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…

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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4 comments on “There is always, always something to be thankful for……
  1. Culture Bean says:

    You inspire me every day, Chris. I dedicated my last post on Charlotte’s blog to your amazing kids.

    • chawk328 says:

      Thanks!!! I read Charlotte’s blog entry the other day and meant to say thank you and I got distracted. I hope to get the chance to meet Charlotte(and you) in person, she has an amazing mom and a great sense of spirit that comes through even over many miles!!!!

  2. LINDA DOHERTY says:

    Just read this and now I look like the blubbering idiot…LOL. Keeping all of you in my prayers.

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