Update on your eyes...

Today was a tough day for us. We re-visited the doctor that originally saw you when you were six months old, almost a year and a half ago, for the potential Ptosis surgery (droopy eyelids)...the good news is, he was so impressed with you and your physical growth...the bad news is, the odds for surgery are extremely stacked against you. He basically told us that there are easy cases, mild, moderate, severe, and COMPLEX...he told us that you are the MOST COMPLEX he has ever seen in his career...so, our choices are: 1) leave your eye lids droopy, and hope that you continue to grow and develop and get past the hurtles that the droopy eyelids present for you, or 2) go for the surgery and be left with a host of other problems including: you may never be able to close your eyes again, we will have to use eye drops several times per day due to you not being able to blink or close your eyes properly, infection from the surgery which could lead to removal of the eyeballs, etc...we are devastated tonight to say the least...why is everything so difficult for you? Why can't one thing just be easy and actually work? It is the same thing we heard when we went for your consult for your cleft palate repair at the beginning of summer...let's wait and see, let's wait, let's wait, let's wait...As a parent, we always want to "fix" boo-boos, make life the BEST for our children, but with you, it seems like we are fighting and fighting and fighting, and not making much progress, leaving us feeling so desperate and helpless...almost defeated. I wish so badly tonight that you could talk and tell us what you think we should do, what you would want for us to do for you...and you continue to smile at me, laugh with me, hum your songs, and play as if life is the best...and only you know these things as so many of us miss each and every day. Your Coats' Disease in your Right eye is not doing well either, leaving us even more devastated at the possibility for one more round of surgery to seal the leaks in the vessels behind the eyeball and see what happens...your retina is at high risk of detachment at any point now, so again we wait, wait and wait...we are using prayer and hope that something will turn out right for you...I have to admit though, despite your visual delays, you are so SMART! You are consistently signing "more," "all done," and sometimes even "stop." You have picked up on sign language quicker than I thought you would, although you can be a typical two year old at times and only use it when you want to and feel like using it!!! We love you so much, Tayvie-doo, and hope we are doing right for you...we worry that sometimes our best is just not enough...I can remember all too well, the day after you were born, a Developmental Specialist came to see you and told your father, "Do not waste time trying to "fix" the things that are wrong with him. Love him as he is and let his development take its course as it will." I remember how mad your father was and how hurt we both were at the thought of someone telling us that, the day after you were born...but tonight I wonder how much this extremely wise man knew, about your development and the tough battles we would have ahead of us...tonight I will try not to feel so defeated, but will try to feel blessed by having you in our lives to love, as you are...