My Blog List

Friday, March 30, 2012

A little rant about me.....

I spent some time recently with some pretty fabulous parents of kids with special needs.  We each have our own challenges and joys in our lives.  We know that raising a child with special needs is hard and rewarding at the same time. We also know that finding time to be someone other than a special needs parent is also hard. I like to think that I have found the perfect balance. I like to say I have figured this journey out and can conquer it all. However, I also realize that I need to give my self a break. A break in saying it is alright that I do not have all the answers, a break to be myself, a break to be just a wife, a break to do something for me and not feel guilty about it. I admit I struggle with this feeling of guilt. I find myself thinking I could have done this better or done that differently. When do I just say, it is okay! When do I accept that I need time to work on me?

I have been researching literally for a month about loosing weight. I know I need to shed these pounds to feel better about me. I know this will make me a better mom and wife, but yet I can't commit.  I found a million reasons why I haven't started.

1. I don't have time
2. My sinuses have been acting up
3. I rather spend time with my kids & husband
4. I rather spend time relaxing
5. I rather spend time sleeping
6. I don't have time
7. I think of everyone else but me
8. I don't have time
9. Doctor's appointments
10. I don't have time
11. Have I said I don't have time
12. Work

I want to go back to weight watchers, but then I feel guilty about spending money on something I should know how to do.  I want to start running again, but then I feel guilty that I could be doing other things like cleaning my house. I want to start taking Zumba classes, but for the reasons I mentioned above I just do not go and do it.

Tomorrow, I have decided in my head that I am going to go take a Zumba class even though I feel guilty. At least, it will be a step in the right direction. Here is hoping I will not find an excuse as to why I did not go to Zumba Saturday morning. I wish I could find me a Bob Harper from the biggest loser to motivate me and get to the root of what is in my mind. For now, I will use Hayden's blog as my outlet every once in awhile. I guess we could say it is my own therapy that I sort of need right now in my life.

Wednesday, March 21, 2012

Hayden is playing baseball!!!

Big news in our household Hayden is playing baseball. In our town they have a disability league that plays with the regular league during baseball season. We just got our confirmation email that Hayden will be playing on the Phillies. This is so appropriate for my little man because he loves the Philadelphia Phillies. I will not break his heart to tell him it is not the real Phillies. He is only 4, he will not understand the difference. We have our first practice this Sunday and then opening ceremonies will kick off on April 21st. I hope he loves it. We have been practicing hitting the baseball off the tee in his walker. He is really good at it. Now, it does not go far but I am impressed that he can at least hit the ball off the tee. I know he is going to love running in his walker to base. He is really into running lately.

Fingers crossed this will be an enjoyable injury free sport.  I know we are on a disability league but I love the feeling of normalcy for my little man.

Monday, March 19, 2012

stomach virus for charity ugh.....

Hayden has finally recovered from the stomach virus. Unfortunately, he got sick over this past weekend during our charity volleyball event.  The poor guy was sick for a full week and we are struggling to regain his energy.  Today, was the first day he returned to school. Of course being the first day back I got a phone call from the nurse that Hayden fell. My heart sank, I thought great he is back to school and already injured. Luckily, it was a minor bump and rug burn on this forehead. The little man was so excited to be back playing he was going to fast for his own good crawling.

His paras commented on how he is not as strong this week. I think it will take him awhile to regain his energy. We even had to start him on zantac for reflux. Apparently, this virus caused his stomach to spasm and cause reflux again. So, now we take 2ml 2x a day. I even gave him a pillow to sleep with at night and that has helped so far. Fingers crossed we do not have anymore vomiting episodes. That was the worst the poor guy was so helpless and I felt terrible for him.

Now, that we are back  in the swing of our daily routine potty training is still a focus. School finally got his potty seat. Yay for small miracles. It has only taken a few months, like everything. I struggle now on how often I should ask them to sit him on the potty. He is not going to be able to just sit for a minute and go. It takes us a good 15 minutes at home before he will go.  Is this realistic for school? Oh, I wish I could find some advice on how to incorporate this into his IEP or accommodations for him. If anyone is reading and has words of wisdom please let me know!

Tuesday, March 13, 2012

Cardiology update

Hayden had his 6 month follow up at the cardiologist on Friday. Thursday night I barely slept the worry and anxiety got the best of me. We dropped our baby girl off to daycare so we could spend the appointment focusing on Hayden.  His appointment was at 11:50 and we arrived around 11:40.  Despite hating having a million specialist the cardiology department at AI Dupont Children's hospital is wonderful. Our appointments always run on time and everyone is so friendly.

We were taken back on time and the normal vitals were checked. Of course, I thought bringing along daddy would make things easier, but Hayden still was terrified of getting his blood pressure checked. I really do not know where the fear has come from other than the last round of blood work for genetics. I feel like that ruined him with his blood pressure checks. I really hope we can overcome this fear.  Luckily, the same wonderful tech that performed Hayden's EKG was there on Friday. She came in and applied Hayden's "stickers" and sang some silly songs while we were getting the EKG.  He did really well, the only odd thing that happened is after his EKG Hayden's clonus really was acting up. I have never seen it flutter so much in a resting position. Something to ask the neurologist in May. Next, we went back for our echo cardiogram. Hayden does really well for this test. It might be because he got to watch his favorite movie Cars.

We were taken to the waiting room and brought back immediately to see the cardiologist. My stomach was in knots. He took some brief updated family history and looked at us and says Hayden's heart has changed. My heart dropped. I knew we did not want to hear his heart changed, I thought I remembered him telling me we wanted it to remain the same. Bad bad thoughts entered my head but I took a deep breath and finally got out. What does that mean? Well, it was good news!! Hooray for good news. Basically Hayden grew into his heart, his heart is now a size of a typical 4 year old boy. I was so relieved.

As much as I really loved the cardiology department I am happy to get rid of one specialist. Finally, a big win for my sweet exceptional little boy. Finally, I can knock off the worry of his heart. Finally, I can breath a sigh of relief that his heart is okay.

Wednesday, March 7, 2012

Fundraising and such

I have spoken to a few great people over the last few days about my 5k. I am getting really hopeful that I might make this happen. I just sent off an email to a race management company. Here is hoping that the expense will not allow me to make this dream into a reality. I want to be Hayden's legs, I want to be an inspirational mama, I want to put my effort towards a great cause, and I badly want to make this happen.

Graciously, I have some amazing friends and family who want to help. I cannot wait to start planning this event for October. I definitely will keep everyone posted on my progress.

On to other fundraising news, we are heading into our big volleyball event for Easter Seals this weekend. Hayden's volleyball team has raised $1,277! I am proud to say we hit this accomplishment. I was hoping for $1,600 but what we have achieved is a great goal. Hayden is gearing up and is very excited to wear his new tie dyed volleyball shirt. He picked out the shirts this year. How could you say no to his sweet little face. This will be Miss Julia's first event. She will be decked out in a pink tshirt wearing Hayden's team logo. Sweet right? I definitely will be observing because I definitely do not want to repeat tearing an ACL again for charity.

Other big news we head to the cardiologist Friday. Please keep us in your thoughts. Hopefully, we will hear things are okay, my worry is over. I will provide an update as soon as I can.

Monday, March 5, 2012

Organizing a charity walk/run in honor of Hayden

I know most of these posts are suppose to be about Hayden but I figured any posts would be acceptable right? After all almost everything I do centers around my children.  I have written before about our fundraising efforts for Hayden to support Easter Seals. I also mentioned that I started a program called Partner's in Policy making. I completed my first session last month and met some pretty amazing people. The program has really giving me a ton of inspiration more than I thought I ever had. Well, it has been a dream of mine to organize a 5k charity walk/run. I started thinking a lot about this in the last few weeks and decided it was time to research.

I have seen so many amazing mom's organize non profit organization because of their children. I thought I want to be an amazing mom. Maybe one day I can organize a non profit but for now I am going to start my goal small. I decided I want to organize a 5k charity walk/run in my son's honor. I even have a name picked out Hayden's first annual walk/run for children with disabilities. Catchy right? I sent a few emails to some folks asking for a contact to bounce my idea off of. I have a timeline set up of what needs to happen and when but I am stuck on a few things. I have an idea for location but I need to figure out what my first steps are. I need to figure out where to get liability insurance. I also need to figure out how to fund this whole idea. After all it is my idea and every good idea needs money or support. How hard could this be? Am I kidding myself? Can I really make this happen. I even thought Hayden would kick off the start of the race running in his walker. How great would that be? Hayden is so into running right now that he would just love the idea of running in his walker. I would love to make this happen. So, if anyone is reading this and can offer me any advice please do. I am determined to try to make this happen.

My goal would be for this money to support individuals with disabilities living in Delaware. We know the economy is tough, we know money is tight for our state budget, we know that sometimes individuals with disabilities needs a voice. I would love to try to be a small voice.