and giving a nod

Mike would remember Christmas 2008 and with God’s blessing will continue to make new memories.  Our celebration would bring what will now be a new Christmas tradition of baking, cooking and passing down family recipes on Christmas Eve.  We were fortunate to have both of my parents with us for the holiday so Christmas Eve was spent in the kitchen with my mother, Grandma Nana.  Michael, Nathan, Emily and Sylvette learned the art of making old fashioned fudge and the secrets of baking the best Hello Dollies ever! We made sugar cookie dough, rolled it with a rolling pin and then with the cutters they used as kids, pressed their favorites - Christmas trees, candy canes, trains, birds, holly and snowmen. We made icing and decorated our works of art with colored sugar, sparkles and sprinkles.  There were chocolate chips, peanut butter, chopped nuts, pounds of butter, sugar and flour all over the kitchen - the ingredients for so much more than sweets. These were ingredients to store in our book of Christmas memories forever.   

All too often we forget what value lies in simplicity. A sign of our times, not necessarily a sign of who we are as people.  The best gift we can ever give is our time and guaranteed it is what we will miss the most.  A Christmas without her Mother, the daughter won’t miss that video game, those new Ugg boots, that new Coach purse but she will miss her Mom.  The Father won’t miss that tie, those new cuff-links but he will miss the son when he is no longer there. As much as we think our families need all the “stuff”…they need us, they want stuff. There’s nothing like losing or almost losing a loved one that makes you realize that stuff is really just stuff. Doesn’t matter how you try to fill the void, how much stuff you put under the tree - it’s still just stuff.  Be there. Really be there…it might make a difference to someone you love.

We had plenty of gifts under the tree - probably as many as we’ve always had but it was different - we were changed. It wasn’t about opening presents - it was the excitement of being so “in the moment”. We were never more in “the now”.  We savoured the moments…we took our time and didn’t open gifts all at once…the twelve days of Christmas was our cue. I would begin the song “on the first day of Christmas my true love gave to me…” then we would race to the tree to find a gift with our name on it and while the oven timer ticked away the minutes we would have time to open two maybe three then back to the kitchen to make more cookies and more memories with Grandma. My mother happened to be “five golden rings” so the middle was always dramatic.  We never did get all the numbers connected with the ”lords a leaping” or “drummers drumming” but the laughter that sounded was just right and so much more fun! Santa comes to our neighborhood between 8 and 9 pm and one of the highlights of the evening was watching my Mother jump up and down waving at Santa as he passed our house on a fire truck. Papaw told us stories, oh maybe quite a few and as the years have turned his full head of hair white, I couldn’t help but notice the visual resemblance to Old Saint Nick.

His eyes-how they twinkled! his dimples how merry!
His cheeks were like roses, his nose like a cherry!
His droll little mouth was drawn up like a bow,
And the beard of his chin was as white as the snow.

Last year when we arrived at Mt.Vernon Hospital to spend Christmas day with Michael, he had no memory of spending Christmas Eve with us.  He didn’t remember. No memory that one friend had been there, much less how many. He didn’t remember that he opened gifts and spent hours in the family waiting room with his “Brady bunch” family. He didn’t remember.  I could tell when I saw him seated at the nurses station that morning that something was wrong. The head nurse said Mike had been a quite emotional before we got there, thinking that he was there alone with no family or friends for Christmas. They tried to tell him we had been there the day before but he had no memory of it.   

Not everyone believes the way we do and that’s ok.  But for us, a bright shining star led the way to Bethlehem where in a small stable Jesus Christ was born. So on Christmas Day we celebrate a birth - we celebrate life.  Although December 25 is the day we celebrate the birth of Jesus, since the 18th Century there have been arguments that December 25 was chosen to correspond with the Winter Solstice or perhaps it was 9 months after the supposed date of conception, March 25- who knows.  As history is recorded it is left to the interpretation of the writer and it seems with every interpretation another group has a different platform to solidify their case. No one really knows for sure, one can only believe. 

We believe.

We would all remember Christmas 2008.

xxoo

On Christmas Eve, Mike’s very good friend Matt lost his beloved grandfather.  Matt lost his father earlier this year.  Rest in Peace Charlie Cornwell.

One Love

My nephew Jeremiah is starting a new life in Myrtle Beach and watched Michael’s Journey video this morning for the first time.  I haven’t watched it for a while and decided to watch it again to begin the day.  I continue to be inspired not only with the strength and perseverance of my own child but through the wonder of our human connection.   

Watching the video reminded me of this day last year… my husband (Bobby) was out of town and although absent was still scheming a surprise birthday gathering for me.  The group shot in the video with me and some of Mike’s friends was taken that night in front of the Mt.Vernon Rehab waiting room where they had all been in hiding.  The surprise worked…I was overwhelmed with emotion and speechless.  A year later, still finding inspiration through your undying support of not just Michael, but our entire family. Thank you. Thank you. Thank you. 

The weather in Florida has been awesome for the kids this week! Although I’ve only spoken to Michael once and it was brief, I’ve talked to Nate and Emily and it seems like things are going pretty good.  Four days, four different Disney parks  - I’m sure it took a toll on all of them, so day five (yesterday) they spent relaxing at the resorts outdoor pool. In the eighty’s, bright and sunny - Nate said he’s pretty sure he’s sunburned.  I think they’re going to hit a few balls at the golf course today.  Have you Northern VA people looked or been outside today? YUK! Double YUK!  I pick them up at the airport tomorrow afternoon.

One year ago, I would not have dreamed that a year later Michael would be able to travel to Florida much less be able to send a text message to me from his iPhone saying “Disney IS magical!”

Michael has come so far surely by the Grace of God but it has taken more than that. We can’t just go through life with blind faith that things will happen, we need our own drive and determination to make it so. We are all people of free will - we make choices that shape and change our lives.  Michael could have reacted differently to the injuries that shattered his brain but he didn’t.  We need to walk each day with purpose.  And when it seems that all odds are against us, when we can’t stand alone, we can be “strong like bull” with the love and support of family and friends.  Michael didn’t get this far on his own - he needed you.  He said in one of his posts “when I read your words I feel energized”. You were there.  You are still.  The journey continues….One Love.

xxoo

what works today

We’ve come a long way baby - I could barely think of Christmas this time last year.  I’m going to share some information with you but first I want to tell you about another angel that touched our lives. I’m not so good at making stories short stories but I’ll try…

One of the goals that Mike and I set recently was to work toward setting up an eBay store. A win/win for us - setting up the excel spreadsheets, gathering information, setting prices - all Mike’s job, Mike’s win…this is great executive function rehab. My win is to help supplement the household income since I’ve basically had to give up my career in Real Estate to commit to Michael’s recovery. So, our second sale was my Treo. As many of you know, I just switched carriers, only had the phone one year - you got it…sell it on eBay! We list it, it sells, Bobby does a hard reset, we package it and off it goes. Success! Not so fast.

The buyer gets the phone and the phone starts resetting itself every 8 minutes. It no longer works like it should, we have no problems taking it back. What’s right is right. We’re waiting to get the phone back and I get an eBay communication from the buyer. In the exchange of emails he sees the link to weluvmike.com and….(how am I doing with making the story short?).

His name is Kody. Kody has a wife and two teenage children and together his family watched Mike’s One Love video. The final email communication from Kody relayed this message ” i just sat my 2 teenage kids and wife down to watch your video dedication of your son on weluvmike.com… keep the money for his cause and know that you have a new family of four praying for your family and your sons recovery. may the lord JESUS be with you and your son..” Thank you Kody.
The Lord works in mysterious ways - we thank him for all our blessings.

Michael, Emily, Nathan and Sylvette are preparing to leave for a week long trip to Florida with David and the rest of his family. With David and Mary living in Richmond now, they don’t get a chance to visit with the kids very often.  I try to keep them up to date with the important stuff but the “how to’s” of daily living with Michael is really one of those things you share on a need to know basis. I sent an email to them today to go over the idiosyncrasies of “a day in the life” and after reading it again, I thought some of it might be helpful to share with those following Michael’s progress and going through similar circumstances. I know it helps me to read or hear how other TBI survivors progress as time goes by. We all look for hope in others. 

An excerpt: ” … what I’ve learned and… helpful hints. Everyone has their moments…

Fatigue – fatigue is a huge issue with brain injury.  Now add back, hip, neck and foot pain – Mike not only needs rest – he will need rest on his back (off his feet and off his seat).

No rest = irritable, restless and rude.

Behavioral/Emotional Difficulties:
Restlessness - Mike still has difficulty (at times) paying attention and is easily distracted so he is usually pretty restless. He feels like he needs to be doing something all the time.  If he’s not physically doing something – he’ll look for the DS or iPhone.

Agitation - the same thing applies when he has trouble reasoning. When he cannot reason effectively to understand or accomplish whatever the goal is he tends to become more restless and that quickly turns to agitation.

Emotional irritability - executive (reasoning) skills will pose challenges keeping irritable behavior in control.  Doing things that he should not do (like staying on the iPhone all the time) continuing to focus on one thing even though it may be to his detriment - i.e. looking at the phone while walking, not being able to put it down even though everyone else is looking at menus and so on.  If you interrupt, he may not be able to reason effectively or figure out right away what to do in that situation. He may get irritated that you want him to stop – it may take him a few minutes to understand and be able to solve the problem. The gates that would have kept this behavior in control have been knocked askew and things may come out (rude remarks) that used to be kept in.

Diminished insight - self-awareness of his performance and abilities. Although there has been improvement, Mike still does not have a good understanding how the injuries impact his daily life but at this point in his recovery, that’s probably ok.

Impulsivity socially inappropriate behavior – again, we’ve seen improvement but both diminished reasoning and lack of inhibition contribute to Mike saying hurtful things and he can be insensitive and blunt at times. He sometimes says things that come to mind without considering that it might be rude or hurtful. Sometimes it’s subtle, other times severe. He’s not able to reason that if he says it, then something undesirable is going to happen. The appropriate inhibition is not there.

Poor initiative – Mike’s frontal lobe injury has affected his ability to plan and to organize. This results in Mike usually not initiating activity. He may sit quietly and contentedly (but you can bet he’ll have the iPhone out). If you ask him to do something, he will do it but probably not go any further than that AND he will do at his own pace. The if/then reasoning skills and the attention problems prevent him from focusing on something long enough to be able to carry through with a plan.
Blaming others for negative reactions – i.e. angry outburst/rude comments. Let’s say Mike gets frustrated or upset -because he still struggles with reasoning he may not know the logical explanation for what is happening. He may automatically assume that someone else is doing or did something to cause his reaction. There are times that he’s just not able to remember something that he did, and may blame someone else.

Anxiety: I’ve found that when Mike has trouble being able to comprehend a situation (not being able to remember is usually the culprit) or anticipate what is going to happen causes him to get anxious. That anxiety will play out as anger.

There are situations that seem to trigger his anxiety:
* Being in crowds (his personal space has a large parameter and noise is still a factor)
* Being around small children (the noise and constant movement)
* Being teased (I should have listed this as #1 – it will set the mood for hours and sometimes days) he does not like it. He usually DOES NOT understand that it is meant as humor – he takes it very personal – he holds a grudge and will remember what you said that bothered him for hours/ days/weeks/ even months!  It just depends on who said it, and how he interpreted what he thinks you really meant.

HELPFUL HINTS!
* Remember that we can change our behavior or the physical environment.
Changing our own behavior will usually result in a change in Mike’s attitude.
* If possible change the environment.
Turn down the music; if everyone is together and you see Mike withdrawing – stop and listen – is there too much going on? TV on and everyone is talking at the same time? Is it too loud? Could he be tired – needs a break?
If you’re out just talk him through it…ask him what’s going on - he can get through anything with help.
* Behavior has a purpose - sometimes Mike can’t tell us what he wants or needs unless you ask him or figure it out – you may not know where to start but we can figure it out better than he can. 
* Put yourself in his shoes – you’ll usually find what is causing or caused the problem.
* Behavior is triggered - it usually doesn’t occur out of the blue. It might be something a person did or said that triggered a behavior or it could be a change in the environment.
* Try a different approach, or change the environment.
* What works today, may not tomorrow.
* Don’t tease or make fun of him - he doesn’t think his brain injury or the changes as a result of it are funny.

We take nothing for granted. Many, many thanks to all of you that have contributed to Michael’s recovery whether it is through prayer, through friendship and support or contribution to his medical fund. I have said many times, it takes a village. Thank you.

LIVESTRONG Michael.
xxoo

the holiday season

I try every week to find time to post updates but for some reason, it is a task that keeps getting moved to the “I’ll do it tomorrow” list of to do’s. 

December 1, 2008 finds us carrying more weight than last year (in more ways than one) but as a family we have so much to be thankful for.  This time last year, Mike had been transferred from INOVA Fairfax Hospital to Mt.Vernon Rehab and had been there for about two weeks.  He would have five more weeks of hospital care and in-patient rehabilitation. We took a Thanksgiving meal to him in the hospital - to his room with a view.  One year later and never more sincere, we gave thanks to God for all our blessings.  Every holiday since Michael’s accident and return to “life” is a first for us and although it is not life as it was, it is life as it is.  We celebrate life for all it’s worth.  We celebrate like any first - first birthday, first 4th of July, first Halloween, the first Thanksgiving… every day, every event, every holiday - another celebration of life. Our bonded family never stronger, never more thankful.

Our group of friends is and will be going through some “firsts” of their own this holiday season. My thoughts and prayer are with each and every one of them and pray they find strength and the courage to face their first without.  It was this same beautiful circle of friends and family that held me together when I had to remember life. Through thick and thin we share.  We share tears and it’s okay, we laugh like there’s no tomorrow because we’ve learned that tomorrow is not promised or guaranteed.  Together we remember to put one foot in front of the other, we breathe in, we breathe out. 

Mike played football with his boys this weekend.  It was held the Saturday after Thanksgiving and when I asked Mike if he would like to go to watch the guys play he said “no” very matter of factly. That followed immediately by ”I want to play.”  My first thought was  - no way buddy - but without emasculating, I needed to be careful how I told him “no way buddy!” So, I chose to go over that it hadn’t been that long since his accident, did he remember how rough it got, how many people had gotten hurt in years before and that risking injury to his head, in my opinion was not worth it.  I got nowhere.  He said he didn’t want to go if he couldn’t play  - he wanted to go and he wanted to play.  He thought I was being over protective and we all know I can be so guilty of that.  I would have to kill someone if they hurt him.  I knew if he went, more so if he played, I couldn’t go.  Without a doubt, I would be that Mom. 

As he was getting ready, Mike said “Mom, I had a helmet in the hospital right? Do we still have it?” Not that he remembered but he still looks at photos and reads the blog every day - there are pictures of him at Fairfax Hospital wearing a helmet when there was no skull to protect his brain. “It’s in the garage,why?” Mike says “I think it would be funny to take it and then say, hey I brought my helmet did you bring yours?” Was it comforting? Was it more comfortable for him to be the one to point out to his friends that he was aware he wasn’t quite the same as he was Turkey Bowl ‘06? Was it for me? As Mike says “the world may never know”.  At the end of it all, he came away unscathed (thanks guys), got to spend time with who he calls “the best friends in the world”, and got to spend a few hours being as close to the guy he remembers being before in the blink of an eye, everything changed.

Stay safe this holiday season - take care of each other - friends don’t let friends drive drunk.  Don’t ever forget it.

 Let Mike be the lesson.

One Love

xxoo

Thanksgiving Thank You’s

WOW…it has been a long time since I posted. J I believe the last time was April 4^th….               

I wanted to take this opportunity to THANK YOU and express my thanks for the many blessings we have received over this year. We have so much to be thankful for, it’s hard to know where to begin. But no matter where we begin, I’m always reminded of this quote from Oliver Wendell Holmes ….”The Great thing in this world is not so much where we stand, as in what direction we are moving”.   

Thank you all! May God bless you and your family with abundant blessings. See you in 2009 

Bobby