Mom Guilt & Tacos

January 2014

The year started off cold.  Our schools had some delayed openings due to the below zero temperatures that the Polar Vortex brought to NJ.  It was the coldest I remember it being in an extremely long time.  I decided that although I considered  myself a winter person...I was now becoming a fair weather winter person. Which in my opinion meant I wanted it to be cold enough to snow, but warm enough to walk to my car without getting frostbite.

Jan. 13, 2014 - Emily was due to see Dr. Kane again for a pressure check.  I was nervous because we really hadn't seen him since we made the decision to postpone the cataract surgery and I knew he was pretty set on the opinion that she needed it done.  I also had MAJOR Mom Guilt going on.  It had been over a year since she first saw the Ocularist and received the prosthetic shell and Emily wasn't wearing it.  I was terrified by the thought of ever hurting her and I didn't want to cause any further anguish over it.  Em always fought me, keeping her eye squeezed shut when I tried to put it in. She would cry and say I was hurting her, that the lens hurt her eye.  But I knew she wasn't even giving it a chance.  I couldn't get it in at all, so how was she supposed to get used it it?  I bit the bullet and brought it with me to Dr. Kane's office with hopes he could put it in and help her understand that she needed it.  We got there and my inherent need to "over explain" everything kicked in.  When he asked me about how she was doing, I told him she was good, that all her teachers felt that her vision hasn't changed at all and that we didn't feel the risk of her losing the vision she had now wasn't worth it..blah blah blah. I went on to say how awful I felt for not making more of an effort to get Emily to wear the lens, but it wasn't something I could comfortably do by myself.  Then I slunk into the back in my chair and held my breath. It occurred to me that the cataract may have gotten bigger since we saw Zaidman in August and that I may have just stuck my foot in my mouth.

After all was said and done, her eye pressure was good and Dr. Kane didn't feel the cataract had progressed much, if at all.  We discussed the surgery again and his thoughts on if/when it needed to be done, that he would take a "don't rock the boat" approach to the thought of putting a lens implant in.  It would be a longer more invasive procedure and anything more than what was necessary was an added risk to both the health of the cornea and the function of the Trabecolectomy that was maintaining her eye pressure.  I personally believe he was also being cautious because too many procedures in the left eye, allowed for the eye to become weak and susceptible to further complications...in other words...it contributed to the detachment of her retina.  For now, I felt the surgery remains unnecessary and we would continue to monitor the cataract.

Next, the prosthetic shell..
I told Emily before we got there that he was going to put it in, she knew it was coming. Somehow he was able to get it in before she realized what he was doing, but was SCREAMING once it was in. She kept saying it hurt and refused to open her eye.  While I was trying to calm her down, and not cry myself, we talked about leaving it in for a couple days so she can get used to it.  Then take it out for a day and try putting it back in for another couple days.  I agreed and I slowly was able to put her coat on and make our way to the car.  She had calmed down a bit, but refused to open her eye.  I distracted her by talking about where we could go to lunch and by the time we got to the car, she had opened her eye and forgot all about the lens being in.  That's all it took?? Having the doctor put it in and promise her Taco Bell??? Now the Mom guilt was really setting in...I procrastinated for over a year to get her to finally keep the lens in, why did I wait so long to have a doctor help?  I knew the answer...and it still hurts to think about that moment of self realization.  I was stressing about the daily struggles of  having to put the lens in and take it out everyday, it seemed tedious and emotionally draining, The responsibility of making sure she wore it everyday fell completely on my shoulders. I was also in some state of denial.  I knew that this clear lens was only the first step. That the end result would be a true prosthetic eye that was painted to match her seeing eye.  It would be a fake eye, one that she would wear for the rest of her life.  If she needed a fake eye, it meant she really was blind...and I realized that I hadn't really come to terms with that on an emotional level yet.  This was a reality check for me, one that I could no longer ignore.

The next day or so Emily did great with the lens.  She slept with it in for 2 nights and then I took it out to clean it and give her eye a rest.  Putting it back in was not easy...but it was better than any other time I tried.  We left it in for another couple of days and continued to do this for a couple weeks.  Pretty soon she was wearing it more than she wasn't wearing it...a HUGE victory for her and for me.  The next step was to give her time to get used to it and then make sure it was the right size and shape that the painted one would be.  Baby steps...and more tacos I guess.