Inspiration!

I read a couple of blogs and one of my favorites is Pacing The Panic Room.  I love the way Ryan writes and his pictures are amazing.  Today he has featured a video which truly inspired me.

http://vimeo.com/23095780

With everything going on with Jordam sometimes I have a hard time getting out of bed in the morning.  For some reason this time has been harder than the other two.  When she was lying in a hospital bed dying I dealt with it much better.  Maybe because I knew we would fight it and I knew she wouldn't die.  I knew our strength and her courage would keep us going.

When she developed the problem with her eyes I thought it was just a little set back.  Nothing major, better than seizures and something we could beat.

This time I was thrown.  I was not prepared to find out that something new was wrong.  I was finally letting the walls down and thinking everything was going to be okay.  I'm not saying it won't be okay, it has just taken me longer to get over this new set back.

After watching this video I know we will get through.  The inspiration this man brings in amazing.  I love inspiration things and wish that I could inspire people in the way this man inspired me.  I want to thank him for reminding me that we are the only ones that hold ourselves back.  We are the ones in control of our lives and destinies and we can take control back, instead of wallowing in the misery we have come to know.

I hope you all watch and become as inspired as I have.

Courage!

This F*cking Sucks is how I felt today until I got on the computer and found this quote from John Wayne.

“Courage is being scared to death, but saddling up anyway." -John Wayne

I wanted to sit on the floor and cry or scream. I wanted to yell at someone for not being able to tell me what is wrong with Jordan. I wanted to throw things and run far away. I am frustrated because she is sad and depressed and I feel like I am not helping her. Then I read this quote and realized I could not hide. I needed to Saddle Up.

So that is what I am doing. Her platelets are 71K, which is great. We are keeping the course of prednisone for the next 3 days and then lowering it to 40 mgs a day. We go to a new doctor next Wednesday and hopefully her platelets will be even higher then.
She has some cookie ideas that she wants to try, hope even is ready to be a guinea pig for her creations. She has moments when she is really down and I am trying to do as many fun things with her as I can. We talked about going back to school and have a game plan worked out. She learned she can still go to the dentist and if she needs teeth pulled we can do something so she can have that done.
All and all positive stuff, my frustrations will always be here I just need to keep them at bay.

As for Devon, I think he is fine. I believe he might be allergic to almonds, which is what caused him to get sick yesterday.

Have a wonderful week and we will keep you all posted. Thanks again for the love, support and strength, it means the world to me.

Resolutions

We are 21 days into 2012 and I think I have a new list of resolutions.  They aren't so much resolutions as they are things that I am going to do this year.  I am hoping to accomplish everything I want to and continue on my path to happiness.  After the last year, my daughter getting sick and almost dying, the doctors not know what is wrong with her and finding out who my friends really are I am now focusing on myself and what I need to do form me.  Since having children I have identified myself as a wife and a mom.  Now I am going to start this year with me becoming me again and taking back my life, for me.  I am still going to be a wife and a mom, I am just hoping that with doing things for me I will be better at both.

So here are my list of life lessons, experiences and entertainment for 2012:

1. Read 100 books and review them all.

2. Listen to 1000 new songs

3. Start eating healthier.

4. Exercise 3 times a week.

5. Take a photography class.

6. Attend Blissdom, if not this year then next.

7. Finish writing my book.

8. Take silk screening classes and start website for my son.

9. Become and parent advocate for Special Education Students.

This is just a start.  I have deceived there are so many things I would like to do that I am going to put a life list together, something I learned from Mightygirl.

If you made resolutions this year I hope you are keeping to them.  If you are having trouble remember you are not alone.  Reach out to someone for help and you will be able to accomplish anything.

The Promises She Keeps - Book Review

The Promises She Keeps by Erin Healy is a wonderful book that makes you think about how all life is connected.  While this is not the type of book I normally read I must say I was pleasantly surprised with how easy it was to read and how the author kept your attention.

Promise, the main character in the book, suffers from cystic fibrosis, and while she is not afraid to die she does fear that she will be forgotten.  She feels her love of music is her only chance to be remembered.  Little does she know that the invents that unfold in the book lead her in a new direction and teach her about life and real love.

From Zach the college photographer who takes pictures of her, to his crazy mother who fears death she is thrown into a whole new world.  Chase the dynamic artist who wants people to see real love.  He opens her eyes to what it means and how lives and circumstances may all be intertwined.

Erin Hearly has a wonderful way of making the words come to life making you believe that the impossible can happen.  A beautiful story of love and all its powers.

People to People

Would you send your 15 year old on a 20 day trip through France, Italy, and Spain?  Would you let them go without you or your husband?  Yes because it is a wonderful experience or No because it is to much to even think about.

Well I am sending mine, that is if he gets in.  It is through a program called People to People, an awesome program that I wish I had known about when I was a kid.  So what is it about you ask.

First it is a once in a life time trip to France, Italy and Spain.  A trip with 40 other students that are just as excited and nervous as you are.  You will learn to Flamingo Dance in Spain, to make Paella with locals, go to high school in France and walk the Red Carpet at the Canne film festival, see the Duomo in Italy and tour the Colosseum in Rome.  A trip that you will never forget, a trip that I would take in heart beat.  A trip where you will make memories that last a life time.  A life changing trip, which could alter your life forever.

Am I nervous about sending my son?  Yes very much so although you have to live life to experience it.  I would love to keep him small and protected, although that is not my job.  My job as a parent is to enrich his life and give him all the things he needs to become a productive, well adjusted adult.  I don't know if this trip will do those things, although I believe it will.  I believe some day he will look back and say, "Mom, that was one of the best things you could have done for me."

Now the hard part.  Raising the money to go on the trip.

Gaming Modz

Have you ever heard of Gamingmodz.com? If not then you don’t know what you’re missing out on. They are one of the largest custom game controller companies. They don’t just sell normal Xbox 360 or Playstation 3 controllers; they sell beautiful, sleek, professional custom painted controllers with mods. If you, a friend, a family member or anyone else who is tired of their plain old game controllers then you definitely should visit their site. Their prices are also amazing compared to other companies. Their controllers come in a variety of colors, designs, and are extremely customizable. When you purchase a controller you choose what design you would like examples include tiger stripes, skulls, or even premium box office controllers like iron man. Some features are exclusive to Xbox 360 or Playstation 3. When you purchase an Xbox controller you can custom the ring of light LEDs; blue, white, yellow, etc. the thumbsticks , buttons, and that’s just the beginning of it. You also can choose what in-game modifications you would like. Mods are in-game features that allow the player to highly enhance playing a game. They are 100% legal and will not harm your console, the player, or the playing capability of the controller. They have a variety of mods all with different effects and are compatible with almost all of the popular first person shooting games out there today. You can also add on same day assembly, a one year warranty, and many other add on features. They don’t just stop at controllers they also sell gaming glasses, gaming headphones, gift cards and all sorts of other things a gamer might want. So go check out their site at Gamingmodz.com and soon enough you’ll have your very own custom controller!

You are a Strange Kid!

The other day we had a doctor’s appointment Jordan’s Neurologist.  First we talked about the problem with her eyes.  He like everyone else thinks there might be some connection between her eyes and her seizures although all of her blood work comes back normal.  He called her a strange kid, which she didn’t seem to mind.

She has a few questions for him and the biggest one was swimming.  I think she has wanted to swim from the moment she could talk.  She loves being in the water and loves pushing her limits even more.  We have been letting her swim in the back yard for a few days now so I was really interested to see what the doctor would say.  He told her she could swim, although not very long under water, which made me happy because I am constantly telling her to not swim underwater.  After talking some more she said “Can I dive?” and he said “No” Another point for mom and the doctor being on the same page.  She asked about riding a bike, which she can do as long as we watch her like a hawk.

The appointment went well and he decided we need to get her off another medication.  Over the next 2 months she will be coming off the Topamax.  Keeping our fingers crossed that everything will go as well as the last time.  He also doesn’t want to see her for 6 months.  While I am happy about this because it means she is getting better I am still a little scared.  I know he is just a phone call or email away and it still doesn’t make me feel better.  It is like when we left the PICU.  You become so comfortable with the doctors and the security they give you.  Moving on means something good yet I still am afraid.  

She has gone 6 months without any seizures and every day we get away from the seizure the better off she is.  She is so excited for school to be almost over and she can’t wait for summer to really begin.  There will be lots of time swimming in the pool, riding our bikes and just having fun.  We go back to Boston for her eyes in a week.  Maybe the blood work they did will have some answers although at this point I don’t know that I care.  She is happy, healthy, kind and funny.  She makes me laugh, cry and sometimes even scream yet I wouldn’t trade it for anything.  Enjoy your summer and we will keep you posted.