Have I told you lately how much I Love my family?

Dad’s have to brag every once in a while, right?  I am so blessed.  Jennifer Cavanaugh is Brandon’s one on one at school and she sent home a note and picture of Brandon today that makes my heart burst with pride, love and thanks.  Seems that his class has a “Time with Friends” which is mainly free time.  She took a picture of Brandon’s table with a crowd of kids(all with big grins on their faces) and her note said that this is a common happening.  Tonight at bedtime Jeremy was kissing Cubby good night and said  “Good night Cubs, love you, sleep tight, see you in the morning, love you, my angel.”

Thank you to my wife for putting up with me and being such a tremendous influence on the young men that they have become, I will always be grateful.

Friendships, love and laughter.

My cup runneth over……….

2011 in pictures

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Merry Christmas

Merry Christmas from the Hawkins family!  Today started out as a great family day, the boys were extremely pumped up for Christmas and Santa Claus.  Wendy and I have debated on coming clean about the truth around the jolly man and it was confirmed today that we will.  Brandon went to bed early because he wanted Santa Claus to come and “if you are awake he doesn’t stop at your house.”  So when I got to bed at 11:30pm all was quiet.  When I got up this morning at 7:15am I thought to myself “Wow, I can’t believe the boys slept in past 6am, that’s unusual.”  However what I did not know was that Brandon had woken Wendy up at 2:12am to tell her he had been downstairs and Kris Kringle had made his appearance.  Wendy persuaded him to go back to sleep and supposedly he did around 3:30am.  The opening of presents, playing with some, putting together of some and breakfast and lunch(not necessarily in that order) brought us up to mid afternoon.  I jumped in the shower to freshen up and then all heck breaks loose.  I heard a crash in the room where Brandon and Jeremy had been playing with their Beyblades and next thing I know Wendy is yelling at me “SEIZURE” and I find her with him almost blocking the door to that room because of the way he had fallen.  He was seizing for about a minute and a half before he came to a stop and slept it off for 30-45 minutes.  Jeremy was visibly upset and kept saying “I am not going to have seizures because I take my medicine.”   It’s difficult to do but we don’t lie to them if possible about what to expect, so I had to tell him that this is what Batten may do.  He reminded us that “every child is different” so I know he has been listening to some of what we say at our fundraisers and such.  I am not sure whether this is a good thing or a bad thing, but can’t change that now.

We spent the rest of the day  in low key mode trying to keep an eye on Brandon, who is a little dinged up but by this evening had gotten that Christmas spark back.  He talked to my mom on the phone for several minutes and all she could manage to get in were a few “uh-huh’s” and “I sees” and such.

Even with all this activity today it was a great day in the Hawkins household.  It is always a wonderful experience to see the true joy of your children opening their presents on Christmas Day.  Everything from the “Mamasita Chihuahua” to Beyblades and Pokemon to the Nerd Ropes that are expected each year.  The bean bag chairs are a big hit and the dogs were in the middle of everything more so than usual this year.

Here’s to hoping that you and your family  have a Merry Christmas and a Happy New Year!!

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Happy Holidays

Wow? Is it really December 14th already?  Time sure does fly when you are having fun!  Brandon and Jeremy are extremely CRANKED for Christmas to arrive.  This is always a difficult time of year for them.  The anticipation of all that Christmas brings is somewhat overwhelming for them, but it is also fun to watch.  We are blessed to have two boys who are always smiling, quick with a joke or a laugh and have genuine hearts of gold.  Jeremy said to me this morning “I love you Dad, you are the best dad I ever had!!!!”   Being the wise guy that I am, my response was “How many other dads have you had?!?!?!?!?”  We got a good chuckle out of that one. I still am amazed at how tall Brandon has gotten, he is several inches taller than me and certainly is not done growing yet!!!!  As I look back on 2011 I am thankful for all of our family and friends that support us and have made it a wonderful year full of tremendous memories.  Events like VIP soccer, Special Olympics, Ready, Set, Hike at UNCC, Noah’s Run Across America, school functions, ourboys 5k, and 24 hours of Loopy have really made 2011 special.  I look forward to a great 2012 and hope we get to share a special memory or two with you along the way.  Thanks for reading ourboysjourney and Happy Holidays from the Hawkins family!!!!!!

Wow, where have we been?

I am just realizing how long it has been since I last posted an update.  Shame on me.

It’s been an interesting couple of months around the Hawkins household.  School is busy, and life is busy.  We had a string of 5 hospital visits between Wendy and I in less than two months, but the boys have been doing well.  Wendy and I are OK, kidney stones(me), gallbladder surgery(Wendy) and a couple other visits.

Brandon and Jeremy are both hanging in there.  We have definitely noticed that both boys have lost more vision, as both have been bumping into things around the house that they weren’t bumping into a few months ago.   Jeremy’s stutter seems to come and go, it got better for a while but now in the last few days it is back.  Jeremy has given his after school caregiver and Wendy fits with his moodiness and behavioral outbursts, but he hasn’t shown much of these issues at school yet.   Brandon has continued to spend alot of time creating imaginary “battles” with Beyblades and sometimes Pokemon.  He uses a wheelchair at school and on longer outings outside of school just because he gets tired easily.

Both boys are excited for Halloween Monday night, Brandon will be Mario(of Mario Bros fame) and Jeremy will be “Cobra Ninja” which ought to be fun.

Leaving you for tonight with a couple of recent pictures.  We will do separate posts for a couple of special events in the last couple of months.  We made it up to Camp New Hope for a much overdo visit in September and we also attended our second Ready Set Hike event at UNCC.  Many pictures and much fun to share.  Also be on the lookout for some upcoming fundraising events, more details to follow soon…..

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Noah’s Run, the final days

He just ran 2400 miles for Batten disease, what are you going to do?

Another Batten Conference in the books

As I look back on the last 10 days I can honestly say that I am mentally drained, emotionally recharged, physically exhausted,  sad and hopeful for a cure for Batten disease all at the same time.  I have cried tears of amazement and tears of sadness, tears of happiness and tears of frustration.  First tears came at Noah’s finish that was so inspirational that I didn’t see many dry eyes in the crowd, even among people that had just heard about Batten disease that day.   As I watched Noah run down the beach and slowly wade into the surf it became apparent to me that he was as amazed as I was.  Not by the physical feat because he knew himself well enough that he knew he would make it, but by what it would mean to hundreds of families that fight for the kids and have lost that battle already.  Afterwords I caught this picture of him that almost captures that moment…..

I always cry tears of sadness at some point during a conference weekend and this conference was no different.  I heard a story from a mom who recently lost her daughter to Batten disease that tears me up at this moment three days later.   I cried tears of frustration being introduced to another recently diagnosed child with Batten disease who reminded me alot of my boys, and as always I cried tears of joy when I watched the Saturday night parade of children.  To see a whole room full of people shouting and clapping and to watch the expression of happiness on the children’s faces is something I look forward to all year long.  One of the hardest things that I did this weekend was talk to a recently diagnosed dad because I remember the same shell shocked look on his face that I had 5 years ago after finding out that Brandon’s DNA test came back positive for juvenile Batten disease.  I took away a piece of advice from Fred Weaver, a Batten dad who lost two boys to Batten disease.  Although our family is far from “normal” our life is “normal” to us.

I am deeply encouraged by the advances in science that may reduce the incidence of Batten disease, by the dedication of the scientists that are searching for a cure and by the energy and drive that all our Batten families take into another year fighting this horrible monster.

Blessed, honored and humbled to have made it this far but so much farther to go….. This is a picture with Jacob Geer,  I serve with his father Rob Geer on the BDSRA board of directors.  Jacob has an undiagnosed form of Batten disease but that doesn’t stop him from flashing that smile…..

Noah’s Run for Research comes to an end Saturday

It has been a very busy month in the Hawkins household since school let out.  We have had a flood which caused water damage enough to replace the hardwood floors in our powder room and foyer and damaged the carpeting in two other rooms.   July proves to be another busy month beginning this weekend.  I am taking the boys to Jacksonville Florida on Saturday to be at the finish line to witness the most amazing piece of sheer will power that I will ever see.  Noah Coughlan began on February 28th from the Pacific Ocean near San Diego and will finish up at the Atlantic Ocean in Jacksonville at approximately 4pm Saturday.  His story is humbling, inspiring and just plain courageous.  The man has been averaging 15-25 miles per day on foot since February 28th!   Congratulations Noah!  Check out the Facebook page at:  http://www.facebook.com/pages/2011-Run-America-for-Batten-Disease/179351078745306

Brandon and Jeremy are excited to make the trip and we will be meeting up with several other Batten families in a prelude to the BDSRA national conference next week in Minneapolis.   We also have a wedding to attend this month, congratulations to my cousin Kim and her fiancee Chad, we are looking forward to fun in the ATL!!!!!

I am Truly a Proud Mother!

Summer is here and Brandon and Jeremy are enjoying their break  with me and their dedicated caregivers.  The end of  school was very busy with wonderful events closing the year.

Brandon graduated with the 8th grade class this year.  The middle school graduation evening ceremony was very long with so many students and their families, so everyone was asked to try to keep applause until each category was complete. Near the beginning of the presentation there were five different students awarded for different Character Traits.  Brandon was presented  for the trait of most Courageous Student, which he truly earned this past year.  At the end of presentation ceremony  one single award was presented for the 8th graders.  My heart filled with joy as Brandon’s name was called to the front for Honor Roll for Academic Excellence!  I was crying already with his achievement, when for the first time all evening Brandon received a standing ovation from the entire audience and students.  WOW!  It just doesn’t get any better watching him grinning from ear to ear very proud himself of his Excellence. Truly an evening that will NEVER be forgotten.

The following week I was asked to attend a book signing event for Jeremy and his 4th grade class.  His teachers had worked with him on creating a book which he illustrated pictures and dictated the words for each page.  The 4th grade class sat in the library as Jeremy and his best friend Cam sat up front.  The teachers explained how Jeremy created his book and his friend Cam read the book aloud to the class.  Jeremy sat and smiled so thrilled with his accomplishment, as he truly should be.  I hid in the library as we didn’t want Jeremy to know I was there so his book could be a surprise.  I was flooding with tears, again a Proud Mother of my spectacular child.  For the last surprise Jeremy signed his book like a true author.  The book is bound in a hard cover and will be available in the library next school year for children to check out.

As their Mother, I experienced true events that were above and beyond any  expectation.  Two days of crying many HAPPY TEARS!!  Thank you teachers from Jeremy’s Elementary School and Brandon’s Middle School.  That exemplifies the best teaching with great outcomes.

24 Hours of Loopy Recap

What an amazing weekend!!!  I am going to apologize in advance for not being able to recognize all the wonderful people that I met and that helped us make this weekend so special.    First and foremost, Jeff McGonnell is my hero.  Period.  What an incredibly selfless act of friendship to take on the planning, organizing and production of this event.  Oh yeah and did I mention how “Loopy” he is?   Thank you to Jayne McGonnell, Courtney Spear, and Steve Gibbons.  Without your contributions this event would not have been possible.  Thank you to Ben, Selena, Julia and Erin for helping out all day Saturday and Sunday and to Scout Troop 58 for setup and cleanup.  Alex Morton was out all night helping Jeff stay hydrated, fueled and steered in the right direction.   Thank you to the Davidson Area Running Team and Team G for your support of Jeff and this event with your presence,  your encouragement, and the promotion of the event to the community.  Thank you to the musicians that came out and entertained us on a VERY hot Saturday afternoon and evening, I was completely blown away by the incredibly talented performers that Billy Jones at Birdsnest Music brought to the stage!!!  A big thanks  to the Town of Davidson for partnering with us on this event and making it such a success.

Thank you to all the people that saw newspaper articles(special thanks to David Boraks for the follow-up coverage at http://davidsonnews.net/2011/06/04/photos-of-the-day-24-hours-around-the-village-green/), heard about the event in the community and allowed us to tell them about Batten Disease this weekend.

International Batten Awareness Weekend was a huge success in Davidson, NC!!!!!!!!