Hello 2013

2013 has gone by so fast I cannot believe it is almost April and this is my first update on our life. So far this year has been a year of inspiration, hope, strength, determination, and change.  Personally those words describe me just as much as my amazing love bugs Hayden and Julia. I started on my new fitness adventure and joined Crossfit in January of 2013.  I started at the Y last year and got serious about my health around November 2012, when life was returning to normal a bit. I progressed my way through various exercise classes Zumba, Spin, Body Combat, Body Pump, and Yoga.  The Y is a bit of a drive for me, so I decided to research gyms locally fast forward I found Crossfit.  I went through a trial and  thought to myself what am I thinking? I left there certain this is not for me. However, I decided to give it another shot and completed my private on ramp sessions and one on one training. I still have days I think why am I doing this but remind myself I have learned to love what it has done for me. The work outs are challenging and they push me to limits I did not imagine I could ever do.  It has helped me become a better me, better mom and better wife. I am officially hooked and truly excited where this new fitness/healthy lifestyle will take me in 2013.  If you think that was my only adventure for 2013 sit tight.  I was fortunate enough to have dinner with some friends I have not seen in years. Truly it has been years! So great to reconnect for dinner, drinks, good conversation, and bucket list commitments.  Bucket list check off-  running my first 1/2 marathon in Disney.  Hello February 2014, I cannot wait to commit and register with my friends Shannon & Aleks if everything goes as planned. Enough about me I know you come to my blog to read about my love bugs.

Hayden has started out 2013 accomplishing many goals. Our biggest is moving to a lighter weight walker. It is smaller, it folds, and allows greater independence at school, home, and in the community. He amazed me only taking roughly two weeks to adapt to his new walker. Now he likes to use it as a weapon to run over things and people :)  He really is all boy! We also registered for Kindergarten. I am not ready for this. I love his teachers and really enjoy my time with my little man.  However, I know he will do great.  It certainly will be a huge adjustment for all of us. I know the school, the kids, and staff will fall in love with him. He is also getting ready for his second season of baseball, which he is overly excited about.  I cannot wait to cheer him on this season! Hayden and I will be running our first 5k together in June with our friends Shawn and Natalie.  I know he will be so excited to compete in his first race with mommy.  We are there to say we did it and to enjoy family time at the beach after our run.  Hayden has also become fond of working out. He likes watching his daddy run and lift weights.  His favorite thing currently is Crossfit. He has red Reebok's that he insist are his Crossfit shoes and he often wants to Crossfit with mommy.  Who knows maybe he will be the first person who has a disability to complete in the Crossfit open. Perhaps he will lead the way in an exercise program for the disabled. We will keep dreaming big because Hayden sure does have big ideas.

Julia has certainly proven herself over the last several months.  She is still recovering from the encephalitis (brain infection) , but she is rocking her recovery. Julia has gained back all of her milestones she lost when she got sick last August.  She is currently working hard on some new skills and challenging her therapist daily.  Julia loves to climb, sing and is trying so hard to walk.  She definitely is everywhere and we do not have any breaks with our little diva.  If there is something to get in Julia will find it.  I am so proud of her and her determination. I am holding on to hope she will make a full recovery. Time has been on our side so far. Julia's personality has really taken off this year. She loves babies, purses, shoes and getting her toe nails painted. All at the young age of 20 months.  Julia is certainly our diva princess who adores her big brother Hayden.

I will try not to let months pass before my next update. Thanks for sharing in my little love bugs accomplishments.

Happy 5th birthday Hayden

Where has all the time gone? Can my sweet boy already be a big five year old. My heart is not ready. Five is so big and five means so many changes. It means going to big boy school, it means mommy trusting you in someone else's hands again all day, it means you are growing up. Just like the year before I have written a letter to my son. I hope one day he will look back on this and know that I loved him and that he is the center of my world.

On December 31, 2007 at 5:33 in the morning I became a mama for the very first time. I felt joyous, fearful, excitement and love that I have never experienced. The kind of love only a mother will ever know. After a roller coaster delivery you were placed in my arms and I knew from that moment my life was forever changed. We spent a week in the hospital so mommy could recover. You and daddy were there taking care of me every single day. All I could think about is coming home and spending my entire life loving you. I dreamt of all the things you would accomplish. I could not wait to just snuggle with you, whisper that I love you, and tell you that you are everything I ever dreamed of my sweet Hayden.

Little did I know that we would face some obstacles in our first five years together. I know we do not focus on your disability much and I wonder if we have made the right decision. But when I look at you I realize I was given a wonderful gift and made the right decision. That gift is a boy that lights up my world. You are funny, you make mommy and daddy laugh every day, and Julia idolizes her big brother. You are kind and so creative. I love that you want to build things like daddy and love baking with me. You open the world to possibilities and acceptance. You are what every little boy should be happy and full of life.

In five years you have given me more than you ever know. You have changed my life. You not only made me a mama for the first time, but you showed me my heart is bigger than I imagined. You helped me see beauty in differences. You helped me become a better person, to want to help and make a difference. You gave me a reason to fight for change. You have shown me that there is no greater cause than to be kind and accepting.

So, my sweet baby boy Happy fifth birthday. I need you to know mommy loves you to the moon and back. I want you to know I am very proud of you. You are amazing and will accomplish amazing things. You make a difference every day and are so strong. You are one of the bravest boys I know. Happy happy birthday Hayden!! I love you!!!

Happy International Day of Persons with Disabilities!!

December 3rd marks a very important day in our house and really for the disability community. Today we celebrate International day of persons with disabilities.  Each year there is a focus for the year and this year happens to be "removing barriers to create an inclusive accessible society".  I will be honest, before becoming a mother to a wonderful boy who has a disability, I did not think enough about the word accessibility. Now, my world is centered around that word and what it means for Hayden. I also think about all the other children like Hayden and the adults living in our society. A friend of mine from Partner's in  Policy making opened my eyes on what it means for adults with disabilities. She spoke of things like getting help at the gas pump or finding vacation spots that are accessible. Little things that I take for granted every day are not always easy to the disability community.

Much of my blog has centered around updates on my little love bugs Julia and Hayden. While I will continue to update everyone on their awesome inch stones I also would like to focus on what accessibility has meant for Hayden. Hayden is in his last year of pre school. This is bitter sweet for me. I love his teacher Amanda, all of his para's and therapists.  Hayden has achieved so much in his two years of school. He is talking so well, playing cooperatively with his peers, and is even walking with the class now.  Huge huge deal.  Hayden uses a posterior walker for mobility, it is large and not easy to maneuver in a small classroom full of kids.  I struggled for awhile hoping that Hayden was using this in his classroom 100% of the time and this year he has done just that.  We were fortunate enough to gain an extra teacher and his classroom was able to be adapted to Hayden. How awesome is that? Hayden is now able to move freely in his classroom in his walker if he chooses. I love that my little boy does not have a restriction to use the one thing that lets him walk freely without barriers.  We are also frequent flyers at AI Dupont Hospital for Children. My little man has rocked walking recently to his evaluations and doctors appointments. Another big deal!  This is a hospital that truly understands the word accessibility. The hospital hallways are large enough for Hayden to maneuver his walker and the examination rooms are equally as large. The best part about the hospital is the accessible playground. I wish every playground was accessible for Hayden. He can crawl on the equipment and play just like every other child. It simply is amazing!  Finally, I have to rave about the sports program for kids of all abilities in the town we live it.  Hayden has participated in baseball and soccer. He loves them both! However, he definitely has an arm on him and eagerly waiting for baseball season.  Who am I kidding he is eagerly waiting for all the high school girls that come to help him play. If anything Hayden knows how to make the ladies fall in love with him.  He will make an excellent boyfriend or husband one day, when he is 30! Now, we just need to tackle educating people who see Hayden in the walker not to feel sorry for him. He truly is a happy little boy. Once you look past his walker you will see just how amazing my little man is.

Finally, I will close this post with a huge thank you. Thank you for continuing to read my blog. Thank you for your continued interested in my children.  They truly are a blessing and hope that they will help just one person or family understand that different is not a bad thing. Different is beautiful, different is amazing, and different is okay!

Who needs a big cerebellum any way!

If there was an award for most valuable patient our family would certainly win. Three visits to AI in one week and one more to go. To say we are frequent flyers is an understatement. However, I would not give up our doctors or this hospital.

This week was a busy week neurology visits and genetics. My brain is in medical overload , but I can honestly say this okay. Tonight I left the hospital with a reason for Hayden's balance instability and coordination. Almost five years and a multitude of test to hear the words uttered to me. Your sons cerebellum did not develop correctly. His cerebellum is small and that will not change. I mean who needs a big cerebellum any way? What I am thankful for is this is not progressive. I am thankful Hayden is going to be just fine. Hayden will always be your best friend and he will make you laugh when you have sad days. Not sure the world is ready for this little man :)

We have also been blessed with our sweet Julia. The nasty HHV6 virus that caused roseola could have impacted Julia significantly. It has not and will not, which is a huge relief. It may take a year for her to fully recover but time has always been on our side. Julia is making great progress and continues to work hard at trying to walk while getting into trouble. She is fond of standing on chairs and climbing on things she should not.

Tonight I will keep it short and sweet. I am sure I will have more news in the coming weeks.

Pure joy!

Wow, I can hardly believe it is November already! November and December are my favorite time of the year. I absolutely love the holidays and everything it represents. I know you are reading this for updates about my pride and joys and I promise I will be doing just that.

First, I will start with updates on my littlest love Julia. We are celebrating two months out of the hospital and being healthy. Huge huge win for our family. Julia has been making great progress in her recovery of post viral cerebellar ataxia. She recently started walking with a push toy for a total of five feet. Hooray! Julia is also clapping and banging toys at midline another hooray! She has become quite the daredevil sneaking up the stairs when we aren't looking, standing on chairs, surfing on her toddler rocker, and standing up everywhere. We also got her microarray results back, normal! Julia is still being followed closely by neurology and will see genetics soon. We just got back today from seeing Dr. Scavina and she is pleased with her progress but is still contemplating steroid therapy. I declined right now because we are heading into flu season and it worries me putting her immune system at risk. Right now we are in a good place with therapy and will add pool therapy soon. I know she is going to adore the pool.

Now onto my main man Hayden. I cannot believe he will be a big five year old next month. He is doing really well in school and loves his friends and teachers. Hayden recently went to the eye doctor and was able to read the entire picture chart. He didn't just read it he used descriptive words and size references. Hooray for preschool and all he has learned! Soon we will venture to his neurology follow up and orthopedics. This includes a new orthopedist who specialized in cerebral palsy. I am eager to meet Dr. Miller. I cannot wait to have someone assist me with helping Hayden become the best he can be. Hayden is also celebrating another important milestone we are finishing soccer! He is going to be so excited to get his soccer trophy on Saturday. Hooray for sports that include all abilities.

I have been seeing a ton of post on Facebook on starting to write down what they are thankful for each day. I think this is a wonderful idea. I am going to close my post today with my first thought for the month.

1. Today I am thankful for a simply perfect Halloween. Hayden and Julia loved every minute.

Today's post brought to you by: Inchstones

My emotions have been up and down lately. There are days I am encouraged by the improvement Julia is making and the strength Hayden is gaining, but then there are days that I struggle to see the positive. Julia has been seeing Hayden's old therapist from Easter Seals. I am so lucky to have them back in my life, not that they were really out of it, but the weekly support helps. It helps that they know my family, they know me, and they understand that I have these moments of weakness.  They help me see the beauty in little inch stones and embrace those joys. 

I have not been sleeping well over the last few days. I cannot seem to turn my mind off of the pending microarray testing that was completed on Julia on September 27th.  The thing about these tests is that I endure weeks of waiting. This test in particular takes three-five weeks to run the DNA analysis looking for deletions or duplication's. I do not know why I cannot turn off my mind. I do not anticipate anything coming back  for Julia since Hayden did not have anything show up on his analysis a few years ago. Still I worry and I wait. However, even if something does show up I know that does not change who Julia is and what she will accomplish. I think what I struggle with is the irony in this all. The fact that I had a beautiful normal developing little girl get a normal childhood illness. The fact that it took away some of my worry she was developing normally and allowed me to experience a typical childhood progression. The fact that it was taken away from me in an instant. I try not to be angry or allow for self pity of why me, but sometimes I just give into that nagging little part of my brain. That nagging little part that is saying it is just not fair. 

Despite my ups and down this week we had something amazing happen today. It was a day that I needed something amazing to happen. Julia walked pushing a toy. While this may not sound huge it is so big! She did this on her own for five feet, without falling, without help. My heart was full, my eyes filled with tears as my baby girl was taking assisted steps. I also witnessed my son Hayden cheer his baby sister on because he knew that was a huge deal today. I found him an hour later helping his baby sister, showing her exactly how to pull to stand. He kept telling Julia to put her feet closer together. He corrected her kneeling telling her to tall knee. This kid is amazing! He sees joy where I miss it some times. He truly is a wonderful big brother and the best big brother for Julia. I have written before how Julia has helped Hayden well today Hayden has helped Julia. He helped her get into positions correctly and he celebrated our big deal of walking with a toy. 

Wow, how my days can go from worry to joy. I love the days with joy and I know the days with worry will become less. I know once I have digested our new normal it will get easier. But most of all I know my children will have many more amazing days ahead. 

Life plain and simple

I had every intention today to write a post centered around disability awareness, especially since October is disability awareness month. I wanted to focus on what having a child with a "different" ability brings to our family. Then came the realization my sweet baby girl turned 15 months old today. Also, I did what I promised myself I would not do, but I did it anyway. I logged onto Facebook and saw pictures of family and friends children that are close in age to Julia. It hit me like a ton of bricks my baby girl is not walking independent yet. Wow, another child not hitting a major milestone. Now, the rational side to me says it is okay she is not doing it yet. She is not considered delayed until 18 months. She has got this! The irrational side wanted to sulk in self pity. Why my children? Why?  I know I may not ever understand the why, but it hit me again hard today. I do need to remember the neurologist warned me she might be late walker given the recent set back we experienced with the post viral ataxia. However, it did not soften the blow any less. I felt despite my best effort to focus on the positive it was important to share the reality of what it is like to parent a child with special needs and a child with well I guess "temporary" special needs.

I quickly sent a text to my friend Shawn who gets me and gets it. Whatever the it is. She reminded me again that we can have these days and that my children are going to do amazing things. You know what she is right and she allowed me to vent just for a minute and to realize writing this down is also important. That parenting in general is not all roses and that parenting special situations is definitely not all roses. However, my feelings they are absolutely okay and normal. I try to remain the forever optimist, but sometimes I get knocked down. I bring myself back up despite the blows. For these days that I feel defeated I have found a love of exercise. I have discovered something more than inner strength and that is physical strength. I still have a work in progress however, it is progress. You know what sometimes you have to climb a thousand hills to reach the mountain, but you eventually get there. Thank you Bob for letting me have this time to become stronger physically, for supporting the emotional moments, and my empowering moments.

I want to try to close this post with my original thought I want to focus on the meaning of disability for our family. I also want to emphasize this is not about what my children cannot do, it is about what my children absolutely 100% positively can accomplish. To sum up what they mean in a few words would be hope and inspiration. Those words took on a whole new meaning for me parenting one child with cerebral palsy. Now, with a second child recovering from an illness brings on a whole new meaning. I do not think I could ever imagine just how powerful two words could be. Hayden has shown me that outside of love, hope, inspiration and dedication is all you need. We recently participated in the Easter Seals Annual Dinner. I was so honored to be asked to introduce the key note speaker Congressman Castle this year. It truly was another amazing year. We were there with 200+ guest and those guest sure know my rock star Hayden. Hayden has quite the following and social calendar for a four year old. If Hayden is not your friend already you better believe by the end of the night he will be. Hayden was very eager to show Lt. Governor Matt Denn his volleyball picture, not once, not twice, but at least five times. He wanted to be certain he would be back for volleyball in 2013 ,that he knew he would be there and he was going to watch his daddy play volleyball. He is also quite fond of the stage and wanted to join Congressman Castle in giving his speech. We think he is starting early on his campaign for elective office. Not really sure if he is a democrat or republican just yet. Guess, time will tell. The night ended with heartfelt hugs and good byes. I know he is eager to attend the next event, not sure if it is for the food, the social hour, or being on stage. Probably a combination of all three.

As you can see from the evening at Hotel DuPont  Hayden has brought so much to our lives. Something more than love. Something that is more than being proud of your child. He has brought a purpose. He also prepared me to face a challenge that I did not think I could face, not once but now twice. He reminds me sharing our story opens up so many people's eyes, even just for a moment. He reminds me that having a disability really is not negative, it is a true blessing. He makes people stop and wonder, he helps children understand that different is okay, he enriches lives. He reminds me that I need to think about words differently and how they can offend someone. He reminds me to accept everyone for who they are no matter what. He has taught me to be a better person and I cannot thank him enough for letting me be his mommy.

So, after reading this post I hope just for a moment you see the beauty in all abilities. I hope you understand that I struggle just like everyone else but also have amazing moments. I hope you hold the door open for someone in a wheelchair or give up your close parking spot for the elderly. I hope more than anything you embrace differences, because different is okay.

Much love

Renee

xoxo