Monday, November 28, 2011

I would do it all over again

I asked my husband if he thinks he would have chosen to have children with me knowing what we know now about my health?  If we knew that I had genetic mutations that could easily be passed onto our children, would he do it all over again? Quickly realizing that this was a ridiculous question... one similar to, 'do these jeans make me look fat?'

He responded with, "Yes, of course.  The moment the kids were born, I couldn't remember life before them.  It's not even a question."

I guess I started feeling guilty that I could have passed something on to them that would cause them to struggle later in life.  But then again, I don't necessarily look at my life as a struggle.  Sure, walking can be tricky at times but I am often strong enough to do many things and definitely mentally strong enough to think I can do anything.  {In fact I cleaned one room in our house for an hour the other day, feeling great until I hit the wall and was on the couch for the next 4 hours.  But that clean room was totally worth it.}

I would do it all over again.
I would not take back anything that I have done knowing what I know now.  Except that I might have not walked in the 60 mile walk that they think triggered all of this.  That, I am sort of regretting.
I agree with  my husband, I cannot imagine my life without our children.  I'm sure I would be well rested but other than that, I would have missed out on all the laughter, all the cuddles, all the love.  I would have missed out on witnessing the miracle, the gift God gave us.  They have over-filled my heart and continue to do so daily.  I am so grateful for not knowing my future because what if I decided not to have them?  I would have missed out on so much.  More than I could ever imagine.

We have beautiful and healthy children.  Children that bring so much joy to the world.  {At least to my world}
Children that are not showing any signs of the same illness.  Although the doctors told us it would most likely show up as adults like mine did.
Even with the bad health that has challenged me, I do have a lot of good health too.  For that, I am grateful.
I have days where I feel so good that I am sure I am ridding all of the bad parts.  Today was like that.  Until the evening when all the days energy zapped right out, but it was totally worth having a great day.  Knowing that there are great days ahead make each day a blessing.  That's how we get through the bad days.
We are not in control of our life.  He gets to decide what we get and what we don't get.  All we have to do is live in joy and be grateful for everything we are provided.  And we have been provided with plenty!

Friday, November 25, 2011

A day of love and blessings

Thanksgiving morning started out with a beautiful sunrise.  We began counting our blessings very early in the morning.

Here are two of them...

There was plenty of love...

And plenty of turkey...

And these, wow they looked good! {I didn't make them}

Thanksgiving was full of love and gratitude.  It was full of family and food.  It was full of excitement and most important, it was full of hope.

I got up early Friday morning for some shopping... not the crazy kind where you wake up or never go to sleep and stand in lines longer than Disneyland.  No, I got up and did a little online shopping.

 After a little shopping, it was time for some Christmas decorating.  One of our favorite times of year where we blast the Christmas music, gather all the boxes and dig through the decorations reminiscing over each one.

The Christmas season has officially begun which also means there will be 2 birthdays being celebrated by a couple of little kids in this house very soon.  The excitement of December is quite overwhelming.  So much to do, so much fun to be had and so many memories to make.

Tuesday, November 22, 2011

Ten Thankfuls

Tuesday's Top Ten......I am Thankful

1. I am thankful for a full nights sleep

2. I am thankful for a warm bed

3. I am thankful that the rain that was forecasted for Thanksgiving day is now saying partly cloudy skies.

4. I am thankful for His protection.

5. I am thankful that my husband will be able to spend Thanksgiving with us this year.

6. I am thankful for the overwhelming amount of support we receive.

7. I am thankful for the thousands of women and men that walked in the Breast Cancer 3-day this past weekend and raised $9.2 million!!!  Especially my good friend Rach that completed all 60 miles!

8. I am thankful for friends and neighbors who are more like family.

9. I am thankful for love, joy, and tons of hope in my heart.

10. I am thankful for LIFE and to be able to celebrate this holiday season with the ones I LOVE.

Monday, November 21, 2011

I promise myself...

I promise myself....

To forget the mistakes of the past and press on to the greater achievements of the future.

To wear a cheerful expression at all times and give a smile to every living creature I meet.

To give so much time to improving myself that I have no time to criticize others.

To be too large for worry, too noble for anger, too strong for fear and too happy to permit the presence of trouble.

To think well of myself and to proclaim this fact to the world, not in loud words, but in great deeds.

To live in the faith that the whole world is on my side, so long as I am true to the best that is me.

~Christian D Larson {1874-1954}
The Optimist's Creed

Thursday, November 17, 2011

My appointment with the Muscular Dystrophy Association

The day before:

It's the night before another "big" appointment.  I am quickly overwhelmed with all of the different emotions I had with my first appointment last May.  I'm not sure these feelings of uncertainty will every go away.  For some reason I assumed I would see the doctor, get a diagnosis, get treatment, and never go back.  I really hadn't seen too far into the future of what it entails to have a chronic illness.  All the time that will be spent with doctors from here on out is still a concept I haven't quite grasped.
I call these "big" appointments because they are with very intelligent, world renowned specialists that I hold all of my hope with.  They are the ones, the very few, that might know what  is going on in my body.  Because of them, I hold on to the idea that someone will be able to help, maybe even fix.

Right now, I am nervous.  What if he doesn't know or worse, what if he does know but there is no way to help?  Will he have the answers I have been praying for?

I am so happy to have my husband, my strength by my side through all of this.  I'm not sure I could hold it together without him.  He has been an amazing support through everything and I am so grateful for his love.

The day of the appointment:

I was referred to Children's Hospital of San Diego to the top doctor with the Muscular Dystrophy Association {MDA} from my neurologist at UCSD.  After several phone calls to the parents of Karen and letters to the parents of Karen, I realized I was probably their oldest patient.  Rady's Children's Hospital is so wonderful!!  I have been there before with Alexis and loved the place and everyone who works there.  Today we were treated so well.  Everyone is so chipper and eager to help, they all have warm smiles on their faces.  It's not like other hospitals where staff members look the other way when you approach them with a question.  I think I just kept confusing them when they asked who was being seen as they looked around for my children.  It's me I said.  33 years old at Children's Hospital.

{Me and Ronald McDonald}
I got called back and met with the coordinator for the MDA.  She was so awesome!  She went over all the wonderful services that the MDA has to offer.  Our initial appointment is for introductions and getting all the information and the next appointment {in 6 weeks} will be 2-3 hours and involve the entire MDA team of physical therapists, occupational therapists, geneticist and the neurologist.  After getting familiarized with the MDA's services we then met the doctor.  This guy has been around for a long time and has seen it all... almost.  We started with a clean sheet of paper and I told him every weird symptom I had hoping he wasn't going to look at me like some kind of nut.  He did some muscle strength tests that completely wore me out and then looked at me and said, "You are a tough one".  I thought he was saying that in a good way meaning that I'm strong but apparently he meant that I am a tough case to figure out.  He said that I have had 3 of the nations top doctors working on my case and for me not to give up hope.  He promised me he would not give up on me and would run whatever tests he could think of to figure this out.  The way I see it is I have something so rare and undiagnosed that I might make it into the medical journals and have a disease named after.  Maybe they can add my name to it?  Nothing about me is black and white.  There was no clear cut answer so today, he couldn't give me an actual diagnosis.  We know from the muscle biopsy that my muscles are dying because my nerves are dying indicating a primary nerve disease.  The reason for my nerves dying is caused from a mitochondrial myopathy.  This is all we can figure out so far.  This neurologist is going to have coffee with my neurologist from UCSD to discuss my case and see what they can come up with.
I was relieved that he couldn't give me a bad diagnosis but at the same time frustrated that without a clear cut diagnosis, we can't get any answers.  The answers are what I feel I need.  I want to know my future and more importantly I want to know the future of my children.  We know that I have a few genetic mutations {even though we don't know anyone in my family with this} so I need to know if I passed it onto my children.  Maybe it is better that I don't know right now.... they look so healthy and I don't want to treat them any different.  But at the same time, if this is something they will eventually have, I want them to live it up right now.  Do everything they can until their bodies won't work like they used to.

The day after:

I still have hope and a lot of it.  I have accepted my body with it's challenges and will continue to live a happy and joyful life.  We are going to start playing again now that I have assistance with mobility.  The playing won't be the same as it was before but nonetheless we are getting out.
I will continue to pray for answers and for strength.  I know we have an incredible group of medical doctors on our team and I pray for their wisdom at figuring it out, and fixing it.

Tuesday, November 15, 2011


If you were in my house last night you would have heard giggling at bed time.  It wasn't coming from the kids bedroom, it was coming from ours.  Laughter is a frequent sound in our home.  We fell asleep with smiles on our face from having a good laugh.  Seriously, we were just laughing ;)
We are happy.  
Maybe it is because we had time with each other.  I can't stress enough how important it is for couples to have alone time.  We had 24 hours of pure bliss this past weekend and it rejuvinated our love.  Left us with a refreshing outlook and gave us plenty of time to "talk." ;)  We realize we need more of that.  After falling asleep with a smile on my face, I woke up with... you guessed it, a smile :)  And lots of energy.  Laughter is the best medicine!  The morning has been perfect and even if the house is a mess and I didn't tackle my "to-do" list I have succeeded because I feel so carefree.  Everything I see has brought a smile to my face and that feels good!
The more I laugh, the more there is to laugh for.  
The more I love, the more there is to love.  
The more I enjoy, the more joy is found.

Have a good laugh!

Monday, November 14, 2011

because....I am thankful

because dinner at candle light is more fun

because it doesn't rain often and when it does we must play 

 because we love photo booth

and fishy faces {sort of}


I am thankful for a beautiful weekend
I am thankful that my sister-in-law and soon to be brother-in-law watched our children... overnight!
I am thankful for the alone, uninterrupted time with my husband
I am thankful for the rainy day that forced us to snuggle by the fire and watch 2 movies
I am thankful for my strong will to take sugar out of my diet {4 days in a row so far} and gluten and dairy.

Friday, November 11, 2011

My week through my phone

A week in phone pics showing what I am grateful for

The beautiful morning sky 

Lunch with a great friend 

 Got my new Erin Condren planner that I am in love with

 Found a new seat

 Enjoyed the heat from the fire

 Watched the sunrise {every morning} with my son, the early riser

 The kids helped me take out the trash... {I think it weighed about 250lbs}

Cuddling in the warm sun

life rearranged

Thursday, November 10, 2011


"You have achieved success if you have lived well, laughed often and loved much."
~Author Unknown

Monday, November 7, 2011

Meet Jazzy, my new ride

This here is Jazzy. 

I know she isn't very sexy but she helps me get around when my legs decide to turn into Bambi or Ariel, the Little Mermaid.  Those characters look much cuter when their legs give out, I just look like a klutz.

She is on loan from some very wonderful friends of ours who recently lost their mom to ALS.

She's been great for the whole family.  I am so happy my kids are not at that awkward age where they are embarrassed about their mom riding in one of these.  Instead they are proud, excited and always wanting a ride on my lap.  They know that with this,  I can go places now.

I on the other hand am grateful to have it but I HATE that I need it.  There is a certain stigma associated with people in wheel chairs.  It means you are sick or not able.  At least that is what healthy, able people think.  That is what I used to think.  I would see someone in a wheel chair and know that something was wrong.  I can easily hide that something is wrong with me because on the outside I look very healthy.  But now I can't hide it.  It doesn't really fit my style.  I was a mom that would run around with her kids and had such an active lifestyle.  I need that back.  When I'm in it, I feel great but if I catch a glimpse of myself in a reflection I get so emotional.  I want so badly for this to be temporary but am really fearful that it won't.

Planning for our future has really changed.  It used to involve sailing the world (my husbands dream not mine) traveling the states (my dream) playing with grandchildren, enjoying an active life.  Now are plans for the future consist of who will be able to help with the children, who will be able to help with me, will the kids end up having this same disease?  What does the next 6 months hold?  The next year?  The next 5, 10 years?

Our future is unknown, but everyones future is unknown.  We have no idea what the next moment holds, so we live.  We live with love, we live with joy.  I will ride Jazzy around with pride knowing that she saves my energy.  I will ignore the looks of pity and shine through, showing that it is ok for us to not all be the same.  We are all different.

Friday, November 4, 2011

A grateful rainy day

We are having a beautiful rainy day.  A day that I have been saving many projects for.  Lots of cabinets to be organized, closets to be cleaned out, treats to bake and fires to build.  None of the productive stuff got done but we certainly enjoyed eating the muffins by the fire.

Have a wonderful weekend!

Wednesday, November 2, 2011

The sky has been amazing lately.  
The sunrises, breathtaking.

The promise of a new day, a fresh start.

The quite and stillness of the morning

The sunsets have been stellar as well.  
The time when everything slows down.
The time when we look back on our day, on all the joy we experienced.
The time we realize how much we have to be grateful for.
The time where we shut down our engines and wake up to another beautiful sunrise, another beautiful day.

These are the mornings that I wake up with a smile on my face.
It's a gorgeous day.

Tuesday, November 1, 2011

Halloween excitement

Is it today?  No, it's only October 1st.
Is it today? Not yet, we still have 29 more days.
The whole month looked like this with so much excitement leading up to Halloween.  
Finally, yesterday I was able to tell my husband that it's the day :)  The kids were just as excited.  This was Anthony's second Halloween home since the kids were born.  We were all excited!

Yes, that is an ax

Happy November Friends!!
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