Dragonfly Day

Today is Dragonfly Day; actually the kids call it Joshua day.  Joshua was our second child, our first son. Dragonflies have always reminded me of Joshua because they are big, they are beautiful and they are silent, just like he was the day he was born 11 years ago.  Joshua died just days before he was born due to complications of Ehlers Danlos Syndrome.
I had so many questions after we lost our son. I was an empty-armed mother filled to the brim with grief & heartache.  One day, I was having a rather loud & irreverent internal conversation with God as I looked at the one picture I have of Joshua, when my nephews came tearing into my home. I quickly threw the picture into my Bible for protection from my nephews who have autism. I later hunted through the Bible trying to find where the picture had landed and was completely shocked at where it lay:

"Have I not commanded you?  Be strong and of good courage; do not be afraid, nor be dismayed, for teh LORD your God is with you wherever you go." Joshua 1:9

I am one who has grown to believe that God loves each of us & hates none of us.  I have no proof of God's existence nor can I prove His in-existence.  I my own studies that I will discuss when invited to and my life with the circumstances within that have helped me understand that God loves me through my heart aches, through my body aches & illnesses, and that there is so much more than this painful life.  I believe His Son, Jesus, was the very first Hippie who died & lived again to love everyone & wants everyone to just allow Him to.


I've not posted a lot because I've been traveling back to California.  Below is a video of sometime I spent near Joshua's resting place, it was a sweet & pleasant time to remember that God is with me wherever I go.

Sunshine

I can see the sunshine much more easily today.  I am reminded of how good it is to know that the sun is here, even when I can't see it through the clouds or the curtains I use to kick it out of my room so I can slink into the darkness of my bed in desperate search of refuge from  the ickyness & pain swirling through my body.  The sun is constant  and warm and makes things grow colorful and healthy and what a blessing that is!

I finally found my appetite again about week after this last procedure.  I have been increasing my meals slowly with green veggie juices, raw veggies, a little fruit (probably not enough), avocado along with oatmeal mixed with walnuts, boiled rasins & raw honey w/ a pinch of cinnamon (tasty!).  I would really like to get a juicer and a better blender as it seems it might be easier to drink more nutrients than I am able to eat in a day.  I am experimenting with ways to eat better, and give my body the best chance it can to heal & carry on.  As for the "thing" that was taken out of me;  I should find out next week what exactly it is.  I'm honestly not terribly concerned about it, I've told the few that know about it that it was clearly the remnants my evil twin that was no match for me.  The very idea of it possibly being cancer just fills me with a sensation that feels too big to fit into my body- that if this thing is indeed something like cancer- I'll just kick it's ass right out of me so fast that it will hardly be much of a detour.  Regardless of what it is, something (EDS &/or evil twin remnants) is causing all of this trouble in my body and so this adventure of fighting it is already well on it's way.  So far the Dr. hasn't given me any helpful information on how to feel better, stop losing weight and live, so I'm left to my own grand ideas (which is quite scary considering what I did to my evil twin before I was even able to hold my own head up!).

During my time convalescing this week, I had a heart to heart with my husband.  He feels terribly that everything happened the way it did.  He has decided to go to treatment for his anxiety & depression that he has been suffering through alone (I didn't know that he's been having symptoms of anxiety for sometime now- which makes me so sad).  Being that he's not been able to find work that pays what he used to make (which wasn't a huge amount- he was a public school special education teacher- an amazing one at that!) is frustrating  to say the least, but for a man who used to be the SOLE bread winner for his family, it only makes sense that he is struggling.  We are also tweaking his diet to add more whole, raw veggie/fruit goodness to help him through.   It feels awful that we have been on different planes for the last nearly 2 years as we've tried to protect each other from what we've been feeling, and in the end weakening our bond.  We've always been like two puzzle pieces who fit uniquely together, and I miss that.  I am so glad that he has chosen to help & take care of himself. 

As for my Dad, I have decided that at least for now confronting him would be pointless.  Several months ago he informed me that he had changed his life's philosophy to "I'm going to do what I want and I don't care what anyone thinks of it." When I had challenged him since then about things he has said/done to me or my children being hurtful, he told me that I need to just trust that he loves me and decide not to feel hurt.  In the same conversation he told me that I need to be nicer to him and not disagree with the way he treats me- (um...ironysayswhat).  So, this is the philosophy he's decided to adopt; I don't understand it, I don't respect it, but I need to accept it and go about my life in the healthiest way I can- spending less time with him.   

So....back to the sun always being there.  It's dark out my window at the moment, but I know the sun is shining on someone right now, just as it will on us again tomorrow. ..what a blessing.  :) 
I hope you are being blessed today.

Photo details: Morning Sunlight Bursting Through Trees, taken by A.K. Entingh.

Early Christmas Gift

I got an early Christmas present yesterday; and it's a biggie.  I've been praying for it, but not actually expecting it, because it was a long shot.....AND I GOT IT!!!
Let me back up: I work for a fantastic company; I really believe in what it does and the approach that it takes to do it.  I also believe that it is one of the, if not THE last American company who takes care of it's employees who work hard to be taken care of.  We get free turkey's and a bottle of wine at Thanksgiving, there is an elegant annual Banquet in the Winter, we get good health & retirement benefits as well as a 3% annual salary increase for those who prove their worth (which is considered "average" for a salary increase in the US).  My history with the company is that I started out as a receptionist & and I am now a supervisor under the Facilities Director at the corporate office.  While my hiring salary was a raise from my receptionist salary, it was still extremely low because of my lack of experience (having been a stay at home mom for 10 years before that).  I work my arse off, because I feel like that's what one should do when employed, it's a work ethic I was raised with and I'm raising my kids the same.  I'm up for review and my Director is beyond pleased with my performance, so pleased that he recommend at 10% salary increase (unheard of) based on the amount of work I am excelling at & the salary I am currently getting (because they assumed I would be able to hack it as I have?). NOBODY gets more than a 3% salary increase and I don't mind saying that I deserve 10%. 

I GOT IT!  

This means, that when this goes into effect, we (my family) will have a working budget for the first time since The Husband lost his job in June 2010 (well we ran out of money in October 2010).  We will be able to pay all of our bills (which we HAVE been paying in full & on time by cutting everything we possibly can else out- groceries, I've gone without countless meals so the kids can eat, etc.) while feeding the children AND ourselves at the same time! We can fill the car with gas when it runs out and turn the heat on (not excessively mind you, lol).  We can't save anything yet, and I still can't buy any clothes that fit (though maybe being able to buy more of the food I am able to eat, I'll gain some weight back), but I don't care because we've finally made it to the next stepping stone....after so much hard work. 
The next stepping stone is for the Husband to get a full teaching contract, which probably won't happen until next Fall.  Until then, I am satisfied that my hard work is finally paying off.  

So to celebrate, here are some Christmas songs that make me smile :)

I love these guys!

This is my most favorite Christmas song

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

:::pop::::slip:::YOUCH!:::meh:::

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.