Thursday, October 2, 2014

Keeping Up With Jimmy

Hi friends, I am happy to start a several post series about being a mother of a child who it totally blind. You already have already met the mom. Thanks to Kristi and her amazing son Jimmy* for again guest blogging for me. I have recently done some parent conferences and I feel that hearing "the word" right from a parent's mouth is more effective than hearing it from mine. I have empathy but Kristi has the true experience. A lot of times we hear from parents that have a child with multiple impairments. There is a great community out there for parents who have kids that are MIVI and I have personally learned a lot from them. But what about these typical kids who are in the general education class? Kristi is here for a bit on The Bee to help shed some perspective on her crazy adventure of keeping up with her son Jimmy.

Hello Blogging World, my name is Kristi and I am a parent of a VERY active almost 10 yr old blind child. Jimmy was born sighted but at 2yrs 2months Jimmy was diagnosed with bi-lateral Retinoblastoma. A childhood cancer of the Retina. At the time his left eye was just about 100% tumor and his right eye had 3 tumors in it the biggest being in the 6 o’clock position. At this point the doctors told me that he was blind in the left eye because he also had a detached retina. Through the course of a few years Jimmy had gone through external beam radiation, cryo and laser treatments, and a brand new procedure called Inter-Arterial Chemotherapy (since then the name has been changed to ophthalmic artery chemosurgery) basically the doctors took the smallest catheter they could find, feed it from Jimmy’s groin all the way to the eye artery and fed chemo directly into the eye artery; retina re-attachment surgery, and cataract removal. During all of this Jimmy would have check-ups with his doctors starting at every 3 weeks and we are now at the point that he only sees his doctors 2 times a year with an annual MRI. During the duration of these procedures Jimmy lost more and more vision and is currently left with only slight light perception. I know a lot people cringe at everything Jimmy has been through but as we have lived through it I can understand. Personally I never cringed, the moment the doctors told me the cancer had not left the eye orbit (eyeball) I knew deep down in my gut that my son was going to be fine and we would work through any of the side effects he might endure. When the day finally came that I was told he wouldn’t regain his vision unless there was a miraculous breakthrough in full eye transplants I knew what needed to happen. I chose, to some, the road less traveled and made the decision to treat my son like a normal child with very little restrictions. I am very lucky because all that Jimmy has to deal with is his blindness; he has nothing else against him. To date Jimmy has participated in weekend and weeklong sleepover camps, learned to ride a two wheel bike, skateboards, scooters, waterskies (religiously), runs to the neighbor’s house to play with his best friend, and if I let him walk around the block. Jimmy travels with a cane except at home and places he visits on a regular basis, I don’t know if this is the right way to do it but for us it works and allows Jimmy to feel a little more normal than always having his cane. Don’t get me wrong it can be frustrating at times to remember that my son is even blind. I’ll talk to him like he is sighted and he looks at me and is like “uhhh mom? I can’t see remember?” I hope through this I can shed some light on how we as a family have gotten to the point we are and how I hope to navigate the next few years as Jimmy enters his teenage years. Stay tuned as we try “keeping up with Jimmy”.

*I wrote that Jimmy is amazing. I mean that but I also want you to know that it has nothing to do with his blindness. Jimmy is just a cool kid, period. Everyone who meets him loves being around him because of who he is. The blindness? Well, that's just icing on the cake--he is a pretty cool blind kid I have to say.

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