week 17 at home

I have found that being able to accompany Mike to Mt. Vernon Rehab through the week is such a blessing.  Not just the opportunity to watch as he reaches for information trapped below the surface of his wounded brain or to witness the energy he projects toward recovering physically.  It comes from being a part of where he was.  

Speech Therapy sessions are private but Occupational and Physical Therapies are held in or near the larger gym for patients on the 5th floor.  The 5th floor is for those that have suffered stroke and brain injury.   The larger gym is where we watched as Michael learned to navigate a wheelchair and eventually attempt to walk without support.  As I sit here today, in this place of healing I am reminded of the journey Michael has traveled thus far.  I see a young woman in a wheelchair standing with the help of her therapist while other therapists squeal with joy for her.  I remember that feeling.

I am reminded of the days of not so long ago when Michael’s body was still very weak from injury and a month of lying motionless in a coma, that he could not support his weight, could not lift his arms, and needed assistance for most things we do without needing to think about it .  I remember a phone call from a nurse saying that they found Michael lying on the floor between his bed and the window.  They didn’t know how long he had been there - they checked in about once an hour.  To trust Michael’s version it was a failed attempt to try to walk to the bathroom.  He didn’t realize, didn’t remember that his legs didn’t work. 

Being here where he struggled to put peppers in a basket, where he couldn’t figure out how to spit mouthwash, where he needed to be fed because his arms couldn’t stretch to his mouth - I am blessed to be a witness.  Each day a reminder. We have been blessed beyond what we ever dared hoped for. I give thanks to God, I give thanks to you.

Without your love, your prayers and support, Michael would not be where he is today.  I stand strong by his side each day with the love and support of friends and family (Bobby, Nathan, Sylvette, Emily, David and Mary) I could not do this without you.  One Love.

LIVESTRONG Michael.

xxoo

whoa!

During the first meeting with the group of therapists at Mt.Vernon’s Bridge Program, they estimated that Michael would be in the program through mid or end of May.  I got a call yesterday from the Program Director saying that next week would be his last week with Physical Therapy.  She said that this decision was based on Michael’s improvement and the amount/results of therapy he also receives at home.  Whoa!  I guess I should view this as good news but honestly, I don’t.  Although everyone involved with the program is warm and caring, the bottom line in business is money.  Decisions for patient care are usually based on when the insurance company stops paying.

Michael is a few weeks away from what the insurance will cover for individual therapy sessions but a year or more away from his need for professional rehabiliation to end.  I asked to meet with the group next week to go over options for therapy and try to put together a plan to pay out of pocket to keep Michael in therapy.  I totally understand why they are trying to comfort us with “you work so well with him at home” but I don’t accept that this is the end of the road.  Michael deserves every opportunity to continue the therapy that has opened the door to the amazing recovery we have witnessed thus far.  We are not therapists, we need their professional guidance, we can’t do it alone.  He deserves more.

Please keep us in your prayers as we search for solutions to keep this rooster crowing.

LIVESTRONG Michael.

xxoo

6 Months

We were told within those first days that we should not anticipate anything for a minimum of 6 months. WOW…Our GOD is great!!!! We have seen unbelievable growth, will power and determination. Thank you son and thank you GOD.

Thank you all who continue to pray, offer kind words, phone calls and those wonderful visits. May GOD bless you and your family as much as he has ours.

Beautiful

It is a beautiful life we live.  We are thankful to God for all his blessings. 

The consequences of traumatic brain injury can be lifelong.  There is no test to predict the outcome but there are many to determine the damage.  A measure of cognitive hope would be if the patient regains the ability to learn new things.  Michael’s frontal lobe injuries were so severe, short term memory is a huge barrier for recovery.  The ability to remember and retrieve new information would be a definitive marker of hope.  Michael added a quote from Mohammed Ali to his MySpace page because he believes it is a true representation of how he feels “A rooster crows only when it sees the light. Put him in the dark and he’ll never crow. I have seen the light and I am crowing.”  After reading the quote and then adding it to his page he was able to quote it word for word the following day to Nate and Sylvette.   We thank God for all his blessings.

Self awareness and the process of initiating self care is another deficit Michael has struggled with.  Bobby was out of town last night so this morning when I took Emily to school, I had to leave Michael at the house by himself.  When I left he was at the kitchen table having breakfast but when I returned I didn’t see him anywhere.  I called for him nervously and he answered coming down the stairs. I asked if he had gone to the bathroom, he said that he had gone upstairs to get socks because his feet were cold.  I looked at him and said “that’s huge honey, that’s huge” and gave him a big hug but couldn’t hold back the tears. I probably hugged him three or four times.  I realize that may not seem like anything to cry about and it may be hard for you to relate to what I felt at that moment.  But here it is…

When you’ve faced the possible death of your child, when you fear that the last time you saw him smile would be the last time you saw him smile, when the damage done is described as severe traumatic brain injury and “is your son an organ donor? his chances of survival are slim…if he survives he may be in a coma for 6 months…don’t get your hopes up” comes from the head neurologist…nothing is taken for granted.  Each step toward recovery is a blessing. Self awareness/self care = hope for independent living.

Hearing Michael read the blog this morning and watching his face as he read, I felt the need to share.  For all of you that write to him I want you to know that you speak to his soul.  He feels every word, he is so inspired each day by your words of encouragement and hope. It begins the day with an appreciation for life and gives him strength.  An earlier quote from Michael ”when I read your words, I am energized”.  I cannot thank you enough.

Life - it’s a beautiful thing.

LIVESTRONG Michael.

xxoo

the forum

Just in case you haven’t checked the forum (forum? what forum? what’s a forum?), I posted a couple of weeks ago to see if anyone happened to have copies of the earlier posts, comments, dad’s corner, mom’s daily entries.  Technology is a wonderful thing until it hiccups.  When the blog underwent a face-lift of sorts, many of the entries were lost…the whole blog thing was to keep you updated and for Mike to read when he recovered enough to read and understand.  That time is now. We pull up the blog several times a week for Mike to read through entries and comments.  It is just as inspirational and healing for him as it was and is for us.

Due to the “face-lift”, there are voids in this recording of his journey.  The entries and comments are just as powerful today as they were when they were written and I would love nothing more than to give Michael a full accounting of your heartfelt messages of love, hope and encouragement.  There are no entries from October, November and December from Dad’s Corner that survived the upgrade and there are gaps in a few other comment and posting areas.

If you happen to have saved, printed, emailed…any posting, any comment from October 22, 2007 through early January, please let me know.  Jimmy added the forum as a way for us to communicate - if you think you might have something we’re missing - hit me up on the forum.  It will be an honor for me to add the missing pieces. 

xxoo

for one more day

Michael finished four pages of speech homework and his daily “at home” PT the other night so we settled back to catch up on TV. Not much to look at so we browsed through the previously recorded shows and came across “For One More Day”. If you’ve been following the blog you may remember that I began reading the book to Michael when he was in the hospital. He eventually progressed to the point that he could read to me and we then took turns reading pages to each other. When we heard that the novel was airing as a movie (I think it was December time frame), we recorded it for Michael to watch when the time was right. I was curious to see if watching the movie would spark a memory of the story or those afternoons reading in the room with a view. I will always remember the reflections through his window and the warm hues of fall wrapping around us like a blanket as we read through the pages of this beautiful story. What a perfect environment for healing - for returning to life. Would he remember?

What Michael remembers depends on the day and the level of fatigue. However, there is no memory of his life just prior to the accident. The accident consumed lunch dates, conversations at work, evenings and weekends with friends, plans for getting a place with Matt and Emily’s 18th birthday in September. There are no memories of his last days without brain injury. No memory of the angels on earth at INOVA Fairfax Hospital that worked feverishly to salvage what was left of his life when he made that decision to drive home in the early morning hours of October 21, 2007. No memory.

When we ran across the recording I asked Michael if he remembered reading “For One More Day” with me. To my amazement, he said yes. He said “it was a book about a guy who was in a car accident that hallucinated about his Mother.” I’m sure my mouth was open when he followed with “it was in ‘ville something…. ville…uh…Pepperville.” Wow! That was awesome…I asked “is there anything else you remember?” He said “yes, he hit a tree and he got a chance to talk to his mom that had been dead for years. The guys name was Chick. Chick Beneto.” I kissed Michael’s temple with tears in my eyes and said “there are many things you don’t remember, I am so glad you remember this.”

As we watched the movie I could see within half an hour that the very long day of therapy had taken its toll and Mike was too fatigued to continue. We ended the movie at the next commercial but as life goes, the timing was at the point when Chick asks the question “what is an echo?” I flash back to the day at Mt. Vernon sitting with Mike in silence and remember “an echo is what persists when the source is gone.” I remembered what a connection I felt when I read that in the book and it has stayed with me. It was the echo of my son in the silence of a room at Fairfax Hospital when the nurses said that when he squeezed my hand it meant nothing. It was the echo of his being when I lifted his eyelid and knew he looked at me through the eyes of a coma. It was the echo of his heart when Michele and I standing by his bed, trying to transfer healing energy through our words and loving hands saw his lips move to form the slightest smile. An echo is what persists when the source is gone.

For persons with traumatic brain injury, it is in the stillness that memories are made. I didn’t remember the setting from For One More Day. I didn’t remember the name of the main character, but Michael did. I guess only God knows why Michael remembers certain things and not others. Our memory is such a vital part of who we are.  Those memories of life - Thanksgiving, Christmas, growing up, Grandparents, parents, brothers and sisters, and time with friends.  Those moments don’t often seem important until we lose it/them or fear we’re going to. What would we do for one more day? 

To the ”Mc…..” family - we hope the memories of your Mother/Grandmother held deep in your heart help soothe your spirit at this difficult time. Our thoughts and prayers are with you.  

To the ”M……… family - we are sending healing thoughts and energy your way.  Please know that your family is in our thoughts and prayers. We believe in miracles.

There were days in the earlier stages of Michael’s recovery that we had to be very careful with noise and light and we watched carefully for signs of being over stimulated. We were aware that quiet was necessary throughout the day but he is now able to tolerate noise and light much better. Not to say that he doesn’t still require those moments of quiet because he does.

It is in the quiet gathering of mental noise that Mike is able to manage the changes of what was and what is. The past, the now, the ying, the yang, restoring balance and strength to his mind and body. Imagine the clarity he’ll need to find the answers to “what does life want from me now? and how do I fit in?” You think we could all benefit from a few moments of quiet now and then?

Once again, Michael has had an awesome week. His speech therapist said that she felt he had a breakthrough this week. His physical strength and balance continue to improve with Pilates based techniques for strengthening his core and lengthening muscles that have been shortened from injury.

He swam on Saturday and went to church on Sunday with his Father. He had Sunday brunch at IHOP with our family including Bobby’s mother (Grandma Boufie) and family friend Rondie. On Monday Nate, my friend Alex (visiting from London) and her children joined us at the Rehab Center at Mt. Vernon Hospital.  Nathan sat in on an Occupational Therapy session and Alex sat in on the “breakthrough” Speech Therapy session. He swam at the Chinn Center with Nate and Chris Lucas on Tuesday. On Wednesday he went on an outing to Chipotle and then bowling with a group from rehab. A gorgeous sunny spring day on Thursday prompted a cancelled visit with Jennifer and Jessica (Jessica’s birthday was Thursday - he owes you one) to go to the driving range with Bobby. Although Michael was very, very tired afterward, they had a great time and shot two buckets each. The golf swing motion is a part of his therapy to promote more fluid movement through his back and core. Michael is already looking forward to bypassing the driving range and hitting the golf course (they have carts).

Michael writes in his journal to help keep memories.  He wants to remember each day and the people that share it with him. Thank you’s to Danny and Rachelle for the phone calls to Mike and to Amanda, Kim, Matt, Karl, Chris, Nate and Sylvette for very enjoyable time shared.

Writing on the blog comes from a culmination of notes in my journal, jotting down thoughts and memories here and there and on Tuesday at Chinn I wrote: when the kids were young, the future was a place where all the good stuff was kept. It was a place all on its own and we couldn’t wait to get there. I never thought that it would be the place where bad stuff waited in ambush. As a parent, you want your children to listen to you, to learn from your mistakes, to understand they are the most precious things in life and to know the depth of love you feel is without measure and like no other. But what I’ve learned is that I can control what I eat, I can control what I say, I can control my temper but that’s about it. I have no effect on traffic, sunny or rainy weather or luck. I can’t make good things happen and I can’t keep anybody safe. I can’t fix the past. So I’ve been thinking that maybe if I can learn from my mistakes, I could possibly influence or make a difference in the future.

It is with humble gratitude I thank you for the unanticipated private and public responses to Michael’s video. Touching hearts, opening doors and minds, changing lives maybe? I’ve always felt there was a reason Michael’s life was spared - a plan …maybe we can make a difference.

LIVESTRONG Michael.

xxoo

friends

i watched the video again because one of the side effects of a brain injury is having a bad memory and i couldn’t remember what i saw the first time and I was reminded again of everything ive been through. i appreciate all of you so much and i want to thank you for being there for me. ive come a long way.

thanks to karl, matt, jimmy, herzig, mike v, chrissi, danny, thomas and austin, rastad, shannon, kristen hicks, amanda elbisi,  bobby and brian hannifin, lyndsay, rachelle, becca, amanda kibben, and jessie seeber for sending love my way this week.  i think I have the best friends ever. you keep me motivated and you give me strength.

and as usual i cant thank you enough nate and sylvette for just being there. i couldnt do this without you.

i know that i have a long road ahead of me.  i feel accomplished but i know it’s not over yet. its an uphill battle that starts at the bottom and by the looks of my jeep that’s where i was. i know i need your support to get there, but im going to make it to the finish line.

ta da

The Video page is the new addition to the site and it is so much more than a still photo slide show.  While we tweak it to perfection, here are some helpful hints for better viewing:

• On the Video page, scroll down until you see View Photoshow Deluxe Slideshow under the main photo in the center
• there is music so if you’re at the office, just be aware - plug in your headphones 
• this version is a large screen version so if you have trouble viewing the whole picture or can’t see all the words, please let me know…we can add a smaller frame for viewing on smaller monitors.

I used comments from the blog to relate to each photo and some of them are longer than others.  You may need more than 10 seconds to read between frames but that’s all I could get.  Read fast!  Or just play it again and again… that’s what I do.

 I hope you enjoy it. 

xxoo

one

After months of sorting through photos and music, I have finally finished the photo project of Michael’s journey back to life - the rebirth as I like to call it. I had hoped to be able to just add a link to the side bar of the blog but because I have MP3’s linked to the photos it isn’t going to be that simple. This creation has meant so much to me. Each and every stolen moment I took to sit with my laptop and devote an hour or two putting the pieces together, was like an hour or two of therapy. I have nurtured and cared for it but I think if you ask my husband, he would say it has been my obsession. At any rate, it is done. A reminder of how far we’ve come -an inspirational journey of courage, of love and hope. A journey that connects us all in some way. It is my gift.

The last couple of weeks in and out of Mt. Vernon Rehab have been full for Michael. Usually 4 full days of therapy - tough but no tougher than he is. Swimming a couple times each week - 800 to 1000 meters of breast, free and back. Still working on the difficult nature and rhythm of butterfly.  If he could swim every day he would. He lives for those days at the pool.

A trip to DC with his father to see the new museum, the Newseum. A trip with Nathan and Sylvette to the Body Works exhibit in Baltimore. Visits and phone calls from friends determined to keep Michael a part of their lives. Visitors from England - my best friend and her beautiful children.  One of her daughters has said special prayers for Michael since his accident…it was so nice to see how happy they were to see him standing so strong and healthy.

The compression fractures Michael suffered bother him most days. It’s our hope that with continued rehab he’ll find relief but in the mean time, we explored massage therapy. Starting a couple of weeks ago for 30 minutes and then on Monday for 45 minutes. There was marked improvement after the 45 minute session so we’ll work on his doctor to get a prescription for subsequent visits.

We still begin the day identifying the date and appointments with the now irreplaceable journal. He checks email and myspace daily and the blog when time allows. His daily routine also includes PT and Speech homework either in the morning or evening of which he never complains or tires of. He wants to get better and he needs to feel he’s getting better each day. There are some areas of recovery that will take much longer than others but we find and give encouragement with each step, large or small.

There are no words to describe the feeling I get seeing Michael’s heart soar. I don’t see it after a good therapy session or when he is praised for hard work. I see it when you call, when you send him an email, when you stop by to visit with him - when he feels like he is not forgotten. Like there’s a chance he is still “Mike”. Thank you for that…all the therapy in the world can’t give that inner circle feeling to him. One love…

LIVESTRONG Michael.

xxoo

Here is the link to the slideshow.

(Click the “View PhotoShow Deluxe Slideshow“  link below the photo.  It will take few minutes to load.)