I was talking to my sister about it all and she gave me the perfect words...it was a gift that couldn't be wrapped. Nothing anyone could give me...the kind of gift that only God can orchestrate. The kind that changes you in ways you didn't think possible and to depths that are impossible to describe.
I'm still having a hard time processing and verbalizing it all. I feel like it might only make sense to a few. But I just know I have to write it down. I can't let time pass without documenting it...this gift of perspective has the potential of being a profound marker in my life.
We had an appointment with the surgeon that will potentially be performing Tessa's surgery this summer on her hips. Darin originally met with him back in August for what we thought was just to get updated hip x-rays. There was lots of infomation relayed at that first appointment and it was important for us to go back together and do a repeat so we could process the information together. That repeat appointment was Tuesday afternoon. I was stressed. I was feeling very uneducated because I didn't have the specific information to research the original recommendations for Tessa. The only thing I really had time to look up was an alternative surgery approach that I was told about that's offered in Texas.
This is a big decision. The last big decision we made for Tessa was to get her Cochlear Implants. And honestly, it was not a hard decision for us. We knew without a doubt we wanted to give Tessa the very best chance at hearing the world around her and give her the best opportunity for communication. She was so young...just 1 year old when she got her right CI and 2 when she got her left. The surgeries went very well and recovery was not bad at all. This decision facing us now...a preventive surgery on her hips...feels like a very big decision. A big surgery and a big 6 week recovery. One day I may look back and realize it wasn't quite as big as it felt...but for now, it's huge.
I took all this stress in with me to the appointment on Tuesday. I was so nervous. I knew I was going to be that mom asking the millions of questions until the doctor is blue in the face. But I knew I had to. I also had everything ready to get his perspective on the alternative approach offered in TX. This was my first time meeting this doctor and I knew I had the potential of really frustrating him with all my questions and especially by throwing out another doctor's name and approach (if it did frustrate him, I will never know it, he was very professional in addressing all my questions and concerns)...but I definitely went in there carrying that stress with me. I definitely complicated the situation...stress, nerves, uneducated-protective-mama...the perfect combination to result in any number of unpredictable/unwanted outcomes ;)
I went in praying for clarity and understanding about the surgery...the specific surgery that was being recommended, so that we could make the best decision for our daughter.
I came out with clarity and understanding about our life with Tessa...a new perspective that I've never had.
In an effort to describe how it all came together, it may sound like I am being negative or judgmental about the surgeon, but I most definitely am not. I truly believe every detail about that day was exactly as it was meant to be. We have nothing but respect for the surgeon and couldn't be more grateful for the time he spent with us and the patience he had with me and all of my questions.
Throughout the appointment it felt like the doctor was answering my questions with a hint of annoyance on his face. I actually expected that...I mean I did go into the appointment with somewhat of a goal to annoy, I mean, to educate myself ;) In trying to describe it to Darin I said 'it was something about his facial expressions'...I have no idea if the doctor even realized he was making an expression, but it is something I picked up on and plays a huge part in changing my perspective. If I could define the expression it would be - 'it's not that bad'. Throughout all of our discussions about Tessa's CP, her high tone, her spasticity, her 4 1/2 non-ambulatory rating, etc. etc....time and time again, I would sense that annoyance on the doctor's face, as if to say 'it's not that bad'. It was very clear that the doctor had experience with situations much more severe. At one point I felt inclined to call him out on his annoyance (I didn't actually say that)...but I did say something like "you know, Tessa is all we know, to us, her CP is severe. I have friends that have kiddos with CP, but I'm not hands-on with any of them. I don't have any comparison of what the day in and day out care is like for any other child with CP, I only know our experience with Tessa and it feels very severe." I went on to describe specifics about the things that Tessa's body does, because of the CP, that can be so hard for us. He validated everything I was saying and was very understanding, but still...the expression.
I know I'm exaggerating it all a bit in my head now that I'm on the other side of it, but I just sit and wonder what must have been going thru the doctor's head. When you have a profession like he does and you see the extent to which kiddos can suffer from the effects of CP, there is no doubt in my mind it changes you. He does what he does to help improve the quality of life for kiddos that have a rough road. And he helped me realize that yes, Tessa has a rough road. And of course, life with her and how CP effects her, is all we know. But he knows more...he has seen more...he has offered medical intervention as a preventive measure and as a necessary measure...he has seen much rougher roads.
I am so thankful that God allowed me to sense annoyance from the doctor (whether it really existed or not). It communicated a perspective that we are rarely offered in this life of ours...a perspective that 'it's not that bad'...there are rougher roads. CP impacts every child differently. It gets worse over time because there are huge downsides to growth. Doctors don't have all the answers...so much is a mystery. There is always hesitation to suggest what will or won't happen. It's anyone's guess. Darin and I definitely feel like the experts when it comes to Tessa and her care sometimes. Maybe this was the perfect storm of having an experience with a brand new doctor and conversation with someone that has never been involved in Tessa's care. Maybe this was the result of all of my ignorance and annoying questions. Maybe I sensed annoyance in facial expressions that didn't even exist. Maybe our limited interaction with other children with CP has created a sense of isolation in this specific realm of Tessa's diagnosis. WHATEVER it was, whatever it is, I am so thankful to have walked away from something with more clarity and understanding than I could have ever asked for. I'm so thankful that someone was placed in front of me with boldness in the fact that 'it's not that bad'. I am so thankful that I went into the appointment the train wreck that I was...because I believe God orchestrated all of these pieces to change my perspective and impact me.
The details are a mess when I try and write them down...but they are put together so perfectly in my head. Whenever I come back and read this I will know exactly what it meant. In those moments when I sensed the doctor's indication of annoyance I will remember...'it's not that bad'.
Instead of adding more words to this mess, I will end with these. I went home Tuesday after the appointment and I loved on Tessa in a whole new way. This was me fully embracing a change in my perspective. Tessa deserves my very best, but I am incapable of that for her all the time. But on this night, I promised her I would try. I would try harder than I have been trying. I promised her that I will let God change me in the way He is trying to change me. I thanked her for what she is teaching me...for her patience as we journey this rough road together.
She knows, I know, 'it's not that bad'.
I believe the best gifts in life, can't be wrapped. I think we miss them sometimes, but I'm so glad I didn't miss this one.
~Whitney
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