome, had somehow climbed over their brick wall and escaped during the night. He was found near the pool area at the end of our street. Going door to door asking neighbors if they knew this boy, many directed them to our house, since we are known to have children with disabilities. And this boy and his family were new to our neighborhood and were renters.

    Of course, we knew this boy and his parents, as we had met them on a walk. When the police finally showed up at our door, they had already taken this boy into custody to a facility for abandoned children, or who have been removed from their homes due to domestic violence or abuse.

    In the dark of night, wearing my robe, I walked this police officer to our neighbor's home, where this boy lived. I told him their names, and led him right to their front door. Then I left to return to our home.

    The next day, I visited our neighbors to see how everything went the night before. They woke up to find their son gone, with NO contact from our police or the county. They didn't know that he'd escaped during the night, as they searched frantically for him. They didn't know where he was, until they called the police and were told that their son was in custody.

    That officer did not attempt to contact this boy's parents that night after I left. His excuse was that he didn't want to wake the neighbors. I know the neighbors on that street, and they would have wanted to be awakened to save this boy from being taken away and his parents terrified.

    Rightfully, the parents went to the media, after they retrieved their son from the county "children's home," and the next day, the community outreach police officer was at my door, asking me questions about my involvement that night, like I was responsible for that officer's failure to perform his duty. As we stood on my front porch, after he'd insulted me a few times, I let him have it. I started with, "How dare you ..." and I ended with, "I'm done now. You can go."

    My elderly aunt/godmother was in the final stages of cancer, living at home. She was seeing things and calling the police thinking that she had prowlers. The police in her city called our police department and two scary, bulky, steroidal jerks showed up at our door.

    "We're here about your aunt," one growled.

    "You need to get her under control!" the other one barked.

    My initial reaction to their appearance on my doorstep was, of course, that my aunt had died. Instead, the cops were tired of responding to her emergency calls about suspected prowlers, and they wanted me to take her in or have her committed.

    "She's old. And she's crazy. And they're going to stop coming to her house." With that they left.

    There's a pattern here. And I have more stories, but I'll stop now!

    As for Jon ~ he's Mr. Poopy Drawers today, and I have no idea whether that is because his hemoglobin is still low or because we've overmedicated him with the Dilantin dose increase to accommodate his tanking levels of 10 days ago. And I'm thinking about starting a new thread about that. I'm not fine right now, exactly, because Jon's situation is still in limbo. He's okay. Vitals are great. But ... I don't know what having low red blood cells for a long time does to a person's overall system.

    For now ~ that's my story, and I'm sticking to it!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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