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. 

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.
Sunday, January 10, 2016

Toothless Wonders

It's been tooth losing season 'round these parts the last couple of weeks!

First Liam on our way to Florida...


Then Braeden while we were in Florida...


And finally MACY lost her FIRST every tooth just yesterday!!!!


And woke up saying "Where's my money?!?!"  Doh!

How Time Flies

Three years ago today I opened an email that would forever change my life.

And saw this face for the very first time.


We celebrated as a family the fact that we now knew WHO we were adopting.

And we were blessed to be chosen to be hers.


Three years later she is finally home.

And we are loving every minute of it.



Tuesday, December 29, 2015

Navigating This New World

Driving from Orlando to Atlanta today, with four children who were EXTRA amazing!  (And I can NOT always say that!) gave way to many hours of thinking.   I alluded to another struggle from our trip in my last post about Christmas. While I'm still not sure any of my thoughts are going to come out in a coherent bundle, I'm going to try.

It seems we're beginning to live in a new world.  A world I'm not at all ready to become a part of.  A world that I as a parent am struggling to comprehend.  A world where hypervigilance becomes commonplace and suspicion has tendency to reign.

But I don't WANT to live in this world.

On Friday, December 25 we went as a family to Downtown Disney (ok, so it's Disney Springs now... but it's going to be Downtown Disney to me for a LONG time to come.)  When we go to places like this, we usually go right when they open.  We do this not because I want to be early everywhere, but because it's the time when there are usually the least amount of people, which helps tremendously when you have kids with anxiety.  Also, we can get a parking space without searching forever, and close enough that we don't have to walk far.   But, on Christmas day, we were not rushing through gifts.  We planned to go to a movie at Downtown Disney, but we didn't plan a time, it was more of a "wait and see when we're done."  So we didn't get there when they opened, or when the first showing of Star Wars began.  Instead we arrived at 1:00 for the 2:15pm show.  My mom waited in line while the kids and I went to a few of the new stores.  I was looking forward to checking out the new Ganachery they opened! 


We were able to go to the Marvel and Star Wars stores (so fun!) and saw the Ganachery.  But, as the shop is quite small, they only allow about 6 patrons at a time and there was a line outside.  No time for that with kids, some of whom were on the verge with their anxiety with the heat and crowd already!  So we headed back and found out that our 2:15 show was sold out.  Grandma had gotten tickets for the 6:00 show but since we were already struggling, we returned the tickets and went to another theater which was not packed.  (side note - we LOVED Star Wars!!!)

That night, after Liam and Macy were asleep, Olivia and I went back to Downtown Disney.  We hoped to get to the Ganachery and a few other places before going back the next day with the family.  Grandma had given the kids Disney money and they were planning on going to the other side to hit up the toy stores.  (I did not know at the time that with all the construction the only way in currently is where we came in for the movies.  We had planned to park at the other side near those stores.)

We walked and stopped at a shop where I found some new sandals and then FINALLY got to the Ganachery!  Such an amazing place!!!  Just after that our night completely changed.
 

There was a cute kiosk outside between the Ganachery and TRex and I stopped to look at some picture frames.  As Olivia and I were in the store, I noticed a man call sternly to each of his three daughters.  They seemed very perplexed as to why he was calling them out, but I didn't understand what he said since it was in a different language.   I turned and saw a few other families acting similarly.  I still didn't know what was happening.  All of a sudden things were happening quickly.  I heard someone say "shots fired",  I saw people hurrying away from the way we had come, my pulse quickened, my fear spiked.  Looking back I think one of the worst parts was that this was not a surprise.  It wasn't something I or others dismissed.  It was pure fear immediately that this. was. happening.  And we knew "what" it was... whether an act of terrorism or someone with unbridled rage, it was a shooter situation and we needed to take action.  Never a question.

I took Olivia and started toward TRex.  She still didn't understand but was growing more and more scared as she saw others.  We went in the front portion of TRex to get out of the path.  Downtown Disney is honestly a perfect place for something like this to happen.  It's one main path, MANY MANY people (way more than were there at 1 this afternoon), and with all the construction there are very few exits.

Inside TRex others were standing around wondering what was happening as we were.  It was still somewhat calm, subdued.  All of a sudden people were RUNNING full on as a mob into TRex where we were.  The group we were in all went in and around the corner to go out into a front section of the restaurant.  We were starting to panic.  Olivia and I were crouched against the front wall of the restaurant with a "wall" of maybe six or seven people deep in front of us all crouching down and trying to hide.  People were crying, praying, holding their families.  My thoughts were that we were either getting shot or watching others get shot and with all the people in front of us I thought gruesomely that we would most likely be ok but those in front of us would not.  It was not even a question, I thought it was happening.

With Olivia's history of trauma, she reacts physically to major stressors.  This was not an exception.  She was shaking and her legs went paralyzed.  She couldn't feel them or move.  After what felt like a long time but was most likely not long at all people began getting up and moving into the restaurant.  We followed.  Employees shut and locked all doors while we waited to see what was going on.  Olivia and I moved toward the back.  We paid attention to where the back exit was.  We talked about what to do if something else happened.  I worked at calming Olivia down.  I asked for water and the employees were nice enough to get some for Olivia.  I kicked myself for letting my phone battery run so low as I was texting a friend to keep in contact with someone.  Three times I almost texted her my mom's number "just in case" but kept deleting it.  I just couldn't go there.

Finally they opened back up and told us all that there was an all clear.  We slowly got up and ready to leave.  We had to go back the way we came to get to the garage.  Back the way the incident happened.  The whole way I talked to Olivia calmly but also talked about some of the things I learned recently in an article I read about active shooter situations.  About paying attention to exits wherever you are.  About running in a zig zag pattern to get away from anything happening.  As we made our way back we passed a woman throwing up on the side.  A security officer walking by on his walkie talkie.  The section of shops with the Ganachery with all of their fire alarms going off.  Two officers in bullet proof vests with guns drawn and on walkies with the words "shots fired" coming in loud and clear.  Making it to our van we saw officers walking the garage looking for ????  We waited a LONG time before even moving since so many were leaving at once.  The whole way home Olivia jumped at every sound, every light.  She slept that night, and has every night since, with the door open.  She came out after 20 minutes asking me to never leave to go anywhere without letting her know.

How did THIS become our world?

How did we begin thinking of shooter situations as "normal".

And why aren't we more shocked at this.

It looks like, after reading what I could online, that what actually happened was a brawl at a nightspot, shattering glass that sounded like shots, and people who took this sound as fact and ran with it.  As far away from us as this was, I can't imagine what the chaos was like closer to the point of beginning since it was so hard as far away as we were.

I'm so grateful we hadn't brought Braeden with us.  But my girl, with the trauma background, now has more trauma to deal with.

I did go the next day back to Downtown Disney.  But I went by myself with the two boys.  Olivia could NOT go back.  But I needed to go back.  I needed to wrap my head around this and see it by the light of day.  And the boys would have a very hard time not following through with the plan to go and use their gifts.  It was actually harder than I thought it would be parking in the same garage, walking the same paths.  Olivia texted me quite a few times while I was gone asking if all was ok.  Asking when we were coming back. 


It infuriates me that such a night tainted a place that has always been such a happy memory for myself and the kids.

But I also kick myself for not having a stronger faith.  I think if I had been in that situation alone I may have reacted differently, but being there as a parent and working to keep Olivia calm and ok overrode everything else in those moments.  I prayed with Olivia during this time.  I talked to her about God having us and being in control.  But how steadfast was I in this belief?  Why didn't I rely more heavily on Him.  I let emotion take over.  I need to remember that no matter what happens in this world, that He is still the almighty.   Time and again I fail at this.

Proverbs 3:5

Trust in the Lord with all your heart
    and lean not on your own understanding

We are good.  We are safe.  

But since then I have held my kids closer.  I have thought about friends and cherish them just a bit more.  I have planned some letters I hope to send once we're home.

Maybe this was an eye opener for me.  Maybe through this God has planted other seeds.  Maybe it will be used in ways yet to be revealed.

Maybe.

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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: http://www.cdc.gov/hiv/resources

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Orphan Crisis

• 147 million orphans in the world
• 50 million orphans in Africa 
• Every 14 seconds a child is orphaned by AIDS
• 16,000,000 have been orphaned by AIDS
• Every week, AIDS claims as many lives as American fatalities in the Vietnam War
• 854 million people do not have enough to eat
• Malnutrition is associated with the deaths of 5 million children under the age of five
• Every 2 seconds an orphan dies from malnutrition


Hence the title of my blog

Little Did I Know

Little did I know that the road would be so rocky
Little did I know that the trip would take so long
Little did I know that my heart could hurt so much
Little did I know that God is never wrong

Little did I know that love could be so powerful
Little did I know that a dream so far could go
Little did I know that God would place the right ones
Little did I know that my heart, so large, could grow

Little did I know that a dream has it’s own timing
Little did I know that this day would finally come
Little did I know that four souls would be sent to guide me
Little did I know that they would choose to call me mom

But God knew all along and He had a plan to follow
God knew all along that my dream would soon come true
God knew all along that we five should be together
God knew all along that I’d share it all with you

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Little Did I Know