there is a difference

It doesn’t get easier.  In fact, as weird as it may seem, I almost think it is more difficult now than before.  For those of you that have children, you’ll be able to relate.  Remember, I love nothing more than being a mother and but when you have a newborn – it is nothing like you think.  You are not prepared for the sleepless nights, the crying, the feeding, the crying, the feeding, the crying, did I mention the sleepless nights? – you are exhausted… then they’re crawling and reaching  – the responsibility increases, you can’t take your eyes off for a minute.  You think,  ” if only they were just crying and feeding”…then they’re walking and talking and you think “oh, it was so easy when they were only crawling”…you love this time as you watch your child grow but the more time passes, the less time you have to teach them, to establish the very important foundation that sets the stage for the rest of their lives.  The more time passes, the more challenging it gets. There’s no “right” way to do it, you just do the best you can. 

Well, here we are.  We were given a gift, a child, october 21, 2007 – the sands through the hour glass began day one after coma.  The re-birth and all the stages, now add brain injury. I understand and feel the stress related to the fact that we have a two year window to get as far as we can get. The emotional pressure is overwhelming at times, but it is not the first time we’ve felt pressure.  No, as parents we feel the pressure and carry the ultimate responsibility for our child’s success, happiness and well being from day one.  Not all parents feel this way though.  Some comfortably turn their backs at some point and say “have a nice life, I did my job”.  Yeah, that’s not me.  Right or wrong, I will always feel the pressure.  I don’t know why…  

You probably have a pretty good idea now of what our scheduled days are like -here’s where we sit inside that schedule:

Cognitive or thinking problems – very different from emotional problems. Cognitive problems are difficult to rehabilitate and alot of rehab professionals encourage patients to use compensatory strategies. Like using the planner/journal and other back ups. I’m not a professional - so I work with Mike to rely on the planner but more so, to work toward rehabilitating his shattered mind until it can’t be rehabilitated anymore.  Then, we use compensatory strategies.
Reduced arousal – resulting from damage to the parts of the brain that control alertness.  Takes longer to get going, takes longer to move from one thing to the other. The ability to focus or concentrate on something is different from arousal.
Attention – Mike may be fully awake and alert and still have difficulty concentrating on his environment or on the task he is performing. He will often require frequent reminders to re-focus his attention to the task at hand.
Memory – difficulty with day-to-day memory. That’s a BIG one, but getting better.
Insight – the part of the brain that controls self-awareness is damaged (right hemisphere). This can be very frustrating for all of us including Michael. Although you can present him with evidence, many times even that does not increase his insight. This condition is not under his control so it is important to realize that he is not being difficult or deliberately trying to avoid admitting his problems. It’s that HUGE right hemisphere damage.

Executive Functioning: examples of executive functions include planning strategies to reach goals, implementing those strategies, being able to switch strategies if current ones are not working (not so good at that), preventing irrelevant or inappropriate thoughts from becoming distracting, being able to see “the big picture,” being able to deal with new situations, etc. The executive functions are among the most complex thinking skills that humans have. Mike has always been a good talker – still is. So just talking to him, his problems may not be very obvious. This is because these problems are most apparent when he actually tries to do something. Executive dysfunction can be very disabling.

Agitation: Mike can be very restless and sometimes aggressive.
Anger/Irritability: Not just with Emily anymore. Seeing more of the short temper or short “fuse.”
Initiation: Although I am definitely seeing improvement, Mike may need to be cued several times to do an activity or accomplish a task. And honestly, there are times when he may not do anything unless reminded or encouraged. It doesn’t mean he doesn’t want to do it…he either forgets or gets distracted.

Physically – he is strong but there is still some weakness. Working on stiffness through his upper body and balance is still a little off but I have no doubt he will conquer all of his physical injuries.

We had our family reunion this weekend, someone asked me if Michael gets depressed. Depressed? I don’t think so, but sad at times? Yes. He gets lonely and misses hanging out with friends but wow…this circle of friends has been through sooooo much.  It seems like “life interrupted” should be our banner t-shirt for the group. 

He is as motivated as he can possibly be. He doesn’t give up, he hasn’t given up but there is a difference.  Pray for us as we approach the one year mark of this young man’s new beginning.  We have been blessed beyond measure -  we pray for continued healing.

xxoo

Happy 19th Birthday Emily! 

I hope you dance like there’s no one watching and love like you’ve never been hurt.

Remember 9/11

I’ve written quite a bit about memory – you would think it was something we work on or with every day, right? Right. We were talking about things we remember from earlier today to yesterday, last week, last month and so on.  I asked “what were you doing on 9/11?”  Mike answered “9/11/01?  I was at home when it happened and then Matt came over.  Nate came home early and…” He went on for a few minutes with great detail. That day was not part of memory lost.  He remembered 9/11/01.  I’m sure you do too.  I’m sure we all know exactly what we were doing in that moment - that moment time stood still. 

I was in the clubhouse kitchen with Shelby, Karen, Linda and Margaret.  Engaged in our “while we’re getting coffee” morning chats. I remember Shelby was waiting for William driving in from Charlottesville…we stood near the TV talking but kind of watching the Today Show, listening to Katie and Matt and then “it” happened.  We stood in disbelief, unable to move.  The first plane, our eyes still fixed on the TV as we watched the second plane fly into the World Trade Center tower.  And then the Pentagon – it got personal.  Was David ok?  Were we going to be ok? The kids? What was next?  Bobby was working at the White House then and if any of us were safe and going to be ok, it was going to be him.  We were all terrified.  No matter what your political affiliation or persuasion, the tragic events on September 11th 2001, had some sort of impact.

9/11 will forever evoke memories of unimaginable tragedy, of lives lost and brutally cut short and of sorrow in the hearts and minds of all of us. BUT our strength as people united should help us remember the bravery, the courage, the humanity and the spirit shown that day. No matter our differences – we were one. One Love, there it is again.

Traditional “Metta” or “Loving-kindness” prayer

May we all be happy. May we all be healthy. May we all live with ease. May we all be free of enemies, within and without.

xxoo

a day in the life

The first verse of this Beatles song was written about the death of John and Paul’s friend who crashed his Lotus Elan at the age of 21. He was to be the heir to the Guinness fortune.

I read the news today oh, boy
About a lucky man who made the grade
And though the news was rather sad
Well, i just had to laugh
I saw the photograph
He blew his mind out in a car
He didn’t notice that the lights had changed
A crowd of people stood and stared
They’d seen his face before…

A Day In The Life- our Michael blew his mind out in a car on what was just a regular Sunday for most people. Unless you were immediately affected by his accident, you probably don’t remember what you were doing the morning of October 21, 2007. I remember everything. As I’ve gotten older my memory has not served me well (or did I not serve my mind well leading up to this older age thing?) and although it felt like I was in a fog, I remember it clearly. Memory is a vital function of the brain – as vital as it gets. Outside of the cognitive musts, our memories help us heal. Remembering October ’07 helps us heal.

Thinking back to the days during the first month after the accident -we weren’t given much hope that Michael would ever wake.  I tried to remember everything I could about him outside of the stillness of the coma.  We embrace the sound of someone’s voice, their laughter, the smell of their skin, the touch of their hand, the way they made us feel.  Although we feel it in our hearts, that memory is planted deep within our brain, in the hippocampus. Short-term memory is transformed to long-term memory through the hippocampus which is a part of the cortex and is located in the inner fold of the temporal lobe. When our dear friends were losing their fathers and husbands I added a poem to one of the postings. That poem speaks to those that are left with the memory – “Death is nothing at all, I have only slipped into the next room. I am I and you are you. Whatever we were to each other, that we are still.” Denny and Sonny are there still…in the hippocapus. It is memory that helps us heal. Mc families – we love you deeply. We are here, when you’re ready.

A Day In The Life (if and when I’m not working)
8-8:30AM (he’s finally sleeping in) – Breakfast
9AM – Reading the Intellectual Devotional – Michael reads to himself, some days he reads out loud to me, then I read it to him and he takes notes. I test him weekly to see what new information he has learned. He ALWAYS remembers more than me.
10AM – Exercise – stretching every day, push ups every day, we are walking 2 miles daily weather permitting and have incorporated about a half mile run during the walk. Our goal is to run the two miles by October. Running at times bothers his right knee so we play it by ear. Some days – elliptical or stationary bike. Some days – weight training with a rowing workout using resistance bands. Michael is not swimming as much as he was before but he is still swimming. This weekend we visited with my brother and his family. Their house and property in Fredericksburg is on the Rappahannock and we hiked downhill to the river (maybe half an hour), filled backpacks full of river rocks and then hiked back UP the hill. Michael was amazing! There was alot of huffing and puffing from all of us and I know it was especially tough terrain for him, but Michael never complained. He pushed himself harder than I’ve ever seen him push. I had a feeling he did not want to let his Uncle Ron down. (He’s a Marine) oohrah
11AM – Shower, brush teeth, shave (he’s not fond of shaving so that doesn’t happen everyday) and clean clothes. Most on his own, sometimes needs a reminder as a checklist. Paper checklists do not work.
12PM – LUNCH – rest
1PM – Cognitive brain training – a variety of activities; crossword puzzles, word search, worksheets from a speech therapy CD, etc., etc. Some days we add laundry or working outside in the yard.
2-4:30PM – Outing of some sort will usually include a search and find at a store. Mike will have items on a list and his job is to locate those items and then return to me.
5-6PM – Dinner – most times at home, at least one meal a week out.
After dinner I don’t bother him too much except for being the constant thorn in his side about remembering to use his right arm and hand and that he is right handed and MUST become right side dominant again. “LIVESTRONG” is my subtle reminder to him.

Throughout the day he meanders to his laptop to check email, which leads to Facebook and My Space and the occasional GChat. He checks the blog several times a day and on his own will do research about schools, or politics (thanks David), or a brain injury site (thanks Karl). Yesterday he was looking at HULU and the new Google product (thanks Jimmy), or a memory training site. He will pick up Nintendo DS and play Brain Age or Flash Focus for half an hour or so. AND now he has Nintendo Wii Sports and Fitness…thank you Jeff and Jeanine. It seems like a game but trust me when I tell you, it is a WORKOUT!

Our days are full of love and laughs. Our days are full of strength and courage. Our days are full of hope. We are still keeping HOPE alive here on Roseberry Farm in Manassalacki.

LIVESTRONG Michael
xxoo