Monthly Archives: June 2015

Still Being “Me-Me”…

Some time ago, I wrote that we were given reason to believe Chase might have cataracts.  As only Chase can, he went about the final diagnosis in the most interesting way possible, going “for broke” in the eye department last Monday – having contracted pink eye over the weekend before his meeting with the specialists.

The morning turned into a typical Chase-at-the-doctor type morning, logging in several hours start to finish, one bargaining session [“Come out from under that chair, Chase…I mean it, Chase…], and at least one good, old-fashioned three-people-to-hold-him-down moment.  Can you imagine having your eyes dilated in the middle of rampant conjunctivitis?  Chase could not.  [And to be fair, I wouldn’t put it on my wish list either…]  Whether it was the feeling of light sensitivity, not being able to see, or actual discomfort, I’ll never know, but he didn’t stop screaming for nearly two hours after the appointment and only stopped when he fell into an exhausted sleep leaning on my shoulder.  It was a Monday for the ages…

Waiting to see the doctor

Waiting to see the doctor

The less than great news is that Chase does indeed have cataracts and his vision is quite poor.  The cataracts are being attributed to his radiation treatment.

Radiation – the very thing we elected to do when chemotherapy alone wasn’t working to take the cancer from his body.  

Radiation – the component that very likely saved his life.  

We knew these things might come.  We’ve known them from almost the same day of his diagnosis, but that doesn’t mean it doesn’t hurt like a punch to the gut when you see him sitting in the chair, or hear the outcome and know it’s because of decisions you made.  

This is the hard part of Chase’s life and treatment – the offered doors are two: death, or damage.  To date, there is no third door for AT/RT.  

However, even with all the difficult, there is really good news, too.  Though Chase needs glasses and will need to be monitored every few months for the foreseeable future, the doctor on his case indicated that Chase is still able to see around the cataracts and that surgery is not a necessity at this time.  We realize that cataract surgery is not a big deal as far as surgical procedures go, but when your anesthesia stats are in double digits already, it’s nice to be able to prolong yet another time going under and more work being done.

Chase is very concerned about his need to wear glasses.  He keeps asking me if he’ll be able to take them off at the end of the day and go back to being “me-me” – the phrase he’s using to define the real him – as if the wearing of them will turn him into somebody else.  We keep assuring him that he’ll still be Chase even with the glasses on his face and that many people around him – many that he knows and loves – all wear glasses.  The glasses won’t change his person, just his sight.  And given how poor the number on his current vision is, we look forward to opening up life for him and allowing him to see more.  As always, we’ll take it…

…moment by moment.

Even superheroes get pink eye...

Even superheroes get pink eye…

The End Of A Moment: Intersecting Lines

You guys, for real… On Friday, Chase finished preschool.

I know people are always wishing that their babies would stop growing up and moving further on and away with their lives and I get that, I really do, but in Chase’s case, I love the growing up because it’s what life is about and there have been days and seasons when I didn’t know if we would have those life chances with him.

And for real… this is the kid that I held when he was too weak to walk, and I balanced him when, at age four, he learned to jump on two feet, and I sat with him as he diligently traced “exes” and “crosses” on paper – because intersecting lines were something his brain needed to work hard to figure out. Chase has gone from all these challenging places to taking the intersecting lines and spaces and forming the letters of his own first name.

He holds it in his hands here – not “Last Day of School” or anything else, but this, his name – a part of who he is.

For weeks now, he’s practiced and traced and when I asked him if he’d put it on the sign, he asked me if it had to be perfect, because Miss Marlene, his teacher, said it didn’t have to be perfect.

But, see…? It is perfect, the whole moment is perfect because it’s Chase and he’s gone further than anyone dared hope.

We are so blessed.  Moment by moment.