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Being a Kid Again

Posted by mack1014 on Jul 30 2010

Too often, I continue to get caught up in the whirlwind of daily life. Bills to pay, errands to run, seemingly endless therapy sessions for Isabella, just to mention a few. But last week, I was reminded, by my own two children, of the need to stop and have fun. We went to a local carnival and enjoyed a simple afternoon. No phone calls, no bills, no traffic, no work. Just messy, extra-buttered popcorn, winning goldfish, riding on the fun (but marginally safe!) carnival rides, and listening to music. A woman standing in line for a ride with my wife and Isabella told my wife that she was glad to see that we were not afrai...

Stormy Seas

Posted by mack1014 on Jul 20 2010

This one is for the Dads today - I hope it gives you some inspiration. Do you ever feel like you are on a beautiful yacht, sailing peacefully on a crystal blue lake or ocean? Then, suddenly and without warning, the storm hits, and the winds race at you. The sails bulge and flap, causing the boat to tip perilously to one side, threatening to toss you overboard into the maelstrom of waves. You don't know how to react, or what you will do, or even if you will be able to keep your head above the water. At this singular moment, you may even doubt your role as a sea-worthy captain. And how about the cargo on your ship? Your family...

My buddy

Posted by mack1014 on Jul 11 2010

What a great weekend with the kids! And, that got me thinking. Even though Isabella cannot speak, I sometimes try to imagine what is going through her mind. And, if I can indulge a bit and give her a voice, I believe this is what she would say today about her little brother: My mommy and daddy adopted my little brother, Christian, in March. At first, I was scared. How could my mommy and daddy love another baby? What about me? Would they forget me? Would I have to share.....everything?!? Four months later, I am more excited than ever to be a big sister. Boy! Did he surprise me...

Fatigue: Going into battle, or going to bed?

Posted by EFTV on Jul 06 2010

As I sit down to write this blog, my daughter, Isabella, my son, Christian, and my one-eyed bulldog, Winston, all sleep peacefully around me. And it has inspired me to think about “being tired”. Or, better yet, a more powerful word – “fatigue”. And as I keep thinking, I realize that fatigue has many meanings. Webster’s Dictionary defines it first as “weariness from bodily or mental exertion”. A bit lower in the definition, it also refers to “fatigue” as “combat clothing worn by soldiers”. I have never been a soldier, and I thank God every day for those who serve. But, as I reflect on the word “fatigue”, I r...

Introducing Izzy (Part I)

Posted by EFTV on Jul 06 2010

I’m new here to the blogosphere of EFTV, but I am grateful to have been invited to share my story. Actually, I should say Isabella’s story. She, after all, is my Little Princess, or as I like to call her my “shmooglette” (she’s not going to be happy that I revealed that nickname!). Isabella (or Izzy) was born with a very rare syndrome, known as Joubert Syndrome (or JS). Essentially, a small piece of the cerebellum – the “vermis” – is either absent, or not properly formed. Balance and walking are difficult for her, and she is non-verbal, although she communicates in many different and amazing ways, from different signs...

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