It was a pretty large class with lots of information. Of course much of the "basics" we already knew like how the syndrome is diagnosed, what causes it, and the different characteristics & types. There were also things we didn't know or didn't realize were important to know.
One of the biggest things I got out of the training was the process of explaining Usher Syndrome to Brody as he grew and started to ask questions. From what I understand, usually people go about it one of two ways. Either they refuse to talk about certain aspects of the Syndrome to "protect" their child or they give too much information to their child and give them a false sense of hopelessness.
The following quote our instructor used pretty much sums up how I think I will talk to Brody.
"We talk about [Usher Syndrome] a little bit at a time, very often."
The other point of emphasis we got from the training is that you never tell your child that they are going blind. Usher Syndrome involves a hearing loss and a vision disease called Retinitis Pigmentosa. RP, like many other diseases, spreads at different rates, level, degrees, etc. from person to person. While it is true that Brody may become blind from the disease, there is a greater possibility that he will not have complete vision loss or that it will take longer for his vision to deteriorate.
There was also a speaker; an older gentlemen who has Usher Syndrome Type 1 (same as Brody). He talked about his struggles and triumphs growing up with Usher's.
Overall, I'm glad we went. Katie and I are trying to be strong advocates for Brody. The more we know the ins & outs of Usher Syndrome, the better we can be that for him. Our next stop will be Portland, OR in July. The Coalition for Usher Syndrome Research is having their 5th annual Usher Syndrome Family Conference. Hopefully we will meet some great people and learn even more information.
So after the training, we drove straight from Columbus toward South Bend, IN to enjoy the 84th annual Blue-Gold spring football game at Notre Dame!
We awoke bright and early on Saturday morning ready to head from our hotel in Goshen, IN to South Bend. The weather was typical northern Indiana. The thermostat was pushing 35 degrees, yet it was a toasty 75 degrees a few days before (how does that happen?). So much for a "spring" game...
The Fromholt family has never let weather stop us on our path to Irish football! We've endured snow, rain, cold and hail (yes, even hail) to see our beloved Fighting Irish. I guess Brody didn't get that memo because he was NOT a big fan of the tailgate before the game. I'm sure missing his morning nap and being in an unfamiliar place didn't help things. Luckily, Katie and I were able to tag-team to keep him occupied & happy while still enjoying the tailgate with the rest of the family.
As it approached kickoff, we figured it was time to head in to the stadium to get a seat and watch the action. Katie strapped Brody into a baby carrier and off we went into the stadium. We quickly found seats and started to watch the "game". Brody wasn't very amused and fell asleep for about half of the game.
At the conclusion of the game, they allowed all Notre Dame Kids club members to line up to enter the tunnel and walk on the field! I was beyond excited! I had always dreamed of walking through that tunnel. Brody and I lined up and waited...and waited. Did I mention that Brody is getting heavy to carry around?! Anyway, we saw Brady Quinn drive-by on a golf cart and some random band members, players, etc. Pretty soon everyone had cleared out and they started to let the Kids club members on the field. When we entered the gate, I could feel the goosebumps on my neck as I walked toward the tunnel. Some of the greatest football players ever had walked down this tunnel! As we arrived to the field, I could see Katie and the rest of my family eager to take pictures and see Brody. We looked up and posed for pictures. Uncle Josh insisted that we touch the grass. So I took Brody over to the field and plopped him down so that he could grab the grass. My mom then saw the Leprechaun and shouted that we HAD to get a picture! Of course we waited and got our picture taken. After soaking it all in for a couple more minutes, we headed back up the tunnel and out the gate.
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This was a great trip and I was glad that Brody was able to see Notre Dame. He may grow up to like a different school or not even college football, but at least I can cherish moments like this :)
