July 1st, 2010

It’s been over 6 months since I last posted here.  So sorry.  It has been a challenging few months for us (so what’s new – right?)  I finished up my first year of teaching and am fully immersed in a well deserved summer break!  How is Christopher?

Christopher’s pressures are holding steady, with no problems, at around 18-20.  Dr. Greenidge thinks that may be his new normal and that he may be ok with those numbers.  I’ll accept that for now.  However, at our last visit, about 2 weeks ago, he dictated a letter to Dr. Mendenblatt to advise that he recommended patching “as much as is medically indicated” which means as much as is medically allowed, to force the left eye to work more.  Dr. Mendenblatt did just that by asking us to patch 24 hours for 3 weeks!  Daunting!  Christopher, my hero, has been handling it with aplomb!  He is just the most amazing boy I’ve ever known… really.

He has worn it now for 4 days and not only has he had no problems at all… it has been easier than patching for only 4 hours a day!  His attitude is much better.  He doesn’t want to take it off at all – even to switch it out for a new one – until he is in the bed ready to sleep!  He completely understands the “why” of it.  He understands how important it is.  He handles it with dignity and doesn’t let it stop him from doing ANYTHING at all!  He and I even went to the park today where there were at least 200 kids there!  It was a horrible mess.  With both eyes working perfectly it was a dangerous place… but he had a blast and climbed a “spider web” rope for about an hour.  Climbed up to about 12 feet high (when I made him come back down!)  Sometimes, he is such a typical boy!  🙂  We sure do love him!

Reading my blog will surely show you how much this has changed our life, but here’s an update on just how much:  Laura is now in her 3rd year of undergraduate work in becoming a TVI teacher (Teacher for the Visually Impaired!)  She is actually learning how to read and type – Braille!  She studies every single night… and day… tirelessly!  She is a superwoman to me and I absolutely love, respect, and adore her for all that she does.  She has totally dedicated herself to achieving her teaching certificate and helping other visually impaired children in need!

Kevin – my youngest son, is 15 months old – today!  He is equally as special as Christopher – in many different ways!  He is so adorable, loving, funny, smart, laid back, and he idolizes his big brother, Christopher!  He puts up with everything we do for Christopher without any problems at all.  Even though he is only 1yo right now we can tell that he somewhat understands some things that go on and he doesn’t have any problems with it!

To say that today is just another day in our life’s journey would be a true statement.

To say that today – I am feeling prouder than I ever have is the truest statement I could make.

I’m proud of my loving, tireless, heroic wife.  I’m proud of my youngest son who has the best personality I could ever ask of him.  I’m proud of my true hero, Christopher, who I still learn from every single day.  He just shows me what it means to fight for what you have to fight for and keep going… every day.  He never gets a break from his disease.  He never gets a break from us “trying this” or “trying that” to help his eyes.  It must feel like torture sometimes… We often say that he has more persistence than is humanly possible… he never quits when he wants something… Now, just today, I understand, completely why that is!

I’m a proud… proud Daddy and Husband!