Processing & Challenges

glassesBen was less than a year old when they told us he couldn’t see well and needed glasses. He had a laser surgery on his eyes in the NICU when he was just a couple months old because of the eye condition (ROP) which can cause blindness if untreated. A pediatric ophthalmologist and retinal specialist were both seeing him and did follow up after we were discharged. When they told us he needed glasses I argued with them for quite awhile. I insisted Ben could see just fine – if I smiled at him across the room without saying a word he would smile back at me. He could see! They were very patient as they tried to explain to me the condition of his eyes and how he would probably experience more vision loss as he grew. I told them they were wrong. I asked how they could possibly determine whether a non-verbal (and rather non-compliant!) baby needed glasses. They spent hours explaining to me and answering my dozens of questions over the years that followed. He got glasses when he was a year old, just as he started to take steps. He broke 47 pairs in the first year. His record was breaking three sets in less than 24 hours – one set literally as we left the parking lot from getting the previous pair fixed. The glasses shop knew us well!

Every six months (or more often) we would take Ben in for another exam and they added a vision specialist to his therapy team and talked with us about braille and low vision and independence and treating him like the other kids, just modifying some expectations related to the vision limitations. They talked with us about protective eye gear and retinal detachment and through all of it even as I read and listened and researched and took notes I kept saying in my head (and sometimes to them) – NO. He’s not blind. He’s not going blind. We don’t need to learn braille because he can see. At three years of age he started sounding out words! By four he was reading! I felt vindicated – see, he can read! At one point I remember asking if he really needed the glasses at all since he was reading just fine, thank you very much. Continue reading “Processing & Challenges”

The Adventure Begins

We’ve been quiet here, I’m guessing no one is still following along but I needed a spot to document this wonderful and wild journey.

We’ve been pondering (a) where we should take Ben to see and experience things and (b) how to afford it. 🙂 He wants to see the Tardis in England, he’s a huge Dr. Who fan but alas, passports alone for a family are size will cost over $1000. (I still hope to make that happen someday!) It’s also tricky in that with my work I’m pretty much on call all the time – I have to plan vacations literally 9 to 10 months in advance and I’ve got babies on the schedule for next spring and summer already. I can’t just drop everything and go on a trip, but I don’t have more than week off call for months into 2014.

Stateside Ben’s big wish was to see Harry Potter world in Florida. (He also wants to see California, a waterfall, a mountain, snow, I should write up his whole list.) I did some preliminary research and saw tickets for the park would run our family about $1,000, it’s a 16+ hour drive (I am NOT that ambitious) and plane tickets were about $400 each (times 8!) Plus hotel, food, etc, etc. I felt so sad to tell him but I just didn’t see any way we could financially pull that off anytime soon. He said that’s okay – he would be happy with going to visit Legoland or Going Bonkers here in town. 🙂 He’s such a sweet kid… and he had no concept of the money involved, so we’ll be sure to get him to Legoland at some point, too!

We were running Kit to an eye exam and when we came home there was a letter on our door step. I wasn’t expecting anything so I opened it and read the letter – several times, because I couldn’t believe what I was reading and was in complete shock. I think I worried Kit when he saw me crying and saw the FedEx overnight package and wondered what bad news the letter held! Continue reading “The Adventure Begins”