Recently, Mike and I were able to take a trip of a lifetime; thanks to so many wonderful people. This was the first extended trip Mike and I have taken since before Emily was a thought in our minds.
We had been dreaming of attending the real Oktoberfest in Munich, Germany since early in our dating days when Mike introduced me to Oktoberfest in Minnesota. Even though our trip was packed full of adventures and excitement I had plenty of time to reflect on our life back home in the United States.
Mike and I talked through how we could do things different with Isabelle when we got back. One thing about Isabelle is she is very strong willed (I don't know where that comes from) and she always tests the limits. Hmmm. Which for me usually results in yelling at her after the 4th or 5th time of asking her to do something. Mike and I decided we will try our best not to yell at Isabelle and come up with a better method of getting her to obey and respond on the first request. Of course, we are still working on that!
Then, my thoughts moved to Emily. My heart sank as we arrived in Munich only to see a mother sobbing and holding her limp child in her arms. I was frozen staring at them as people rushed to her rescue. From where I was standing it appeared it could have been a seizure. I began to shake as adrenaline filled every part of my body and I wanted so badly to help. The cries of this mother as she tightly held and rocked her arms chilled me to the bone. It was an emotion that was all too familiar on more than one occasion and made me think of the many mom's I know who are experiencing this exact emotion right now. As I looked back, Mike waived his arm in a motion for me to come his way as our ride was waiting to take us to our hotel. At that point I questioned if we should have ever left Emily (and Isabelle) for this vacation. It took almost an entire day for me to shake this experience, let go and move on. I knew I would never forgive myself if Emily (or Isabelle) left this world while we were out of the country having fun. But somehow I managed to let it go and move on. I was likely helped by all the strong German beer!
“We must be willing to let go of the life we planned so as to
have the life that is waiting for us.” ~ Joseph Campbell
We have tried so many things to make the seizures stop with no success. This includes medications, energy work, therapies, VNS, diet, supplements, essential oil and now cannabis. Those damn seizures just say we are here to stay. So what do we do about the seizures?
About four or so years ago we had multiple routine appointments with Emily's neurologist where she would ask how Emily's seizures were - in my opinion. To which I would reply "I don't really notice them as much." The neurologist would interpret this statement as Emily's seizure controlled had improved. To which I would explain, "No, they haven't improved. What has improved is my acceptance of the seizures and who Emily is as a person with them." So a week or so later we would get the appointment dictations in the mail and it would state that Emily is doing very well overall. This would frustrate me to no end feeling like I wasn't being heard. My child was still seizing more than 1,000 times each day, but somehow Emily was happy and functioning to the best of her ability - so why would we change anything? Acceptance and perspective is everything.
If I had my way, I would take Emily off of the two main medications she takes for seizures. I personally feel they are not doing jack shit and the side effects and taking heavy neurological medications is just not worth it - in my opinion. Unfortunately, I don't have buy-in from Mike and Emily's neurologist so we continue to (in my opinion) over-medicate her every day.
Always look on the bright side of life!"
Although Emily has not responded to cannabis oil in the miraculous way so many other kids have, we continue to give it to her. Currently, Emily is only taking a version that has CBD only. CBD has many healing properties to it and one of the benefits we have seen is cognitive clarity. Emily's response time to questions being asked has improved. She also just seems happier overall. So, we continue to find ways to afford this crazy out-of-pocket expense each month to provide Emily with the best quality of life we can.
The photo is from a poster that we saw on the street of Amsterdam, Netherlands while walking around. If you enlarge the photo you can see so many healing properties cannabis has. I just wish our country would get on board with it. But honestly, there's no big money in cannabis so I don't see it happening anytime soon.
Today I look at Emily and she is seizing just as much as she was in the pictures above, but she looks much different.....
So, today when I look at where she is with her neurological state, I see a child that is not in immediate life-threatening danger, a child who is as stable as we have been able to get her to this point and a child who still very much full of love and life. Yes, the seizures are still there, yes she still doesn't sleep through the night for us, yes she has dysautonomic storms daily which are awful to watch and I'm sure even more awful to experience. But somehow Emily's perspective is that life is still pure joy.
I close my ramblings today with the thought that perspective is everything. We all have hardships, loss and sadness in our lives and the way we deal with it and the timing of when we deal with it is all so individual. I have learned with Emily that accepting people for how they are is just as critical for me as it is for them to move on in life. When I lived in constant chaos, Emily seemed to be doing worse. As I have just accepted the seizures as her norm, Emily appears to be happier and so do I. I cannot change the past, but I can learn from it. Perspective molds our lives each day. I choose to accept things at face value and live life in the present.