Things you only hear parents of sick kids say

1. I didn’t find any drugs in your room do you know where they are?

2. We don’t have ice cream in the house so I’m going to the store now.

3. She has only had five seizures today so that’s good.

4. Do you have any needles?

5. You cleaned the kitchen? I told you not too.

6. We are going out be in the same place when we get back.

7. Oh no the dog is allowed in the ICU it’s a service dog.

8. Do you have (random disease here) I can’t keep track of them.

9. Don’t take a shower by yourself.

10. How many epipens did you use? Only 4 right? That’s a pretty good week.

11. We busy on fridays we go to the hospital.

12. I can’t seem to keep your wheelchairs seat belt from getting tangled in your wheels.

13. Yea she’s fine she’s just having a seizure.

13. Your drugs are in my room

14. Eat something that has the most sugar in it.

15. (Something falls and makes loud nose everyone in the yells “ARE YOU OK SHAY”

What it looks like 

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1; the video above shows my right shoulder popping in and out of place. Which is caused by EDS Ehlers–Danlos syndrome a collagen disease that cause none or lack of collagen it is a genetic or mutated gene that I was born with. 


2; this is my left foot turning in a way it shouldn’t be able to do. This is also caused by EDS but it was made worse after a stroke  that I had either when I was seizure for 7 1/2 hours or when I was in my first coma, which I had to be put it because of seizing for 7 1/2 hours. 


4; as my hereditary blood disorder which causes my red blood cells to die to fast which makes me have low blood counts. 


5; anaphylaxis, or anaphylactic shock is something that I have to deal with daily and and that requires me to be on IV Benadryl every and every single other anti-histamine out there I am allergic to so many different foods  smells and so many other things
Part two will be published soon.

Happy anniversary!! You’ve been married 32 years

My parents met because my moms best friends who we. Call her aunt faith! Faith had told Sherri (my mom) that Steve (my papa) was a great listener. But on my parents first date my papa talked the whole time! 

 

  Which is adorably funny. There went to the same Bible college. My mom felt God telling her she needed to marry a pastor. 

Which she do for sure! My parents have been through a lot. Being a pastor being the homeschool teacher. They believed in us children. They made my life better for me. Easier for each of us children. 

  The scary times happened a lot the ones that shake your core. 

   My parents didn’t buy a new car we had used cars. They did this because they wanted to make things easier to do Gods work. And they never wanted the car payment to hold us back from doing things. We got to learn what is important and what’s not. We learned to by what we needed not always what you want. 

  Our parents loved. We went to Christian camps we did VBS We all played sports we got

To learn in such a way you both of you have been wonderful!! You are in more wonderful now!


  You showed us the art of being loved. Having a wonderful kind mind. 
Mom papa you didn’t just have a wedding and went about life. But you guys worked harder and harder. You have built our family! 
  Lots of heart breaks but way more love kindness. 
Through the grace of God you did everything. I love you both 

It happens fast 

The top left photo is taken 4 hours before all of the others… when you think allergies some people thing of swelling running nose itchy eyes and skin. Which is true…

  Anaphylaxis is scary… sometimes fast sometimes easy and all confusing…
This is a peek into this horrid disease. 

My lovely parents 

As the past few years have been horribly hard but yet amazingly beautiful! My wonderful mom and papa both have been willingly to be here. They have given things up. They have become my caretakers. A role that might

Seem small to some but to me it is what I need. Everyday my parents have to deal with very talkative not around people much shay which I’ll admit can be annoying and hard. My mom has dealt with my emotions everyday. Tells me positive things and keeps moving forward. My mom in the past few years has had at different times take care of me and my papa. My papa had open heart surgery in July of 2015 I had my first coma during July 2015 did the stress from being in a coma Make his heart attack? Most likely because if you were insanely calm while your child was in a coma i think it would be worrisome. But with grace tears and lots of fighting for me and with me. As we all tried to fight off death. We came closer. My parents have had every reason to be horrified for my life. I have watched and felt the guilt of being in and out of the hospital. Being sick. Being someone who wanted to take care of my parents when they got older. But instead they had to take care of me. My papa is strong and brave and has looked up disease after disease. Medicine after medicine. Medical history.. it’s not easy believe me. I am amazed by the love and kindness of my parents

  My mom is so amazing. She is one of the most Godly women you will ever be lucky enough to know. Both my parents are wise humble and loving. I’m insanely blessed to have them and to love them. I love them more then I could say  

mast cell activation syndrome 

     

Imagine slowly as you age becoming allergic to close to all things that grow outside. Imagine me the tree hugger, Gardner, green thumb, beautiful outdoor air lover who was holding a bottle of Benadryl in my backpack to make sure I had it on hand during spring.  As the seasons changed and the years went by I become allergic to more and more adding to an already long list of animals, grass, trees, dust, strong smells, and then at 17 years old I started gaining more and more food allergies. From corn to soy to wheat to cherries. They kept growing. Everytime I went to the dr I had more.  I had two epipens with me at All times. I had my Benadryl right next to it. I read everything I ate. If it was something I didn’t trust I didn’t eat. One summer I was doing mission work and lost a lot of weight because as a vegan allergic to over 30 foods I ate bananas rice and black beans mainly for the whole summer. 
   This kept getting worse. I was allergy attack away from using an epipen at all times. 

   In 2014 a doctor spoke the words mast cell activation syndrome… I wasn’t officially diagnosed till a while later. 

   I am not fearful of what I’m allergic to but I do fear of what I’m gonna become allergic to. 

  My mast cells are having way to much fun. 

   But one thing my mast cells don’t seem to understand is that I’m way stronger then them… 
  


I will wear a mask with a filters on it whenever I go somewhere to

Keep my allergens from upsetting my mast cells and sending me into anaphylaxis. I know had a picc line in my arm that will keep the iv Benadryl I take six times a day at least flowing into my body. I keep 6 epipens on me. My mom has benadryl, meds and epipens in her purse. She has flushed and small green caps I keep at the end of my line. My papa has epipens in his backpack he has flushes extra tape Meds for seizures flushes for my line and those little green caps. 
  Stephie and Nick im sure find these types of things around there house. Sorry about that
  My body is slowly becoming allergic to everything with no FDA treatment. Who knows what’s gonna happen but I will not fear. Because this rare ShayWeasel living inside a rare body isn’t fearful of the unknown because everything I’ve ever known is unknown. 
Soo every time I go from vampire pale to insanely red know that my mast cells are doing what they do… making anaphylaxis

Be aware of the rare 

ShayWeasel 

How Being Asked If They Could Pray For Healing Changed My Mind

  The other day I was at Kmart for the main purpose of peeing… 

    Now I had just left a horrible doctors appointment that made me feel like I was doing everything wrong. 

   My papa was checking out when I sat down near the exit of the store. I was sitting on my roll aid walker and a lady walked over to me and said ever so kindly “can I ask what’s wrong with you!?” 

  I explain that I had a few rare and life-threatening diseases and that I was basically allergic to everything. 

   She felt bad she said “oh I’m so sorry you seem so lovely I’m so sorry you have to deal with this. Can I pray for you?” I nodded and said “yes praying would be ok” 

   She smiled and said “I’ll be praying for healing for your little body” 

  I smiled and without thinking said “can you pray for understanding, love and acceptince instead?” The lady’s smile grew very big and she said “young lady I can! Thank you for your kindness.” 

   I then said “what can I pray for you about?” 

 She went on to tell me her name was Nancy and she was facing some scary health problems. I told her that I would be praying. I gave her a link to my blog and then said “feel emotional. It’s ok.” She hugged me with tear filled us and said thank you. 


   I walked with my walker out of the store telling my papa what happened. 
  A few hours later it hit me really hard that healing isn’t what I’m looking for. I’m looking for better treatments for love, for understanding and acceptance. 
  I have it. I have understanding. I have acceptance. I have love. I don’t have better treatments but 3 out of 4 isn’t bad! It is ok to not dream for healing but to dream for life…
  I’m ShayWeasel I’m who I wanted to meet when I was a child. I became what I needed to survive. I don’t healing. I need understanding. And I got it. 
ShayWeasel out…