May 2013

HAPPY 10th Birthday Nicholas

Today is Nicholas 10th Birthday. I am so blessed that he came into our lives 10 years ago. Today I have very mixed emotions about how I feel. Today makes me remember every minute of the day he was born. As new mom.. I was filled with anxiety of how I was going to take care of this little boy. He was born at 4:50PM absolutley beautiful at 9 pounds 8 oz and 21 inches long. Gorgeous green/brown eyes and blond hair. I never felt so needed and loved.

Nicholas was a active, confident, strong, loving little boy. Everyone one who came into contact with Nicholas loved his warm charming smile and blond hair. He easily made friend everyone where we were.. everyone loved Nicholas! He was smart, loved all sports (and he was good at them) and loved new tasks! He and I have many fond memories together in CT such as running aournd the Bridgeport Park Zoo, going to the Norwalk aquarium and Stepping Stone children’s center. We spent a lot of time crusing the hall of the Stamford mall, outside in the sprinklers afternoon walks and catching that ice cream man.

I also can not help to remember the difficult times in the past 5 years when he had his first seizure at age 4. That was the beginning of many more struggles to come. My little boy who was once confident became very insecure and aggressive due to the seizure medications. We had many visits to children’s hospital and weekly blood draws to check if his meds were at the right dose. Holding down a screaming child full of tears week after week was emotionally and physically exhausting. I watched Nicholas grow into a strong happy boy and then decline weekly loosing skills quickly.

Damn I hate what this disease has taken from my son, from my family and from our life. I hate it with every ounce in my body that I catch myself having a difficult to just breath somedays. This was not our plan.. this was not our plan..

The day Nicholas recieved a MRI in Septmenber 2008 showing brain atrophy and diagnosed with this fatal disease was a day that I will never forget. It knocked the wind ou of me and my knees hit the gound. Chris and I just held each other and cried. We had so many questions as thoughts raced though our minds about his future. I remember Chris told me… Don’t weap now.. Nicholas need you strong and you need to be strong for our family and friends. Cry when he is no longer here

I try to focus on good memeories I have with Nicholas as our many trips to Disney World, To Storey Land and Santa Villedge, to the Beach, to the pool, playing minuature golf, soccer, basket ball, tag, riding bikes, going to the play ground. Getting Shane Nicholas service dog as his “wish” through make a wish foundation. As I write this blog it is also hard for me not to feel my eyes fill with tears.

Then I see my other son William. He brings me pure joy. A joy that I would have never recognized if it was not for Nicholas. I watch William do things that Nicholas was just starting to have difficult at age 6. William concors them so easily..such as sports and school. I see how our experience with Nicholas has also impacted William’s childhood. He has become a sensative and carring child watching us take care of his brother and learning the gift of giving.

I have to think that Nicholas was given to me for a reason. As crazy as it sounds I have been blessed to see a few angles in my life and now I am living with one. I have to believe that who ever it is that lives in heaven.. god or where ever we go after we die… has given me a angle to take care of in my home. This road I was given has been very challenging and difficult but I think we are going to be okay. Niholas can no longer speak, is fully dependent on me for his care and to advocate for him. I can see in the expression in his eyes how he feels and I am thankful to be able to read his needs. I could not do it with out the support of my family, nurses, care takers and therapist that surround us. Together we all try to keep Nicholas as comfortable as possible.

I reflect over the past years with lots of sadness and dispair about Nicholas’s health. But when I flip the coin over there is so much to be thankful for around us. The growth of Our Promise To Nicholas Foundation became something bigger than I could have imagined. I am so proud to be part of this foundation by making an impact on this disease and in my life time. I am humbled by the generosity we have recieved from our family, friends, community, businsess and even strangers who come across our story. Nicholas soul and presence has done this to everyone around us. I am grateful that he is my son.

UPCOMING FUNDRAISERS

Bowl for Nicholas

PLACE: Merrimack Ten Pin

689 Daniel Webster Highway, Merrimack NH

Date: Sunday May 19, 2013

Time: 11AM-1PM

Admissions Fee: 20.00 per person

Under age 5 free

Includeds 2 hr unlimited bowling, bowling shoes, fresh hot pizza and beverages, LED lighting and Music, Raffles, Prizes and

Also don’t miss getting Happy 10th birthday cake for Nicholas!

Visit Merrick Ten Pin Web site

Bedford Martial Arts Academy’s

Annual BIG SUMMER BASH

to benefit Our Promise To Nicholas Foundation

Date: Thursday June 20, 2013

Time: 4PM-6:30PM

Admission Cost: Free

Games, Food and Raffles: Donations appreciated

TONS OF FUN!!! There will be Bounce House, Dunk Tank, Magician, Games/Activities, Demonstrations, Raffles, and LOTS MORE! Good Thymes BBQ will be there firing up the grill. Great Music by DJ MC Hoopsta.

Visit Bedford Martial Art Academy Web site

5th Annual Fore! Nicholas Golf Tournament