Lucky.

Recently, Kamiyah's wish to go to Disney World became a reality.  We spent 7 days and 6 nights at Give Kids the World (GKTW) in Florida. If you don't know what that is google it and be prepared to have your mind blown. It is nothing short of astonishing and the most exclusive resort humanly imaginable.  Why? It is a place where only terminally ill kids are welcome. 

That's right. A place you can only go to if you have been told there is nothing else they can do and to make the best of what time you have.

I say it was amazing, however, I can also say it is a very harsh awakening to the reality of our situation.  I live day to day in a fog of denial about what is affecting Kamiyah. It has become a way of living and we get accustomed to the looks, the stares, the episodes that don't allow her to shower alone, the fact that driving will never be an option for her, and swimming is out of the question (she thinks she is a fish).  I never realized that these obstacles could be gone because a community of other people are abnormal too. Falling and dropping your food in the dining hall is expected and handled as if it never happened.  At GKTW, these problems don't exist, no one stares, the outdoor pool is heated so she can swim freely, and the carousel has a strap that prevents her from falling off the mythical pony she has always wanted to ride. 

While at Disney world a person in line got mad that we were moved to the front of every line.  She snarked, "they are lucky." Before we left home we were told by multiple people how lucky we are. 

The truth is I would trade my spot in line for Kamiyah to be healthy. I would swap our all-expense- paid-vacation to wake up every day not worrying about how Kamiyah would ever function if I were to pass away.  Trading this magical trip for all the days I have spent in hospitals begging for an answer would happen in a heartbeat if it were an option. 

But guess what?!?  It's not.  When I get off of that ride and go back home the seriousness of Kamiyah's situation will be the same.  Her medical expenses will pile up on my desk and the concern of her future will continue to be on my shoulders. 

You can call us many things... strong, brave, amazing, grateful, and mighty.  "Lucky", however, is not one of them.  

Our trip to Kamiyah. Magical.  The trip to us...bittersweet and beautiful.  I would never ever ever call our trip "lucky." 

And neither should anyone else. 

 

25 things you might not know about me...

I have seen a few blogs do this such as this one  (my favorite) and thought it could be fun soooo.... here goes!


1. I didn't go to college right out of high school because I didn't want to be required to live on campus with a roommate because I feared they would steal my underwear. To this day everyone in my family knows my undergarments are off limits. I will only buy them at Sams club. Weird. I know.

2. I cried at Kamiyah's ultrasound for 25 minutes when I found out she was a girl. I was quite concerned about what was going to happen to her hair and I had no idea how to manage it. She is part African American. She has the most beautiful hair I have ever seen.

3. I applied to Augustana just to see if I could get accepted. When I did I was like "huh, well I hope I succeed." And I did.

4. I met my husband on tinder because of a $50 bet from a girlfriend. I met an amazing man. I also made $50.

5. I am passionate about 80's love songs and will win a lip sync battle hands down. Especially in the car. While driving.

6. I despise coffee. Even the smell.

7. All the girls in my family have the same middle name. On purpose.

8. Being pregnant made me ragey. They say you forget over time. I haven't and won't. My brain hurts just thinking about it. I need more control than what pregnancy has to offer.

9. I led a group of woman to sew 156 dresses and we clothed an entire village (the young girls) just south of Sierra Leone Africa. Most had never had their own dress before. I plan to do it again.

10. I never drank alcohol until I was 30 years old and to this day cannot drink much at all. I will talk a big game. I will also only take one sip.

11. If you have dove chocolate covered cherries, sparkling coconut water, and Cheetos I will join you on a road trip. You better bring your "A" game, your phone charger, and good selection of music because I am relentless about #5.

12. I make to do lists and conquer them at mach speed. My husband sometimes takes them and adds smooches just to get a rise out of me. I refuse to cross them off the list because you never know when he may need a few more.

13. My favorite movie is Pete's Dragon but then again I like Willow, Date Night, Liar Liar, Children of a Lesser God, Harold and Maude, Monty Pithon and the Holy Grail, and The Shack and will more then likely call them my favorite too. I can't help it.

14. I married (and divorced) a man who almost broke me. What you may not know is that I only wish good things for him. He is doing well.

15. If I could have my way I would live anywhere my people are. I just want them close by.

16. I name my vehicles. My current car's name is Sally.

17. I use music to cope. The louder it is the more stress I am trying to drown out. My car does well with this and she understands me.

18. I hate getting up early on weekdays but get up early on weekends because I can't handle wasting the day. I can't explain it. It will never change. I sometimes whine about it.

19. I climb up the crazy tree if I get too hungry. I also cannot make decisions wisely while up said tree.

20. My family is not perfect because I am in it. I love them anyway. No matter what.

21. I once judged people who got divorced and thought they didn't try hard enough. God has a way of putting us in our place. I was wrong.

22. I gave a speech in college and wore a bra that connected in the front. It came undone half way through my speech. I have never had a nice chest and this did not workout in my favor. I somehow got a good grade but it was probably because the teacher felt sorry for me.

23. My bucket list actually exists in paper form and I have crossed quite a bit off. I have yet to see "Ellen" live but I have talked to her on the phone for 9 seconds.

24. I never wanted more than two kids. We have 3 total and I wouldn't change one moment of it. I struggle with calling them my step kids because they have my heart as if I have had them all along. It showed me how adopted kids are loved just as much if not more and it makes sense. For this I am grateful.

25. I cannot stand baby food peas, cocoa butter lotion, or country music. I firmly believe if I were to visit hell all three things would be there. Hence the fact I have a savior.

Making this list has been amazing and you should do it too.

Thanks little old house.

I got to thinking the other day... I know... brace yourself.

Divorce and remarriage is remarkably similar to selling an old house and buying a new one.

When you approached the old house it looked like it had been through alot. It also seemed as though it was functional, full of potential, and the damage that existed was repairable. Not permanent.

Perhaps the damage could be costly and require quite a bit of time but in the end it could be worth it.

So you get busy and you start working on projects to better the situation. You throw up a new door, you repaint a few rooms, you have massive dumpsters hauled out to get rid of the years that have collected in the unused spaces.

You may run into a hornets nest. You might realize the one dumpster wasn't enough. Getting so exhausted and deciding to just sell the house as is and let come what may might also become a possibility because you know you are in over your head.

The one thing you do know, for sure, is that no matter what happens you will leave this house better than you found it. The adventure of trying would be worth the effort and lessons could be learned along the way.

Then someone wants to buy the house. They see the charm that it possesses and thinks it is worth the battle.

All of the sudden the repairs that you did not want to deal with have to be dealt with in order to meet the requirements of the buyer's mortgage.

By now you are committed. You have even signed the contracts and gathered up moving boxes.

All of the things that happened to the house in the past come back because sweeping the problems under the rug no longer works when the rug is removed from the picture. The house needs more paint, a hand rail, a chimney removed, steps repaired, ceilings scraped, drywall replaced, cracks filled, holes sealed with rubber patches, septic systems pumped, etc...

But here is the kicker. You can't move on until you do it. The hard work needs to be completed before you can enjoy what lies ahead.

You cry, you pray, you call those in your immediate circle, you negotiate with contractors, you establish your limits, then you start knocking away one issue at a time.

Then and only then will you realize how deeply you love the person you came upon this little old house for.

The house was not the problem. What happened to the person in that house is what has to be overcome and then it sinks in.... how you feel is nothing in comparison to what he must be going through. He was abandoned in this sinking ship and he is well aware that this should not be your problem and he is deeply saddened that it is.

I love him enough to:

- paint in the cold
- spend hours in the old basement
- wade through inches of water at 3am
- support the local hardware store single handedly
- read pages upon pages of home repair instructions
- get high off of rustoleum and paint the door knob and forget how it happened
- spend entire seasons plotting and fixing and throwing things away
- foot the bill when finances get stretched thin

He loves me enough to:

- do the entire above list
- remain optimistic
- take my calls of sheer panic
- shelter our kids from the stress
- pray from his heart when we can't take anymore

And to be quite frank... I would do it all over again if it meant I would get to spend the rest of my life by his side.

Once this storm is over there will be a new adventure and I am willing to bet that we will use these lessons from the old house to weather whatever comes our way. Together.

Thanks little old house. Enjoy your new owner. I have a feeling she will look back and thank you too.

~Breteni



Could it really get any better than this? I am excited to find out. <3 p="">

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.