Happy 2nd birthday Julia

Dear Julia

My little love bug I cannot believe another year has flown by. Wow, you are already two. Your second year started off pretty scary. We were so fearful of how your little body was going to recover from such a scary infection. However, you have proved us wrong and you showed me how to believe miracles happen. Every day you fight. You fight to get stronger and fight for your sassy little independence. I love how strong willed you can be. 

Amazing what a year could show us. You love life and love our little family. I am often surprised at all the little things you love. You love pink. Everything must be pink from your toe nails, clothes, and shoes. If it sparkles you love it! Purses, shoes and sunglasses are pure joy. I love the way you balance being extremely girly but enjoy playing cars with Hayden. I love the way your smile lights up the room. The way you say daddy melts my heart. I love the little barking sounds you make when you see your doggies Cody and Sophia. Our snuggles I do not ever want to let go. 

Baby girl you are so independent and so brave. You are definitely no one other than Julia. I hope you always stay independent and love able. I hope you continue to see the beauty in the simple things in life. I hope you stay sassy and decorate the world in pink. I hope you still love to paint and play with your brother every day. 

I hope you know how much I love you. How much I wish I could take away how tough this year has been. I want you to always remember how proud I am of you. I cannot wait to share many more toe nail, shoe shopping, pink and glittery days with you. Words cannot express how much I love you. You are my sunshine. 

I love you!!

Happy 2nd birthday my sweet Julia! I love you!!

Mommy

Saying goodbye to preschool and hello to new bright beginnings....

     We have a big independent kindergartner!  I cannot even believe those words as I type them.  Hayden's last day of preschool was emotional for me.  I was sad we were leaving his wonderful teacher and para.  I struggled that my baby is no longer a baby. He truly is a boy growing up to quick.  There has been so many ups and downs the last 2.5 years. We have had some trying times with a suggestion of a wheelchair or his walker not working for the classroom. However, those trying times are far outweighed by wonderful moments.  Hayden is talking well, he is able to identify colors given choices, he can write a letter H, draw a person, draw a house, has a vivid imagination, and most importantly he can walk in his walker keeping up with peers.  When I first took Hayden to preschool he was just getting the hang of his crocodile walker. Since that moment he has graduated to a lighter weight walker a Nimbo.  This walker allowed Hayden the freedom he desired so much. He runs, he plays, and best of all he is proud. He is proud to walk in the stores and nothing is stopping him now. This post about preschool would not be complete without me talking about Hayden's teacher and para. We love them dearly. I really struggled with the fact we would not see them every day. That someone new has to learn about Hayden.  I do not know how anyone would love him the way his current teachers do.  I still worry.  I still want to know his favorite people in the whole world outside of his family will see him everyday. I felt safe knowing they got Hayden. Most of all I found people who believe in him and who were not scared of his disability.  They saw Hayden as a typical five year old boy. He was not treated different and I cannot thank them enough for being so wonderful to our son.  I know we will forever hold them in our hearts and we will keep in touch. They were so critical to Hayden's success the last few years.
     Hayden just finished another year of baseball. He had such a great time playing on the Phillies. He definitely looked forward to every game. As you may have guessed Hayden was quite the ladies man. Whenever we had female buddies you can bet Hayden had a few playing with him.  I am not sure if I should be worried that my five year old has a way with the ladies already. Unfortunately, he was not able to finish his last two games since he sprained his hand, but he definitely is looking forward to next baseball season.
     A few posts back I wrote about some more genetic testing for Hayden.  For those following Hayden's story we really do not know what is causing most of his delays.  We do know he has a underdeveloped cerebellum, suffers from hypotonia and ataxia, and has some vision difficulties.  We have been through two MRI's, two genetics doctors, vestibular testing, micro arrays, muscular dystrophy testing, PMD testing, other scary disease testing I fondly call (the M word), and most recently we completed a hereditary ataxia panel.  After several weeks of waiting, which is the worst part we finally heard from our neurologist.  All the testing came back normal.  Normal is great news but normal is also frustrating news. I am relieved he has nothing life threatening, but I wish I had a reason for his delays. For his future I feel it is important to still search for an answer.  I had a conversation with his neurologist and we decided it was time to consult another neurologist. This time we are headed to Children's Hospital of Philadelphia.  This will be the forth neurologist Hayden has seen and I am hoping he might have some new ideas or he might finally just reconfirm that what we are dealing with is an unusual form of cerebral palsy.  Stay tuned to our neurology updates.
    I want to end this post on some hopeful news.  Hayden had an orthopedic doctor follow up on Monday at AI Dupont.  We love Dr. Mackenzie! He truly embodies everything a children's physician should be. He is kind, he is optimistic, and he treats you as if you are his only patient.  He examined Hayden and we were shocked to learn Hayden grew 4 inches since December! I knew he got bigger but four inches wow!  He was so impressed with our little guy. He could not believe how strong he has gotten and how fast he has gotten.  Hayden loves to walk around the muscle clinic hallways to pass time. He also loves to stop and socialize with everyone. I mean everyone nurses, doctors, students, patients, cleaning staff, and the list goes on.  The muscle team knows Hayden by name. Not sure if it is because he is very outgoing or because he is a mystery.  Anyway, we met with Dr. Mackenzie who spoke of all the things Hayden has accomplished in a few short months. It's hard to realize how far he has come when I see him every day.  I was thankful he pointed out these little inch stones to me. Dr. Mackenzie looked at me and said this little guy is going to walk independent. I looked at him and said really without a walker?  I have always been hopeful but I am cautiously optimistic. He has improved so much and I dream that there is a day things are easier for him. But hearing those words from Dr. Mackenzie made me smile and made me hopeful. He said there is not a time limit on when someone has to graduate from using a walker. It is going to be when Hayden does it and when he can control his balance.  Little did he know how much hope he gave me. Even for a five minute conversation I had hope. I wanted to hug Dr. Mackenzie but I thought it was best I did not shock him with a hug from an emotional mama. I still am beaming about our visit to AI yesterday. From the time Hayden stepped out of the car in his walker. He walked with me I did not need to direct him or slow down.  We made it from the entrance and upstairs in 10 minutes. He even stopped to see a therapy dog at the hospital. She was a chocolate lab and we all know our family is obsessed with labs.  We arrived at the muscle clinic in time for him to play angry birds which made his day.  After his appointment we had to head to Lawall's to have his brace fitted.  Hayden walked again.  Once we got to Lawall's Hayden tells the receptionist " I am here where is Mr. Gary?" she said he is with someone now. Hayden tells her that is fine I will walk around some more.  My boy who struggled 2.5 years ago to keep up wants to walk around some more!

  Until next time....  Thank you for continuing  to follow our story!  Thank you for letting me share our accomplishments and joys.

xoxo

    

IEP's, accommodations, oh my!

Ten days has fast approached me today. Ten days ago I left an IEP meeting for Hayden feeling sad, defeated and so worried about our big transition to kindergarten. I worried would Hayden's new teachers, para's and peers love him the same? Is the new beautiful school a perfect beautiful school for Hayden. I was saddened that we had to leave behind Hayden's teacher's and para's who we adore. Who Hayden adores. I left that last meeting digesting the fact we had to talk about a wheel chair and all that meant to our family. What that meant to Hayden. I reached out to friends and even had a very wonderful mama who walks this journey check in on me. My world during that first IEP transition meeting felt defeated. I was shocked to hear those words and still need time to digest those words. Please do not think I oppose wheelchairs. I have met many wonderful adults and children who live a rich and fulfilling life using a wheelchair for assistance. 

What I do not think the therapist or others truly understand is our journey. Hayden has traveled on a journey for five years. We have celebrated and cried on this journey. I also cried and had to accept Hayden needed a walker. It takes time and a ton of emotional acceptance to digest adaptive equipment. I felt at that first meeting all the work and all the dreams we had for Hayden needed to change again. I am not ready to change my dreams just yet. I have big dreams for my son. I hope to continue to use less support and reach more independence. You know what he is proving he wants that too. Hayden wants to walk in stores, he wants to run with his friends, he wants to do things for himself. This is why I am making a choice for him. I am saying no to starting the school year in a wheelchair. I am asking for a try and for everyone to believe he deserves to try. 

School means well, the therapist means well, and people close to Hayden mean well. However, I believe my little boy deserves his chance in his light weight walker he fought to finally be able to use. Today, I feel happy and proud of what I accomplished for Hayden. I am giving him the opportunity he deserves but I am also being open minded this may be our future. For the past five years our future has changed and I know will continue to evolve. I am excited to see what next year brings. I am excited to work with our new teacher and administrators to help Hayden be the best he can be. 

Transition an evil little word

I know every parent wishes their children would remain young. I never understood that before I had children. They truly become your whole world and existence. You would do anything to make the world perfect for your child. I prepared for this transition from preschool. Am I ready no? Do I wish I could keep Hayden with his teacher, therapist, and para that love him? YES!! Reality is transition is happening. In four short months Hayden will be in kindergarten. My first born, my sweet baby boy, my son who has a disability will become a big kid. This mom has many emotions. I know I will be okay and more importantly Hayden will be okay. It does not mean this road we are traveling on for five years has been easy. At times it has been hard, but rewarding in the same breath.

Today was no different than any other day. I woke up knowing I prepared well for this transition meeting. Observations at his new school were completed a few months ago. My letter was prepared addressing what would assist Hayden in being successful. I was pleased to see the therapist and teachers agreed with many of my requests. What I was not prepared for was the conversation of a wheelchair. As a mom of a child with mobility difficulties you wish you could give him your legs and balance. You wish you could make things easier but I cannot. What I can do is be the best mom and advocate for my child.

Just like the day I heard Hayden has delays at nine months or the day the words posterior walker entered my vocabulary I sat. Tears filled my eyes. I have not had time to digest those words. I have not had time to process is this our new reality? Instead those words were uttered to me from an educator who has been through a multitude of IEPs. Someone who has been educated about accommodations, IEPs, 504 plans, and district policy. Her statement was not meant to be hurtful. However, it did just that it hurt. It hurt all over again about bumps we have in our journey.

I like to think I am a good mom, a proactive mom and advocate. I have spent many restless nights researching. I have been through disability training. I met amazing people in my disability training who get it and who understand the road I travel. Why is this topic not easier for me? Why did this hurt? Why am I sad? Why am I angry that our education system still needs an overhaul? Why can't I shake this sick feeling in my stomach. I want to yell it is not fair. I want to say I have been tested now please no more tests. I want to wake up and know Hayden understands I love him. I want him to know I will never give up hope. I want him to know I am doing my very best.

Now as I digest my day I am going to take some time to be objective. I am going to take some time to remind myself we have many accomplishments. I am going to take time to cry. I am going to kiss and hug my baby boy and tell him I am proud of him. I am going to tell him he can be a policeman when he grows up. He can play baseball and he can run. He can chose to participate in crossfit or become a swim super star. Most of all I believe in my little man and I believe I will make the right choice. This choice seems hard now and a shock. Tonight I feel frustrated but I know tomorrow will bring me joy. Tomorrow I wake up to my life a life I would never trade. I have a husband that loves me, friends who support me, family who know matter what will be there and two beautiful fighters. Hayden mommy loves you to the moon and back!

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!