Right around the corner is the 2 year anniversary of Todd’s original injury. We are hanging in there and more in love than ever, “It’s true, I have a great deal of affection for you!”, Todd says. We continue on with outpatient therapy and have begun hippotherapy once a week. Hippotherapy is so great for some one like Todd and many other individuals with disabilities. It is on horseback and we do it in Marin County! It really helps the progress in his other therapies….. and is amazing for the soul! For those of you who didn’t know, Todd has a background in riding as a young man. He rode Hunter Jumper on a horse named Rexie back in his Kansas Days! That explains a little doesn’t it! ;) “The horse ranch is amazing!” and the team at Halleck Creek in Nicasio are tops.  We continue to work hard but are also looking ahead and exploring what our future may have in store for us.

I want to call you attention to an independent documentary called

Life.Support.Music

http://www.lifesupportmusic.org/

This film documents from the beginning the brain injury of artist/musician in New York and his survival. It is one of the best accounts that we have encountered and amazingly similar to what Todd has endured. It also highlights the support of the community to which he belonged much like we have seen and experienced first hand.

For a brief period of time it can be viewed on line in its entirety through PBS. Here is the link. Please don’t hesistate, it is sooo worth it.

http://video.pbs.org/video/1174469056/program/1154485580

For Todd who has no memory of this period of his life, it has helped him gain a unique perspective on what he has survived. It might for you as well.

It seems to be one of the most common questions asked of Todd when we meet with a long lost friends. “What do you remember from Amsterdam and your accident?”

And the answer is …….

“Nothing.”

From Alex:

“There was a little hitch with the PO Box causing any recent mail to be sent back to sender. Please note the PO box has changed the rest remains the same. Sorry for any inconvenience. if your mail was returned please try again”

People can contact Todd and Alex and send donations to:


Jeffery Todd Blair Special Needs Trust
T.Blair & A.Ismerio
P.0. Box 23084
Oakland, CA 94623

We have made it to the other side of the most current of transitions… Now, Todd is an active participant in the world of outpatient therapy. It is a whole new level of different and an oddly busy world. Regular comings and goings are a daily piece of the equation, complicating things and schedules that can be inflexible. Adaptation. The therapist home visits are a thing of the past, the once was. It was very necessary for the therapist to come to us for the period they did. It was an amazing period of time beginning in a wheelchair and ending with stairs, some major developments and accomplishments! To merely be awake, clean, and fed before therapy began, was all we could muster when we first returned home and a tall order indeed.  The changes are quite telling of how far we have come to in order to be able to tackle the new hurdles, distractions, and challenges of the outpatient environment. We are becoming familiar with the new team of therapists and the approach to Todd’s needs is naturally different. This is a welcome difference. As the therapy system changes you slowly become more and more responsible for managing, maintaining, and integrating a great deal more on your own. Slowly we gain independence. Our home is now a sanctuary separate and integrated to the daily therapy regime. It is less a public sphere and is now a much, much more private environment for us (which is a very nice transition).

The holidays were kind to us. The flu reared its head but we actually enjoyed doing nothing for a change.  We have not had such an opportunity surprisingly enough. There has been so much work for us on a daily basis. Our first Christmas at home since the accident was definitely something worth celebrating and we spent a great of time just enjoying one another alongside Todd’s increased independence and healing.

Then Todd’s birthday followed….. he now has a survived a half a century! Todd had some difficulty wrapping his mind around it……and when asked how he feels. “Older now.” I remind him that much of what he is interpreting as “older” is actually the stiffness and physical limitations that are a result of the injury/ prolonged bedrest. In time with continued physical and occupational therapy these “issues” will mellow.

So many milestones for us and spring is right around the corner….upon us. Last February we were landing in Oakland Airport and leaving Amsterdam which had itself become familiar and safe. Our home was now the unknown.

Todd continues to plug away, with a smile on his face and rarely utters a complaint. It is a great challenge to make life work and give the commitment of time and discipline required by Todd’s therapies. You must implement the therapy learned during the day and find time to cook, clean, and meet life’s many demands. That is life for you though, an amazing juggling act.

I say now we are living the dream….. and someone else’s nightmare 

What a joy it is to wake up every day with a guy I was told would most likely never exist. Not just once or twice, but over and over.  It is one of the things that an injury of this magnitude can do to people…. to strip them/you of hope and determination. (Luckily we did not cave under the weight of this potential mindset!) I have become so aware of the impact this has on other families and stories different and like our own.

Now that we are part of the outpatient community we are much more connected to other injury survivors, caregivers, and some of their stories. It makes us so appreciative of our community and life.

A community that we are looking forward to connecting with again. Keep your eyes out for us.  We love you and miss you.

Every time you settle in, things change on you… or us as the case may be.

 

This is both cause for celebration but also makes Todd and I work harder each day, each week, and each month. Always having to adapt and be prepared for what is coming next. The next step is one, which we can glimpse only the smallest piece of…it is a bit like hearing a whisper from another room.  You can only sort of make out what is being said……… Filling in the blanks? Well that has never been too successful or helpful. So you want to see what is around the corner… but you can’t until you get there.

 As Todd moves forward in his recovery there are two main issues that are part of each and every day.

 Safety. When we first came home I used to check if he was breathing. It changed so much once he fell asleep and was relaxed in his own bed; he was so quiet I had to keep checking by gently putting my hand on his chest to see if it was moving.  I was so nervous about him sleeping on his back (even with pillows)… partly due to some warning I had encounter along the way. (Sound familiar?) Then over time it transformed, as he began walking and standing, into following him everywhere to make sure he does not fall. I find myself wondering when I won’t have to be so concerned about this………it is funny because when I talked to someone about it the answer was ………comes with the territory of walking on two limbs! (So I guess crawling is out of the question?) Everything is so different on this plane, even driving if Todd is in the car. It is hard not to consider the possibility of an additional injury, if just for a fleeting moment. I suppose fear is a natural piece of an equation when you have survived as much as we have…and probably for some even if you haven’t. It is not something that rules the way we do things necessarily, but it is always in the recesses of your mind. When are you ready for the next step and when will that next step be so natural that it doesn’t need to be thought of anymore? It is not uncommon for Todd to overestimate his abilities although he is becoming increasingly aware and mindful of his limitations. I am constantly trying to find that place that keeps him safe and allows for the utmost independence and autonomy.  Something he had been without for way too long. Each day, each week, this changes and we are along for the ride. When do we get to take the training wheels off the bicycle? Actually we should have training wheels fabricated for his bicycle!

 Then once out in the world it then becomes the battle of the bathrooms!  We are slowly emerging into our community….the outside world.  Small steps and very tiring for Todd, but extremely necessary and important piece of recovery.  So, Todd is not remotely ready to be alone. He is easily disoriented, overstimulated in many public situations, can lose his balance when tired, certain movements are limited. So when we are out and about there is this tug of war……. I head for the women’s and he heads for the men’s. Lately I lose, out of respect. So I am so thankful when the bathrooms are at least single occupancy.  Apparently we do not live in a world of different sex caregivers… All “accessible” bathrooms should without a doubt be unisex! Again something I never considered until being where I am now and will remain for some time. Cannot tell you how funny/awkward it is when a guy enters the men’s bathroom and I have to make my presence known! Yikes. This is a phase I am sooo looking forward to moving out of, it won’t be soon enough!

 Disability and Access. Now that we have the placard where are the parking spaces? Answer in parking lots mostly. So if you are heading to a neighborhood like Rockridge with a parking lot on one end, you have to cross your fingers that the spot you find is in a manageable distance in relationship to your destination. The one streetside handicap parking spot I did find is the most appalling thing I have ever seen. The sidewalk damaged and raised to such a degree that there are caution signs, a wheelchair would have a very difficult time navigating the sidewalk in this location. I am so thankful our needs are ever changing on this front, while becoming increasingly aware of a reality that was never my own until now. It was for the small margin …well it turns out not to be not so small.  Much of the time when I do pull up to a place with its two or so accessible spots they are full. It really makes me think about those who have even greater limitations than we do…

 With Thanksgiving right around the corner we have loads to be thankful for. Being home is just right at the top of the list. Todd here home, happy, and alive…that is tops. Here we are in a place that the doctors, a psychiatrist, and many more said or thought could never be attained. Good thing I am not easily convinced or broken! Now Todd and I are well on our way to healing and claiming of our life together. It will be some time before I am able to return to work but our family is strongly urging me to return to studies for my licensing exams, all seem close yet so far away. It is no matter for today I am happy and truly enjoying Todd’s company so in the moment it is good.

 We have big changes in the road ahead, which we will tell you more about. First we must wrap our minds around it and second get there. It would be like trying to tell you about a trip before it had taken place. Nonetheless after the holidays there will be changes, but we are very thankful that we have peace for the month of December. Any amount of change in routine and otherwise is extremely demanding in the world of TBI where the combination of rest and routine form the foundation of recovery.  

Hi everyone, it’s been a little over a year now and Todd continues to make amazing progress in leaps and bounds, his inspirational recovery was largely due to the support of his friends, family, his amazing strength and will, and awesome wife Alexandra. Still, recovery is resource intensive and as much help as possible is always greatly appreciated. Now that Todd is back home here is how to help or get in touch (all info permanently archived in the How To Help page)

New address:
T.Blair & A.Ismerio
P.0. Box 24612
Oakland, CA 94623

If you would like to send a check please send to the above address but write the check out to:
Jeffery Todd Blair Special Needs Trust

A new Paypal account is also being set up but for now pls. continue to use Susie Maunu’s. Alex will update with new Paypal info soon!

Stay tuned for new blog entry on how far Todd has come in the last few months including a special surprise appearance at the SRL 30 Year Anniversary and Mark Pauline Birthday Party!

There is a certain freedom and discovery that comes with being home that can be found no place else. There are little pieces of Todd that he can find and recover around each and every corner. Many pieces are just there and come out piece by piece day by day when you least expect it. IN the conversations you find yourself amused by his creativity and then just by seeing him there. The matter of fact manner in which Todd tells you about something he is excited about. …. he is so eager to pick back up. No matter how much time and effort it takes he just keeps working towards the goal of getting back to working on stuff.

Time is the most elusive thing we find in our days. The therapists come in many a weekday and asking Todd what day it is. For us it is not really Monday through Friday etc. That time frame is almost irrelevant and yet I make sure we check the calender every morning if only to be able to answer that damn question correctly!  Time flies and we are just trying to keep in step.

Some of you know and some do not so I will clarify. Todd is engaged in a program called Rehab Without Walls. Through this wonderful and fantastic alternative to traditional rehabilitation programs Todd is making the most amazing strides in his recovery. The program allows Todd to continue to receive therapy and flourish under the guidance of his skilled therapy team while we can begin to reconnect life outside the facility and engage in/with our community. This allows Todd to continue (and begin) his recovery at home among the familiar. We have seen an amazing outcome already and we are just out of the gate (so to speak)!

Todd’s weekday is full with therapy and naps, not much different than at Herrick except how all the in between time is spent. The therapists (same team as when we were in the rehabilitation: physical therapist, occupational therapist, speech therapist, neuropsychologist) come to our house on an individual schedule that fills the weekdays and Todd’s progress is wonderfully exciting. Here is a guy that a few months ago could barely hold his head up for an extended period of time. Now he is walking around the house…. Oh yeah and we already are ditching the walker. Nothing makes me happier than the smell and image of Todd cooking bacon in our kitchen! Delightful. Except perhaps seeing Todd make our coffee…. He still needs me close by but we are working hard towards independence for us both.

At home, our world and life is a sea of discovery…… with lots at your fingertips to draw upon. The benefits of Rehab Without Walls combined  with being home are immeasurable. Although it is hard to address all the progress without acknowledging the wonderful foundation laid by our therapists at Herrick (where he built up his strength and stamina) and notably the shunt reconstruction surgical procedure……things are improving at a whole new pace.  Todd is a Rokstar…or the energizer bunny. He just goes all day and lately all night. We are up sometimes 5-6 times a night……this can lead to some very tired pair of kids but it is all in the name of progress. Sometimes we are short on the required hours of sleep but we manage. The first few weeks of adjustment were, without a doubt the toughest and such a new equation. As we adjust we are surrounded with memories, friends, and best of all daily progress.! Todd remains in a fragile place in terms of his brain…it is  a constant job to manage his energy to make sure we can go through our day and meet its demands.  

Each day we encounter things that were not possible just weeks, months, days ago as I watch them realized before my eyes.

We have gone from a tall boy wheelchair to a standard (it took forever to make this transition) all red tape, what a pain!. Went from using a walker to “look hon, no hands!” Playing soccer in the house (kicking a ball for balance)! Cooking is by far my favorite time with Todd when we sit in the kitchen debating the evening’s menu and debate the approach for the preparation of the meal. Despite the injury he has managed to maintain his approach and love for cooking and his amazing disposition! Words and phrases have transformed themselves into conversations. Laughter. There is so much to share but most fundamentally is that Todd is improving at an all new steady clip. We are starting to get out, starting to see more of the world and friends…….it is overhwhelming how many folks we haven’t even seen yet. 

Because of all the surgeries and virtually every complication under the sun. Todd is not really a year post injury as it is on the more literal level, but more like many months if your were trying to measure progress.  So as you listen and watch to see how things are progressing keep this in mind.  It is impossible to imagine where we will be in a few months but I look forward to getting there.

The most important thing I can convey is that we are in a wonderful place in Todd’s recovery looking forward to the future. It is a far from easy for either of us, but it IS enjoyable. I tell Todd each and everyday how amazed I am and proud.

 It is without a doubt demanding time for us both (has been for the last year), but we are hard workers as Todd says. The best therapy for us both is to find something to smile about each day…….which is definitely a tall order at 3 in the morning! 

     It has been 3 weeks since we transitioned home and what an eventful time it has been. The first few days were extremely challenging with very little continuous moments of sleep for either of us. TOUGH STUFF. Then we began to settle in, find our footing so to speak. Todd is making wonderful (if not mind blowing) progress each and every day. This is a completely new reality for us and those who have worked with him. These things in the past have been measure in weeks and  months, not days and hours. The shunt revision surgical procedure has completely altered our equation. It is immeasurable. The range exists from the most subtle to the more obvious.

     We are no longer the victims of an accident but the major participants in an amazing survival story. It has been this way for a while. Our commitment to one another is unwavering while, daily, we explore new equations and answers. When an obstacle is encountered, we put our head’s together to find a way around it or a new path all together (important to note: there are times where one of us needs to do this on his/her own, often that is Todd). We both smile when we have figured it out, quite pleased with ourselves! Shamelessly kissing our way through it all. This is a time of great accomplishments in small but HUGE packages.

     As in true Todd style he takes the most challenging path first and if that proves too difficult he takes it down a notch to find an easier pathway. It is this drive and determination and way of getting from here to there that is going to make this next phase both beautiful and challenging. To all that have worked with us to get us where we are (friends and family), we offer our deepest gratitude and life long friendship. The therapy mat is amazing and Todd is already showing us he can do things we never knew he could. Nothing like giving the man a bit of freedom to see the spirit shine. We seemed to have most of what we need and are reaching for the things we don’t. We revisited our dreams and are laying out new goals. A very important piece of the puzzle for recovery and our road in general.

     Since we have been home Todd is eating his meals with the gusto of  a growing teenager! Each meal is a delight that requires intense concentration, nary a question or comment will be responded to. (There was a morning when he had a plate of cantaloupe to start while I was making some toast. As I turned around back to him I found him systematically placing each slice on my plate! Guess he still doesn’t like cantaloupe) He has moved from being pushed around in a wheelchair to being (for the most part) self-ambulatory. While homelife and therapy combined is a challenge for us both we are slowly making the adjustments and savoring each day with its comical, challenging, and delightful moments/ accomplishments. There are other issues that we have been trying to resolve since we got home like getting Todd a proper wheelchair so he can more easily propel himself around the house! All held up due to an absurd contractual dispute void of any humanity or ethics. The stories I could tell you… Just as always we have our daily battles that have nothing to do with the ones directly resulting from the accident in 07. 

     The most beautiful and wondrous moment was on the 8th day of the eighth month .08.08.08.  On the evening of this day Todd found his voice. This changes everything for us both. While I have always been able to interpret most of the incoming but infrequent whispers,  now Todd and I are operating as a team more than ever. We are able to weigh things out and make decisions that are best for him or us both….. and well now his opinions are even clearer than in the past. They can be HeaRD! It has been comical at times. Without a doubt something we are celebrating around here. Being home is a 24 hours round the clock job for us both……

     In my attempt to bring  you and Todd closer and experience the changes that have occurred I tried an interview with Todd (for blog communication). Here is the result. This was easier, for Todd, than to come up with something to write to you all. I typed as he spoke ……the answers are all him verbatim (minus a couple of “how should I put this”). I was surprised at some of his answers……enjoy.  This is one amazing brain we are working with. As I have always had faith in Todd’s healing I am convinced more than ever!!!!!!!!! So shall you I expect. Sometimes the words don’t fit just right this a natural part of the reconnection, but all that I hear from Todd’s lips is pure poetry…..so amazingly and intelligently expressive. I am not exaggerating here a bit. Seriously. See for yourself.

 

My interview with Todd:

How is it being home?

“Educational. I would think that it would be just wonderful but then umm… there is much to learn about being home….. much to adjust in my lifestyle.”

For example?

“Umm. I have to take things a little more seriously by way of doing things related to the way in which I am being paid. In other words I have to take things seriously and not poke fun at it.”

Are you finding some of the every day tasks in homelife a challenge?

“Yeah.”

What are some of your goals for the next few weeks and months?

“Become more of a advocate for change. That one is several. It will involve becoming more at ease with changes to my position and uh….independence.” (more later on this one, he got tired nap ensued)

 

What are some of the things your are looking forward to now that you are out of the hospital?

“Actively participating in an event. Imagine an event that is similar to the events I have been involved. (Arts and technology)”

 

What did you think of the wall of gears when you saw it?

I loved it. I am having a hard time seeing it the way you intended it to be. Other people didn’t and so it really borrowed from the intention of the pieces rather than the reality of the piece for me.”

 

What is your favorite part of being home?

“Looking at new work.”

 

How does finding your voice change things for you?

“Makes me seem more serious. I was always under the impression that I was considered unique but unimportant but I am important it turns out…. And people think so as well.”

It is true. Is speaking hard work for you?

“Yeah. Because I think it needs to be perfect and so its difficult to make it perfect. “

Is it a challenge to find the words you are looking for?

“Yeah.”

How is your physical therapy going?

“Not so good.” Why? “Not into it as much as I was.”   Why? Cause the result of doing it is taking up an immense amount of time.”

That said. How do you feel about graduating to walking around the house?

Feel like I am ready to be there.” You need physical therapy to get there? “Yeah and psychological therapy as well.”

How is it having visitors?

“It makes everything seem more realistic. So therefore the words I come up with have bigger impact.”

Does it tire you out?

“It does tire me out but…. It is fascinating and leads to more important questions.”

To my friends (and major supporters) as they read this I would like to say

“Thank you.”

 

Note: This interview took quite a bit of time and then Todd was out like a light. Know that this much information does not come easy at this point in time, but we were eager to find a way to share with you all. 

 

Thank you for your faith and believing in us both.

Alexandra & Todd

 

p.s. keep your eyes out for some new special photos.

p.s.s. Todd is getting a kick out of reading the blog responses so bring it on, don’t be shy. This is the first time we have been so connected with it all. So write to us, we read em all together. (if you feel private write our email account mizalex@yahoo.com)

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