The last three years have been full of growth and education for Juli, her family and all those who were moved by her situation. I hope that if you have taken nothing else from Juliana's journey it should be that every life is entwined with another or many others in this universe and that carries a responsibility to appreciate others, regard their life and their choices with respect and empathy and pay it forward wherever you can. As you have witnessed, Juliana might have been the one in the car that night but her whole family sustained the injury and therefore needed healing. For me it was often this very blog. What started as an information highway about Juliana’s condition became my medicine, therapy, exercise and religion. So along the way, even though my intention was to tell you about Juli, I couldn’t help but tell you about all of us as well because Juliana is as much a part of me as the air that I breathe. I am equally thrilled and frightened to say that about each one of my kids:
~ Adam is finally engaged to the girl of my dreams...er, I mean his dreams and I am happy that he has multiplied my love for him and not divided it. Watching him mature into a man who is as grounded as he is reckless has been a wonder and a blessing.
~Dylan is a charming loving young man who deserves a girl every bit as perfect for him as his brother found and I am praying like a warrior that he will find that someday. He deserves someone who accepts him for the kind hearted interesting adventure seeker that he is and I worry and marvel at each courageous step he takes.
~Delaney has learned how to be responsible, caring and empathetic way beyond her years and it is helping her deal with the drama of junior high because she has the perspective of how her life can be much deeper than misunderstood words in a text between friends.
~Mackenzie is learning how necessary it is to lend a hand to those in need, even if it is only her mom trying to balance a grown daughter up a set of stairs.
~Cheyenne, the one who the most vulnerable at the time of Juli’s accident was also the one who relied on her sister for guidance the most. She has matured considerably over these last few years going from a lost and undefined ball of fire-breathing emotion to a best friend to me; something I wasn’t sure we could ever be. She has always been determined and passionate it wasn’t until she needed to rally that depth for the support of her sister that her true strength of character began to emerge. She may not be medically or therapeutically trained to take care of her sister but she has the advantage of being invested in her success and that is something that cannot be found randomly. And in caring for her sister, her tight grip on grief gave way to sibling pride and appreciation for the work involved in going from here to healed.
You may recall I told you this conversation I had with Juliana after I published the book and Chris had recorded his album:
“Juli, if someone told you that Chris could have everything he ever wanted as a musician and I could have everything I ever wanted as a writer, but you would have to give up a few years of your life, what would you say?" Without missing a beat, faster than her normal ability to reply she said, "I would do it." Hoping she could see the slight positives that have been drawn from her situation and how she influenced it all I informed her that she did just that. If I were to re-ask the same thing today but add to that list of rippling effects that she would also provide direction, purpose and maturity to her wayward sister, her answer would be even more emphatically, “Yes”. I tested my theory and I was right. Juliana's dedication to her siblings, most specifically to the guidance of Cheyenne, was as important to her before the accident as Cheyenne's dedication to Juliana is now.
Not to overstate the obvious but to address the critics who may read the positives as some indication that it makes Juliana’s challenges somehow worth it all; I didn't want this for any of my kids or for any of us. I didn’t want any type of success or career opportunity at the expense of any one of my kids. I didn’t want Juliana to be hurt and injured so that any or all of us could have a better opportunity. Of course, you know this, right? Don’t be surprised, plenty of people think otherwise. What happened to Juliana was an accident that rewrote our story and as we grieved and we grew and this just the way it is. I didn’t get to define the terms of my agreement with God when I accepted the children He gave me or surely I would have struck the accident and aftermath from the contract. But while they are on loan to me I will continue to work with what I have and adjust to the way life changes and pray that I can do my responsibility justice. For years I dismissed attempts at being a good cook, never giving it the time or attention to achieve flavorful results. Following recipes was a chore and inevitably one or two of the ingredients were not on hand. But eventually the desire to make something interesting became stronger than the restrictions I had in front of me and so I closed the recipe books, looked in my home for existing ingredients and decided what would just taste good. I modified ingredients, switched up the spices, adjusted the temperature and by continuing to try to create something good with the set of ingredients I had, I was finally able to get into my own groove of complimentary cooking. I was able to feed my family deliciously interesting meals by recognizing that I just had to adjust what I had to work with. Living through the last three years with all of the many combinations of flavors life has dropped into my life has taught me that raising my children and guiding my family is strangely similar.
By now you might be wondering where this two part blog might be leading. ‘Is she talking about the kids? About cooking? What is the point of this entire recap that is starting to sound like a eulogy? And where is she going with all of this?’ Well if that is what you are thinking to yourself then you figured out exactly what this is about….going.
My intention nearly 3 ½ years ago is finally being realized as I am stepping aside as the spokesperson and blogger for my first born child.
That’s right; Juliana is taking over as the writer of her own support blog.
(Let me take pause here until the cheering dies down)
I can almost not see the screen as I type this because I am very overcome with emotion that I am able to finally write this 'swan song' to all of you. It has been quite a ride for me and I can't wait to see the journey Juliana takes you on and exceptionally proud that she really wants to take the wheel (and grateful it’s not in a car...sorry, had to). But this is the moment I planned for from the first entry on October 4th at 9pm. I lost hope over the years that this day would come until suddenly the signs all pointed to the possibility until finally after nearly falling asleep waiting for her to stop surfing around the internet I asked, almost hypothetically the question I hadn’t considered in years:
“Juli, since you seem to like to share your opinions and don’t want everyone else speaking for you, maybe you should write your own blog. “
She didn’t respond, she didn’t even seem to acknowledge my question and I assumed she was just involved in the message she was typing. I looked over and saw she was messaging Chris and telling him how much she missed him. The details she expressed in print were so much more vivid and touching than what she speaks out loud and I wanted to point that out to her.
“Besides, you get your point across so much more clearly when you write than when you speak.” Still she said nothing. I didn’t press it because as I said, it was more random than real and hadn’t thought about life beyond writing the blog anyway. Believing this blog saved my sanity would mean that leaving it behind would have me once again, standing alone in my mind. I shuddered with the insecure thought I had not entertained in the years of accepting that there was no end date on her recovery.
The next morning as I went to get her out of bed told me she had been “thinking about something all night long”. I sighed, hoping that didn’t mean she didn’t sleep well because her productive days were determined by her restful nights.
“Ok, what is it?” I asked distractedly while putting on her braces and shoes so she could stand. As she sat up I noticed she started shaking a bit which is usually an indication that she is either concentrating or getting excited (good or bad) about something so I gave a little more attention to whatever was coming, pretty sure it was more than what she wanted for breakfast.
"I do want to take over the blog.”
Of all the things I thought she might say from skipping therapy to an idea about her birthday party to what painting she would start next to what she should wear at her first art exhibit; that was not even in my catalog of options.
“Really…” I just stopped and waited knowing she had more to say.
“I thought about what you said and that I can type what I am thinking better than speak it so it would probably be a good thing.”
A good thing…well now that you put it that way…
I considered that angle, which I hadn’t before. If it was simply information sharing, sure why not let Juliana be the one to tell everyone about her lunch dates or her upcoming art projects or attending Chris’s show. That sounds good in theory but will she really be able to handle all that comes with it? What would she do if comments were negative because her blog posts were edgy or abrasive written with the same broken filter she speaks? Typing your thoughts is one thing but opening the door to comments, appropriately responding…hmmm….I was creating the mental picture when she went on.
“Then I can tell people about what’s going on with me instead of other people doing it.” Other people. Ah, am I ‘other people’? Well surely that thought deserved additional conversation. But truth be told, her mini celebrity status meant that many people write snippets about her, here and there. The amount of information would probably shock, and hopefully delight her. Chris pointed out that a Google search on ‘Juliana R’ had her on the top of the list on a public computer! Perhaps I should appropriately set her expectations.
“Juli if you don’t want me to write about you anymore I can stop doing that at any time, whether you want to write a blog yourself or not. I can’t stop other people from writing or posting videos but I can at least stop writing about you since it was supposed to be your job one day anyway.” I was used to her brutally honest feedback so I fully expected her to angrily say that she wished I would have stopped writing about her long ago but as she commonly did, her answer was not inspired by either stop or go.
“I just mean, I can tell people about everything that I am doing and how I feel about Chris so you don’t have to.”
“Oh.” I wasn’t sure yet where she was coming from. Was she trying to take something off my plate or was she interested in writing?
“Juli, like I said, I don’t ‘have to’ now. Why don’t you tell me what you want to do and we can take it from there. I surely don’t want to be responsible for expecting you to do one more thing unwillingly. If you want to write a blog, or post pictures to a website, you would have to do it because you wanted to, not because I expected you to or because you thought I no longer wanted to do it for you. Just like I told you about painting, if you are going to write it’s the same disclaimer: If you don’t like it, you don’t have to do it. I want you to find things you enjoy and choose to do.”
“I already do.” I considered that and realized I had talked too long and her reply might have formed at any point in my mini lecture. As was a common occurrence, I couldn’t apply her response to a specific question asked.
“What do you mean?”
“I already do enjoy writing about what’s going on with me. And if I write it then you will have time to write the other stuff you really want to write.”
Of course. Yet another thing I must never forget: She is still the same girl inside.
“Well I am glad you are considering productive things to do with your time, especially now that therapy is ending. Keep thinking about it and you can let me know what you decide.”
The next day while I was at work she sent me a Facebook message that gave me all the confirmation I needed. It proved she was interested, excited and had the right idea. It also eased my conscience a bit because until she brought it up, I hadn’t thought of myself as ‘Other People’. Here is what she wrote:
"I think writing a blog is an excellent idea! Last night I kept thinking that between what you started with 'For Juliana' if I then take over I bet people will say, "YOU'RE Juliana?! Wow!” Then I really will be famous not just because you and daddy think so. Oh and Mom, thanks. Now you can have more time to write other stuff."
And so the process of succession began....
Since that morning that she said she wanted to take over we had very detailed discussions on what she would have to decide about the website and how we would manage the content. I started discussing a start date and a posting schedule and pictures and titles and dates and--- I recognized the ‘zoning out’ in her attention span. My talk of planning rarely met an enthusiastically kindred spirit. If she was going to do this it would have be her way at her pace and in her style. Letting go of your child an inch at a time is hard enough. Doing it over is even harder.
Juliana is interested in doing this now for the very reason I explained to you in the last blog: She can express herself in written words with the emotion and language that is difficult or impossible for her to convey through speech. She wants people to know that she is there. She wants them to know that she thinks and feels and cares. She wants them to know that she is a grown up, struggling for independence and eager for interaction.
Here are the logistics so you can continue to follow along:
We are keeping the same URL of www.forjuliana.org but giving the website a facelift, personalized and defined by the writer/artist herself. (Thank you Mike Schick for doing what Juliana and I asked, the results are fabulous!) Juliana will use the website to feature the things that interest her, not the least of which is her growing collection of paintings. Be sure to be on the lookout for what happens next for her as an artist; there is just no stopping this young lady! She is very excited to read comments that people will write to her so feel free to respond as often as you like. I am not sure when we will publish her first entry but it will be soon as she writes a little bit every day. She will post a link on her Facebook page, the For Juliana support page and we will tweet it from all of our accounts. @ForJuliana, @6Janet6 and of course, from Juliana's personal Twitter @STylerKissedMe. Oh yes he did.
There is more excitement in our future but as I pass the torch I will let Juliana be the one to tell you any of her big news. For any of you who were reading for the purpose of understanding the lifecycle of a brain injury, I will continue to chronicle where she is in her lifetime of recovery for my own records so if you would like to know, reach out to me and ask. Wherever Juliana is, I am not far away. I will renew my own intentions and pursue in earnest the career I always wanted to have as a writer and with any kind of luck you will see something published as well.
I have learned a lot from this soul bearing exercise including how to accept support and criticism. I learned even more about who I am, who I am not, who matters to me and who couldn’t possibly matter to me less. While becoming wiser I learned that I don’t know very much at all. While I was impatient I learned to wait. While I learned to become accepting, I learned what I will not accept. You might say that is contradictory, but I see it as growth.
Who knows what any of us would do in this situation but I am not going to apologize if 'incredible' comes out of 'horrible'. Juliana has been a living example of ‘anything worth having is worth working for’, even when we had to do the work for her while waiting for her to catch on. If I am to attempt a career as a writer then I will follow her lead and work my way toward it. If you have any interest, peek over a link or two at my website www.janetspencerbarnes.com which will be back to a life of its own, inching ever so slightly into the fictional world I let my mind wander.
I am hopeful the healing touch of ‘writing and response’ will bolster her spirit as it did so often to mine. Leaving this behind is hard…harder than I thought which is why it has taken me so long to do it but I feel the time is right for many reasons, most especially because Juliana is asking to do it herself. It might be safer, easier and more familiar to stay right where we are but I refuse to hold my daughter back one single minute more than this accident has already held her. Protect, guide, hover, worry, obsess…that I will continue to do. “It’s all part and parcel of this whole mommy gig.” But just as I promised in a desperate whisper to my injury induced sleeping daughter, when she is ready, she can speak for herself. She says she’s ready and I will choose to believe her. Take good care of my daughter.
“How lucky am I to have someone so hard to say goodbye to”.
I don’t know who said it but they surely weren't thinking it could apply to 20,000 people at once.
Clearly they never lived their life…For Juliana.