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   http://www.mealtrain.com/?id=mneraay3coct .

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 chawk328@live.com.  

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

Chris

 

 

 

 

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About

I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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