The irony of this picture is that I don’t totally subscribe to it because as I have said before I am a spiritual person; however, I do believe that we have choices and make them everyday and those are in your hands. I had to remember that today as once again I had to confront all of my inner discomfort as Q’s Urologist called to discuss his test results from that horrible VCUG in May (clearly more traumatic for me that him as I still remember it clear as day as the “how could you betray me and tell me this is for my own good” pierced my soul) and is basically telling me he wants to do a surgery to correct his Ureterocele and Kidney Reflux. Not the best news, and as much as I like and respect this doctor and his opinion I could feel myself asking for my own advice in my head so like a geyser forcing itself through the earth’s crust, I mustered up the words to say, “what if we do nothing?”. There was a pause, and his response was that we can do that, but it will be likely that Q will start having multiple UTIs.
As I may have mentioned, he is currently on a daily prophylactic antibiotic to prevent these UTI’s, which has worked thus far, but we are basically being told we will eventually be forced to make the choice. We obviously don’t love the idea of him being on a daily antibiotic but guess what I don’t love at all, the idea of him going under for a surgery to correct his anatomy. Back in January, before this blog started, we had to take Q in for a “procedure” which involved him going under anesthesia and as I handed him to the nurse to go into the OR, I crumpled into my chair and cried. That “procedure” as we called it, to drain the Ureterocele for the first time, was not difficult in technique but in my mind it might as well have been open heart surgery ( I am not making light of the parents that go through multiple surgeries as one of our dear friends does this with her son on a regular basis – and I am happy to report baby Ev is now of weight and can be on the kidney transplant list, yay!, but as I often say in this blog, your emotions are your own and my pain in handing over Q that day was the same fear every parent has when their child is going under anesthesia, “what if something goes wrong?”) and as in the case where you have too much coffee, I could not stop moving. For 90 minutes, I fidgeted, tapped my foot, walked around the room and watched my hands as they seemed to take on a life their own to shake uncontrollably. For that procedure there were no knives. This proposed surgery, for me, is akin to when Q was a week old in the NICU and they could not get a vein on him as they were too small and kept blowing out (even now, it’s a whole thing when we have to give blood, also awesome), so they had to do what’s called a broviac catheter where they put an IV inside of the baby next to their heart. I was terrified, and sat in the NICU crying as I watched the Doctors work. Obviously, he needed that IV to survive, but as we talk about survival, on this surgery I am not totally sold. This seems to now be my barometer, what do they need to survive? For now, that’s about all I can handle.
So there you have it. So much for sun, sand, laughter, a tan and an Aqua Skipper (look it up, it’s awesome) being the magic fairy dust that changes our life as I was secretly hoping:), but the good news is that I was so present when I was talking to him, partially because I was heeding what I say all the time, trust your instincts, you have a choice, just ask the question….and so I did. So today is a reminder about perspective. While the circumstances and outcomes may not be in your hands, your perspective is, and although my magic fairy dust didn’t wash away all the circumstances, yesterday’s reminder to take time for myself (which I did), helped me to be entirely present in the conversation so I could ask the questions, make a decision to hold off, and not surrender my desire to please, or the wave of fear that starts to crash over me during many of these conversations. Today, I feel empowered and courageous…so if this can help just one of you today, whether it’s the driver that cuts your off, or the kid that is mean to your child or if your child seems to be out to challenge you all day, keep your perspective, it’s yours can help today be ‘yournewfavoriteday’.
4 thoughts on “Remembering Everyday is a New Day…That’s The Easy Part, Keeping Perspective is Challenging.”
Wow, Shannon you have amazing strength and courage! I can not imagine what you and your family go through but I am amazed at the way you handle it all. Trust your intuition, it seems to be right on.
You are so sweet Marilyn. Thanks for your thoughts and I look forward to connecting when you ready.
Good for you..I would have done the same thing. Antibiotics the lesser of two evils but really not that bad. When Roan was 15months old he under went 2 surgeries and a tummy scope at the same time. He had his adenoids removed and tubes put in his ears which are very routine. I had been through so much more with Aidan I wasn’t that worried except for the anesthesia. Well trust your gut. He ended up going into respiratory arrest due to the anesthesia and scope and his entire face swelled along with his throat closed. Something so harmless and doine “routinely” ended him up in a 12 hour oxygen isolation room in Children’s hospital. It was one of my most dreadful and scary experiences. And I had been through some scary ones with Aidan.
So my point in telling you this is trusting your gut is a good think and you know what is best for your child…(((hugs))) for those hard decisions my friend.
You are one amazing lady. That is an incredible and frightening story. Do glad he is ok but wow. Thanks for sharing. Just taking it all one day at a time.