It makes me beyond terribly sad that my husband is so sick.  After four days of entirely no sleep for him, he finally fell asleep in his favorite lazy boy recliner with a container of Duff's red velvet cream cheese ice cream, (his favorite) in his lap. Honestly more got on his self proclaimed night shirt, favorite can't sleep without it blanket, and chair then in his body, but he hasn't lost his independence:) Of course I can not sleep, when he doesn't and especially when he does....out of fear. What if it happens again, what if I don't hear him, what if I am doing this because I want to look back and have these memories, but mostly I am afraid that it will be the day and I will do everything in my power to not let that happen. I love listening to him breath it calms my nerves.  I've never been a fan of Brandon's CPAP machine, don't get me wrong I sell that device daily to him like it is the fountain of youth, but it came along and disrupted my borderline frantic routine of life guard.  Tonight he isn't wearing it.  He should be, he need's it, but I try to relinquish some control and let him be as independent as possible...

I can't imagine how he feel's, physically and mentally.  EVERY single cell in your body, except red blood cells, is affected. Honestly I feel like mitochondrial patients are  like Bella and Edward's daughter, Renesme.  Beyond beautiful.  I can not believe that my husband's body is severely aged  from COX deficiency, but that he has a majestic appearance, maybe I imprinted and that's why, but you would think eight years later, I would be use to it by now, but I hope I never become. 

When Brandon becomes "hypoxic", when his brain does not receive enough oxygen, he says the funniest most memorable phrases.  Today he was snacking on teddy grams and as he was dipping them in milk, he said that my mother, his "best friend" quote: " would take somebody's knee's out for some teddy grams!" I love these moments, I laugh so hard and he is so serious.  He said " He knows she told him."

...today was awful... 

Have in or be able to bring to one's mind an awareness of (someone or something that one has seen, known, or experienced in the past).

It all went by so fast; I still can't change the past
I always will remember, everything
If we could start again, would that have changed the end?
We remember everything. Everything. 

http://www.youtube.com/watch?v=7G8QItjTSDA

I DO NOT OWN ^^ THESE LYRICS OR THIS SONG, I AM USING THEM FOR REFERENCE MATERIAL ONLY!

Haunting, is the word that I would use to describe this song.  You can tell that the person singing has been through some shit...I to have had my fair share and my vehicles radio has had it's fair share of this song replayed, again and again.  This song came to mind tonight because I am TERRIFIED of what I will remember and what I've already forgot. For now I can not forget a HOUSE episode of a young lady, who remembered everything and I mean EVERYTHING or was it she couldn't forget anything? She was brilliant. Coincidentally this particular episode aired in 2011,  and I didn't see it until it was a rerun in 2012 and by then my husband was already diagnosed, with the same disease that this woman had... by the time I saw it I was an "expert" in the medical field, with no prior training.  The hour long viewing came to conclusion with me screaming to my husband " I fucken' knew it!"

But knowing didn't help her or my husband.  Even though an actor, HOUSE's, genuinely sympathetic diagnoses, didn't help me. 

September 27th 2o12 my twenty-five year old husband was diagnosed with a T E R M I N A L disease.  Looking back I wished they would of withheld the terminal part for the end of the horrible news encore  because devastation causes deafness and I still, to this day, five months later do not understand this condition or what these physicians "playing God" had to say for the rest of that two hour appointment.  I have googled my little heart out but, psychically, never have gotten over that word.  One word;        T E R M I N A L robbed me and I have been a hostage ever since.
So Hello I am Lilly who cognitively stopped progressing from that day, that minute, literally, seriously I AM AWARE OF IT, but can not change it.  Just speaking about it causes a knot in my chest and in this case, acceptance isn't the first step. I accepted months ago that I have been through some shit but then this "new" me comes in and adds to the exhaustion of figuring it out, or attempting to.  Prior to April I was never so sure of myself: fast forward to February and I catch a break from the cognitive lapses to realize that I have became this way out of fear, because of love, and unwillingness to surrender. I'm selfish! I'm devastated! but some how I know that I am blessed

Hope Forr My Husband

This was written four months before we heard the news that I will never forget, ever.

• • March 2, 2012 at 6:00am until May 18, 2012 at 9:00am

• Viral, ,

• I am making this feed because I feel like at this exact moment it is where God is leading me. I want nothing out of this except to be heard. This is my story seen through my eyes and very much felt through my heart. Today started as any other day, today I almost lost my husband. Brandon started getting sick in 2008. It was small things like blood in the urine but were adding up to bigger things like tumors in his mouth. Tumors that would lead to many unsuccessful painful and heart wrenching surgeries. Biopsies, cancer scares, bone graphs and ultimately the removal of his two front teeth. I will never forget that day I thought it was the worst thing that could ever happen, and I felt for him...God I felt for him. I now know it was not the worst thing that could happen. It was only the beginning. Then he developed a heart problem. His heart rate has not been under 100 beats a minute for the past 4 years. He starting loosing weight (close to 70 pounds) and developed muscle weakness. I came home from working two jobs one night to a 24 year old husband who could not walk or control his bodily tremors. This lead to two weeks in the hospital, a spinal tap with no anesthesia that was unsuccessful and many many many specialist follow ups as well as physical therapy. All of Brandon's blood work is coming back abnormal and positive for lupus, muscle wasting and adrenal abnormalities. Which leads to more testing. July 2010 as a requirement for testing Brandon goes under the knife for a quadriceps biopsy, a routine procedure. This was on a Thursday. I called Friday because as soon as we got home he started bleeding not profusely but enough to make a stream down his leg. I was assured this is normal. All weekend I struggled with taking him to the hospital for the continued now profuse blood loss or waiting until Monday. Monday came, a now immensely swollen( bleeding through ace bandaged) leg we were back in Lafayette for a follow up. Brandon had developed a hematoma the size of a grapefruit underneath the sutured 6 inch biopsy site. The doctor had to dig this and the the hundreds of little hematoma's out of an exposed wound that was bone deep with no medicine. Apparently during the muscle biopsy an blood vessel/artery was cut and being that Brandon's wound was shut the blood was pooling and creating this blood clots under the skin. On our way home we stop at Walmart to pick up Brandon's prescription, he bleeds out and rushed into surgery to stop the bleeding. This is the second time I almost lost my husband. A hospital stay, a nasty infection, almost loss of a leg, and painful dressing changes 8 months later, it is still healing. Brandon got put on a new heart medication two weeks ago. He has been very sick every night after taking this medication. Last night he was not sick. We woke up and started our day. I noticed Brandon wasn't talkative and mentioned this to him and he had just said he didn't feel well that his stomach hurt. I just left it at that. We decided to watch a movie. During the movie I look over and see Brandon covered in sweat and panic while I try to address the issue. He says he just doesn't feel right or well for that matter and hes having heart problems. From our room, grabbing nothing but shoes to carry, by the time I got him to the car door he was feeling like he was passing out. We live outside of Lafayette. I know many people would ask why I didn't just call 911. He wasn't that sick at first and I knew if he was going to be it would be smarter/faster for me to meet them instead of them having to come this way and head back to the hospital.  I drove 90-95 mph blew red lights and 10 minutes down the road I had to call 911 to a husband vomiting blue, bleeding from his nose not responding and convulsing. I was between a rock and a hard place knowing I needed to stop for a ambulance that was somewhere behind me but knowing the hospital was a few miles in front of me. The first time I pulled over I couldn't wait and didn't see or hear anyone. (The whole time I am on the phone with 911) the second time I didn't realize until after but I pulled in the middle of the road in front of a church, and I heard the sirens from behind...Thank God I heard them, I was screaming at Brandon and he wasn't responding, I was screaming at 911 that someone needed to hurry. When they arrived his blood pressure was 250/87 his pulse was 200+ his oxygen had dropped below 70 and he was continuing to bleed from his nose and lost all control of bodily functions. I will never feel so re leaved as I was when Brandon was loaded into the ambulance. I held it together and I was fine until I got off the phone with Brandon's mother Tammy and then I bawled as hard as I could all the way to the hospital. It has been a long day but I am so happy to say that Brandon is now home and we are both recovering. I write this knowing that this is the first that many of you will hear of any this. I use to care about what people thought of us. About how yes we are married and yes we live with my parents, yes we have medical debit and creditors call my phone all day long. If we wanted a big house, a nice car all these things we could have them, I could have them but if I were to EVER lose Brandon to this condition he has they wouldn't matter. I would have no one to share them with. Brandon and I have struggled with infertility since we have been married and I use to be ashamed I have PCOS. I would hear "It will happen when it happens" or "you need to wait until your financially able" or "with Brandon being sick its something you could pass to your child". I may not have it all together but together will have it all. We are continuing to pursue our dreams of being parents with or with out support. If anything ever happened to Brandon and with him cheating death 3 times it is about time good things come our way and he get to experience something other then suffering for a change. He is alive as long as he has fight left in him and with specialists help we have hopes for a diagnoses, treatment and recovery in 2012! Its 3:15 A.M. and I am so blessed and thankful to say I am now going to go to bed next to my husband another night. Now I know the only thing I would be ashamed of is losing my husband to something that could of been diagnosed sooner.  God Bless You Thank You for the support and please forward to everyone you know, who they know etc. Please let Brandon's story be heard, it could help someone going through the same thing. This is MY HOPE FOR MY HUSBAND. Brandon, I am so thankful for the determination to be here with me. You are my good morning and goodnight. I love you more and more everyday. Love, Your Wife

a.moment.in.time

 

My name is Lilly and I am twenty three years old, I am trying to save the life of someone whom I can not.  There are no books on how to deal with what I am dealing with, but I am trying to write one of my own, this one to help myself, my family and most of all my husband.  I am making the war within my head public, because a year later my heart has swelled with unbelievable amounts of trauma, fear, anxiety, and nightmares that have suffocated me constantly of my voice, myself, and most of all love...my love. Even as I write this my "young brain" can not, lay off for just a minute, it is the child throwing a tantrum outside the bathroom door. I feel like a sniper listening to every sound in the middle of no where, but my sound is my twenty five year old beautiful husband sleeping and my no where is right here on our living room floor.  Before April 2012 I would of thought this was heaven, but now I can not relax to escape my own hell. The hell that I created, but go through what I have and find a solution, find a cure, that's all I want and the words posted above could be deleted, erased and I would be Lilly twenty three years old not saving anyone's life, just Lilly....just a cure...



for the most beautiful person I've EVER laid eyes on, and there will never be a day these eyes do not tear up captivated by this moment in time. Staring at this allows me a minute to escape my myocardial infarction and screaming toddler inside my head and     r-e-m-e-m-b-e-r...and I do, but there is a day that beats this day, and I will never forget either.