our joy and hearts delight

Easter came and went by too quickly. We were blessed with the precense of family for an Easter brunch, followed by an Easter Egg Hunt outside, then we blew bubbles and watched the strong Minnesota wind take them far into the sky before they popped from a tree branch or the corner of the house.

The hustle and bustle quickly died down after the family left and we settled C-Man down for a nap. We both took advantage of this time as Paul and I slept in the living room…hearing nothing but Keeper scratch on the door so she could come in and nap, and the wind blowing against the window panes. Carter had fun with his cousins, as always. Prior to the Easter Egg Hunt, while we were cleaning up the dishes from our brunch, my husband played DJ and the kids danced in the living room. The room was bright and it was hard not to join in. C-Man’s method of dancing is jumping as high as he can and as often as he can. Then he stops and says, “UP!” to whomever is nearby. He doesn’t mind who, he likes everyone. And really, all they have to do is move to make him happy with the sound of the music.

With all the eating and all the dancing comes potty time. C-Man is learning to potty train. A big job for a little man like him. So far, he likes it, as he is rewarded with a single M&M after he washes his hands. Then he hops out of the bathroom and into the hall as if he is VERY proud of himself. I’m not sure who it’s harder on… the little boy who gets the treat when all is done or the momma that got peed on yesterday and poop on my pant leg. I changed three times yesterday. Yes… I have to do laundry tonight.

He is doing very well and loves to say “PeePee”, but I’m not yet sure he’s saying it because he wants the M&M or because he actually has to go. The world may never know, but either way we are very proud of him.

We did finally hear back from his Endocrinologist – it seems his hydro–something level is not high enough to treat. Which – is a good thing we believe. We go back and test his levels again in 3 months. Thank goodness for no infusions at this time.

He is such a blessing to our family on this Easter holiday. I couldn’t imagine hiding those sparkly eggs without his little chubby fingies finding them. He is our joy and hearts delight.

what just happened here?

I just may have met the meanest guy in Clay County today. Most of the time, I’m very understanding of people being in bad moods. But I’m afraid this guy was not having a bad day – I think this was just who Craig is. I know his name is Craig only because that’s what his shirt said.

My day was already busy and I rushed through most of it like most Tuesdays. I picked up Carter, ran home and picked up Keeper (our white fluffy Cavashon) and rushed to get to Keepers vetrinarian appointment. We got there just in time and in my excitement of successfully getting to the appointment on time, let my dog accidentally greet a very unfriendly man, once again named Craig.

He pushed her off him and I quickly tugged and appologized. She is only 10 lbs, but I get it…some people just don’t care for dogs at all, or ones that do not belong to them. (But I hate to state the obvious here, but you are in a vetrinarian office…typically you will find dogs here… I’m just saying).

I took a seat as far away from him as the tiny waiting room allowed. I held Keeper close on my lap to make sure she had no additional mishaps. It’s hard to say if she would have survived the second happy greeting.

Of course, my little C-Man, the happy boy he is, has a hard time not saying hi to people. There was one seat between us and Craig. Carter slipped over before I caught him, leaned his head down so he could see his face and squeaked out, “Hi!” Before I could reach him and appologize again, Craig said, “LEAVE ME ALONE!”

(insert my speechless draw dropping moment here)

I grabbed my sons arm and jerked him over as close to me as I could. Then I looked at him and said, “He has special needs, and YOU! You should be ashamed of yourself.”

It was at that moment the vet tech called Keeper back. She said to me, “Okay we’ll take Keeper now and you can stay here because it looks like you have your hands full with your son.” My reply, “No no, I’d rather be anywhere than in this waiting room. I’ll come back with you.”

It took less than a minute to have her stitches removed (Keeper got fixed) and we were on our way. The second we walked out the door it felt like the tension was gone and I was rid of the hateful feeling that person gave me. I always like to think of that slogan I’ve mentioned on here many times, “Be kinder than necessary for you never know what kind of battle someone is facing.” And in this case, I had to do my best to think this man MUST be going through something to hate so much. I’ve never met a person in the world that didn’t love C-Man and his happy smiles and loving greetings.

I know as he gets older, we will have more of these. But hopefully not so mean. His love for everyone and the way he wants to love and hug on everyone, I understand, will not be welcomed by all people… and it’s my job as his mother to help him understand that although he loves, our world is much quicker to hate.

On my drive home, I said a prayer for Craig. It WAS a short prayer, but I did it nonetheless. I prayed that whatever is holding his heart captive would free him. Because that’s no way to live, there’s no room for love.

So although I’m sure I have a few non-fans of my extreme optimism, I’m climbing up again past this minor annoyance. I won’t let Craig stop us from being happy and allowing C-Man to extend cheery “Hi’s!” (What kind of world would would it be without those?) And if one out the hundreds he’s probably said hi to in the grocery store, post office, clinic and mall are mean to him – that’s not so bad is it? This time it didn’t hurt his feelings. I don’t think he understood at all that the guy didn’t like him or simply wanted him away from him. But there will come a time where we will have to teach him about hate, because people with Williams Syndrome don’t understand hate… only love.

Walk this way…

The FM Walk for Williams committee has been planning away. The event is coming fast. We’re hoping to have as many people registered as possible by May 1st so all participants get a T-shirt sent for them. We don’t have it in our budget to buy extra T-shirts so hopefully those attending can plan ahead and do so.

We’re excited to have informative signs with facts about Williams Syndrome and music provided by Mark Proulx. We’ll have hot dogs on the grill for a picnic lunch following the walk. Lindenwood park will be a fun place to be on Sat, May 14th at 10 a.m.

www.walk4williams.org

All proceeds will benefit the Williams Syndrome Association to directly enrich the lives of people with Williams syndrome.

Please join us!

fish fascinations and carousel captivations

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.

it’s the little things

C-Man’s most recent Calcium levels were steady – meaning they haven’t went up again, so that is great. But, we’re still waiting to hear back from Endocrinology and I’m starting to think that ignoring us is the solution: unforunately. I’ve said it before and I’ll say it again, I think we are very lucky to have a great healthcare system in the FM region… with that said, their are no careers without hurdles. I believe this may be one.

So we do our best to be patient and hope that progress is being made. I did call last week – I asked for a call back, but I assume they have nothing new to tell me… so why waste time calling? It’s interesting how the little things matter so much in life. Picking up the phone to mention, “Yes, yes …it has been a month, but I am still working on it, I assure you. In the mean time maybe you could do…this to help your son.” – This might have been nice – simply that much and a suggestion. Simple things everyday make a difference doesn’t it? When someone holds the door for you – you in turn, say “Thank You”.  A small gesture of appreciation, but without that “Thank You” an entirely different moment might have occured. What about calling people back, returning a text message or email? Sometimes life throws too many your way. What then? Do you reply with one sentence to show you are not being rude – just busy? Is there a nice way to mention you are too busy to do the little things? I hope so… because I think most of us are too busy much of the time.

But, I don’t think it’s always because people are too busy – priorities come in to play. What little thing means more to you? Who, in particular, is worth your very scarce commodity of time? Think about it.  According to Wikipedia “Priority” means: An item’s relative importance. Yes, yes people forget – but sometimes… it’s just not a priority.

I wish I could say that I was good at those little things all of the time – but I definately am not. As mom, full-time employee and wife – - with multiple plans and events happening all of the time – - (how many other moms can agree) that sometimes your head is so jumbled and full of mini to do lists you can barely muster a “Thanks” or one more text reply before you burst and have a meltdown of our own. It’s almost as bad as complaints – - You spend all of your time trying to do your best, feed, bath, dress, work hard at work and their is no room for critcism, not even constructive – somedays. Especially when they come from someone who just tries to bring you down, a failed attempt, but an attempt all the same.

Life is too short to be spent without “Thank You’s”, “I love you’s” and simple appreciation.