Our trip to Minneapolis was a trip of much less anxiety. There was no anethesia risk or surgery recovery to worry me or my husband…just some tickets to Sea Life, the Nickelodeon land carousel and a eye surgery follow up appointment in the afternoon. We woke and started our day with some Perkins in Bloomington. I’m not sure about you – - but most of us do best when we follow our routine. (Whether you are away from home or not). Children with special needs especially do best when you follow their routine (well that’s children in general I think) but try to reason with a child with special needs who doesn’t understand why…all he thinks is – - it’s morning, it’s my breakfast time and I’m supposed to watch Elmo like I do at the counter while momma makes her breakfast. Yes – - that’s me – I’m that mom that lets my little boy watch cartoons in the morning…we all have our mothering styles, this is mine. C-Man gets to watch his cartoons on this little small portable DVD player we bring with us on long trips in the car. Since we had it with, we stuck to his routine (and we thought albeit this will make for a peaceful breakfast) and brought the little TV in so C-Man could have his milkie, mammoth muffin and his Elmo.
Four cups of judgemental eyes later, we found ourselves being watched by an elderly couple. The only other people on that half of the restaurant, mind you, it was Monday. I’m sure their conversation talked of the days when they were young and they didn’t even have television and how our son will probably become obsese because he is watching Elmo.
I always wished I was one of those people that never even looked over – never even noticed these judgemental eyes…but that’s not me – that’s my husband, he can do that. I also wished that if I couldn’t be that person, that maybe I could be that person that just noticed but never did anything – - but that’s not me either. Instead – I caught their glare and I challenged it. Maybe that’s not what’s right – - but it’s what I did. How else? Perhaps I should have wandered over and sat down and explained to them for 15 minutes what our story is. But instead, I’d prefer they leave our little family in peace for our breakfast, for we have an exciting day planned ahead of us. After all, breakfast is the most important meal of the day.
C-Man munched on muffin bits, sipped his milk and watched his Elmo – Paul and I drank coffee and visited, then I read my book that I’ve been reading for a couple weeks now, “The Other Boleyn Girl”. It’s a great book so far and I highly recommend it. Thanks to my friend Amanda for borrowing it to me.
We went to the MOA and visited the fish of Sea Life. It was more than I expected it to be. Obviously the tunnel was the best part – butthe jellyfish were pretty intriguing to look at. Bewildered is probably the best word I could use to describe C-Man’s reaction. He was neither happy nor scared about the fish – just seemed intrigued. He looked with wide and eyes and he wanted to run right through the entire thing. My husband kept slowing him down, “We have to look and take it all in buddy” he would say. It ends with a walk in the Minnesota woods (fake Minnesota woods) but woods all the same that teach about the trees we have here and it reminded me of spring. So I’m delighted that it seems it’s finally here – although the hustle and bustle of the flood preparations come with that.
We finished our mall time at the carousel. It wasn’t our intention to ride the carousel today – but when we arrived to the mall early we walked through Nickelodeon land just to waste time waiting for Sea Life to open. When C-Man spotted the carousel he let go of our hands and ran as fast as he could up the the gate and even tried to open it. When we grabbed his hand to walk past, we said, “It’s closed buddy, let’s go.” He kicked and stammered and cried for a few minutes until daddy picked him up and carried him all the way out. It was not our intention to give in to this little tantrum – but after Sea Life was over and he was a good boy – we surprised him with a ride on the carousel. He rode twice and seemed very happy with his two rides.
The drive downtown was much quicker in the afternoon than it ever is in the morning during rush hour. We went to our appointment early and miraculously got in to see the Doctor early. To our surprise, his eyes are not perfectly aligned after the surgery. The doctor described it as, “Just a liiiittle bit off.” He said, “I’m not even sure, it’s worth doing surgery again on.” So we need to see what C-Man decides to do with his eyes – we need to watch it. If you are wondering why I say, “What C-Man will do…” is because his brain is what is telling his eyes to cross, not the eyes themselves. So since we cannot do a brain surgery (not that they would know what to do when they got in there with missing DNA) they move the muscles that attach the eye to trick the brain into aligning them. He had this procedure done and since then – we really haven’t noticed any crossing. Maybe we’re looking for something substantial like before, where now, it’s very small. He’ll be checked in town in 4 mo. for his vision and in 8 mo again back in the cities to check his alignment. We’ll decide at that time if he should have the surgery again.
Since the surgery – he has progressed in PT and OT. He can balance better and catch things better. I can’t imagine what it must have been like to see. Sometimes, I wonder what a day in his life would be like. The everyday tasks we find so simple, the loud noises our ears can handle, the fascination in rocks, the constant efforts to say words, but not have them all understood. I think I could understand the frustrations and stammering fits at times. He is 36 inches tall of love in our hearts, a smile that guarantees our love.
On a final note – did you catch the CMA’s on Sunday? Darius Rucker performed with 20 Williams Syndrome people. Check it out here. It brought tears to my eyes. Such love – - Music from the heart… I will probably forever love Darius for this.
