Since Juliana’s accident I have tried hard not to look back at ‘what might have been’.  I kicked myself several times for choices that we made but just as swiftly forgave myself for not knowing any better to begin with.  I didn’t blame anyone for the sequence of events that night and certainly never tried to seek retribution.  That entire ‘blame game’ was never a valuable use of time.  And anyone that knows me would agree that I really hate to waste time.  As the calendar is moving forward we have come to know many other individuals with a Traumatic Brain Injury and the normal course of action is to compare notes.  You can’t help but to trace back your steps and see what worked for you and what did not work.  You hope you never have to use the information but when called upon to do so, it is something you never forget. 

Our most recent acquaintance as you may recall is Alex Fitzgerald.  For those of you not following his progress, you are missing out on a miracle.  This young man is improving at a rapidly impressive pace and each update is a source of joy and wonder.  His injury is not getting the best of him but instead he is making strides quickly and early which is, from what we learned, the indicator of overall success.  And in reading what his parents write I can see the happiness that they are feeling as they watch their son improve.  I remember it well and am still bolstered by the knowledge that in the middle of what seems to be your darkest days, you are simply consumed by the fact that they are less dark than the day before.  But in the back of our minds, and most recently in the front of our conversations is this nagging, gnawing feeling that a very serious oversight took place that has forever steered the course of Juliana’s recovery…

At the time of her accident they told us that there was swelling, shearing and bleeding in her brain.  As frightening as that was they added to the concern by warning us that the worst was not over.  They said the intracranial pressure can continue for 5-7 days and if that occurred the patient risks a secondary injury, often with effects worse than the first.  Point taken, risk understood:  The thing we were praying for was no addition swelling.  They monitored Juli with daily CT scans, and upon review the doctors concluded each day that her pressure was stable.  While we breathed a sigh of relief after that 7am doctor review we wandered to the waiting room where we tried to gain knowledge from the family of the patient in the room next to ours, also healing from a brain injury.   In an effort to prevent a secondary injury, their family member had a procedure which sounded incredibly radical at the time called decompressive craniectomy in which part of the skull is removed (skull flap) for several weeks to allow the swelling brain room to expand without being squeezed. They replace the skull flap after danger of swelling has passed and the progression beyond that takes a turn for the better.  Taking off part of the skull??  Wow, how lucky were we that Juli didn’t have to have that done?! We trusted the medical professionals implicitly in those first days and accepted every suggestion they offered.  When they asked “do you want to…” our answer was always, “if it will help, yes”.  We thought ourselves so fortunate that our doctors never even suggested something so extreme.  Clearly Juliana’s situation wasn’t as serious as all that.

6 days after her accident, with 6 days of CT scans that indicated the pressure in her brain was stable… Juliana was again in life threatening condition.  You have probably read this before, I have mentioned October 8th as the second worst day of my life. The swelling had in fact been undetectably increasing, just as they warned it might and it was creating a situation that would surely have killed my daughter had we not noticed her eye protruding from her head and insisted on them examining her more closely.  It was far more gruesome than any Halloween mask could emulate and to see this happen to my beautiful daughter was devastating.  But what I have not discussed, because it takes years of seeing how ‘the other half lived’ to understand that Juliana’s secondary injury did not have to take place. 

From October 3rd through the 7th we watched her activity increase and her limbs flail wildly.  We saw her try to escape her bed in her unconscious state and watched her lift and turn her head like someone trying to set herself free.  We watched what we thought was life being breathed back into her body and saw only forward motion in her future.  But on October 8th when Juliana’s brain pressure was noticeably dangerous, the immediate solution was an emergency bedside procedure to save her life, all of her bodily movements fell silent.  What followed was weeks of limp, unresponsive limbs.  What replaced her activity was an eerie calm and stillness.  Juliana’s brain injury effectively started over but from a lower point than it started the first time because her brain swelled within its trapped bony shell.  The only relief it could find was through her fractured facial bones, most specifically her right eye.  The damage to her optic nerve was severe, she lost the ability to fully open her right eye and the loss of her vision is permanent.

All of this pales in comparison to the fact that she lived and continues to recover and we were just grateful she did. That gratitude took us a very long way.  It took us into the lives of other individuals in a similar situation, many of whom are having a more complete recovery.  And as we reviewed what we knew, when our own statistics could not be denied we had to ask ourselves if Juliana’s progress is less possible because of the secondary injury that simply didn’t have to happen.  Could Juliana have an even better, faster, more complete prognosis had this procedure taken place?  We will never know and we cannot dwell upon that road not taken.  But when sought for our advice we will always suggest that families take that extreme and frightening option, even though it might feel like are admitting to being in a more dire position than you wish to be.  Looking back over the evidence I can tell you it’s not much fun being in the position of ‘if I had only known then what I know now’. But what makes me more angry than frustrated, and takes me closer than I like to assessing blame, is not that we made the wrong choice but that we were never even presented with the option.   Did they think that Juliana was such a lost cause that there was no point in even suggesting it?  Their words and actions seem to imply that to be the case even though we fought hard to convince them she would live.  I know that this procedure is routine in its execution but considered slightly controversial in its usage so I am in no way suggesting it should be standard protocol.  But every once in a while I can’t help but indulge in a moment of regret, a second of lamenting, and a breath of remorse at that lost opportunity. 

We didn’t know, we didn’t ask and we didn’t get the chance to say to them, “If it will help…YES!”  

I have often said that I felt being a mother was a job I was given by God.  Sometimes I feel like I am doing the right thing and, like many of you sometimes I know I will something to answer for.  But then there are those times, the ones that fall in between, when you aren’t sure if your message was right, received, or even if it was yours to deliver at all.  It’s in those times, the ones in the middle that make this parenting journey so unique to each of us. 

Throughout the last 2 years and 7 months 10 days we have been drawn to the new group of people to which we belong: families with a TBI.  In the beginning we were the recipients of advice, support and resources.  We were curious, frightened, desperate and willing.  We soaked in all that we could in an effort to make sense of our present and our future.  Somewhere along the way we found ourselves maturing to the other side of healing and were called up to give advice, support, and comfort to others in our position.  That is the natural progression of human dynamics I suppose; you gravitate to those that understand you, or think that they might and look to them for what you need.  For the most part my advice has been to the parents of someone with a TBI, and not the individuals themselves.  I feel like I have talked to every wounded mom, frightened spouse or confused sibling that I could come across.  And although we have grown close to a few of the injured themselves, I can honestly say that my brand of support has not been sought by them.  Clearly I never wanted to become an expert in this field and I still don’t. But experience includes an element of responsibility and as much as you don’t want to sound like you have the answers, you feel so compelled to share what you learned.  That is probably why I never felt it was right to counsel the injured themselves: that was not my area of experience.   A brief conversation with a young lady with a TBI not much older than Juliana had me changing all of that.

She asked me if Juli goes through any issues with God like deciding she didn’t want anything to do with Him or a change in her faith.  From previous conversations with her mom I know that she is still piecing her life and memories back together so I felt an enormous amount weight was hanging on this conversation.  She went on to say that before the accident she had a very strong faith but now she wonders if there was a God because if she were one of his children, why did He pick her to be in the horrible accident?  I got the distinct impression that she was making a plea to have her mind changed.  Now I already pointed out the obvious, that I have never been in the shoes of the injured person so my reluctance to give advice was steeped with fear of ignorance.  But this young lady was looking for something even more, something less tangible, and something that I hadn’t quite answered satisfactorily for my own daughter. Rushing through the catalog of mental parent quotes I heard my dad’s voice as loud and as clear as it has ever been.

“You really learn what you believe when you begin to instruct your children.”

I heard that coming from him many times as I began raising my own children until the day I realized it was coming out of mine.  But this was someone else’s child.  Mind you, I am no stranger to instructing other people’s children as I was a preschool teacher for nearly 14 years.  But that was very familiar and mostly routine and they were little.
Here goes nothing…

“Well, first of all, I have to be honest…before the accident Juliana was already questioning God and didn’t think He existed.  It wasn’t until afterward that she was actually considering His existence again. But for what it’s worth I don’t think God ‘picked’ you or Juli or any other victims at all.  It’s just my opinion of course but I don’t believe God puts us in harm’s way.  But I do think that He often removes us from harm’s way but it would be unrealistic to think he would or should remove all of us from it, every time." A few minutes passed then the reply came.

“Well it helps that you say God didn’t probably pick either of us.  Most of my thoughts about this are unrealistic but you bring up some good points for me to think about.”  I could tell from her next statement that maybe she thought I was judging her and I felt bad that might be true. “I’m trying not to be so negative because at least I did get to live.”  (Hmmm…my interpretation: “Everyone expects me to be grateful that I am alive but I am still mad I am not as alive as I was before accident.” And I completely sympathize with that.)

“Yes but you get to live with experience and perspective and appreciation.  What I tell Juli is this: there is no point trying to figure out why this happened because it is in the past. But you ladies have an extraordinary opportunity, maybe even a responsibility to be MORE than you were before. How you do it is up to you but you were given that opportunity because of what happened, because now people are looking to you for something: inspiration, information, hope, perspective… something.  Most people go their whole life with only the chance to be recognized by those closest to them. They only get a chance to make a difference to the few that are in their day. I guess I am saying you COULD look at it that you have been given a gift...an audience.  Sure, what you have gone through, continue to go through is a daily burden, but it is also a power.  And with great power comes great responsibility.”

She thanked me and was gone and there I was in that ‘middle’ wondering if I said the right things.  As much as I don’t want to be held responsible for saying the wrong things I am now more concerned about being held accountable for saying nothing.  Even if both of these girls aren't sure if there is a God, I am sure there is.  Because just as my dad predicted, that is what I believed for certain when I began to instruct my children.  Juli is just starting to learn that she reaches people, starting to realize she has an audience and enjoying that they care about what she says.  My fondest wish is that she will use this power to make a difference because even if she can't see it yet, I really do believe she has been given a gift.  
Then again, I have been thinking that for 26 years. 

Happy Mother’s Day.

I am angry. 

It isn’t often that I feel this disappointed in ‘the system’ that I am moved to offer my blunt and possibly scathing opinion but it’s a little too close to home to keep to myself.  As many of you know, we have grown close to several people we met through the course of the last two years.  Some of them understand all too well what we go through because they have also suffered a brain injury.  Today started like any other Saturday, with a wonderfully beneficial session of horseback riding at Sojourn Therapeutic Riding where Juliana rides alongside the young girl who introduced us to the stables: Taylor Gestes. You may know Taylor, might even remember her from being around Juliana quite a bit in the last year or so.  Taylor is the lovely young lady who is embossed with a permanent smile and the delicate beauty of Alice in Wonderland.  She is exceptionally smart, very focused and has become a loving friend to Juli.  Juliana and Taylor share more than just the same riding location because 6 years and 4 days ago, Taylor also suffered a brain injury.  Many of you might not know that about Taylor even if you have seen her around because she has come so incredibly far and can do anything she wants to do.  She looks like a natural on the horse, can text faster than anyone I know and maintains a positive attitude and straight A’s.  She is everything that any person dumped into this horrible injury can hope to become and getting to know her family has helped me to be a better caregiver to my daughter.  As you know, recovering is a series of physical, mental and emotional hurdles that you must jump through for many many years.  And in the course of that recovery, life goes on and by the grace of God the injured person ends up in the mainstream.  Taylor embodies that.  Taylor is a freshman at Carl Sandburg High School and puts herself into that very critical, very adolescent world every day and does it with style.

So that all sounds really positive and really uplifting and encouraging, right?  From that background you can’t even imagine how that morphs into my anger.  Well in talking to Taylor’s mom last week I learned that she was having some issue with the bus that she rides.  It seems that even though Taylor has become incredible capable of walking up the stairs to get into the bus, and we know how great that is from Juliana’s stair walking experience, Taylor is no longer ‘allowed’ to do that.  I heard her mom talk about how frustrating it is to have to change their routine so she now not only has the equipment she needs at school but also the equipment that she doesn’t really need, simply because what they will allow her to do on that bus has changed.  It annoyed me on their behalf but it sounded like Jen (Taylor’s mom) was handling it so I offered my mediocre empathy and went on about my day.  Today I listened differently because I heard from Taylor the thing that broke my heart: she was embarrassed.  I was steamed.  That one statement put me near the same boiling point that her parents have surely been for the last few weeks that they have been fighting this.  And the worst part about it is it never had to happen.

It seems that there is an aide on the bus.  That aide’s main responsibility is to assist the students on and off the bus; it says so in the handbook that the Alpha bus company provides for the families of these students.  Jen asked why the aide was not helping Taylor on and off the bus like the aide’s have always done in the past.  When things didn't change she 'formally asked' because the only ‘assistance’ Taylor even needs is a 'spotter' to walk behind her just in case.  But instead of them just agreeing that they can do their job as requested, instead of the aide setting down her android phone and earning her paycheck they effectively decided to retaliate by requiring her to sit in a wheelchair and be lifted onto the bus and disembark the same way.  This level of restraint and procedure is something that Taylor has worked hard to no longer need and they knew that.  No one likes to be called out for what they are not doing.  But even worse than that is calling somebody BACKWARD even though they can do. The result, intentional or not is to be determined but the choice they made was to embarrass  Taylor.

Now I don’t mean to imply that they bus driver or the lazy aide set out to specifically make a young freshman who is already chronologically at the point in her life to most likely feel self-conscious feel even worse about herself.  I am not trying to say that they decided together to be impatient, rude, inconsiderate and destructive, basically NOT doing their job just out of spite although if you concluded that they were I wouldn’t feel a bit bad about calling them out.  I am saying that their ignorance as to the impact of their actions…no wait…their inactions…no, wait again; their unwillingness to do their job should simply not be tolerated.  How dare they?!  

How dare they remove from Taylor the ability to call 'getting on the bus by her own two feet' an accomplishment?  How dare they take away from her the ability to fit in by simply getting off the bus as a freshman in high school with all of the pride that she has in her self-sufficiency?  How dare they not even notice and by extension not even care that the children they are paid to assist they have in their own way disabled once more?!   And to add insult to injury Taylor tells me quietly that they are also routinely rude and impatient with her.  My blood boiled and my heart broke.  Seriously if you knew this girl and how sweet she is yours would too.  For God’s sake, don’t these kids have enough to overcome without adding this to it??! 

So yes, I am mad, I am furious in fact and I said as much to the editor of a local news source that I certainly hope will be able to make a difference.  Because people like Taylor and her family have endured so much in their short few years that they have grown to be a shining example in my life and have made a difference to me and to her very dear friend, and yours, Juliana. 

So from me and from Juliana, please recognize the people around you for what they offer and never make them feel less than.  Everyone has overcome something, or is trying to, and deserves every benefit as a result, not punishment for who or what they endure.

I am so angry that I am going to do what I never do: post this before I have a chance to take it back.

Week 2 of home grown therapy and the results are positive.  Although there are still periods of time where Juliana will rest in the recliner, those are more and more rare as the house she must navigate through provides its own form of therapy.  We are never short on opportunities to force her to move and thankfully she doesn’t seem to object.  Ever since Thanksgiving Day when I decided enough was enough, she has had to walk through the house for wherever she needs to go.  At the same threshold I put an end to her meals being brought to her and instead expect her in the kitchen at the table for her meals.

Her day begins by going down two levels to start her day in the bathroom, then up a level for breakfast, then back down again to get dressed and washed for the day.  Then when she concludes her routine on the computer its back up the stairs to leave for whatever the day’s schedule includes.  Monday’s schedule included a surprise 5 mile walk on the forest preserve trail where Nikki expected Juli to use her hands on her wheelchair at specified intervals.  Juliana wasn’t happy about it but she still preferred that to going back to therapy.  The funny thing is most of her aversion to therapy is in her bumped brain because many days her therapy was as easy as resting.

Tuesday’s schedule included a walk back to the garden my husband is planting for us.  That required going down the stairs of one deck then down the stairs of a second deck.  Once on the ground, her journey through the grass to the future garden resulted was the first leg of the full hour round trip.  It also means a workout for whoever is accompanying Juli, reminding her each step to keep her toes forward, stomach in, back straight, eyes forward, and balance, balance, balance!  Who says she has a break from therapy?  The effort lives on and likely always will. 

We also have zeroed in on her diet counting her calories and breaking her meals into six small portions.  Juliana admit that she never feels hunger so her obsession with food has nothing to do with physical satiety and everything to do with keeping occupied and possibly even distracted from more undesirable activities.  The shift must be doing something right because for the first time in months the numbers on the scale are finally decreasing.  I still get overwhelmed with how much work it is managing all components of someone else’s life.  Sure I have plenty of help with Juliana’s need to have a caregiver 24/7 but managing her schedule and her supplies, appointments and medicines is the job of only one person…me.  Oh, no worries, I wouldn’t let anyone else do it anyway so it’s a good thing I won by default.  But the number of details that must be remembered is staggering. 

Thankfully Nikki is very on top of things and reminds me when medicines are getting low and appointments need to be made.  And no sooner did Nikki become the mainstay in our well-oiled routine then she tells me it’s time for her to move on.  I knew it was coming, hoped she would put her degree to good use someday but her level of commitment to Juliana is priceless.  She isn’t gone yet and she gave me the professional courtesy of a few months heads up so we can all think through the changes.  With Ms. Knick leaving in the beginning of June and Nikki leaving then or earlier, we all need to figure out just what our world looks like now.  Juli was not happy when Nikki told her she was going to look for a different job and even dismissed the thought as a pure impossibility.

“You can’t leave and find another job.” Juliana said matter of factly.
Nikki just looked at her shocked and confused, completely unsure of where Juliana was taking it.
“Why Juli, I have been here over a year and its really time for me to move on.”
“Well that just isn’t possible.  You aren’t leaving because I am not better yet.”

And with that the conversation was over.  Nikki was left with her mouth wide open and Juliana was incredulously dismissing the thought entirely.  As the days rolled on we have each had a chance to discuss it in more detail and her perspective has changed.  Nikki eventually explained that because she had improved so much, the need for a caregiver has changed as well.  There is still the necessity for round the clock coverage but the kind of coverage is changing right along with the caregiver.  She had to gradually move through the levels of support with improvements and setbacks but ultimately, like her travels up and down the stairs all day long, she has moved up another floor of recovery.  In her ground level year following the accident her care could only truly be done by Chris or I.  The consistency and oversight required could not be handed over to anyone with less to lose or gain.  The second year stepped up to another level of care followed shortly thereafter by yet another.  Nikki came along and added the role of friend as well as care and it coincided perfectly with Juliana’s emerging personality.  And now that Nikki will turn over the reins to someone else, I can only hope this will represent a new challenge to overcome.  I won’t try and script the next relationship for Juli but I will poke my head in to share my opinions. 

And just like all of the stairs that she now has to ascend and descend this will be as different as it is necessary.   Juliana will miss ‘the Nikes’, both Ms. Knick and Nikki but their dedication over the last year and a half could only be concluded if they didn’t know what we all see so clearly:  Our Juliana is going to be just fine. 

Back on December 21, 2009 when Juliana came home from the hospital for the first time since her accident, we began the process of readjusting our entire home life.  In the 79 days prior to that, our existence was altered and surreal, but it was contained in the managed walls of three specialty hospitals.  Within those boundaries we could sometimes pretend it wasn’t real, often waking disoriented, hoping it really didn’t happen at all.  When Juli finally came home there was a certain reality that smacked of permanence and solitude.  Our best asset was our ignorant arrogance that we could do it.   Her return home however was not to the house she shared with Chris but back to where I lived; A place that hadn’t officially been Juli’s home for 5 years.  The house was already full of people, pets, and lots of ‘stuff’.  No matter, we would fit her in…both of them as it turned out.  Our logistical challenge was to create a place where we could comfortably situate Juliana in her fragile state. 

Bringing her home was in many ways familiar to the first time we entered the doors of our little house in Baldock Hertfordshire England, 26 years ago.  She needed specific supplies, equipment, and food to address her every need.  And just like that frightful exciting first time, she was helpless and needy.  We fashioned a bedroom of sorts out of the center of our family room, ensuring that she would be in the very middle of the activity of the house.  Over the next two years the configuration of her ‘room’ would change as she improved and her needs changed.  We moved her hospital bed from the wall closest to the kitchen to the wall furthest from it.  It was our meager attempt at quiet and solitude for her healing brain.  To try to provide her privacy we hung curtains to interrupt the open floor plan of our tri-level home in hopes that it would block out some light and give her the chance to have the illusion of some time alone.  Of course we were fooling no one, Juli included, but the sleep needs of the brain-injured pulled her under in spite of the commotion that defines our life and our bustling house.  It was a good temporary solution but as the months rolled by the longevity was unsettling.

Then finally, both suddenly and gradually, a day has arrived that I once feared would never occur: Juliana is out of a hospital bed in our family room and into a real bedroom.  I told you this was coming and so this might not be a surprise but it is so noteworthy because it really is the closest thing to settling into stereotypical normal and that phrase that drips of mediocrity has never sounded quite so appealing.  The ‘Pink Room’ as it has been known since Cheyenne last inhabited it is on the top floor of our house, across from both my room and Delaney and Mackenzie’s room.  There are nine steps to get there from the kitchen but it hardly mattered because last night I watched her take them nearly as fast as you or I.  Those steps that were once an obstacle are now nothing more than the road between awake and asleep. 

I recall at the Abilities Expo last year we considered installing a motorized chair that moves up the stairs, but here we are a year later and have moved beyond another ‘necessity’.  So instead of motorized stairs we went low tech and my husband installed a railing up the stairs and down the hallway to her room and just like she had to do from the family room to the kitchen, we will expect her to walk up the stairs to get where she needs to go.  And last night for the first time, she walked into a bedroom that she can call her own.  ‘Her own’ that is except for her very messy rock star roommate.  Yeah, another bonus is getting Chris off the couch and getting him and all of his belongings into a place designated for them.  It’s a work in progress, decorating will take some time, but that is secondary to getting situated with all of the necessities that we had loosely organized throughout the family room, but it’s a task we have no time limit to complete. 

It’s kind of funny though, if I were to have been told back in those dark 79 days of 2009 to ‘keep strong because in 3 years you will be within the comforts of your new normal, maladjusted life’, I would have sobbed uncontrollably…3 years??  In fact, I am certain that is what one well intentioned nurse did try to tell me and sob uncontrollably is what I did.  But here we are at that point in our future and it doesn’t hurt so much after all, especially because I can see that there is so much more to come. 

As I find myself in a position to help others travel a similar road I toggle between telling them how to hang on to hope and how to live with the reality and pray I am affective.  I find I learn as much about myself as I attempt to offer and the latest family we met has moved us deeply so plan to see plenty about them in this blog in the coming months.  All of you out there who have effectively prayed my daughter into the ‘pink room’ she now adores, please share your faith and your positivity with a 12 year old boy from our community who was struck by a car just one week ago as he begins his battle with a traumatic brain injury.  Alex Fitzgerald has a tough road ahead of him but this path is full of uncertainty and the pace of his recovery has every possibility of being much faster than Juliana’s.  I pray that is the case and I pray that this family can be as blessed as we have been by the support of all of you.  ‘Wonders’… that is what we have achieved together because Juliana has regained a life, different than she expected, but more tender, deeper and full incredible spirit, strength and influence that pure ease could never deliver.  I wouldn’t recommend it as a way to grow up but once the die is cast, I am humbled watching the emergence of a champion. 

I plan to watch that happen to Alex as well.       

I got some really good advice from a very close friend.  He said, “Write about what moves you.”  It was the tail end of a conversation about how incredible Juliana is doing and how we both feel about it.  Juliana is progressing right on out of needing me to do her talking and that feels good. It’s an unfinished journey but the destination is known.  I figure as soon as the girl can type more effectively she will be putting me out to pasture! When that happens I will find something new to do with my blog and move beyond Juliana to write about what else moves me.  But until that time you will read my interpretation of her healing and you have to endure my philosophizing and agonizing along the way. 

But no agonizing today because I want to be so bold as to say that Juliana has turned a corner. (Always remember folks to read these updates with your TBI glasses and see the ‘corner’ for what it is: a very wide curve).  TBI ‘corners’ are not something you even realized you turned until you gradually cannot see the former road behind you.  Juliana is definitely in a new part of town and the property value is going up.  Little things are starting to come together; they have in fact been coming together for a while in their accumulation until you cannot deny that you really have something.  It is no coincidence that this positivity accompanies her discharge from therapy.  They recognized the ‘corner’ before we ever did and thought we were at a good breaking point. 

She is walking with more steadiness and balance; she is holding her head more upright throughout the day.  Her energy has sustained throughout the day and eating is nearly on autopilot.  All aspects of her recovery are moving in the right direction and that includes the thing I want so badly: her speech.  That’s right, the clarity that poked its head through our door a few weeks ago has subtly, slightly and gently returned.  I know that gain may take a while to cleanly adhere to her brain so I am aware it will slide back into the shadows.  But in the meantime we are having lovely reminiscent conversations.  Could this be a result of the medicine or is it our animated praise over her efforts forcing her best efforts forward?  Or could it in fact be the result of a mysterious Monday morning that began with her so completely disoriented and confused that we feared a small seizure had occurred through the night.  It was momentarily scary because for a half a day we uneasily just watched her behavior with trepidation only to watch her blossom upright and we questioned our own active imagination.  But seizure or not, improvement is tangible and while we marvel in the articulation attempts, we also enjoy the content of her speech. Don’t get me wrong, it’s a long way from enough to let her talk to everyone unaccompanied and she sounds nothing like her former voice but like everything else, it is clear she is emerging as someone entirely different and we will watch in wonder as she does.

The comfort and healing that we feel makes the timing right to begin the next chapter of story sharing, perhaps the chapter that makes all the rest of this journey make sense.  Everyone wonders why life hands them the circumstances that it does but often we don’t get clear answers.  I have an advantage though because I can see people benefiting from our experience so I want to keep moving that forward.  Toward that objective we got a chance to speak to a group of teenagers about our experiences in the last 2 ½ years in an attempt to share more than the facts, but how what happened to us changed our life.  I was pretty stressed leading up to that day because I deeply wanted to leave the right message.   We have learned so much and it felt so much like it needed to be felt on a personal level and that is what I tried to convey.  So thank you to Tinley Park High School and Cassie Gaines for inviting us there to speak to you.  It was an honor and a privilege I can only hope to get again with other students.

Check out the Latest News page here on the website for links to the articles on the high school appearance and also a link to the newest item a generous supporter has created on behalf of Juliana because as much as I might be moved by more than that beautiful girl, I will never deny that it all began with her.  Apparently her power transcends me and I am proud she also moves you.

The party is over though the gold lingers on.  Since we painted her AFOs and her gym shoes there are constant reminders of the party she still likes to talk about.  She also likes to watch her page for pictures of the growing flowers that people might post on her wall.  But in the middle of it all, there is still so far to go.  I want to just allow her to enjoy her days and live in the moment but the parental part of me cannot let go of the push of forward motion.  We still have miles to go before we sleep…

Juliana’s walking ability has reached a plateau and that concerns me a bit.  I see her left foot taking the dangerous angle inward that we corrected with surgery and the baclofen pump less than a year ago.  This injury seems to be the gift that keeps on giving because even the problems we think we solve always have the risk of resurfacing. 

This week marks her last at RIC Willowbrook for a while and that means we are in ‘Do-it-yourself’ mode.  I hope we prepared enough in advance to backfill her time while providing the illusion that she is getting a break.  She will go an additional day at Next Steps Chicago where they really push her hard.  She will also ride Eli an extra day each week.  We will continue to find excuses for her to walk distances so that she gets the exercise she desperately needs but the reduced oversight has gone badly for us before.  She has also agreed to use a recumbent bike if I get one so I will look into those this week.  She will still have the ability to see the rehab doctor during her absence so I will just try to be as aggressive with that schedule as possible. And on we will go…

We are making a few changes around here that are either right on time or long overdue, I can’t tell.  Juliana is finally moving into a bedroom!  That means no more hospital bed, no more safety rails, no more trying to sleep in the middle of the family room of the busiest house on the block.  It will take some painting and installation of handrails up the stairway and down the halls but I am gratefully married to a man that can do absolutely anything.  I know she is excited about having her own private space and I am grateful to have her across the hall from me.  It will make the middle of the night trips to her bedside a much shorter trip.

I met several individuals willing to help with ‘Speech Boot camp’ so I will start planning that out next week.  Speech continues to be my largest source of frustration and disappointment and I can’t seem to get over feeling cheated that the child I communicated best with is now the one that I have lost the most.  It’s ironic, don’t you think?  She started on a new medicine that gave us immediate and startlingly incredible results.  For four days straight her speech was loud and clear and non-stop.  I was so excited and gave all the credit to the new medicine.  Then, as quickly as it started, moments after I bragged and beamed about how wonderfully she was speaking, it evaporated into thin air.  I was so sad, so so sad.  It was like she came back for four days and I was just so happy to see her after so long of being away.  We even talked about how effortless her speech was.  She said she was relieved because she was starting to feel like I didn’t even understand her and it was upsetting her.  Honestly sometimes I can’t understand her just like everyone else.  The only difference between me and most other people is I can’t really just stop trying and ask someone else…I am the last stop.  Long ago when we didn’t know where this whole journey was taking us I was trying to let Chris know that if the time came, he could walk away gracefully, no hard feelings.  I explained to him that regardless of what he had to do, as her mom, I was going to always be with her.  I compared her ongoing care to having a baby.  When that baby needs its diaper changed many people can volunteer but when there are no volunteers left to do it, it is the mother’s job.  The phrase between us that held so much significance was “It’s my diaper to change.” 

So, OK, Juliana doesn’t have diapers, I don’t want to leave that impression but ultimately her care can be stepped away from by anyone and then it is just my job.  I am extremely fortunate that I have never been left to do it alone though.  In fact, this house is so filled I couldn’t find a quiet moment if I purchased it!  But the point I was trying to make all those paragraphs ago was that for four days…FOUR DAYS…Juliana’s speech was so good that EVERYONE could understand her.  She was amazingly sharp and quick and understandable.  When it stopped I cried, a lot I must admit.  For her, for me, for my time and my sanity.  I feel like someone is muffling her, choking her, cloaking her in a muted state but teased us with a taste of what improvement can look like.  I have no idea what brought it on otherwise I would have surely begged borrowed or stole for it to stay.  Chris tried to look at the bright side that it was the longest stretch of good speech she has had to date and that we should look at that as a glimpse of the future, not a loss from the past.  Yeah, yeah, I know but in the meantime that doesn’t make our communication any easier.  Enough complaining because we are going to try to make moves toward rigging the system with our ‘Speech Boot Camp’.  That brief interlude of clarity might have been put in place to make me that much more determined to hear it permanently.  Just one more zigzag step toward her future.

As you have likely seen, Juliana’s party was a big success.  She greeted almost everyone who attended and seemed lively and engaged the entire time.  She never tired of visiting and never asked to go home.  I was so incredibly happy for her because she was incredibly happy, in her new understated way.  When we got home she thanked me over and over and couldn’t stop expressing how much she enjoyed the night.  She slept restlessly, waking me to ask if anyone posted pictures on Facebook.  Since I needed to get up for work at 430am, my joy was wearing off after the third trip downstairs to hush her back to sleep.  All in all, it was a lot of well spent time, energy and money because she legitimately anticipated and enjoyed the night in a way she rarely is able to enjoy. 

She received so many cards, gifts, gift cards, (mostly to Olive Garden or Starbucks), and she will happily use them all.  Right after opening her cards she wanted to get onto Facebook to start her thanking people and she asked if I could do it again in this blog.  So, for all the cards, letters, pictures drawn and gifts received, Juliana and I thank you very much.  As she typed her messages she needed help but she was insistent the message was inclusive of the gift she received so “they would know for sure it is me writing it.”  Her appreciation was touching and I am so pleased you gave her the opportunity to feel it.   It is all such a refreshing and comforting change from our weekly visits to the same location during American Idol days a year ago.  During those parties she stayed up reluctantly and was not interested in anyone that attended, just having her dinner and making her way back home.  Its times like this, her party specifically, that I can see the progress through the comparison. 

Celebrating the milestones together is just one more way we have bonded in search of the accomplishment known as recovery.  And as we all work together to help Juliana find a new life, your input has been invaluable. I read everything that is sent to me, consider all my options against what we have tried, what we still should, and what we are willing to try again.  Several people have volunteered to take part in my experimental boot camp and the ideas for how to make that come to life are forming.  I am humbled by the great people that surround me, willing to help Juli, willing to help me and I always feel as if I don’t express enough gratitude.  For example, Ms. Knick provided the cake for Juli’s party; Jaime Alyinovich of Sugarbomb Bakery created the designer cupcakes; Sarah Mitchell and Mike Schick helped Juli and I make the flower pot gifts that she gave to everyone; her sister Cheyenne helped with her hair and makeup; my sister Lori Rago and the totally awesome group we formed with Chris called the “James Gang” (Nancy Schoenfeld, Jennifer Conway and Jill Michalek) made the cake pops and decorations and have all around been so supportive of everything I try to do, always rolling up their sleeves for any task.  It makes me so grateful that my parents expected my sister and I to be kind to each other, even when we didn’t want to.  It certainly makes being friends now a whole lot more fun. 

I don’t know why I have been so lucky to have wonderful people in my life but I have grown reliant on the expertise that surrounds me.  So when I have a concern, like Juliana’s speech, I turn to this group in hopes of reading that single nugget that just might be our pot of gold.  I have high hopes that I am right but it just might give us the edge that she is also becoming more social.  Motivation behind actions always yields higher results.

So as much as the party was fun for all what really punctuated it was the performance by Chris in Juliana’s honor.  She specifically requested he sing ‘Juliet’ which he wrote about her (of course) so listening to the words is usually emotional.  Through the whole song she was tugging at me to say something as I tried to keep the video camera steady.  Since I myself am a huge Medina fan she was kind of interrupting my moment of enjoyment but the tiny pinch to my arm brought me back to mommy reality as I leaned down to hear what she was trying to say.

“I want to go up there and hug him.”
“Juli, he is singing. Can you wait until he is done?” I pleaded with her, mostly so I could keep watching and listening but also because I knew the path to the stage was cluttered.
“I can wait…until the end of the song.” That was all she was going to give me.
I had to concede, “Fine”.  At some point in the last two years Juliana became the boss.  (Ok, if I was completely honest I would have to admit that there were many times the kids called the shots but I did my best ‘fake boss’ imitation every chance I got.) So in the last verse of the song I handed the camera to my sister to finish recording while I prepared Juli to walk up to Chris.  I could see he was lost in the moment of the song when his eyes caught sight of Juli walking toward him.  His expression softened ever so slightly to show the affection that he genuinely still feels for my daughter and I was a little warmed by it myself as he reached out his hand toward her.  I have to tell any of the skeptics out there that think Chris only ‘sticks around’ out of pity… I assure you…if you watch the exchange between them at the end of this video you will doubt him no more.  He still carries a genuine affection for the girl he has already loved in sickness and in health.  In fact, in the past several months as I have seen her gradually react to her surroundings I have also seen a change in Chris as he relates to her.  With his ‘caregiving’ responsibilities mostly in the past, his time with Juliana gets to be more social, more conversational and more like a couple.  She may be turning into a new person but it sure looks like I am watching him fall in love with her all over again.

Yeah, I hear your “Awwwwwwww”…as if we needed one more reason to love them._

Her birthday week is building to its final event: Her birthday party at Blarney Stone here in Oak Forest on Sunday April 1st.  I really hope to see some of you out there around 3.  Chris will start singing at 3:30 but he will only sing for a short time so be sure not to miss it!  Juliana is really looking forward to it and so am I to see her really enjoy a party she helped plan.  Since she doesn’t usually display her feelings I will be sure to ask her often if she is happy.  When the golden week is over we approach another ending just 2 weeks away: Therapy.  Her time at RIC for physical, occupational, and speech therapy is drawing to a close for another few months and we are coming up with a few good replacements.  The idea is to provide her with things to do that will keep her mind and body healthy and engaged but aim for things she finds enjoyable.  First of all we are going to plant a garden that Juliana will help us tend.  We have a rather deep yard so it will take some time for her to get all the way to the back but if it means picking fresh strawberries and tomatoes I think she will be happy to do it.  We are also looking to add another day of horseback riding.  Those are both great for movement and involvement but I am still seeking what feels like the real pot of gold to me.

So I have this idea and I need your help. 

It’s just a theory but it is an experiment that I am willing to try.  I already discussed this with Juliana (as I might as well do now that I know she reads my blog) and although she isn’t thrilled with the idea she has agreed to go along with it.  The thing is, it’s just an idea but one that I cannot execute alone.  This is where… someone ‘out there’ comes in.

You see, I still maintain that Juliana’s biggest obstacle is her speech.  It really limits the company she keeps and makes conversation a strenuous exercise for all involved.  Her statements are relatively complex and amusing too so navigating what she is saying is a real challenge but very rewarding.  I want more people to enjoy chatting with Juliana as much as I want her to enjoy chatting with them.  You already know how badly I want her to improve her speech, I have moaned about it endlessly.  But here is the thing: I believe she can talk better than she does if only she gets the right kind of practice under her belt.  When reminded/asked/begged to do so, she can speak clearer and louder than she normally does.  This tells me the problem is not completely a lack of capability but lack of practice and more precisely, habit.  She has had lots of speech therapy and it has ranged from interesting to useless but even the best of sessions ends too quickly before the pattern has fully entrenched itself in her brain.  Sure we practice her lessons at home, (there is really no way NOT to) but still, the short bursts of speech therapy, which has changed therapists and methods dozens of times has never really taken root.  Enter my idea…

I want Juliana to go to a “Speech Boot Camp.”

If such a beast exists, I am unaware of it.  We certainly haven’t heard of something like this up until now and perhaps that is because it is a bad idea certain to fail.  But I choose to assume that the attempt is worth a try. It won’t require medicine or surgeries and the greatest harm is the potential for her intense aggravation.  It’s time to pull out the Phil-ism and remind Juli that “it’s nice to be liked but it’s not necessary.”    I have been accused of being too aggressive in my approach of her care but having walked this road for nearly three years now I would challenge anyone’s definition of too fast.  If a burst of hard work has a chance of being successful, I would gladly take the lumps that Juliana’s slow motion will surely try to deliver.

I want her to spend dedicated, quality, and intense time focusing on the skills that are literally at the tip of her tongue.  If what she needs is practice, exercise, and repetition to re-form those pathways in her brain, what better ways than to have her concern herself with nothing else for a period of time?  I have no idea if it will work. It feels like it would. I see her speak better when pushed so I know she can it just has never really stuck.  I really have no suggestion from any professional or even an amateur corroborating my theory.  But I know that Juliana has the ability locked inside of her to articulate and enunciate and she just needs to practice it along with improving her breath control.  Before the accident, Juliana was a chatterbox with a lovely and powerful voice used for speaking and singing.  She must have those skills still dormant somewhere, right? 

Ok, well let’s pretend we all agree this idea is worth a try.  I can tell you this much, it cannot be anyone that already talks to her daily to be the one to execute.  We are too close to her and she already has animosity towards us for all that we make her do, besides, we already understand her (usually). This brings me right back to the great numbers of you out there hoping there is at least one…I am looking for a person, perhaps a team of people that are willing to pull this idea into reality.  I know that recovery from a brain injury takes a long and deliberate amount of time but I have also witnessed incredible leaps in improvement that were started ‘randomly’ and resulted in noticeable improvement.  I am looking to tamper with that randomness and coordinate a program of intense message delivery. 

Specific request time:  I am looking for a few qualified individuals to contact me directly through the contact page of this website to make this process happen.  I would like a 2-3 week program consisting of at least 4 hours a day full of activities centered on specifically articulation, enunciation and breath control. I believe in miracles but I also believe that God helps those who help themselves and in this case, I am really tired of waiting.  Besides, what is the harm in trying?  Assuming I get the right people to come forward, we will talk about terms.  I intend to record this process to evaluate the before, during, and after and who knows…this might be a huge success that others can truly benefit from. 

‘Cutting edge’ or ‘done before and failed’…let’s just see which side of the line we fall on, shall we?

Who’s with me? 

In honor of Juliana’s ‘Golden’ birthday I planned each day of the week, starting with last Saturday, as a day with something fun.  I typed it all up, rolled and tied it into a scroll and presented her ‘gift’ to her like the royalty she is.  I told her, “you know my itineraries are usually legendary but this one is just average”.  When she saw that each day included something a bit special (out to lunch one day, out to breakfast another, out to dinner still another) she was pleased.  But when she noticed that next to the activity each day I had typed the same bold statement, she even smiled.  It said: NO THERAPY…Yeah!   You would really think they torture her at therapy the way she dreads it so much but no sooner does she leave that place then she is looking up her therapists on Facebook wanting to invite them to her party.  (Strange how this injury has mixed up her perception). 

Yesterday she said that of all on her ‘Birthday Week Festivities’ she was most looking forward to today.  On the surface that would make sense even if you weren’t aware of any of the other ‘festivities’ I planned, simply because it is her actual birthday.  However, when I asked her “Why” she said “Because you told me a long time ago that I could eat the chocolate bar Chris brought me from Switzerland on my birthday.”  (Ummmm…again, strange and… where did I put that candy bar??) As I searched the logical places for the candy, trying not to appear to have misplaced it at all she said rather loudly (for her) “and because I hate your work”.  That might sound random but conversation with Juliana can sometimes be an exercise in our long term memory retrieval because her statements may apply to a conversation hours before.  How she keeps track of it all is partially attributed to her new need to be organized and partially due to her uncluttered mind.  She doesn’t have to think about work, home, kids or finances so she has plenty of time to obsess and catalog any of the statements we made in passing.  Word of warning to other caretakers of individuals with TBIs…they are a fascinating lesson in keeping your very precise word!  I recalled though that her ‘hatred of my work’ was in relation to a conversation we had earlier in the week where she begged me to take a day off to spend with her.  It sounds as if I work night and day but in actuality, while I am working she is usually at therapy anyway and I arrive home most days before her.  She simply likes to know that her ‘people’ are around for her all the time.  Sweet comfort like the chocolate she craves so badly.

Speaking of…I eventually (and might I add in the nick of time) located the missing Swiss chocolate in time to have it accompany her fruit plate of a breakfast so her day started off successfully.  After breakfast I wanted to get a quick start on our day but my need to move quickly doesn’t exactly ‘fit’ into her life (or mine for that matter) anymore.  She was not happy when I told her there was no time for Facebook today and so I modified my schedule and gave her time to read her messages.  It only took a moment to read just enough ‘happy birthday’s’ to her to have me tearing up.  Every parent loves their child but when others love your child, it is such a concoction of pride and humility that moves me daily.  Today was one of those particularly potent days so thank you for that, from all of us. 

Then it was off to the mall to buy an outfit for her birthday party.  The dress was actually the easy part although gold clothing is far more scarce than you think.  Sarah Mitchell did the leg work for us and found a dress just perfect for Juliana the day before and put it on hold so all I had to do was take her there to try it on:  Lovely and appropriate.  Good job Sarah!  The trick from there was the shoes to go with it and bout that Juliana said she was ‘concerned’ which initially amused me.  She rarely shows concern for her appearance including her clothing.  Then she explained to me that she was sure we wouldn’t find shoes to conceal her braces (ah ha) so I told her she was not going to have to wear her braces to the party. She had a mixture of confusion and the same concern on her face.  After a long deciphering session I learned that in spite of her initial hatred for the devices she admits to preferring wearing them when she walks.  It could be because walking without them uses muscles that are weaker having been stabilized for her by the AFOs or it could be a subconscious security that they give her.  I suspect it is a dose of both.  To satisfy all requirements, we found a cute pair of boots to wear without her braces that will hopefully give her a partial impression that she is being ‘braced’.    

After the mall we headed out for lunch and try as we might to suggest a new restaurant, once she was offered Olive Garden she wouldn’t be strayed from that thought.  After lunch her request was to rest in bed without braces until it was time to go to her dad’s house for dinner.  As she dozed (or more accurately zoned out while wide awake) Chris played his guitar and sang. 

Sounds pretty golden to me…