Snow Day

Snow Day

Snowmegeddon 2014

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Why put on ourboys 5k/10k?

Easy, watch this video and look at all the smiling faces.  The footage was taken in 2010, and it’s hard to watch for me(Chris) because of the change in Brandon and Jeremy, but the love and support far outweighs the sadness.

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Testimony from yesterday

Here is the video played at the boy’s Baptism on Sunday. Huge thank you to Anthony West, media director at Crossroads for his amazing talent. We hope to have video of the baptisms themselves soon as well.



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Celebration of Baptism

Brandon and Jeremy were baptized when they were babies and have always known they are Children of God.  Over the last few years Brandon especially has really grown in his faith, he knows many bible characters and parables and both boys enjoyed Bible study every day over this last summer.  Brandon recently asked if he could be baptized again and Jeremy is also eager to do so.  Please set aside the date of November 24 at Crossroads Church  in Concord, NC for this special event.  We would love to share this amazing experience with our family and friends.  The baptisms will occur at the 11:11am service that day and we hope to see you there to celebrate!!!!!!

First Day of School 2013-14

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Another step in the journey

Sometimes I need to remind myself to slow down take a step back and just be.  Just be present, don’t think about the future, don’t think about the past, just be here in this moment in time.  Just breathe.  In and out, in and out.

Thanks for humoring me with that break from the crazy race that is called life.  Glad to have this life, after all it may not be the way I wanted things to turn out, but its what I have been given, why not enjoy it?  

Update:   Wendy and I are officially the owners of a handicap accessible van, just another step in this journey.  It has come at a time where it is needed as the seizures have been happening more frequently for Brandon, we have added another medication to slow them down.  They are becoming longer and his recovery is taking longer as well.  Jeremy has continued to struggle with his speech and to some degree behavior, although we have been seizure free with him(knock on wood).  School has been different for the boys, Brandon is starting to lose interest in the academics as it has become more difficult for him to remember things and to stay focused.  Jeremy has really enjoyed school so far, even though he misses his helper from the last two years(she retired), he has a wonderful helper this year who has made the transition smooth!  Thank you Mr Wallace! 

It’s very humbling to ask for help from your family and friends, but we have heard from you all that you want to support us and sometimes don’t know how.  It is impossible to put into words how much the mealtrain has helped us.  Our neighbor and friend Pam asked if she could start it up for us in August and we reluctantly agreed.  It has been a blessing from God to be supported by having meals provided almost every night during the week.  This helps us logistically and because I miss so much time from work, mostly unpaid, it helps financially as well.  If you would like to sign up for a meal the website is .

Fundraising news:  We will be working closely with the Highland Creek Run the Creek 5k this year in conjunction with ourboys 5k/10k.  Run the Creek is Saturday March 22, 2014 so mark your calendar now.  ourboys should be in late April or early May.  The races will be offering joint sponsorship opportunities so if you are a business owner that would like to be exposed to hundreds of families in this area please reach out to me at  

Thank you for your continued support and prayers for our family, we could not do it without you!!!! 






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Our friend Pam Barnard recently set up a meal train for us.  This link allows anyone to sign up to bring or send a meal to help us out.  It has become more and more difficult to handle the needs that pop up in our every day life, etc.  We really appreciate the help from our friends and family!!!!

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There is always, always something to be thankful for……

So I haven’t updated this blog in quite a while again, but a couple of things have happened in the last week that made me want to update  you on the Hawkins family.   We definitely have had a busy several months since the 5k and 10k in May.   We have had a good summer although with all the rain here in Charlotte Wendy and the boys have not gotten to the neighborhood pool as much as they would have liked.   Many changes, emotional and physical over the last few months.  Brandon needed and got a new wheelchair this summer to make him more comfortable at school and home, this necessitated purchasing a van that is currently being converted for a rear entry ramp.  Not exactly the vehicle that you expect to get your 16 year old for his birthday that’s for sure.  Brandon has increasingly been having seizure like episodes over the last year or so that we finally ended up having him hospitalized last week in response to three “seizures” in a short period of time(less than 24 hours he had two good sized episodes and a grand mal seizure).  It turns out that many of these seizure like episodes may not be seizures.  That’s the good news, the bad news is that since they aren’t seizures it’s possible that it may just be natural progression of Batten Disease, or they could be anxiety attacks or his bodies natural response to stress.  Either way there is not a whole lot that can be done to treat them, just make him comfortable as can be and keep him from hurting himself.  He has continued to have about one grand mal seizure every 3-4 weeks, which are scary.   Throughout all of this Jeremy sits back and takes it all in.  At times his speech is so stuttered that he is difficult to understand and occasionally he says (to himself more than to anyone else) “I don’t have Batten Disease.”  He has trouble going to sleep and staying asleep at night.   Luckily we haven’t had larger seizures with Jeremy yet.

So now I am getting to the reasons that I decided to post this tonight.   A good friend of mine posted a picture on his Facebook page the other day that is currently my cover photo as well.  The quote is “There is always, always something to be thankful for!”   I wanted to share with you two experiences this week that highlight that statement for me.  On Sunday during church service at Crossroads Church in Concord Brandon had one of his “episodes.”  We tried to get him out to the car to take him home but he was not transferable and as mentioned earlier the van is still being converted.  So we ended up pulling him into an empty room and Wendy with several other prayer warriors began praying over him.  Jeremy was having a difficult time so I decided to take him back into the service for an amazing message from Pastor Mark Appleyard.  When the service was over Jeremy and I headed in to check on Brandon and Wendy.  Brandon had recovered quite well and was drinking a glass of water and talking to the group about dingos, koala bears and natives with bones in their noses(Pastor Mark is from Australia!).  On the way home Jeremy was riding shotgun and he turned to the back seat and said “Brandon, you have alot of guts for being tough.”  There is always, always something to be thankful for…….

This morning I had an appointment with my endodontist to check on a tooth that had been bothering me recently, the original work was done on this tooth back in September 2008.  As I was leaving the office the lady at the desk asked how Brandon and Jeremy were doing, she had remembered me and our story from back in 2008.  I gave her a quick update on the boys and then her next sentence brought me to tears.  She said that our conversation back then and how I dealt with the boys illness had helped get her through the death of her husband who had battled colon cancer and passed away in the spring of 2009.   Even though she reduced me to a blubbering idiot(I got some strange looks coming out of the building from others headed in to see the doctor) I am so glad she stopped me and told me this.  I am so blessed to have these boys in my life and despite this horrible disease they continue to change the lives of others almost every day it seems.

That’s right, there is always, always, always something to be thankful for…


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