Out of the closet....

6 weeks ago I took Kamiyah to have testing done so she could hopefully get help in her local school district. I was mostly trying to get my foot in the door to see what I was up against in terms of giving her the same education as the other kids.  What I walked into was a colorful classroom that was definitely made for young children.

Kamiyah was constantly having episodes and was distracted because of everything to do so the team decided they would test her in a different location.

That location was a storage closet. With a mop bucket and old curriculum from the seventies. Items strewn about half hazardly and it was quite a mess but I understood because there are not any other kids like Kamiyah.

This week we showed up and hoped we would complete the testing.

Then something amazing happened.

The testing instructor was super excited to show us what Kamiyah inspired her to do. I thought maybe they found a new space for Kamiyah that was a little more inviting.

But no.

They took that old storage closet and transformed it into a nice space for kids like her to be tested. They got a few cans of paint, a table, a few lamps, and a nice new rug. She even made a pennant banner.

I have always known Kamiyah would leave this world a better place. I never imagined she would have the opportunity to see it change right in front of her. And to be quite honest, we never expected it to.

That is what makes it that much more beautiful.

It Should Be a Requirement....

When you embark upon a relationship a requirement should be that you have to train to run a 5k.  It opens your eyes to what is right in front of you and allows you to see how a person reacts to wanting to give up. It proves if they can sacrifice of themselves for the betterment of the other half.  You will also see if they are quick to encourage or if the are hasty to criticize.

Are they dedicated to seeing you succeed or do they just say they are?

What if one person has been running awhile and could run 5 miles without hesitation? Would they run extra just so that they could make sure the other person does not feel discouraged and start walking? Would they want to be there so you do not just sit on the side of the road because cookies sound so much better than gasping for air?

When you get into a relationship you automatically hope that your partner will be there. This is not, however, always the case.

Hence the 5k.

I have started doing the C25K program and Cory has been right there. Every step of the way.  Even when throwing in the towel sounded so good and sitting down seemed like an acceptable alternative.

Perhaps, though, the run isn't the point at all. Maybe it is showing me how he will treat our relationship and how important it is to him to do what is best for our family.  By being there. By encouraging. By making sure no one on our team gives up..

Because all of us are crucial.

No matter how big the race.

It is a good indicator who is in it for the long haul. Even when you are absolutely sure that you are.

Could it really get any better than this? I am not so sure.

A Crack in the Foundation

When you get married in your twenties, you get excited to start your life independently from your parents and WITH a partner. You start building a tower with a few pieces of life experience that you have and the only way you know to build is up. It makes sense. Towers are meant to be tall right?

And then an earthquake happens.  Everything you once knew is now shattered. Gone. Unsafe. Unhealthy.  It may even threaten to take your life.

Once you are at ground zero though you start looking around and you feel incredibly hopeless because the shrapnel that is all around you looks unfixable. Rendered useless. You start to look closer at the remains and notice there were hundreds of tiny cracks in the cement.  Your attempts at building taller only amounted to more weakness until the foundation could not withstand the storm. There are a few things that you find that can be useful in rebuilding such as the lessons you learned about what you need and want, and what God has called you to do.  Amongst the pieces you pick up are the children that you are incredibly thankful for. When you look at them it forces you to put down the pieces of regret that fell off the peak of the old tower.

Then you say to yourself:

“Will I ever be able to rebuild from this?”

“Who is going to love a broken tower?”

“What if I make this mistake again?”

The moment of truth then hits you square in the face and you find out the answer is "yes".  With someone who is willing to build a tower with a rock solid foundation. One who has been in your shoes before and knows exactly where the errors were made. A person who understands that the base of the tower needs to be wider.  They add a few support braces that can be placed in the corner to prevent rattling when the intensity level of the earthquake reaches it’s strongest point. A guy with a few pieces of his own tower that fill in the spaces of your broken one and add extra color.

Sometimes you just need to start over to get what you should have had all along.

You decide to bring a few parts and leave the rest.

We have brought our kids, our lessons, and the clothes on our backs. 

We are currently stumbling upon pure happiness, health, and hundreds of giggles. But most importantly we now know that broken towers do not stop the creation of new towers. The old ones just get put in their proper place.  

The kids have been brought together and they are the cutest things since the history of ever. 

The towers on the right were our old marriages and the tower on the left is what we are currently building.

Could it really get any better than this? I don't know. One thing I am sure about is that I am TOTALLY willing to find out...

The Truck You Never Expected

Remember my last post about the truck?

If not, click here.

If so, well, you know what to do...

The truth of the matter is that some lessons. Even hard ones. Are there for the reason they appeared and then the real reason is so that you will be able to look back and see an even bigger picture and recognize what is right in front of you.

Which brings me back to the truck. The truck that symbolized my divorce and the fight I had to endure to save my daughter and myself.

I am not here to discuss that truck any longer, but rather, I want to talk about the truck that I was passing today as I left Vermillion.

I went to Vermillion today to help my boyfriend pick out some new glasses and to enjoy lunch with him at Chik-fil-a.  I suspected we would do just that and chit chat like we always do and then I would head back to Sioux Falls. No. Big. Deal.

I would be lying if I said it was just plain and ordinary.  I watched him be patient, smart, considerate, and a downright fine gentleman, but I also got to see him in real life. Not just on a fancy date, in texts, on the phone, or through FaceTime. I got to see how he interacts with people and how he responds to my overly social personality and strong opinions. He was himself and that is all I could ask for. Then it came time for me to leave and as I left my heart sunk because I knew there would be life that had to be done without him by my side.

I was a few miles from the interstate when I saw a familiar looking truck and I braced myself because I have been behind one before. The previous experience was far from pleasant and it left me scared, tired, covered in feces, yearning to get away from it,  and in desperate need of a car wash.

But as I approached I noticed that it did not smell and I found that to be strange. Maybe this truck is different but then I thought I better pass it anyway just in case is starts throwing excrement backward. If I passed it now I could potentially dodge the s*** storm. As I went to pass it nothing came flying at me so I slowed down because I was just sure this was too good to be true. I decided to ride along side the truck and nothing bad happened. Not one thing. I looked at the truck and there were baby horses along for the ride and we made eye contact. This truck did not belong behind me. It was meant to be right beside me.

Then it dawned on me.

Just because the truck of the past was so damaging does not mean that all of them are. Some trucks may even have precious cargo to fall in love with. The new truck may even be blue which happens to be your daughter’s favorite color.  This truck is not going to leave you scared, or alone, or broken, but rather leave you with a newfound appreciation for life and the opportunity to share it with someone who is healthy.

Cory. Thanks for being the truck that should have been hauling this cargo all along. I can only pray that the future for us will have ups and downs and that we can tackle them as a team. Together. No longer alone.

In fact.  You know what? We already are. Today. The aloneness is completely gone and God knew this exact plan all along. He was just waiting for us to catch up to his truck.

The Happenings at the NIH...

Finally I have gotten an opportunity to write a longer explanation of what is going on and what has been learned while here at The National Institutes of Health UDP program.

First things first they think they know what is happening to Kamiyah. They are currently running tests to confirm it and one of them is being sent to New England to compare genetic markers that would have caused this. They believe it is Narcolepsy Cataplexy.  If this is the case there is no cure, no treatment, it will not progress but it will never get better or go away. If this is in fact what it is we will just have to learn how to adapt. Kamiyah will never be able to drive or live entirely independently because an accident will kill her before the actual disease.

That is a hard pill to swallow.

Physiatry

This department discovered that Kamiyah is double jointed in ALL of her joints and that is why she is so clumsy and has a hard time stopping once she gets going. It explains the falling (not spell related) and why it is strange to us that she may fall and trip even when she is not "gone".

They have also figured out why she walks on the front of her feet. Her feet are so flat and her joints do not lock so it is her attempt at controlling the pain and to control her motion. We will be getting the very very expensive shoes and supports when we get back to Sioux Falls.

Developmentally they suggest demanding a Peabody developmental test to be done outside of the school district because she is behind and clearly the school is trying to skirt having to pay for an aide. If she does not get an aide she should not be in a public school or riding on public transportation because she cannot stop this from happening and the noise and hustle and bustle of alot of people will cripple her. The NIH is connecting us with the right team to come along side of us so when we get back home we are all on the same page and Kamiyah can lead the most normal life possible.

Physiatry also wants me to get a special type of swimsuit so she can still do something she loves but would reduce the risk of drowning if she were to have an episode in the water. Swimming has always been very very dangerous but Kamiyah absolutely loves it so I will order that as well.

As far as a helmet to be able to participate in activities they believe it will do nothing but cause more attacks because of the nature of what is wrong with her. They are hell bent on her just having a one on one person.

Sleep Lab

The sleep lab has recorded almost every type of attack and that is currently being gone over by a specialist. No results have been released as of yet.


Heart

This is absolutley normal and for this I am thankful.

Other findings

It has come to the attention of the doctor and us that Kamiyah's SAT's drop when she has these attacks. Her heart rate decreases and her oxygen level drops and then spikes back up when she comes out.

Weird.

Sedation

They are taking pieces of skin, doing a full body MRI/X-ray, getting a lumbar sample, doing an ABR for hearing, as well as checking her vision because the doctor thinks her vision has declined yet again.



That is all I have for now.... I have posted a picture of this weeks schedule, the team of people working for Kamiyah, a pic of her being a tiger even though she was exhausted, as well as the swimsuit they are saying she should have. Be sure to be following on facebook for short blipits of our journey and what we are dealing with in real time.

Much Love,

Breteni

The truck.

As I was driving home from work on the interstate this evening I was following a semi.  It was a simple semi, one that looked common with its typical silver back drop door. It did not strike me as a livestock hauling truck by any means. However, I started smelling something really off.  I looked at the side of the road to see if any animals had died or what could be causing the foul odor.  There were no animals.  So I crept a little closer to the truck and realized that it had to be carrying horses.  So I decided that the only way to get away from the smell was to pass it.  The problem with passing it was that I would have to watch out for cops and speed up enough to top its speed in a timely fashion. 

This seemed like a really great idea.  I got up the confidence, I checked my blind spot, I made sure no one was getting hurt in the process, however, I failed to predict what happened next.  As I picked up speed animal excrement started blowing out of the side of the truck and hitting my car.  I started to doubt whether this was the best decision and I quickly became discouraged and wanted to give up.  The odor became stronger and now it was coming at me in Mach speeds.  I almost let off the gas and slipped back behind the semi just to avoid this incredible mess. 

Then it dawned on me.

The semi truck was like my marriage.  It seemed normal from the outside but once you realized the extent of the damage you could not help but believe that there has to be another life. One of health and holiness if I could just get to the other side. One free of broken bones and concussions. One where my wrist was not fractured and my foot did not cause me to lose my step. One where sleep can take place without the fear of what he will do next. A life where lie after lie after lie to cover up the bruises was no longer the reality.

It was at that point I decided to just gun it. I was just sure if I could get beyond the truck that life would improve.  I was even starting to see the sunset from the left hand lane. One thing I did not think of was that I needed to let the air out of the car I was driving because it was just circulating that smell even though the truck was 5 cars back.

I thought once the divorce was final I would be past the worst of it.  The truth of it is,  the healing has only just begun.

Folks. I cannot say much but I can tell you this.  The truck smells alot better from the rearview mirror.  I hope that as time goes by the pain will decrease and the joys of life will increase.

Pass the truck. Whatever the truck is for you. Pass it. It is the only way to experience life the way God has it planned for us. 

And I just know it has to get better than this.

Garbage Pt. 2

Remember my last post when I touched below the surface and said what the rest of the world wishes I wouldn’t have?  You know, the one about Garbage.

Today I am going to go even further and talk about what can happen when you try to deal with the problem at hand.  I may even give you a few hints on how to conquer it.

Now that we are past the point of recognizing that the garbage needs to be taken out the next step is to actually implement a plan of attack.  This can get tricky.  Sometimes the people in your life like your garbage and will try to convince you that you need to keep it and maybe paint it a different color.  Mold can still grow on the color purple folks.  Even if you choose green it will still eventually start to reek.  You and ONLY you can decide whether or not your garbage can truly be salvaged.  Do not let anyone make you feel bad that it’s only future home is going to be the landfill.

Once you have decided where your garbage is going the next task at hand is to figure out how you are going to get it there.  Do you need to create a support team?  Is an accountability partner an option for you?  Does someone else need to be protected too?  Sometimes it is hard to see but our children can smell the garbage long before we can see it and many times they do not have the words to get help like we do.  Make sure all of their bases are safe too.  If we leave them out of the equation we will never hit this ball out of the park.

The plan is in place, you have your bucket full of confidence and you are just sure that you can overcome any obstacle.  You think that there is no way this can get any harder than the last few steps you have taken.  I am here to tell you that it can and you need to have your shield ready for when it does.  Garbage needs to be removed in layers.  It cannot all happen in one day.  Maybe today you will go buy some sturdy bags.  Or perhaps you will get a broom that can tackle the biggest piles of dirt.  When it comes down to brass tax, however, you will realize about half way through you become exhausted.  It feels like the garbage is procreating right in front of you faster than you can scoop it into a canister.  This is when you call upon your team. Tell them to bring bags. And smelly spray.  Let go of your shame.  Warn them ahead of time that this is the hardest thing you have ever done and to be sensitive.  Express that you are embarrassed, accept their hugs, cry, and then remember to actually breath.  When you calm down and pick yourself back up you will notice that the pile is getting smaller and more manageable.  Much less daunting and scary.

Never ever forget your team.  And remember, we all have blessings and struggles at different times.  The people that you have called upon will someday need you to help them take out their garbage as well.  When you get that call, grab up your extra bags and your bins and high tail it over there. Who knows? Once you arrive you may notice their garbage has become so moldy that it has grown its own pair of legs and is ready to take everyone down to their knees. 

Be. Ready.  Because heavens knows there is no way you can let the garbage do the same damage that it had done before.  You are ready this time around. 

You've got this. Your strength is immeasurable. If you don't believe me just ask God. He has been there all along. And he loves you more than you can ever fathom. 


P.S. These pictures were taken AFTER 12 car loads of garbage had been taken to the dump. This made me tired. This messed up garage was the story of how bad it had been for way. too. long.