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.”
“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?
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?
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
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 firstname.lastname@example.org)