Happy Easter!

Every year we do Polish Brunch for Easter.  In my family that means, kielbasa (usually 3 different kinds), ham, hard boiled eggs, bread, and horseradish.  It has been this way since I was a child and my father was a child.  It has never really bothered me and my children have grown up with this tradition.  This year Devon said "Mom, it is all meat, there are no veggies at all"  It looks like next year the tradition will be changing a little and we will be adding veggies.  Finally my vegetarian 14 year old took a stand we are changing a tradition for the better.

We also colored Easter eggs a little different this year.  Devon has been drawing for years and instead of coloring eggs he put DevArt onto the egg.  I am always amazed at how he can come up with these designs, my mind so doesn't work that way.

I am looking forward to the rest of the wonderful art work Devon will do over the years!

Today, while it was a wonderful day, Jordan had a hard time.  Big crowds bother her and her mood becomes very irritated over time.  After being with family for about 3 hours she had a melt down and needed to be a lone for about 20 minutes.  While I understand this is because of her illness and possibly her medication it is still frustrating.  We went through this back in 2010 and it was very hard on every one in the family.  My hope is the doctor's will start talking about giving her an autoimmune medication again.

 The kids had a great morning at home and then Jared got this new hat.  He has been looking for a white fedora for about a year and finally he has one. 

Happy Easter! Enjoy the day!

It's Been A While

Well it has been a while since I have been here and much has changed. 

First, Jordan's ITP has turned chronic and we are trying an experimental medication so she can play soccer.  It seems to be working although we are also going to try and change her diet to help as well.  It is very hard to tell an 11 year old that they need to stop eating, grains, dairy, candy, sugar, ice cream and just about everything else they like.  We have started taking small steps and I will write more about that journey later.

Second, she is in 5th grade and doing great.  She joined a bowling league because she was not able to swim, which is her favorite sport. At first bowling was a struggle and very frustrating.  By the end of the season she was bowling a 146 and now kicks my butt when we go together.

Third,  Jordan and I went to Washington D.C. for Lobby Day.  This was a wonderful experience, which requites further explanation later.  I will say I was so proud of her for telling people her story and sharing everything.  It was amazing to watch her grow right in front of my eyes.

Lastly, the day we got back from Washington Jordan had a seizure, after being seizure free for over 2 years.  Since then we have been going back and forth between our home and specialist in the Boston area.  It has been a struggle to realize that she may have to deal with seizures for the rest of her life.  I am hoping that the Boston doctors will be able to figure something out or at least listen to why I think it is more Autoimmune related than just Epilepsy.

On top of everything with Jordan I have started working part time, Jared and Devon are on Varsity Frisbee and Jared is getting ready to take his permit test.  Life keeps moving forward and I just have to enjoy the ride.

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.