Soccer, Soccer, Soccer

Soccer games for the spring season started today and I love soccer season.  We see friends we haven't seen in months and I love watching the kids play.  They have played on travel soccer teams since they were little and it is so nice to see them still playing with the same kids years later.

Devon's team was in Division 1 last season and they did not have a great season.  They didn't win a game all season and started fighting a lot.  Since Devon played goalie for most of the season he was very frustrated and almost did come back.  We encouraged him to play with his team because it is their last season together and they got moved back to Division 2.  Well they played great today, worked together and ended up with a 5-1 win.  It was awesome to see them working together as a team again and having a great time doing it.

Jordan's team played Division 1 last season and while they didn't win a lot of games they held their own and are back in Division 1.  Jordan's team has played together since they were 5 years old and I am always in awe of how well they play together.  Unlike the boys they never give up and usually dominate the field.  Even if they don't win, which today they did not, they still give it their all.

Today was hard because it was the first game of the season and Jordan was very nervous.  Then the game became very intense and she ended up not playing at all.  It is hard to watch all her friends playing and she ends up crying on the way home.  Her coach is great and usually plays her even if it is a few minutes.  I think sometimes she gets caught up in the game and knows that Jordan doesn't always want to play.  It is that fine balancing act between trying to win and playing everyone.  When Jordan first got sick she didn't mind only playing 5 minutes a game, now it is starting to bother her a little.  The good thing is her coach usually makes up for it in another game.

It's just another part of life that we have to watch our children go through.  They aren't always going to be the best at everything and sometimes you just don't get to play the game.  Doesn't mean you sit down and become defeated by it, it means you get back up and try twice as hard.

First Dance

Jordan has her first dance tonight.  I am looking forward to listening to her and her friends get ready before the dance.  I cannot believe that she is growing up so fast and I am so happy that she is able to experience these wonderful times being a kid.

She had to grow up so fast because of all the illness she has experienced and we expect so much from her that I love being able to sit back and just watch her.  She has developed into such a beautiful young lady and I am looking forward to many more years of dances.

New York Skyline

We spent this past weekend with my whole family. It was such a fun time being with everyone and watching my brother and his fiance get married. They looked so happy and it was such a special night. I enjoyed seeing family and friends that I haven’t seen in a while and catching up with everyone.

I was a little nervous because I knew it would be a long weekend with lots of action and late nights. I didn’t want Jordan to over do it and I was glad when on Friday night she decided to go to bed instead of going down to dinner. I meant I didn’t get to have dinner with everyone, but that was okay with me. Having her fall asleep at 8:15 made me relax a little. She did push the limits like she always does. While staying in hotels was necessary, I didn’t like the whole pool situation. Knowing her younger cousins would want to swim I let her bring her bathing suit. Of course I think I had a 100 little heart skips as I watched her swim underwater. In the end she had a great time and I managed to keep calm for most of the swimming.

The day of the wedding was a very long day. It started at 6:00 am and went until 1:30 the next morning. I know my family will have many great memories of Rob and Natalia, the many many pictures we had taken, the New York skyline, the dancing and all the food. Good think he is the last one to get married because I think he outdid the rest of us, it was beautiful.

Now that we are back things are moving along as always. Jordan went today for blood work and her platelets are 123K. She says she is just Whatever about the number although I wanted to jump up and down and scream for joy. Here’s hoping my enthusiasm isn’t too much. She is still on Nplate and she has no restrictions from the Hemoc doctors. Neurology is a different story, and one we are working with.

Soccer season starts this weekend and I am looking forward to seeing our friends and have a great time together. We wish you all luck and happiness with whatever you are doing to enjoy the nice weather we are having.

His artistic eye goes beyond drawing

Devon has an artisic eye that he did not get from me.  My brain works in lines and shapes, I can barley draw a stick figure.  My mother on the other hand is an excellent artist.  She tells me all the time, "It's easy.  You just look at something and draw it." Yeah easy for her because she can draw, not for me I can't.  Devon has gotten this talent and over the years I have loved watching him create these beautiul pieces.  While I can't draw I love photography and have always tried to take artistic pictures.

I finally got a decent camera and played around with it.  I came up with the following photos.

Then Devon borrows my camera for a few hours and comes up with these pictures.

I was like what the heck how can you have my camera for a few hours and take these pictures.  I was proud of him and a little frustrated.  When I got to this picture I was like maybe instead of drawing you will go into photography.  He amazes me everyday.  I hope no matter what he does that he never loses his love for teh arts and keep moving forward pursuing his dreams.

 

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.