There is nothing like a 3400 mile road trip to bring out the best behavior in everyone – all stuck in the van for what amounted to north of 64 hours. My apprehension taking Savanna on such a long road trip was high. Her demeanor the past three months tempered my expectations. In addition, results from the Bronchoscopy and EGD scope of her esophagus showed nothing was wrong. Rebecca took her that day, and I was home with the other kids. I remember getting the call, and actually feeling depressed. I desperately wanted something found to be affecting her that could explain her lack of eating and near constant agitation. Despite the fact she is not having seizures, we cannot live like this. For the first time, I actually thought maybe we made a mistake with the brain surgery. It was like a dark cloud was following her (and me) and the rain just wouldn’t let up. I said a prayer that day for God to give me strength to carry on.
Yes, there was some less unhappy time, even some photo opportunities in the past 3 months. But, I remember no discussion prior to surgery other than the common complications and rare unintended consequences, such as infection, hydrocephalus, and paralysis. I did learn how to help her regulate her behavior, but it required a lot of heavy sensory input from me, and it was exhausting. I just could not do it for more than 2 or 3 hours at a time. At which point, I just had to put her down. She could not just be held without a lot of stimulation. Here is a short video of what she looked like during most of her time awake since the surgery (just before the trip)
Travelling in the car proved easy really, as Savanna really enjoyed the constant motion and movement which is known as vestibular sensory input. Knowing how to regulate her behavior externally through my actions, I actually expected an easy car ride. But she wasn’t just easy to manage, she was really happy at times. It was refreshing to witness. At the hotel, the alternate personality emerged, (and so did the Ativan®). An hour or two was all we could endure at that point, and we had to intervene.
First stop on the trip was my Dad’s place in VA. They live in a modern log cabin on Lake Anna, a man-made nuclear power plant cooling reservoir. Lake Anna is nearly 17 miles long, populated by people who love being near the lake. The obvious enjoyment of lake living overflows from their property onto elaborate docks complete with second story living areas, slides into the water, dry docks for several different types of watercraft, duck blinds, and even an airplane hangar or two. It seems more developed each time we visit. Rebecca had to work in DC, so I took all four kids out on the pontoon boat with Grandpa and Grandma 2 days in a row. We pulled them around on the tube until they just didn’t want to tube anymore. I even took Savanna out on the tube with me, and she really enjoyed it. Before, after, and sometimes during, was challenging with Savanna as usual.
Then on the third day there, a miracle happened. Her morning was typical. Inconsolable for about 5 hours, then nap time, and then she awoke and didn’t cry! Like the sunshine after the rain, Savanna was happy. It was like a new beginning that day. I didn’t know what to think or even how to appreciate it? It was a relief at first. She wasn’t screaming and crying constantly and I assumed that she would start crying again soon.
She became a Mommy’s girl instantly. She wanted little to do with me, especially when Rebecca was within sight or earshot. How selfish was I to be a little depressed by this particular behavior, being the only one who could seem to regulate her for any length of time in the past few months. The coming days saw another leg of the trip (550 miles to Louisville, KY) where the other grandparents and family live. She could not have been happier once at Rebecca’s parents’ house. She smiled. She laughed. She was very deliberate with her actions and movements. Her cry changed to one of ‘look at me!’ rather than the boo hoo of ‘why is this happening to me?’ The shallowness of my thoughts during those first days would soon be overshadowed by the change we saw.
I really think God was watching us and was acting. I tried to explain to those around her our first night in Louisville that this had just happened. My words felt like they became awkward, as none of them have really seen her in the last 3 months. I should have just kept quite. Looking back, what did the past really matter anyway?
The joy of peace and happiness filled the air. All seemed right in the world. I learned on this trip not to disturb such joy with unnecessary conversation. I am still learning how to choose the right words to formulate responses to questions from many different types of people. I am still learning how to exude happiness, elation, and even satisfaction about how great she is doing compared to where she was less than 1 year ago.
I have immersed myself in her every detail of her condition and care, delving deep into how persons like Savanna ‘recover’. I have results from Early Intervention testing, advanced genetic testing, detailed clinic notes from many types of doctors, and feedback from therapists who spend most of their time with kids like Savanna. I spend time helping others work through similar situations, providing support, just trying to listen. All of this activity brings gravity to Savanna’s situation. Yes she looks great. Yes, only Savanna knows what she is going to do in this world. Yes to all the anecdotal advice we are given. But my vantage point gives my a different perspective.
A broken bone healing is how I think many see Savanna’s situation. During this trip, the cast came off, function resumed, and now she is ‘normal’. Just put her back with the other kids, right? What is your problem Dad? What, she won’t eat? Well, you need to learn how to feed her – don’t you know? Okay, maybe. Maybe everyone is right and I am over thinking some things [but I don’t think so].
Most professionals would agree that the broken bone example is over simplification, despite how she is acting at the moment. On this journey with Savanna, I am learning how to converse with people about her situation at various levels. Numerous times on this trip I found myself misguided in conversational direction. I was too argumentative with my know-it-all attitude, and too late to change course aside from shutting down the conversation. Live and learn.
Character flaw aside, I really enjoyed also watching Tristan, Brandon, and Austin spend time with their cousins and especially Savanna’s happiness with her Mommy. I felt blessed by the end of the trip. We let Tristan have a camera during the trip and just let him go to see what he would capture. Attached are some of the photographs he captured. Each day I see a little man emerging in Tristan. I wish I could just freeze him just how he is so I could have more fun with him at this age, but life goes on.
Our trip back to Houston was without incident, and Savanna has remained for the most part happy. She seems much more engaged with her surroundings when she isn’t just wondering around on the floor crying. She is exploring, learning, and having fun.
We accepted the arrival of our Au Pair, Ruth, from Australia. Ruth is a great addition to our family and the kids have warmed up to her quickly.
I am learning each day how to better appreciate a little sunshine after the rain.
Wow!! Thank you for the update. Blessings are always with us, continue to believe in the power of prayer. The earliest she can have physical therapy and in speaking the better it will be for her. Savanna and her family are marvelous. We rejoice, smile and laugh with you.
We have been listening to Charlie Rose’s series on the brain at home and in our discussion group. We also learned the time for a child to learn a second language is way before six years old. Scientist discovered something happens in the brain at six and the ability to learn another language diminishes. Wish I would have known this years and years ago.
Blessings to Becky, Ken, Tristan, Brandon. Austin and Savanna. With lots of love and prayers, Aunt Dee and of course Uncle Allen
Sent from my iPad
Hi Uncle Allen and Aunt Dee,
The past couple of months have been wonderful to see Savanna ‘wake up’. It was really great to see you all during the trip and have a chance to visit. We are planning a similar length trip over the holidays, and look forward to see you again.
As always, Ken, you’re an inspiration to us all. Keep doin’ what you’re doin’ and God bless the rest!
We think about soCal a lot. I hope all is well with you and the family.
Ken, thanks so very much for taking the time to bring all of us up to date on Savanna, and the whole family. Can’t tell you how wonderful I think you all are for even attempting the trip. And God gifted you with joy in Savanna, for today. He will help you through whatever might come tomorrow. For today, rejoice!
I think parents deal and cope with situations such as this in different ways. I know Rebecca and I do for sure. This blog is one of my ways of coping. It falls in that category of helping others in order to deal with your own situation. It works for me. I have to thank Rebecca for standing by me while I do this.
Ken, would you change my email address to: email@example.com. I don’t want to miss any posts, and Time Warner Cable bought Insight. Thanks so much, Anne (Lepping) Burnstein.
Sent from my iPad
Yikes – I thought my 550km family road trip was long (that’s 340 odd mile for you Yanks) ! Well done guys, you have my respect. And please let your friend Allen Schroering know not to take what scientists say about kids learning a second language to literally. My brothers and I had to learn English way after we were 6 – no issues. The trick is necessity. So I guess they would have to move to Italy if they wanted Italian to stick. Not a bad compromise if you ask me.
You know us American’s – excessive and wasteful. Dare I say how much petrol we consumed? 🙂 It was a great trip, and we plan to do it twice a year.
I know I have said this before, but I really enjoy reading your blog. Your work inspires me to write, write better, and I thank you for that.
We an Au Pair who is from the New South Wales area, your neck of the woods (or at least the same continent). She is great, and her accent is something else. The kids love her. I often wonder if your accent is the same?
No worries, it is changed. Also, for any of your friends or family that want to follow, there is a email subscription widget in the top right column on the blog. Just enter the email address where you wish to receive updates, and you will get them automatically. The more readers the better, as it increases awareness.
Thank you for the well wishes, interest, and prayers – it is all helping!
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