It just goes to show, you should never get too comfortable. Comfortable is a nice place to be, most of us find that spot and choose to stay there until kicked out, usually in an abrupt fashion.
Most of the time, while my happy little demeanor is in a wagon behind me, I reside in a comfortable place. I have a great family, great job, and I surround myself with beautiful people that make my world a wonderful place to not just survive, but live. But none of us are without hard times, and if we were, would we need comfort? I don’t think so.
Before I tell you what brought me out of my comfort zone, let me first apologize for avoiding you blog readers. I’ve been so comfortable lately, I’ve been choosing to read and clean my house before the frost and snow is everywhere and I usually don’t feel like cleaning at all once Mr. Frost show his face. Don’t let me fool you, I don’t ever have a desire to “clean” at any point in my life, but I do have problem with living in an unorganized clutter of dust. So once it gets too backed up, I tend to go on a little “cleaning spree” until I feel my world is back in its orbit.
Back to the point… like so many other moms, we learn from other moms. We watch them, we ask them questions, we think silently to ourselves… “I wouldn’t have done it that way…” but although we all “mother” uniquely, we all have the same concerns. Health is the biggest concern I have for C-Man. From the day he was born, doctors were concerned and specialists have been stumped. Now that we think we have many of the mysteries figured it out, what lies before us is a pile of what I would call little stuff. There are a whole bunch of little health concerns with Williams syndrome. There are big ones too – that, of course, we pay special attention to… but I happen to think it’s the little things that cause the most heartache. The repeated little surgeries that are starting to come up in our lives habitually. I wish it was a bad habit I could chew some gum for, but it’s not and now we write the next chapter.
For those of your wondering, as far as we know, C-Man is still living with Osteoporosis. At this time, we are waiting to see how he grows and to see if he can grow out of this entire Hypercalcimia scare. Once that is over, we can start supplementing with Vitamin D and hopefully Osteoporosis can go back to hiding in its dark, creepy and dampened cave. C-Man has not broken any bones yet, and yes… he does fall down a lot. I’m pretty sure it’s safe to say God has been deploying many majestic angels to cushion his fall and place imaginary bumpers on corners wherever he romps, because how he has not been “broken” already is a case only my heavenly father can solve.
For those of you who know me, I take my mommy job quite seriously. With all jobs, we are to watch and learn from others right? I do my best to keep up with my online support group, but I must admit there are times that weeks go by, before I get a chance to even read a few of the updates and posts by other moms. I try to contribute and offer advice from my experiences, as it is not just about receiving, as it is giving, too. So I do my best. Well… I missed the boat. I saw a friend from New York posting about a surgery her son was having. My first thought…
I should absolutely already know what he is having surgery for, because she is my friend, he has WS just like C-Man and we have watched each other’s boys grow and learned from each others experiences for nearly 4 years now, how can I ask her what the surgery is for?
So I did what anyone would do… I asked her. She told me it was a Bilateral Orchiopexy. For some reason, Google instantly came to my mind. How about you? Well let me tell you, it is a procedure done to repair undescended testicles. Now, I promise, I will not make it a habit to talk about testicals on our family blog, but today… I am talking about them, yes. If I have offended you, please hit the red x at the top right corner of your screen.
In Williams syndrome, there are a lot of traits that people with WS share across the board. Of course, there could be other things that absolutely are not, but undescended testicals happens to be one of them. I knew, right after she told me what he was having the surgery for, that C-Man would need it, as well. I brought this very concern up to his doctor last time he had an appointment with him. In fact, I brought it up to the last two doctors and neither of them seemed too concerned with it. They both made my concern feel legitimate but not alarming enough that they even felt C-Man should be referred to a Urologist.
Please know, adding another doctor/specialist/appointment to our schedule isn’t something I want to do, but remember what I said above about taking my mommy job very seriously? I got to thinking… (Albeit while doing one of my 50 loads of laundry) what if one of his two regular doctors didn’t think it was a big deal, but what if it is? Maybe they just thought, he’s got a lot of other health concerns, let’s not worry about this one right now… but what if this is a big thing and we’re ignoring it because they don’t want us to take on more? I’m okay with more… I want optimum health.
I went back to Dr. Google and found a doctor in our health system. I made an appointment and I brought him this morning. I know some doctors have better bedside manners than others, but I truly believe there are people in this world that are simply uncomfortable around people with special needs. Remember, never get too comfortable, right? I think it was C-Man that booted this doctor from his comfort zone today. I imagine I could have made life easier for him, but I chose not to. I’m choosing to chalk it up to an awareness opportunity for the doctor.
(Insert apology here for my post getting much longer than I planned).
Our Monday started out great, I woke up feeling very refreshed, ready to continue sleeping if I could, of course, but still ready to get up and take on this busy week. Carter had already turned on his bedroom light and was sitting on the floor with a pile of books in his new blue robot footies jammies.
Did you know Osh Kosh sold footie jammies in 4T? Score.
I got ready, while C-Man munched on Cherrios, banana and his special low calcium milk. Slightly alarmed, I rushed out the door – realizing we are way behind to get to his appointment. My elite driving skills, allowed us to walk in the doors of the Urology department a mere 1 minute late. We sat down and I removed his coat and studly hat. He grabbed a magazine and planted it on the floor to look it over and name every object he could, whilst charming the entire waiting room. He was only able to look at the magazine for about 20 seconds before they called his name. We walked back to the room and the nurse was very nice, courteous and understanding, everything a nurse should be. Expectations high for an understanding doctor as well, the doctor walks in the door. He sits down and instantly C-Man wants his name tag. There is something about a name tag that pulls out on a winding string that fascinates him beyond belief. I’m thinking about getting one that says “mommy” who knows maybe I can use it to unlock secrets or open special doors like when there is a line for the bathroom. We all know how well moms can wait.
C-Man walked around the room without a care in the world. As far as he was concerned, we were there to buy our tickets for the carousel. He had no idea he was about to get his little manlihood inspected.
He handled the manlihood inspection quite well, I mean, yes, of course he screamed and I had to hold his arms down while the inspection was happening, but he bounced out of it well and went back to the magazine I found him with a birdie on the cover. “Tweet Tweet,” he whimpered after… with a fat lip and a tear on his cheek.
I was expecting the doctor to say, “Ah… he’s fine. Doesn’t hurt to have it checked out though, have a great day.” And walk out of the room. But he didn’t say that at all. He said, “Yes, I think we’re going to have to do a surgery to pull it down. It can cause cancer if it stays up there.”
At this point, C-Man is getting bored and walking around the room. He kicked the metal bed contraption and it made a banging sound that he was quite proud came from his doing. So, yep, he did it again. There must be something about becoming parents that you just start tuning those things out. It didn’t even really bother me at all and I could have quite easily continued on with our conversation with the sound in the background. But, Mr. Doctor did not at all care for it and said, “Hey, Hey now… don’t do that.” It was at this point; I quickly realized what was happening and stopped C-Man from kicking it again. I redirected him to his “book” but he found flickering the light to be much more fun. Mr. Doctor could not continue with the conversation from this either… he had that wine snob look on his face. That doctor could not answer my questions, or do whatever I asked of him (in getting a referral for the U of M, since that is where has all of his anesthesia surgeries) fast enough. He wanted to get away from C-Man. It’s difficult for me to tell if he wanted to be away from C-Man and his syndrome, or away from a child in general, but had he been more personable and willing to talk to C-Man he would have quickly found a charming, sweet and lovable boy that would have gladly given him a hug and kiss goodbye.
I realize there are people in this world that are simply not comfortable around people with special needs. It isn’t that they don’t like them or want to help them… they just get into that (I’m not quite myself, I don’t prefer this, I want to get out of this room) behavior. I don’t dislike people that experience this, but with that, I also prefer to keep C-Man away from them. Therefore, the doctor quickly agreeing to give us a referral mildly brought me joy. He left and so did we. We know what we have to do, and we went through that experience to get through our next small thing, our next procedure. At first, we walked out of the building, into the fall air and crunchy leaves under our shoes, a little bit sad that we have to schedule another surgery and go through those fearful steps, but I know God and his majestic angels will be around us, watching over. After all, C-Man doesn’t make the angels even the least bit uncomfortable. So I’m going back to my comfort place for the rest of my day, because God told me, He’s got this one. Oh, and if my speaking of God and his grace makes any of your readers uncomfortable, I hope it prods you seek comfort there.
What’s next? Stay tuned.