Thursday, February 25, 2016
Single Parent Confessions
(Only recently... With the stress of medical questions and concerns)
(Also titled... Late night ramblings of a crazy person :). )
* I can more clearly understand the concept of being hyper vigilant. I feel on edge most of the time watching and waiting for signs of 'relapse.'
* Money, while never bountiful previously, has taken on a new meaning. A new feeling of long term insecurity at not having a large savings account to supplement possible future needs and time off work.
* Doctors, once trusted as sources of knowledge and healing, are currently viewed behind a veil of distrust and judgement. Which makes for a scary place to be.
* Friends are held in a state of fragility, with unreasonable insecurities put upon their bonds.
* The need to be busy is hard to quench when not at work. Keeping distracted from my thoughts at times is overwhelming.
* Prayer has become stronger in the face of needing to rely even more on God to alleviate the fear that can threaten to spill over.
* Finding and reading new Bible verses and quotes on positivity has proven helpful.
* A good laugh is worth a million dollars.
Monday, February 15, 2016
Older and Older
Seems daily life keeps on moving through ups and downs! And right when Olivia was dealing with being sick... Both boys' birthdays snuck right up on us!
I can never get over the fact that another year has passed once those birthdays come. They give me pause to reflect on each child's precious journey and all they've been through to get to this point.
Liam turned TEN this year! TEN!?!? I can hardly stand it!
This little wisp of a boy who blew into our lives one evening in an emergency situation. A nine month old who couldn't sit up or crawl and was making just one sound. And one week later was sitting, standing, and crawling, and his progress though slow continues to amaze me.
Ten is a big birthday year in our house. We don't do big parties but at five, ten, and sixteen we break the norm and go all out. At ten the kids also get a one on one trip with just mom; their choice. And they get a pet.
Liam chose to have his two best friends for a party at Chuck E Cheese this year and has looked forward to it ever since he turned nine! Unfortunately it was right when Olivia was sick. Grandma was still here so she stayed with Olivia while the rest of us went. Poor Olivia cried and cried when she realized she was going to have to miss his party.
Liam's trip will take place this June. He decided on a Disney trip so we will all travel to Florida to spend time at Grandma's and while there Liam and I will leave for four days for his special trip.
As for the pet... Well I'm not sure he's quite ready for that. I finagled my way out of it for now. So we'll see.
On his birthday he chose summer sausage, cheese, crackers and cherry cola for his dinner. The kid cracks me up!
And then eight days later it was Braeden's turn! Luckily in between Olivia had her spinal tap so she was feeling herself again!
Braeden turned twelve and he had a hard time this year. A lot of big feelings regarding family. Birthdays while joyous can bring up a lot in kiddos from hard backgrounds and this was no exception. A few nights holding a sobbing boy and daily anxiety on top of that.
He chose wings, sweet potatoes, and butterbeer for his dinner!
It's amazing to see these two boys becoming young men before my eyes. I'm not sure where the time is going but thank God for all of the special times we've had and all I can see Him doing in their lives.
Sunday, February 14, 2016
Being Right
Many people rule their lives it seems by always having to "be right." They have to have the final say, can't open their mind to other points of view, choose not to look into another idea or solution, and will defend their concept or position to the death.
I admit that at times I can get caught up in that as much as anyone. But I like to think that for the most part that is NOT how I choose to function. Does that mean I won't defend myself if I believe that I'm on the right track with a student or that I will "back down" if a certain 14 year old doesn't remember that she was asked three times to do something that still has not been done, no. :) But I always try to see others' perspectives, their way of looking at a problem, another way to complete a job or view a solution or see our world.
Being right can also be a tough place for many. I am positive there are times that people find out information and then wish with all they have that they WEREN'T right. When the crew on the Titantic realized that the unsinkable ship was going down and they needed to begin evacuation, there were many who still disagreed. Many who would not listen, would not, could not, dare to believe that this majestic boat was really sinkable. But those who began to help passengers to safety were right. The Titanic WAS sinking, and as much as they most likely wished to be wrong, they were right.
Friday I took Olivia to meet with a neurologist at the same hospital we've been going to, to help look at getting answers to what has been, and is, going on with her. The neurologist looked over all of the tests that were done and spoke with one of the doctors we've been working with. This doctor, like the others, still doesn't want to admit that her recent episode is in any way related to Olivia's hospitalization over the summer. Even though she had the exact same symptoms. Even though she's never been through anything like this any other time. Even though both times it took a spinal tap to end those symptoms.
And I'm pretty sure I know why. I'm pretty sure I know what she has.
This most recent appointment? The doctor did at least confirm that this is something REAL. That whatever is happening is NOT just "in her head." So that's a positive. However, she's still guessing at what it could be. She gave us a possibility and asked me to research it at home. Recommended we still move forward with our referral to the other hospital in April (WE WILL BE). And dismissed, just like the other doctors, the condition that I think Olivia has. Dismissed it because of ONE factor. One factor that I had read does not have to be at the number that these doctors do. Because Olivia's "number" was the high end but "normal". And yet the guess she gave me... does not hardly fit AT ALL.
Do I WANT to "be right?" NO! Believe me, this is NOT about being right. I do NOT wish to be "right" on this. If I thought in the least that this doctor's recommendation was spot on... I'd run with it. Because what she thinks... no big deal. Managable. Common. Treatable. What I think it is... what I'm pretty darn SURE it is... Not easily managable. Rare. Hard to treat with some patients. But it fits. And I don't WANT to just jump onto another diagnosis because it was given by a doctor, or because it's "better".
Because I don't WANT to be right.
But I know I am.
And I wait and watch and hope that Olivia doesn't relapse before SOMEone helps us. Before SOME doctor is willing to look seriously at this and provide a strong plan and treatment.
And my days and nights are spent trying not to worry. Trying to distract myself as much as I can. And trying to find something else it could be so that I'm NOT right.
I admit that at times I can get caught up in that as much as anyone. But I like to think that for the most part that is NOT how I choose to function. Does that mean I won't defend myself if I believe that I'm on the right track with a student or that I will "back down" if a certain 14 year old doesn't remember that she was asked three times to do something that still has not been done, no. :) But I always try to see others' perspectives, their way of looking at a problem, another way to complete a job or view a solution or see our world.
Being right can also be a tough place for many. I am positive there are times that people find out information and then wish with all they have that they WEREN'T right. When the crew on the Titantic realized that the unsinkable ship was going down and they needed to begin evacuation, there were many who still disagreed. Many who would not listen, would not, could not, dare to believe that this majestic boat was really sinkable. But those who began to help passengers to safety were right. The Titanic WAS sinking, and as much as they most likely wished to be wrong, they were right.
Friday I took Olivia to meet with a neurologist at the same hospital we've been going to, to help look at getting answers to what has been, and is, going on with her. The neurologist looked over all of the tests that were done and spoke with one of the doctors we've been working with. This doctor, like the others, still doesn't want to admit that her recent episode is in any way related to Olivia's hospitalization over the summer. Even though she had the exact same symptoms. Even though she's never been through anything like this any other time. Even though both times it took a spinal tap to end those symptoms.
And I'm pretty sure I know why. I'm pretty sure I know what she has.
This most recent appointment? The doctor did at least confirm that this is something REAL. That whatever is happening is NOT just "in her head." So that's a positive. However, she's still guessing at what it could be. She gave us a possibility and asked me to research it at home. Recommended we still move forward with our referral to the other hospital in April (WE WILL BE). And dismissed, just like the other doctors, the condition that I think Olivia has. Dismissed it because of ONE factor. One factor that I had read does not have to be at the number that these doctors do. Because Olivia's "number" was the high end but "normal". And yet the guess she gave me... does not hardly fit AT ALL.
Do I WANT to "be right?" NO! Believe me, this is NOT about being right. I do NOT wish to be "right" on this. If I thought in the least that this doctor's recommendation was spot on... I'd run with it. Because what she thinks... no big deal. Managable. Common. Treatable. What I think it is... what I'm pretty darn SURE it is... Not easily managable. Rare. Hard to treat with some patients. But it fits. And I don't WANT to just jump onto another diagnosis because it was given by a doctor, or because it's "better".
Because I don't WANT to be right.
But I know I am.
And I wait and watch and hope that Olivia doesn't relapse before SOMEone helps us. Before SOME doctor is willing to look seriously at this and provide a strong plan and treatment.
And my days and nights are spent trying not to worry. Trying to distract myself as much as I can. And trying to find something else it could be so that I'm NOT right.
Sunday, February 07, 2016
I Call NO FAIR
Whenever my kids at home or school use the phrase 'that's not fair' I always come back with letting them know that they're using 'fair' wrong. Many seem to think of fair as meaning everyone should get the same, but really it doesn't. Fair means everyone gets what they need.
Born with HIV.
Living daily with HIV and worrying about the stigma of that.
Hard first three years in two living situations.
Foster care.
Separation from her brother.
Seizures.
Then last summer and her vaccine reaction and hospitalization. Missing her favorite week of camp. Taking a couple months to build up her activity and health again.
Four weeks ago it all went downhill yet again. She was hospitalized yet again. She had a horrible headache that once started did not end for even five minutes, nausea, confusion, light and noise sensitivity, unsteadiness in her walking, reflux like symptoms, ringing ears. Two days of this and she was hospitalized where they ran many tests. They found nothing. They did not see a correlation to the events of last summer, even though she hasn't had headaches any other time.
Honestly I can remember a couple of extreme lows in my life where I've thought 'it's not fair' so I do understand where they're coming from when they say that. And this is another of those times. I know that God can use trials for His good. I've seen Him bring beauty from ashes. But really, my Olivia has been through so much in her 14 years and I say it's not fair.
Born with HIV.
Living daily with HIV and worrying about the stigma of that.
Hard first three years in two living situations.
Foster care.
Separation from her brother.
Seizures.
Then last summer and her vaccine reaction and hospitalization. Missing her favorite week of camp. Taking a couple months to build up her activity and health again.
Four weeks ago it all went downhill yet again. She was hospitalized yet again. She had a horrible headache that once started did not end for even five minutes, nausea, confusion, light and noise sensitivity, unsteadiness in her walking, reflux like symptoms, ringing ears. Two days of this and she was hospitalized where they ran many tests. They found nothing. They did not see a correlation to the events of last summer, even though she hasn't had headaches any other time.
So they claimed stress and anxiety and sent us home. Home?! Where her symptoms did NOT change but in fact grew worse over time. They didn't call. Didn't offer suggestions, except to send breathing exercises for anxiety through email. I emailed constantly. I researched relentlessly. I lost many nights of sleep... And still am... I finally found what I thought was "it." All the symptoms FIT. And looking back at her hospitalization over the summer, which I kept telling them was related, her same symptoms: headache, confusion, altered state, all ended the day she had a spinal tap. Maybe coincidence. But it fit what I found. At the time we didn't pay that any attention because so much was happening, so many tests were being done. But that's the day she got better with those symptoms. Yet they said no. It couldn't be. It didn't fit.
They finally decided, with all of my emailing, to do a spinal tap because that was one test they had thought of doing in the hospital but hadn't. And I was now glad they hadn't, because if they did it would again have been overlooked as the solution. They scheduled it for this past Thursday. And on that day... after being on home bound from school because she couldn't leave the house... after missing activities at church and school... all the symptoms she had... headache that never ended for even five minutes the three and half weeks prior, light and noise sensitivity for 3+ weeks, ringing ears for 1+ weeks, cold head, sore back, all gone. GONE. Immediately gone.
And they haven't called to check on her. They haven't inquired in any way as to how she's been since. And she's fine. She's back to her completely normal, healthy, 14 year old self.
So now I gear up for the next part of this battle. Because although she's better NOW, this is only the beginning. Someone has to listen. Someone has to help me get to the answer. Because I cannot, will not, wait six or five or four months for this to happen yet again with no answers. And when someone does finally listen, we will have a new diagnosis, a new condition that we will have to navigate, more for Olivia to learn about her body. And though they'll never admit it, it's another effect of that stupid vaccine. It all started at the same moment that I will forever kick myself over.
And if she has what I suspect she does, it's a serious, lifelong condition.
And she's 14.
And it's so not fair.
I want her to be able to get back to 'normal'.
I want to not go day by day worrying she's going to get a headache and what that could mean.
I want to go to late night movies with my friend again instead of spending hours researching medical symptoms and diagnoses.
I want to let her go to sleepovers and camp and out with friends without worrying how she is.
I want to plan vacations and concerts and Chicago trips without wondering if we can carry them out or if we'll be in the hospital.
I want...
For it to be fair...
Because life has NOT been fair to my girl.
And she deserves so much better.
So much more.
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Olivia - 14
Braeden - 11
Liam - 9
Macy - 5
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