Sunday, February 07, 2016


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. 

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.

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.


Molly said...

Wow! I have a few hunches as to what you are thinking, follow your gut mama. It is not at all fair, but I'm thankful she has you to fight for and comfort her. It's never fair when kids have chronic conditions, nor when they gain new ones. There's not a lot I can say about than other than, I agree. It's not fair.

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About Me

I am a single mom to four amazing kids; each of whom just happen to have been adopted. The first three were adopted through foster care, and we just completed an international adoption from Haiti. Our family has grown through adoption and I am all the more blessed to know each of my children. I worship a mighty God, teach Special Ed, love bargains, and am inspired by Pinterest... come along with us for the ride!

Olivia - 14

Olivia - 14

Braeden - 11

Braeden - 11

Liam - 9

Liam - 9

Macy - 5

Macy - 5

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What you should know about HIV

-HIV can NOT be spread through casual/household contact. HIV is not spread through hugging, kissing, shaking hands, sharing toys, sneezing, coughing, sharing food, sharing drinks, bathing, swimming or any other casual way. It has been proven that HIV and AIDS can only be spread through sexual contact, birth, breastfeeding and blood to blood contact (such as sharing needles). - HIV is now considered a chronic but manageable disease. With treatment, people who are HIV+ can live indefinitely without developing AIDS and can live long and full lives. - People who are HIV+ deserve to be treated with love, respect, support and acceptance as all people do. Additional information on transmission of HIV can be found on the Center for Disease Control website:

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