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.

The Apology

Recently, during a conversation with a really special friend, we somehow started talking about the power of an apology; not only for the one who deserves it but also the one who gives it. I felt really bad about all of those little moments when I took it for granted that he could easily see things when in reality it was difficult. The next morning on the ride to school, I started the conversation off with, “Remember the time .. When you were younger and ….…the conversation continued……and it ended with …. Having a vision impairment must be hard, I just wanted you  know that I am sorry for not understanding things when you were younger. I just didn’t know. I told him how proud I am of him, not about accomplishments, but of him, and person he has become. I am very blessed to have you as my son. He took his knuckle, tucked it under his glasses, wiped a tear and told me that I was a pretty good, “Mom.”

This is all he neds-http://youtu.be/2Vbg2dpX-EY

The camafloughing comforter

I feel so bad because I remember fussing at him when he said he couldn’t find his jeans that I placed on his bed. I yelled up the stairs to him. “It’s on your bed! I just put them up there.” Annoyed that I had to get up and show him when I knew if he just ‘looked’ he would see them. Standing near his bed he said, “Mom, they’re not here…… see.” I approached his bed and as plain as day his folded pair of jeans lay on his bed.Some would say, don’t assume it is an automatic vision issue, after all. Name one kid that hasn’t told their mother. “I don’t know where it is or I can’t see it or I could t find it….only to have it pointed out it is right in front of them.... …

Finding the "IT"

 That same day I drove home like hundreds of times and it wasn’t until I was off the interstate when I realized I had no recollection of the drive. I was very distracted and had overwhelming feeling that I was looking for something. In a desperate search, becoming more anxious, I pulled into the shopping center. A Heaven and Earth store was spotted, a sign of relief came over me, yes, in this store I will surely find a book or something specific to what I was going through, I will find “it”. Maybe a book of inspiration that will tell me everything was going to be ok and his disorder will be instantly healed. It will be book that will give me instructions’ on what to do. I searched the isle scanning up and down, left to right, not missing a single item on the shelves, walls, or floors. I came across all sorts books- parenting, The Left Behind Series, Power of a Praying Wife, further down stories of hope dealing with cancer, marriage counseling; overcoming abuse, addictions, over eating, anorexia, depression, the loss of a loved one-parent, pet and so on. I searched just looking, still not truly knowing what I was looking for….came across jewelry, rosary beads, and crosses. Then picture frames, painting and sculptures, picture of Jesus playing with the children, turning to the next aisle, t-shirts with Bible verses such as John 3:16 below on the bookshelf, veggie tales, bible man action figures, Noah Arc, half an isle down gifts for ministers and wedding invitations, something for everyone…..for every situation, but mine. I felt out of place, embarrassed almost; since I thought for sure, even over confident that I would find it. Although I didn’t know what “it” was? was afraid and scared, I felt the emotions that I was pushing down deep inside me wanting to burst, I saw two women happily browsing giggle and chatting while reading cards. I wanted to scream at them...how can you be happy? My son is losing his….I gulped pushing the feeling and words in my head down further into my soul. The physical pressure on my chest as if a huge hand was pressing on my breast bone and rib cage, churning, twisting, and squeezing my heart. It was beyond anything I had ever experienced. I couldn’t breathe, suffocating. I fought back the tears. I held it in pushed it down deep in my soul. I had to get out. Finally, I was back in the van, my hands trembling. Thinking I just have to get home, tunneling my thoughts “just have to get home, just have to get home.” Finally, I’m in the neighborhood pulling around the corner…thinking I made it. Then I saw my house.oh no…the reality of having to go in and be the strong mom surfaced. How can I go inside and say, "Hi how was your day?” Prepare dinner as if all was ok when I knew nothing would ever be ok, be the way it was suppose to be, the way I planned and envisioned the future. How can I go in and be confident pretending it was just an ordinary day when I was at the verge of having an emotional explosion. Over and over, I tried to change my thought pattern and get myself together, rationalize things. Ok, I’m the mom, it’s not about me, my composure starting to emerge, it’s about him, and I have to be strong for him. Within in instance I became weak again, I felt my lips start to quiver, I have got to pull myself together, my hands shaking, now my legs, it was more hand just an emotional barrier, I was fighting within and against it. My own body was feeling it to; I was trying to hold back a freight train of tears. Why, why….I said aloud. This isn’t supposed to happen…give me the burden. Not him, what did he do? I know God; I know I have done so many things wrong….now I thought my son was being punished for all of the mistakes I've done... I’m sorry, I’m sorry, I’m so sorry. Please give it to me, not my son! I pleaded…Why, why, he’s my baby, I banged on the steering wheel...why...please God no, not him, not my son. Sobbing and gasping for air, crying so hard I was moaning, my eyes swollen shut and tears still streaming down my face, my nose so clogged and congested, my head pounding, I started to feel like I was going to throw up, I was getting light head…again, why, not my son..Suddenly, as I was shouting it louder...a strange feeling came over me… I was able to take a deep breath ….children of God...I am a child of God...My son is a child of God...we are all children of God. I felt a sense of calmness, at that moment, I realized that I had always believed that I trusted in God 100 percent but the truth was I hadn’t trusted him fully, I thought I had but realizing it was with conditional things and the things that I could control. This hurt was more than I could bear I was powerless to this; never ever did I feel so powerless, I said to God, “I get it, I get it". He belongs to you; you are God our father with that surrendered “my son” to him. I felt my hands loosen up from once was a tight clutch fist to the back of my hands resting on the wheel. My palms up as if I had something in them lifting it up for God to take. Ok God, I have to trust you, I will trust you, and I do trust you. I give you my faith and accept your will. I know I can do this with you lord. I asked for his help and to guide me. Another big breath, this one of relief, I had wanted to deal and take care of it all on my own. I felt it was my responsibly and provide for his every need. Another big breath, the tug a war was over. I now knew I had to move forward and live each day with all of the blessing I have been given. The pity I felt for myself and for him was gone…I knew at that moment. This disorder is above and beyond what comprehension that I have. God has a plan…I had to just live life faithfully and realize the “why” is not of importance and may never be answered. I wiped my face and took another deep breath, got out of the van with a new sense of contentment and peace. Everything is going to be ok I said to myself...it’s going to be ok, no matter what happens, it’s going to be ok.

Music/Video "Can anyone hear her" by Casting Crowns"
Amazing Grace-Chains are Broken by Chris Tomlin

Baby Blue

A day or two after he was born, I remember the nurse bringing him to me all swaddled up. I held my arms out with extreme joy as she gently placed him in my arms. Just the short time he was gone seemed like part of me was missing, still getting used to that fact he is no longer wiggling around in my belly. I smiled contently at him, cuddling his body upright on my chest, tilting my neck looking down at him in awe. I could still hear the nurse giving me the routine pass down that she probably has done day in and day out. Your son did real well this morning, baby looks good, and weight is good, heart rate, blood pressure, and so on…. hearing and vision test done, all normal. You may want to keep him near the window to get some light; a little jaundice…distracted while she was telling me but knew what she was saying. I suddenly perked up and looked away from his precious face and asked, what about his eyes, I don’t know why I had asked that, she said all is normal. “Are you sure?” I asked again. She restated everything she had just told me to reaffirm that all test came back clear and the pediatrician had been in to see him. Why I had asked about his eyes, I had no idea. After all he had my daddy’s blue eyes, every time I looked at him; I just saw those baby blue eyes.

A Different View

 Ever heard the song, "Shine Jesus Shine?" I've heard it many times, it was on that particular sunny spring day when I was sitting in my sky blue van getting ready to leave from a long day at work. When that song, of all songs, came on, normally I would sing along feeling uplifted, free, and inspired....but not this time, the extreme opposite. The lyrics proceeded to tell a story..I became sarcastic and responding in my mind to the words. "Shine your light on me.." Thinking, ya, right, a thick, dense, cold, dark cloud had just entered my world days earlier when a few simple words were spoken to me. I knew at that moment the definition of light had forever changed.