My photo
Hi There, I'm Kris. I'm a quirky sort who loves silly jokes, sunflowers, music, divine interruptions and music. I am devoted to my nerdly, ginger-haired husband, our 3 living & growing kids, and missing our 1 Babe in Heaven. We journey together through this life, dancing to our own beat, while learning each step as my children and I are effected by a life-threatening & degenerative chronic illness called Ehlers Danlos Syndrome (EDS). Please look on the "What is Ehlers Danlos Syndrome" to the bottom right of the page to learn more about EDS. I believe I have been given this journey in order to over come it, and this is my story of how I get it done.

Saturday, December 10, 2011

I am up on this cold, cold morning...thankful that I am able to lay in my warm bed a while instead of getting up for work....ah...first gift of the day...
Adding more clothes on top of my pajamas
I trudge out to the kitchen for a cup of hot coffee, already made by Husband & waiting for me in the pot.....sweet gift.
The kids are all up & quietly going about their activities.....so nice now that they are older.... :)
 ::::creak:::::ache::::POP!:::ooh-need to be careful of that joint this morning::::gasp::::eek....chair...ahhhhhh
So here I sit.
I'm thinking a bowl of hot, freshly made oatmeal w/ honey & walnuts is in order...however this busy week has resulted in a kitchen filled with dirty dishes; no clean pot, nor even space on the stove.  Aching hips have decided that coffee will suffice for now.

Perhaps a bit more sharing time is in order this morning: 
<3 I have a family <3
 My husband and I celebrated our 12th Anniversary last weekend by taking everyone to see Arthur Christmas- it was a great movie (said by someone who is a pretty staunch critic of kid-movies).  It was nice to do something fun & silly with the kids as a celebration of our 12th & most difficult year of marriage so far.  Together, we have been blessed to have had 4 children; 2 girls & 2 boys. They all have EDS too in various degrees; 
M-11, our first daughter, has classical hyper-mobility & no other symptoms; she is "gifted", artistic, insightful & loving- and could, I bias-ly believe, find a cure for EDS if she wasn't so terrified at the sight of blood, sickness or hospitals (because of how often she's been forced to watch her siblings go through terrible hospital stays)- so she will just make some other amazing mark on the world.  She carries the burden of being "the healthy child" and yearns for a friend with the same lot in life.
Baby-J, our first son came next.  He died a few days prior to his birth from spontaneous vascular rupture= we now know as EDS; so I don't yet know his personality, but I miss him terribly.  We were told his death was a fluke & so his vascular rupture was ruled "idiopathic" (they don't know what happened).  
A-9, our second daughter, is a bit more complex; she was born prematurely and has mild cerebral palsy as a result- which seems to exasperate the effects of EDS and vice verse.  She has been in & out of the hospital her entire life and has endured many surgeries, complications and has many attachments.  She is also very smart (honor roll), however her intellectual intelligence over powers her emotional intelligence- which makes social environments complicated.  She is a spitfire- so watch out for that one.
C-7, our second son, came last.  He was born right at the margin of premature/full term which was a blessing (since he came so quickly, I was still in my car- funniest story ever, I'll have to remember to tell that one).  He was completely healthy until he was 15 months old and has been hospitalized for a mysterious illnesses since then, though no surgeries other than the normal childhood tonsillectomy.  His biggest illness was when he was 5; he nearly died before my eyes of ITP, or Idiopathic (God, how I hate that word) Thrombocytopenic Purpura = his own immune system was killing off all of his platelets.  Since then, he is still sickly, small and seems to suffer from chronic fatigue.  There are no studies relating Immune Deficiency to EDS, but since the spleen is made out of a different type, but still connective tissue, it would be hard to convince me otherwise.  He is a sensitive soul, a thinker, loves puzzles & building things, hates hate and sadness & is burdened when he see's or hears of it going on in the world.
With all that we have on our plate, it won't surprise you to know that I was a stay at home Mom for 10 blissful years & 4 months; they were blissful, but not boring.  Husband lost his job in June 2010, I started back to work that Sept. and life has been alien since.
Dealing with my EDS as a working mother is almost an oxymoron at this point.  I have no choice but to do what I can do.

So that, is as they say, that.

Me & Husband the day before our 12th Anniversary; we are nerdly love
A-9 resting with our current Furry Foster Friends (we foster dogs for a local dog rescue)

Husband helping C-7 place the Christmas star

C-7 & M-11 last weekend at the Christmas Parade

My Hearts & me; layered up and ready for a parade.


  1. Hi Kris,
    what a beautiful insight into your family! They sound like great kids and the "nerdly love" pic of you and your husband made me smile. I love to see people who are still in love after so long together!
    Have a wonderful holiday season!