it's been a whirlwind

Oh what a week...

Talk about the ups and downs, the good with the bad, we had it all in the last week...

This beautiful lady on the right will be going home soon.  Last Friday she went into the hospital for some swelling.  We decided to bring the kids to the hospital to visit her (in the past, we left the kids home) and the doctor was getting ready to start the discharge process.  Anthony was holding onto G.G's hand and she kept calling out in pain and saying "help me."  It was so hard to see her so uncomfortable.  Soon after we left, she had a heart attack.  She was brought into the ICU and put on a ventilator.  We went back to the hospital the next day (with out the kids this time) and we said our goodbyes.  The doctor was going to be taking her off the ventilator the next day and it was assumed that she would go quickly after.  Little did this doctor know who he was dealing with.  This was G.G, the feisty little fighter.  It has been 1 week since she first went into the hospital and she is now at home on hospice, still alive.  She is reaching to towards the sky, eyes gazed upward, already on her way home.  She has had a beautiful 91 years here.

Meanwhile, we have found our 10 year old dog to be immortal.  She got into snail bait in the neighborhood a week ago and was so incredibly sick throughout the night.  I stayed awake with her and when Anthony got home in the morning, he took one look at her and knew this was it.  We explained to the kids that it was time to say goodbye to Daisy, she wasn't going to make it much longer.  So here we are at home with a dying dog, explaining the process to the kids as they are about to loose their great grandma.  Here's the twist.  As God always promises to never give us more than we can handle, our dog has fully recovered from eating toxic snail bait that is always fatal!!!  She is doing great!! 

The next night however, this guy starts his seal barking.  Normally he has a cold or virus when he gets his croup but this time there was no warning.  He started at 2:44 a.m and I laid next to him listening to him struggle to breathe.  I turned the shower on, steamed up his bathroom and carried him in.  This aggravated him and his symptoms became worse, much worse.  He could not take a breath without that high pitch stridor.  He finally has his own machine and after 30 minutes, he started feeling better.  Afterwards, he said he thought he was going to die.  That must have been so frightening for him to not be able to breathe.  He was put on steroids and will be seeing a specialist to figure out why he continues to get such severe croup at his age.  Until then, he will be in a bubble.  I can't go through another night like that.

 We had a trip planned to my grandma's house for quite some time and with all that was going on, we weren't sure we were going to be able to make it.  She only lives an hour away so we knew we could get back quickly if need be.  Spending time as a family and with my grandma was the best decision we could have made.

 The kids did some snorkeling with Anthony

While I did some reading alone... pure bliss!

When on vacation, all rules are broken and this little banana split was consumed in less than 2 minutes. 

Thank you for having us grandma!!

It was just the time we needed!

a day of observation

Today's goal was to speak less and listen more.  This included shutting of my mind and not allowing my thoughts to speak over the sounds of nature or the sounds of my children.  Today I will hear what they say and not respond with the usual, uh huh, or oh yeah?  Really listen and respond accordingly.  I want to be focused 100% on the present moment and not 80%.  Do one thing at a time pouring my heart into it and only focusing on that moment.

I heard the birds chirping in the tree outside my bedroom window with roosters in the near distance letting me know it is time to wake up.
I heard stories from my children about their wishes, their fears, what makes them happy and what makes them sad.
We played together, laughed so hard our muscles were sore, giggled until we couldn't catch our breath. We walked down Main St. while savoring the flavor of our frozen yogurt and stopping to smell every flower.  There was no rushing.  We did as we pleased staying grounded and centered.  We were aware of our surroundings, appreciating more than we ever have.  Being attentive kept us all happy.  I wish this would be the constant norm but as a mom, I have other areas that I have to attend to, leaving the children to fend for themselves while the laundry, cooking, cleaning... is all getting done.  But stopping my life to pay more attention to theirs and ours together brought a sense of joy to us all that when it's time to get back to my "work" they won't feel that urgency of need.  It worked.  I had time in the laundry room to smell the fresh clean clothes and feel the soft warm cotton as I folded {who am I kidding, I don't fold the laundry} piled the clothes into the basket.  The kids were content.  One playing in the dirt and the other reading a book outside.

I noticed the birds song was different as the sun was setting and the crickets began their chirp.
Today was peaceful.  It wasn't rushed as we went with the flow.  There was no resistance as we walked through the day with the wind at our back instead of our heels digging into the ground.  We followed our hearts because my mind was quite and able to listen.
Watching life is beautiful, it is magical, it is serene.

these are the days

These are the days that I love.
I am in the kitchen cleaning the breakfast dishes while watching my husband do yard work through the kitchen window with the sun shining so brightly.  The kids playing, not fighting, not watching t.v, but playing together and happy.  Summer is here and day of play awaits us.

 And that is exactly what we did.  We played.

By 4:00 we were sun-kissed and starving so we headed out to pick up dinner and a few groceries.
In the evening we sat down to watch the movie Courageous together as a family.  The kids and I got this movie for Anthony for Father's day.  Here is a little snapshot of our Father's day:

The movie was amazing.  The message was loud and clear as I went from laughing to crying and back to laughing all within 45 seconds.  I'm sure everyone has already seen the movie since we are usually the last to ever watch  but if you haven't seen it, I highly recommend it!  If you cry like me... you know where your face becomes all distorted, lips quiver, forehead does some weird thing, nose starts dripping as the tears are flooding down your face... I would say watch it in the dark.  We have a huge couch and all 4 (plus the dog) were in one small section all together.  Anthony and I right next to each other with Wyatt laying on top of Anthony and Alexis half way on me and the dog on her.  We got the family message and weren't letting go.  God and family are the two most important loves in my life and my heart grows bigger for each every single day.

let go and let God

I had an appointment down at UCSD this week with the mitochondrial specialist.  To be honest, I went in thinking it would be a waste of time, feeling like there really wasn't anything we would get out of the appointment.  My symptoms feel like they have stabilized with dare I say it... even some of my energy returned.  I have been doing a great job at adapting to this new lifestyle and doing an even better job and just ignoring that I'm sick and just living my life.  It's working out pretty well for me so far... until I try and do something I used to be able to do.  We parked in the parking structure and walked quickly into the hospital.  I had to go to the bathroom so bad I didn't care how much energy the speed walk would take.  I barely made it to the office without feeling like my legs were going to give out on me which made me realize, once again, I haven't actually gotten any better physically.  I have just slowed down and not made many outings without my chair so when I think I have more energy it's just that I am saving more energy. This has given me more stamina to get through the days which help trick my mind into thinking I am improving.  Whatever works, right?
Once we saw the doctor and nurse practitioner we received some of the results from recent {6 month ago} labs.  Good news was I don't have some crazy disease they thought but that meant the big answer is still a mystery.  The doctor tried explaining about the genetic mutations that showed up in the tests and what they mean which seemed to make a little sense so I nodded my head and when he left the room our nurse practitioner {whom is super awesome} gave us a much better explanation.  Next step now will be to do some nuclear testing.  {Not as in nuclear weapons} They are thinking that the mitochondria are diseased because of a problem in my nucleus.  This will most likely result in another muscle biopsy in the near future and hopefully a nice clear answer.  Guess what though, the mutations I have are extremely rare.  Less than .2% and .1%.  There aren't too many other people walking around out there like me, or rolling around.  This does however make diagnosing and a prognosis very difficult.  This is where my awesome nurse practitioner gets even more awesome.  She told me how from the very beginning their goal is to keep me comfortable, treating each symptom and making sure I live my life to the best I can.  They also want to get as many answers as they can for the sake of our kids.  She told me that this is where I need to let go and let God.  God brought my children into this life for a reason and it is not my job to stress everyday and watch over them like a hawk.  {Anthony must have told her I was doing this}  The added stress will make me worse and there isn't any good that would come from it.  They are constantly making new advances in medicine daily.  It has not frozen and we have so much hope for the future.  I cried a little at this point, we talked a little more and then we left.  Faith, Hope and Love is something that we will NEVER lose!!!  I know I said this before but I have so much good stuff going for me.  I am grateful for every single day!