• The boys and I

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    I’m 44, married and live in a sewerless small town on the central coast of California. I am an Inflammatory Breast Cancer survivor. My passions are reading, knowledge, shopping and photography – in varying order depending upon my mood. Though I’ve always wanted to be really good at something, I find that I’m just pretty good at most things. I live with my husband, Daddy-O, and our sons, Ben and Danny who are 10 and 5. Ben has ADHD and enough natural energy to power the Pacific Time Zone… and he’s not afraid to use it. Danny has Norries – a rare genetic disease causing him to be born blind. It’s a crazy, hectic life but I can’t complain any more than usual.
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The Bombs Bursting in Air…

Five years ago this week we found out that Danny would never see.  He was 9 weeks old.  I can remember the heartbreak and trauma like it was yesterday.  Here is an excerpt from the email we sent to our friends and family that day.

We discovered Daniel’s eye was very clouded over on Memorial Day.  We suspected a cataract.  It took us two weeks to get into the Pediatric Ophthalmologist – not that getting in sooner would have made a difference anyway.  She (the Dr.) took one look at his eyes & made an appointment for the next day at Children’s Hospital Los Angeles.  Things happened very fast after that. 

Wednesday found us at CHLA seeing Dr. Song who specializes in cataracts & glaucoma.  After about 5 minutes and a quickie ultrasound on his eyes he said he had tumors behind both eyes & casually threw out the words Retinal Blastoma.  Know that I about checked out right then & there.  Glaucoma & cataracts are one thing… cancer is another entirely.    Dr. Song ran down the hall & grabbed Dr. Murphree who specializes in  optical tumors.  Dr. Murphree and another doc plus a resident all spent a bit of time doing an u/s on his eyes & decided that they needed to have a CT Scan & do an Evaluation Under Anesthesia (EUA) the next day.  He had bilateral detached retinas & maybe tumors but he wasn’t sure. 

So, fast forward to the EUA.  Thankfully, in the middle of the procedure the social worker came out to ask more questions to see if this was caused by his prematurity and let us know it WAS NOT cancer.  Insert a universe-sized sigh of relief here.  Unfortunately he did have glaucoma, she says.  Back to the OR.  

So, here is the official diagnosis/prognosis.  Daniel is blind.  Can you hear our hearts breaking?  He has Norrie Disease, narrow-angle glaucoma & bilateral detached retinas.  He will never be able to see.  Norries also carries with it about a 50% chance that he will lose his hearing at some point & be developmentally disabled.  That is yet to be seen.  There is really nothing they can do to restore his vision.  They can, however, relieve some of the pressure from the glaucoma.  So, on Friday, June 24th we will go back to CHLA so they can remove the lens & scar tissue from his rt eye.    They will do the left eye later on.    Obviously our lives have changed drastically overnight.  We’re still reeling from the news.  We appreciate your prayers for strength & good care while we go thru the surgeries.  We know God has a special plan in mind for our little man. 

In rereading this email I’m struck by two things: my immersion in the facts of his situation to forestall the pain heading my way (a coping technique I still lean on heavily) and our faith in God’s master plan. We have come a long, long way since that day.  We’ve discovered that the developmental delays are overstated but the hearing loss associated with Norrie affects closer to 100% of the boys.  The Lord giveth and the Lord taketh away. 

Life with Danny is always full of surprises!  I took the boys to watch our local SLO Blues play baseball on Saturday night.  It was fireworks night.  I had Danny sitting on my lap for the show.  It was awesome!  Easily as brilliant as any 4th of July fireworks display I’ve ever seen only better because it was so very close.  I could feel the booming reverberate in Danny’s chest as I held him!  After the show he talked about the fireworks non-stop as he usually does when something excites him.  One of his comments, however, stopped me cold.  “What was the big lights and the big booms?  Was it the fireworks?”

“Big lights?”  What?! 

“Danny,” I asked him, “could you see the lights?”

I never got a straight answer from him.  He was way to absorbed in his own questions to answer any of mine.  But he does have some light perception so it’s not a big stretch to think he actually saw the bright explosions of light in the fireworks show.  Can you imagine how beyond thrilled I am?  Can you imagine what a pure joy it is to think that there is something in the world that my sightless son can see and that particular something just happens to be so spectacular?  To think he may actually be able to understand on some level the “rocket’s red glare” line from the National Anthem (his favorite song).  Oh, be still my heart!!!

I’m just saying that life is good!  I am so lucky to have a wonderfully happy, healthy 5 year old with more gifts than disabilities.  I wouldn’t trade him for the world… but feel free to make an offer anyway.  Ha!  I’m always open to negotiation!


6 Responses

  1. Aha… you dropped a quick comment about this yesterday, but I got sidetracked by our wide-ranging, “how fast can we catch up on so many years” conversation and forgot to ask you about it until I was halfway back home. What a lovely thought – and did you tell him that lots of fireworks are RED?? 🙂

  2. Stella, your posts are therapy for me. Thank you for the inspiration. Let that light shine!

    Best wishes to you and your guys for a great summer, complete with fireworks and many other special experiences!

    Joan in PA

  3. So flippin’ awesome, Stella. I’d be pretty excited, too!

  4. This is amazing! I’m sorry I missed it before, but what a neat experience!

    I’ve been following you on FB — so glad you did the walk!

  5. Wow Stella, this is the first time I read that e-mail that you sent. It actually sent tingles up my spine and reminded me of our situation (that wasn’t that long ago). It was absolutely identical down to the air of excitement that the doctors shared amongst themselves. I was also told cataracts 1st (he was only 5 days old)…On the 7th day the pediatric ophthalmologist had her entire office in an uproar to get me an appointment at hopkins right away. At this point I was told that my little brand new baby potentially had life threatening cancer…and if you didn’t die you surely went through hell to get better. Well for simple cataracts I went to that appointment alone. I remember going outside to call my husband…Before I called him I had a talk with God..one of many over the past year and a half. I told God that I could handle anything, but please don’t take my little boy. And you know what…He didn’t. The next year was hell for our family and especially for Wyatt. He underwent at least 6 surgeries of varying degrees. All were agony for me just watching him suffer. His first laser surgery under anesthesia was when he was 10 days old. I remember having to stay overnight at hopkins becuase he was so little. They have to observe babies after anesthesia. We had a crib and a chair that was it. No space..not even really a curtain. The room was filled with babies that had just had surgery. It was awful because sitting in the middle of all these people trying to breast feed just wasn’t getting it. I could not make my milk work…so hence the reason we had to stop breastfeeding. He has had scleral buckles, gas bubbles, reattachements, etc. etc.etc. The last surgery was in July of 2010. After that surgery I made a decision which I will never second guess and that was to stop the madness. I was so worried that the next surgery would be the one that would break his spirit. And boy he has a hell of a spirit. Try keeping a 10 month old on his stomach for 2 weeks or better…oh my. I am surprised we survived. But I didn’t go back after that surgery for a few months. I finally went back in September. I was a little scared because I thought that the doctor would think I was horrible for not continuing to trudge on for the merest possibility of light perception. I still don’t know if he has that (sometimes I think he does). But now we are just trudging along trying to do the best we can to give Wyatt all of the best opportunities that he can have. It is hard because my hubby is one of the old schoolers who believes that blindness is a fate worse than death…he even told me that soon after hearing of Wyatt’s blindness he thought that Wyatt would be better off if he weren’t here. It has taken over a year for him to start realizing that Wyatt is amazing and wonderful and touching to the heart and we are so blessed and lucky to have him in our lives. He humbles us all on a daily basis.

    My take on blindness….people who are blind don’t judge people for what is ont he exterior or on the material things or how big there chest is or how fat the butt looks etc,etc, the feel life in a different way but what they feel is genuine and true. I had a doc tell me once, that when Wyatt smiles you know he means it because he can’t see someone else smile and mimick it. It truly means he is a happy. Wyatt smiles all the time. Wow how much therapy was that for me…sorry…deletedeletedelete.

    • When Danny was a toddler a friend of mine told me that there was sort of a lot of pressure for Danny to like her. “He judges people by a different measuring stick,” she said. It’s totally true. Of course, I always joke about ending up with some fat, ugly daughter-in-law with a great personality! Ha!

      I think infancy with a blind child is harder than any other age. There’s little feed back to know if you’re getting through to them. And they don’t have any language skills. Danny was particularly clingy with me so I had little down time. You’re coming in to the real glory days with Wyatt right now. Once they can talk and communicate with you the whole world and their personalities open up.

      I understand some of how your husband feels. There were many dark days where I could only see what Danny never would. I just couldn’t imagine a blind life. Now it’s familiar. Normal, even. But I still see the amazement on others’ faces when they watch him go about his life as if there’s nothing wrong with him. Wyatt will show you all the way. Just don’t coddle him too much. He can do anything and everything that other kids can do…. and he should.

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