Guilt verses Hope

I have prayed and prayed for healing, I have gone through the emotional steps of mourning of his life without vision……He still has so much compared to those who have completely blind and so little to those who are sighted.  The low vision stage is yet a blessing and yet the reality sets in as things become more difficult and he continues to adjust to the deterioration of rods and cones in his retina.  With or without vision he can do so many wonderful things…he can share his testimony of how he knows this is part of God’s plan for him and he has no anger, only trust.  Today he is at camp with his youth group doing all of the fun things teenagers should be doing including - talking about next summer’s plans to get ready for college. I am so proud and so blessed that his attitude and faith keeps him grounded and when he is unable to do something he finds a way….

Even with so many positive things that I am so thankful for is why I want more.   I feel that I am and should be more humble and thankful and content, satisfied with all that he does have. 

I come across special needs children every day at work.  I imagine what life must be like for them and their families.  I think of the child strapped in a harness of sorts with legs that did not form properly and they cannot walk, their arms are mangled and hands turned in and who cannot hold a grip or something as easy has to reach out and hold their mother’s hand.  The ones who are my son’s age and has assistants feeding them pudding.  I ask myself, how can I even think or be sorrow for my own, when these are the true children with special needs.  I wonder what they think. What they feel?  Do they hurt? What emotions do they express? Can they express?  I wonder what life is like for their families when they are not in school.   When I sit down for dinner with my husband and two boys eating dinner and having conversation, I wonder what dinner time is like for a child and their family and how difficult it must be just to get the dinner on the table.

One of the worst feelings I have is to want more for him when what he has would be the biggest miracle and blessing more others.  I feel guilty.  

Deep Within

August 2005

    Tyler participated in a research study at Strong Memorial Hospital in New York to help doctors learn more about the rare eye disease that he has.  Through this process, we learned that Tyler could possible pioneer a break through with genetic testing/therapy, as well as, researchers studying more about the retina where this disease resides.

Dear family and friends,

 As most of you already know, Tyler has had trouble seeing and his  glasses haven't been correcting his vision.  In December, an  ophthalmologist began a series of tests, exams, ordered a trip to VCU in Richmond for further tests, and eventually referred Tyler to a retina  specialist in order to interpret the results of some of those tests, which has now lead us to finally finding out what was going on with Tyler's vision.  He has been diagnosed with an eye disease, genetically born with, Rod Cone Dystrophy, in the family of Retinitis Pigmentosa, which  will eventually lead to blindness.

                                                                                                                               January 4, 2005

To whom it may concern:

Tyler was seen by an ophthalmologist today concerning his vision problems.  We still do not know why Tyler is having such difficulty with his vision or what the exact problem is; what we do know is that his lenses are correct for him.  However, Tyler still isn’t seeing well and his vision should be corrected with his current prescription glasses.  Unfortunately, he still is straining with the use of his glasses.

About Face

It was that fall that my gut was burning; I just knew something was not right.  It was more than just getting a new pair of goggles or glasses, cleaning the lens, or whatever excuse or reason why.  In December, I took him to the optometrist, like time and time again, a full exam:  eyes dilated, read chart,  left with prescription.  Before leaving and in a questioning tone, I said,” So this should help him?”  The doctor said,  “This prescription should give him perfect 20/20 vision."  We were leaving, approaching the exit door, when I turned around and said,  "Let's go back." This time with a march pace and determination, I knew they needed to be checked.  “I’m so sorry but I need for you to test him but this time with the sample lens of his prescription, just to make sure.”  The doctor did as I requested and I could tell she was a bit annoyed as other patients were waiting.  The young boy climbed up and sat back in the chair only to read the charts which seemed like the millionth time.  Instead of 1 or 2, which is better, adjust and adjust, 1 or 2 ….The lenses were presets to what was just prescribe,  “Ok now read the line”,  the doctor had a puzzled look after the letters were read  “Let’s try the next line” and so on.. with each question and his response, the doctor looked more confused. 

Goggles

He had worn glasses since Kindergarten.  We would go about twice a year for an exam and get new glasses for the simple fact he outgrew the frames rather quickly with his ongoing growth spurts; with each new prescription the doctor would tell me his prescription hasn’t changed and away we went.   He still had trouble with distance viewing.  I would bring him back to the optometrist.  They’d do a recheck, and tell me,”This is the correct prescription for him.”  Just give him time to adjust to them, it may be a matter of him getting used to the different frames.  Still, days turned into weeks, and although he was successful in school, playing on the city soccer league, scouting, and bike riding.  His favorite that summer was street hockey in our court and shooting basketball with the new hoop set that past May for his birthday. The glasses did help but he was taking them off while playing contact sports.  Again, off to the eye doctor to get script for sports goggles, he wore them with every soccer practice and game, a few times when riding his bike.  All was good now…...he just needed the sports goggles.