3 years...

I woke up at not long after 1 or so this morning, as I have for the past three years on this date.  As it has before, it took me forever to fall back asleep, and even then it was into a light and fitful sleep.   I think it says a lot about Molly that she touches so many people, even in death.  I know how difficult getting that phone call 3 years ago was, just a few hours after her passing... and I was only her coach.  I cannot imagine how Janet, her Mother, felt, or how she has been able to handle it with the grace and open heart that it appears she has... Even I, as he coach, still want to take her and shake her in anger and frustration, and then hug her.   It's confusing.

Other than that, I guess the eulogy says it all - it was an honor to deliver it and I'm not sure I could put my feelings into words any better.  I've posted it before on this date, and will probably post it again.  Molly, hope you and JD are driving God slightly nutso up there.

Molly Eulogy, 3-29-08

I've sat down to write many words about my swimmers in the past 8 years -- conference championship presentations, fall sports banquet presentations, college recommendations -- and each celebrated the accomplishments and joy of a generally wonderful group of young men and women. Needless to say, I never seriously contemplated writing anything like this.

Since my phone rang at 1a Sunday morning, I've had many voice and text message conversations with former swimmers and parents. I know that many, especially the kids, are struggling with the age-old question of "why" -- why Molly, why now, why like that...

Many feel a confusing mixture of emotions. I do. Many even feel anger. Me too. All feel a deep empathy and concern for Janet and Morgan. None of us have good answers.

Why did Molly die? We will never really know, and the only source of comfort to many will be an abiding faith that there IS a good reason, whether we are aware of it or not.

I know many people search for some meaning in an unexpected death.

Many people resolve to seek lessons in a death to change their own lives from there forward... which is fine, but that resolve tends to fade when the impact of the event lessens over time.

So... I believe that the real question is, and the real comfort comes from answering: "Why did Molly LIVE" -- for I believe that the lessons that will most affect us come from taking the best that Molly had to offer and incorporating that into who we are from this moment forward.

I believe that the greatest way to honor an individual is to emulate the positives from their lives -- really, what greater compliment can you truly give a person?

So, let's try to forget Molly's death, for a moment, and focus on Molly's life -- and from that life, let's take all that was good and give it immortality by carrying it forward in our hearts and minds.

Molly lived her life with gusto. She loved. She laughed. She cried without shame. Her passion and emotion governed all. She was a fierce competitor. She was her mother's loving daughter. She was exasperating in her ability to get herself into all kinds of chaos through convoluted yet well intentioned choices. Molly's engine burned brightly, always.

Molly was many things to many people. She was a talented swimmer with unlimited potential. She gave, and received, affection and love easily and enthusiastically. She cared about the people in her world. She craved love and friendship.

I believe that Molly had an empty space inside her heart that led her to look to others at times for affirmation and acceptance -- she was a very gregarious and social young lady, and in looking to fill that space Molly thrived on the attention and feedback she received from friends and teammates.

Molly loved the spotlight, and the spotlight loved Molly.

I truly believe that Molly loved her existence. She loved living life, even when life was not easy. I also believe that Molly unconsciously knew that she was not destined to grow old, and that that knowledge drove her to live with a greater passion and fewer inhibitions than most.

Molly had very little fear. She was not afraid to love. She was not afraid to be affectionate and giving. She was not afraid to openly show her emotions. Molly was not afraid to give compliments. She was not afraid to experience things. Really, Molly was not afraid to live life.

Molly was a beautiful young lady with a well-intentioned soul. No matter what situation she found herself in, and she found herself in a few interesting ones, I always believed that Molly's path through life was never malicious or mean spirited.

Through the years I know both her Mother and I occasionally wanted to knock on her head and ask to speak to the occupant, yet Molly always managed to maintain a bright outlook and an optimism and enthusiasm we can all appreciate and envy. Janet, I know without a doubt that your daughter loved you more than anything. She respected you, and appreciated you, and was proud of you. I know I speak for everyone when I say that Molly was a truly unique young lady who touched us all in different ways.

The image I will choose to hold of Molly is of the times her wonderfully upbeat and competitive personality came blindingly into focus -- I especially think of some of her amazing swims on relays when her teammates were counting on her, and her endless enthusiasm for her team and coaches.

I will forever picture Molly's open and smiling face, her exuberance, her strength, and her determination.

I don't need to tell you that one of the hardest parts about a death too young is the haunting thoughts of what could have, or should have, or might have been. There is no doubt in my mind though, that, while Molly may not be very happy about being in heaven, she is certainly sitting next to JD Hall, making fun of his buttoned up shirt, and appreciating this gathering in her honor.

I will leave you with this plea:

I challenge you all to focus on what was in Molly's life and what will be in YOUR life -- and to give meaning to Molly's life by choosing to carry her spirit forward. When you walk out of this church and resume living your lives, and the shock of Molly's death begins to recede, I challenge you to let Molly's passion and enthusiasm, her joy for life, her love for people, and her ability to smile in the face of all adversity become part of you -- Let Molly's legacy be for you each to leave here carrying a hint of her fire and enthusiasm in your heart -- for THAT will give meaning to Molly's death, and honor to her life.

Hardest Training Day(s) of the cycle...

The hardest training day in the whole calendar is the day I take off.  It's the most difficult mentally, even if it is the most beneficial physically. 

I know, I know, to avoid over training we need to have easy days AND rest days.  The athletic gains we make are actually made while resting, not while exercising.  Rest helps our body recharge and ward off injuries and illness.

Etc.

Blah blah blah.

BUT, when you have two kids on spring break and one of them has turned into an extraordinarily high maintenance child (we're working on that one), and every 2.37 seconds the word "Mommy" "Mother" "Momma" "MOM!"  "MuhTHER!" or some derivation thereof is uttered at various volumes, and your main source of stress relief is working out, NOT alcohol consumption, a rest day feels like the worst kind of torture.

And, an unplanned rest day is the worstest torture of all.  For example, today I HAD planned to do what I consider "active rest" -- i.e., swim, probably 3000 yards or so.  My body does not particularly consider that a workout, and I don't use my legs at all so they get the day off.  Alas, like so many other training plans these days, that went away and today turned into a "take Lim to the orthodontist unexpectedly, scramble to get a surprise together for Matthew, race to get Bim to practice at one end of town and Lim to physical therapy at the other, and zoom home to put the finishing touches on the children-driven surprise for M."  (Insert 43 "MuhTHERS" here in the time it took to write that sentence.)

Fine.  I'll take the damn day off.

Now, Lim just got rubber bands on one side of her mouth, aka the same side of her head that hurts continuously too... and if you've ever had rubber bands you know that that side of your jaw feels like someone hit you with a 2x4 several times, for several days.  So, an already "on the edge" kid personality-wise just got drop kicked into the abyss, as the perfect storm of constant headache, no physical activity, lack of solid food, and now a wonking pain in her mouth combines to create LIM, THE UBER GREMLIN.

So, not only am I feeling like the broad side of an expanding barn that is rapidly losing fitness (yeah yeah, it's only one day off blah blah blah... every triathlete reading this is nodding in understanding right now), I am also the bullseye encrusted target of Lim's (justifiably) sparkling personality.

Thank GOD Bim is in happy-ville these days.

Now, I don't know about you other tri-geeks out there, but on my rest days I spend a lot of the day mentally going over a checklist of what I am doing for training in the next few days.  Mentally torturing myself in a way, as I think about how great it will be to kick my own a** for several hours tomorrow in a run bike brick, or do a longer run and ride the bridges this weekend.  I think about it over and over again, probably hoping that if I think about it enough it will actually HAPPEN, and nothing will cause a major training-reorganization, again.

And, of course, sane or not, there is always the dogging notion that everything I eat on a day off forms an immediate muffin top and bike padding.   Squish.  Shut up.  I hear it.  SHUT. UP.  Maybe you should just grab a quick spin.  SIGH.  Don't you come with a mute button?!

So, yes, we insane triathlete types train insanely, and everyone oohs and aahs at our heavy training days and weeks.  But, I submit that when we are in the throws of serious training (especially Ironman training, see:

http://www.youtube.com/watch?v=B03dFMG8nR4

(pardon the language)

the hardest thing for us to handle mentally is actually NOT doing any training.

And I bet our spouses/partners/children just LOVE when we take time off.  That is probably only topped by the two weeks of taper prior to an Ironman race, when most of us have the personalities of wet cats and YOU are the barking dog.  Six months of heavy training interspersed with a few days here and there of mental stress, aka days off, and then we back off of mileage AND have the actual event looming.  Maybe they should give survivors' medals to the families, not finisher medals to the athletes.

So, I will now waddle upstairs to find a pouting Lim, who is angry because I am actually taking five minutes to myself, and herd her and a bubbly Bim into the truck to start the afternoon rodeo.  Only 14 more hours until my rest day ends and I can get some training done.


Assuming I can talk myself off the cliff and stay away from the trainer until bed time, of course.

;-)

...that's my why, what's yours?

Riding the roller coaster, reluctantly

When I was 6 or 7 my grandfather was diagnosed with bladder cancer.  He lived in NY and we lived in PA.  His battle with cancer spanned two years.  It took me about two months to get over the roller coaster mentality that often consumes people in situations like that -- one day he is doing GREAT and the next day we are getting the call to drop everything and drive to NY because he was assuredly dying.  This went on for the better part of the two years he was sick.  I became numb to it long before the adults seemed to, and when my first mother in law got cancer 12 years ago I did my best to refrain from riding that ride again.

The past two months with Lim have been a different version of the same ride.  Although I know intellectually not to get too pumped at the highs or too depressed at the lows, it is far easier said than done.  I think we've done a fairly good job, but it is impossible not to have my attitude and outlook at least somewhat affected on a daily basis by Lim's demeanor, pain level, and prognosis.

On any number of occasions now I have sat down with my face in a shepherd's fur and cried, hard, for a bit.  Lim has shed a few sets of tears as well.  Some days have seemed very bleak, as she does her best zombie imitation (complete with deep dark bruises under her eyes and freakishly pale skin) and her mood suffers.  But, somehow we have managed to scrape the rock bottom, stand up, shake ourselves off, and regroup.  So far.

Matthew has pointed out, to Lim's eternal disgust, that there have actually been a discernible amount of GOOD that has emerged from the concussion and PCS.  Lim does not subscribe to the "good things have come from it mindset, although we keep reassuring her that she will, once she emerges from the haze and the headache goes away.

What could possibly be considered positive from this whole situation?

1. Bim and Lim are closer than they've ever been before.  Last summer and fall they would actually resort to physical violence against each other at the biof's house, and Bim carries actual visible scars from the battles.  Matthew and I think that the stress and tension over there brought out the worst in both of them, and somehow instead of being allies they became adversaries as their methods of dealing grated heavily on each other's nerves.  Things had improved with the limited time spent over there, but once the concussion happened, a miracle seems to have occurred.  Bim declined to ditch her injured sister to go on the famous cruise, and, other than a brief spasm of resentment at the changes in our world, became solicitous and kind to Lim.  As Lim has returned to school, Bim has spent lunch periods with her in quiet locations, away from the din of the lunchroom, and has even referred to that as "our special conversation time".  From all reports, the two sisters who could barely be civil to each other now spend 50 minutes every day conversing on all sorts of topics.  If I had known that this would happen I would have smacked one of them on the head years ago.

2. Bim and Lim are quite clear on the reality of who the biof is and what his priorities are, and how they feel about it.  Unfortunately, it took the cruise fiasco and his complete mishandling of counseling, the concussion, and other issues to fully convince Lim, especially, that he is not going to change.  She has struggled, early on, with it -- "if we get 10 people off the street to tell him he is wrong, will he change" and "if he loved me, he would listen" etc - but has also expressed relief that she finally knows for sure who and what he is and how she feels about it.  Bim has essentially eradicated him from her life and thoughts.  She has him programmed in her phone to go straight to voice mail every time, and she listens to a sentence of his message before she deletes it and forgets about it.  Lim is still more raw about it, but follows essentially the same course.  His complete fumbling of everything this year has given the girls the "proof" (in their minds) that they needed to give themselves permission to move on, and now we just deal with the emotions on the scattered occasions they arise.

3.  Bim and Lim are here what seems to be permanently, and our family life, although disrupted, has settled into a comfortable, normal rhythm.  With each day that passes without the pressure and stress of swapping, Bim especially seems happier and more content.  Lim, of course, is tough to read because of everything she has been dealing with, but I cannot imagine what a nightmare this would all be if she were still bouncing houses.  It has taken every creative approach and ounce of patience and gentleness I possess to work with her and deal with the mood swings, fears, neediness etc she exhibits.  If she had to deal with the emotional wasteland that is the biof, Lim would be in a very bad place.

4.  I have completely reformatted my attitude about and approach to training and racing.   So much of my mental and emotional energy has to go to Lim (and to a lesser extent, Bim as she adjusts to the hopefully temporary paradigm) that I simply HAVE to accept and embrace rest days and more targeted training.  I have had to become much more flexible and forgiving in terms of what I do, when I do it, and how I feel about myself/my training.  Where before I felt almost compelled to train a certain amount, and it became almost a burden, I know look at it as opportunities and blessings.  I am trying to get more out of less by making the less into more, if that makes sense.   I feel, generally, more focused and at peace with the training and my goals.  And, on days I don't, I rest, or just swim (rest with chlorine).
The Gate River Run race was truly a shock to me, both mentally and physically.  Before the concussion I had been hoping to do enough speed work to really have a chance at beating my old PR (1:07).  After the injury, I lowered those sites to trying to beat my only other GRR time (1:11).  I consistently ran 6 miles two or three times a week, but I only did one run of 9 miles (the week before the race, lol) and didn't really think there was much hope of holding sub 7:30s for long.  So my plan was to just ease into the run and see how it went.  Which is why, when I looked at my watch after the first mile, expecting to see a 7:15-7:30 pace, and saw a 6:27, I silently (I hope) let loose with a lengthy string of expletives, most of them wrapped around the word "dumbass".  Eventually I decided that the 6:30 would even out an 8 minute mile over the bridge, and soldiered on.  Sometime before mile 3 I saw Mark, who would assuredly be finishing 3-5 minutes ahead of me.  I passed him.  I also saw Lim's track coach and her uber speedy 50 something mom, who I also knew would be running in the 1:04 or faster range.  I passed them.
More expletives, accompanied with terror at how I was going to explain to the girls, who were getting text updates with my splits, why I died such an awful death in the latter stages of the race.  Meanwhile, the watch stayed stuck in the 6:45-6:55 pace range, and the miles ticked by.  I grabbed water at every available water stop.  I pictured Lim and how she would blame herself if I did not run as well as she knew I had originally hoped to run.  I thought of the IM Lou finish chute and tried to keep imagining I was running down that.  The 10k mark passed by and I almost choked at the split.
At mile 7 Lim's coach and her mom pulled even and slightly ahead.  I ran a few yards behind them, still muttering bad words at myself, interspersed with reminders of the short distance left to run.  Up the bridge we staggered, and I realized that, barring falling OFF the bridge or killing myself on the grates, the finishing time was going to be faster than I'd even hoped for before the concussion.  And, it was :-)
After the race I realized that the experience could turn out to be a watershed kind of moment for me, as mentally AND physically I felt better than I have in a long time.  Going with the "smart less-is-more" approach, mixed in with a strong desire to do well and make Lim smile, seems to have potential.  Stay tuned.

5.  Lim WILL be a much different person on the other side of this mess.  She is already different in some ways.  She's had to deal with such serious issues and questions since this year began -- from the situation with her biofather to the many topics raised by the concussion and struggles since then.  Unfortunately, Lim has been forced to deal with mature issues -- loyalty, trust, weighing pros and cons of accepting someone as is and the cost-benefit analysis of maintaining a relationship with someone, finding inner strength to express unpopular feelings etc....  as well as timeless issues -- death, what makes a human human, disappointment, loss, uncertainty, faith, God, heaven, perseverance, patience, fear etc (you get the gyst... and you should be glad you are not in the spotlight trying to figure out how to answer/discuss all these topics!).  She's learning to apply the qualities that make her a good athlete to life in general and to her recovery in particular.  She's learned that some things that seem like they matter are actually a luxury, not of true importance.  She's discovered that complete strangers will show more concern than some you thought friends.  She's learned to get knocked to her knees by pain and frustration and then struggle back to her feet, dust herself off, and carry on.   When (if?!) she ever feels like herself again, I personally would not want to get in her way as she pursues her academic and athletic goals.  She was mentally tough in many ways before this; now...!

6.  In keeping with #2, the girls have also discovered that, in contrast to their biofather, they can 100% trust and rely on Matthew.  When the going has gotten a little rough this year, Matthew has been a rock for everyone.   He shows his love and support for them in so many unselfish ways with no fanfare.    The girls know without question that our family is Matthew's top priority.  They have never had that feeling from their biofather, or any other male in their lives, before.  That security is priceless.

...that's my why, what's yours?

Don't blink...

Today might be "work a country song into your blog day"...  I can think of a couple, right now.

The first song, of course, is "Don't Blink" by Kenny Chesney.  As in, isn't it crazy/scary/amazing/stunning how quickly something can change in a heartbeat?  One decision, one action, one accident, one misstep, one impulse... or one involving someone else that affects you... each has a ripple effect on our lives.  And a lot of times, we won't ever know the extent of it.

Think about it.  Think about how each choice, even some innocuously minor ones, ripples across your day and future.  For example: the stories of people who, for whatever random reason, were not at their desks or in their offices as they usually would have been on 9-11 when the planes hit; the biofather choosing to take someone else's kids on the "special cruise" in January; Lim laying out to try and make an interception, on the last play of her football career; the 14 year old soccer goalie here in Jax who dove to try and block a shot, on the last play of his... life.  You'll never know if your last second decision to zip into starbucks this morning took you from the spot where the text messaging trucker decided to be at 80mph in rush hour traffic.  Or if it put you there.

Life is filled with a whole lot of seemingly disconnected, even menial, events and activities.  Thoughts.  Choices.  Most times, we do not stop to consider how something will alter our futures.  Most changes are imperceptible.  Unremarkable.  Most of them.

Then there are moments where we blink and the whole world has changed.  Without warning.  Without even knowing it at the time.  I think of my dear friends who are the poster children for not letting adversity change your pursuit of your life goals -- Kevin and Heather.  I doubt either one of them heard dramatic music or saw a shift in the space-time continuum when Kevin noticed blood in his urine.  But, that sliver of time signaled a sea-change in their world.  Amazing. 

The biggest "don't blink" moment in my life, and the lives of the girls, occurred back in September of 2007.  Who knew a simple email, chatting about triathlon, would lead to the most important and positive relationship and blessing of my and the girls' lives.  One impulsive email.  Life altering.  Amazing.

October 31st, 2010.   January 22, 2011.   Two dates where split seconds, without warning, changed everything in our world.

January 22 -- Lim instinctively dives for a juggled ball to try and intercept.  Her teammate comes late (and needlessly, imo) over the top and clocks her behind her left ear.   I didn't catch the hit, but I caught the moment about a half second before hand:

15 minutes before, she had run for what would be her last touchdown:

 

Who knew...?

Don't Blink...

October 31.  The girls, Matthew, me, and biofather meet friends from swimming to trick or treat before the girls are scheduled to go back to his house.  They get in his car to leave and we drive towards Baymeadows.  They call, because someone left something in our truck.  We stop at the neighborhood community center here.  And, for reasons I am still unclear on, they refuse to go with him.

Since that time, they've spent a grand total of eight... 8... EIGHT! days with him at his house.  Four months.  Eight days.  By HIS choice.  Two years ago we were teetering on the edge of a custody battle, with him demanding limitations on their contact with me while at his house, my ability to work or volunteer at their school on "his" days, and all other sorts of crap.  Now, he has skipped, missed, blown off, or ignored (depending on my mood) three straight visitation weekends.  Without a word.

They have not seen him since January 15th other than an ill-fated counseling session.  They do not call or respond to his calls, text or respond to his texts, or have any interest in seeing him.  Christi did speak to him briefly when she accidentally answered her phone when he called one day.  She was too polite to just hang up on him.

All of a sudden, I am a full-time mother...Matthew is a full-time father... our schedules are our own to plan...there is no build up and dread and sadness each week....no stress about keeping a phone on hand to make sure we don't miss a call or text from the girls...no frustration about a week at a time of limited contact and zero parental control...no anger at all the loneliness and wasted time they spent at his house watching tv or playing/reading alone in their rooms...

We can make plans without cross-referencing with the custody schedule.  Now our only frustration is how to fit everything we want to do as a family into 52 weeks a year (assuming Lim returns to something approximating normal anytime soon... otherwise, things get dicey).

We can set, and keep, a family routine ad infinitum.  Sleep habits, eating habits, activities, social stuff, events, trips... all on us, with no interruptions.

I, for one, assume the monster, as in all good horror movies, will rear up one more time from the undead and try to wreak havoc on things... but the girls have, for the most part, moved on already... and it is hard to imagine things ever returning to what they were before October 31st.

One interesting result of this permanent parenthood -- a weird re-organization (deflation? redefinition?) of my triathlon training motivation.  In the past, I busted my butt on the weeks the girls were at the biof's - in part, because I had the time, and in part because I needed an outlet for the emotion (yes, anger was a big part of it).

Now the anger has receeded, and I feel a strong need not to blink lest I miss something as we enter the home stretch of Bim's career as a minor and creep closer to that same spot with Lim.  Bim enters 9th grade and Lim 7th in the fall (well, we ASSUME she will enter 7th, sigh)... how is that possible?!

We've learned a very hard lesson, some of us at a very young age and some of us....not so young... and that is, not to assume or take anything for granted.  Soccer, which Lim loved playing and planned to play again:  gone.  Flag football: gone.  1st Track season:  Gone.  The majority of an entire quarter of a school year: Gone.  Two months of swimming: Gone.  Events with friends:  Gone.  Triathlon and summer swim season: hanging in the balance.  None of us really considered the possibility of one, much less ALL, of those things.

One split second.
 
Perspective:  imperative.  Appreciation: just as much so. 

My triathlon goals and training just seem so... expendable... compared to my role as a mom/coach/cheerleader/counselor/facilitator/disciplinarian/hug dispenser/pillow/keeper of the schedule/perspective provider.    That is not to say it does not matter to me, or that I am not cobbling together SOME form of training, unplanned and unfocused though it may be.  It IS to say that, my legacy to this world, such as it is, will be my children, and how THEY interact with the world and the people around them.  How I do in a race will have very little ripple effect on the world around me.  How I do raising my daughters -- now that... THAT matters.  That will effect people and things in ways I will probably never know.  

My favorite part of the whole thing is teaching them to laugh -- at themselves, at life, at me.  Sounds funny, considering how full of myself, er, deadly serious,  the above paragraph probably sounds, huh  :-)    My personal credo: live with passion and intensity, laugh often and unabashedly, and ALWAYS try to figure out how to be a better person and inspire the people around you to live, laugh, and grow along with you.

and don't, under ANY circumstances, blink.

...that's my why, what's yours? 

It may be a looooooong tunnel.

Yesterday, Lim got to use her brain.  She and her math teacher sat down while the rest of the class was at music, and began going over the concepts she has missed.

By both Lim and her teacher's report, the effort lasted about 15 minutes before the lights flickered and died and the teacher called a halt so Lim could put her head down and rest.  He said he may have pushed her too hard (!) and would back off a little bit next time.  I'm not sure how far you can back off from almost-nothing, but bless him for caring enough to try.

She resembled a pale, blond space cadet with deep dark circles under her big blue eyes when I picked her up after school.   She gave me a confusing account of the math and her efforts, and ended by telling me she could try one of the math homework problems IF she felt up to it.  We did try it, and I encountered my first test of my newly installed "poker face system" as our formerly sharp-as-a-tack, quick study, math-whiz daughter struggled mightily to remember/apply basic concepts and focus on one new one.

After 10 minutes of that, the pale blond space cadet turned into a full-blown zombie (aka Zed, aka the british term for zombies, or so my zombie obsessed husband tells me, lol).  She was in bed by 6:15 and asleep by 6:30. 

This is... challenging...


...that's my why, what's yours?

Proverbial lights and tunnels

So, after 6 weeks of struggling and frustration and complete alteration of our family life and dynamics, we appear to have a plan to progress forward.

Towards what, I really don't know.

Now that the doctors are using words like "adaptation" and "chronic pain" and "retraining" with regard to Lim's ability to become an actively participating member of life, I feel both relief and increased tension.  The former because we actually can start doing something proactive.  The latter because I have no idea how this is going to progress.

Everyone handles pain and challenge differently.  Chronic pain affects demeanor and behavior.  Anyone who has ever had a migraine or any other sort of lasting headache can attest to how disruptive it is to every day concentration, interaction, and enjoyment.

Now have that migraine for months on end, and try to learn math and science and language arts in a noisy classroom with kids who have no idea what you are struggling with and teachers who will do their absolute best to help you but will have to walk a tightrope of pushing enough but not too much.

Never know from moment to moment whether you will be clear headed (relatively speaking) or not.

Be wildly restricted in all your favorite activities because all of your energy needs to go to simply getting through the school day and slowly increasing your actual participation and learning.  Once you do that, add in homework first.  And studying.

THEN, if and when you have anything left over, you can try things you love but that make you feel kind of awful.  Like swimming.  Running.  Reading.  TV.  Music.

And do all that with a positive attitude and without getting frustrated or discouraged, all the while having no idea of when things will get better.  If they do.

And be 11.

Now I, as her Muh THER!! and prime role model, knows all this is coming, and am gearing up as best as I can... (Anyone have any patience pills?  I have a lot at times, but this could tax that supply dramatically)... but it is imperative that I show none of this to her, and just handle it as it comes.  So we, as adults (mostly me, really) will need to ride herd on our OWN frustration and anger/sadness that comes with watching a child struggle and not being able to do a damn thing about it, while simultaneously assuredly bearing the brunt of that child's emotions and struggle.

I'm not sure whether to ask for combat pay or a merit raise.

I am an impatient, want results now, want to know the schedule, want to have control over my life person whose brain spins endlessly over if-then possibilities until it gets answers.  (Sometimes Lim's not the only one with a splitting headache, lol).

But now I need to put a cork in all that and set an example of patience, long term perspective, steady progress towards small goals, and accepting limitations while working to expand them.

I am afraid of letting Lim down.  Of getting impatient.  Of letting my frustration shine through.  Of not being able to walk the fine line of knowing when to push and knowing when to back off and hug.  Of knowing how to offer sympathy and empathy but not coddle.  Of helping Lim take ownership of her progress while still feeling supported and understood.

Maybe being a pillow wasn't the hardest part...?

...that's my why, what's yours?

Touring NE Florida's pediatric neuro specialists...

After struggling to get in to see any sort of specialist we enjoyed a waterfall of appointments this week.  Monday Shands-Jax called to say they could get Lim in to see Dr. Spierre that afternoon (rather than March 21) and we drove to Gainesville for an appointment with UF  Pediatric Neurology yesterday.

I am going to post the summaries I've sent to her teachers and a few friends, rather than recreate the wheel.


    Subject:     Lexi/Mon PM aka "The Plan"
    From:     Sara DiPaolo
    Date:     February 28, 2011 7:09:54 PM EST

Hi --

Today we had an on-very-short notice appointment with UF/Shands Pediatric Neurology rehabilitation specialist Dr. Spierre at 3p.  I am going to keep the UF Gainesville Dept of Neuro appointment, but Dr. Spierre was BY FAR the most useful appointment so far.

As succinctly as I can make it:
We are on the right track with how we are handling her at school.  We should continue to gently seek to expand her presence at and participation in the academics.

More specifically:
1.  No need for neuropsych testing this soon ("all it will show is that she is struggling, which we already know"), so that appt Wed gets changed.
2.  Elavil is fine, but we should add in Tylenol as needed
3. The headache does NOT concern the doctor in so much as it is an annoyance.  Once it crosses over into impairing concentration or is accompanied by dizziness or nausea, cease what she is doing until it subsides.  The doctor said she would only damage her brain more by running into hard objects.  They think.
4. Give her a few more days of being "present" for the entire school day, and then SLOWLY start adding in participation.  I think she was participating some on a very limited and simplistic level in some things today, which seemed to go fine.
5.  The goal is to have her back to full presence AND participation (homework included) with in the next month.  This will probably require both a bit of encouraging Lex to push herself AND knowing when to back off a bit.  You (esteemed teachers) have been around that age child plenty and probably know Lex fairly well; I know her quite well. I trust your judgment and will send feedback if I see anything at home...?
6.  So.... I talked to Lexi and we thought that, if you agree, she'd like to start Thursday to use PE/elec period to try and get up to speed on whatever you want her up to speed on, and start trying to participate in Math especially.  I truly do not think she will (or has) milk things, so hopefully she can provide reliable feedback to help drive the progress.






******

    Subject:     Lexi Tues PM
    From:     Sara DiPaolo
    Date:     March 1, 2011 7:34:54 PM EST
Hi --

We trekked to UF in Gainesville today (withOUT a speeding ticket in Starke, yay me) and met with a pediatric neurologist.   I still think they are making this up as they go...

The good news is, the UF Dr and the Shands Dr from yesterday espoused basically the same philosophy.  The Dr today did a VERY thorough assessment of Lexi physically and cognitively - by far the most thorough yet.  We were in there for close to 90 minutes.  She did some tests that no one has done yet.

She agreed with Dr. Spierre that it is time to start pushing a bit more -- "chronic pain" management and adaptation is how she put it.   She liked the plan we've come up with to reintegrate Lex into functional academia.  She even encouraged Lexi to try some light exercise.  Basically, we seek to expand her tolerance for stimuli.  Something tells me that is going to be just as challenging in its own way as the last 6 weeks have been in theirs.

She believes the headaches "should" end over time.  She also determined that a lot of Lexi's dizziness is associated with altered head position/plane, and we have some actual rehab exercises to start doing for that.  Something about the impact really freaking out the hairs in the ear that contribute to equilibrium (layman's description, lol) and needing to calm them down and retrain them not to spaz out every time she tilts her head. 

This SHOULD conclude our doctor's appointments until after spring break. 

*****

and, my email recommendation to EHS:

    Subject:     Thoughts
    From:     Sara DiPaolo
    Date:     March 1, 2011 7:57:29 PM EST

Hi --

Please feel free to delete this or share it with whomever :-)

I think that there are some things we did right:

I would definitely do the CT scan early, as we did. 
I also would definitely do the lock down for the first two weeks (or until symptoms cleared, whichever came first). 
I think the slow but steady re-integration to being physically present at school is perfect, as is the re-introduction of participation and concentration.

and some things I would do differently:
I would seek to schedule a Pedia Neuro consult immediately and have it set for the end of the second week post-concussion (or beginning of third).  That way, if symptoms resolve, go directly to the re-integration.  If they don't, go to the specialist without a 6 week delay.
I would look into the Elavil and stay on it consistently if headache etc persists past two weeks.
I would also do an MRI towards the end of the 2nd week of symptoms to rule out bleeding or visible brain damage.

I think that we may have been conservative a week or two longer than necessary (because that was what was being drilled into my head by the regular doctors), which is fine, but if we could have avoided two extra weeks of frustration and solitude... 

My overall impression is, be very conservative initially, but at some point the focus turns from healing to rehabilitation and adaptation.  The pedia neuros seem to be best suited to make that decision.  So, I highly recommend obtaining a referral to Shands Gainesville, as they got us in quite quickly compared to the logjam that is Jacksonville's limited pediatric specialists.

For whatever it is worth.


...that's my why, what's yours?

Everything you never EVER wanted to know about Post-Concussion Syndrome

A lot of people have asked me what the prognosis is for Lim, and what can be done or tested or prescribed etc.  So, I thought I'd put together some of the research I've done on PCS for anyone who is interested.

A few points of note:

1.  Post Concussion Syndrome is a collection of symptoms experienced by SOME people who suffer a concussion.  Not everyone experiences them and what symptoms and how badly people experience them varies from person to person and concussion to concussion.

2.  There is NO proven correlation between severity of initial impact (or the TBI:  Traumatic Brain Injury) and the extent or duration of PCS.

3.  Symptoms of PCS can last for days or months after the initial TBI.

4.  Experts now tend to classify concussions as "simple" or "complex" (the latter meaning symptoms last longer than 10 days).

5.  There is some evidence that people can be genetically predisposed to PCS symptoms.

6. Experts differ on whether PCS is caused by damage to the actual brain, a disruption of neurotransmitters, or whatever it is that causes depression/PTSD etc.  So, one path of "treatment" is to put victims on Elavil or some similar antidepressant for a time.

7.  PCS does not follow a timetable, and it does not trend linearly.  That is, improvement does not tend to be consistent or predictable.  One day may be somewhat better than the last and the next may be worse.  Symptoms can disappear and reappear.  Lim's headache appears to ebb and flow like the tide depending on the amount of stimuli around her and the time of day.

So, what do we know about Lim so far:

1.  She did not black out on impact, but she was immediately dizzy and headachey.

2.  Her CT scan, done two days after the impact, was normal.  Her MRI, done almost 4 weeks after impact, was normal.  So, not visible damage to her brain has occurred.

3.  She has no neck or back pain, ear pain, loss of strength in appendages, or vision issues.

4.  Cognitively she is fairly sharp (counting backwards from 100 by 7s out loud and some other simple tests the Mayo Dr. performed last week) and she has been very inquisitive and communicative.

5. She cannot read without the headache spiking.  She cannot watch TV.  She cannot listen to music for long without the headache spiking.  Artificial lights cause the headache to spike.  Loud voices do the same.

6.  Once the headache spikes, it takes a couple of hours of quiet rest to return to baseline.  At no point has she been headache free since the impact.

7. Her appetite is hit or miss and has been since the impact.

8.  Her sleep is very disrupted.  She is exhausted but she cannot sleep much during the day.

9. Sometimes Lexi is there.  Sometimes Lexi is not.  It is scary and frustrating when she is not.

10.  We have another appointment with Mayo on Tuesday.  Right now we have an appointment with UF Shands on neuro on March 21.  Nemours won't see her until she has had symptoms for TWO months, aka March 22.

11.  I am working on getting Mayo to set up a consult somewhere else, sooner.  Getting such a creature is very difficult, especially from Clearwater in the middle of a swim meet on a holiday weekend.

12. Lim has now missed 4 weeks of school.  She went for a total of TWO classes last week.  It did not go well and she actually seems worse than at the beginning of the week.  This could be because I am weaning her off the Elavil.

13. Our days consist of:

Lim wakes up in a fog.  I make her hot cocoa and maybe some french toast. 

We snuggle on the bed for a bit. 

She takes a bath and I try to work out or do chores. 

She lays down on the bed.  I join her. 

At some point we go get a smoothie and maybe sit outside taking pictures or throwing the ball for the dogs. 

We lay on the bed. 

I run to EHS and meet Bim after school for an hour to chat and give her her swim stuff.

I go back home and either snuggle on the bed with Lim or sit outside, depending on how she is feeling. 

M picks up Bim and everyone but Lim eats dinner (Lim usually has no appetite at that point). 

Lim and I go upstairs and snuggle while she starts to fall asleep, and Bim does homework while Matthew does chores.

I leave Lim half or all the way asleep and spend an hour with Bim before she goes to bed. 

Insert doctor's appointments as needed.  On days she tries school, I drop her off and park in the lot and either run or read for the 45 mins she is actually in class.  If she gets to stay any longer I will probably be parked there as well until she demos she can handle a predictable chunk of time.

Occasionally M comes home early and I stay at EHS and run and watch Bim's practice.

Who wishes they were walking in my shoes NOW...?

Here are a few links to info I have found, if you want to read up on it for yourself:

http://www.mayoclinic.com/health/post-concussion-syndrome/DS01020

http://www.training-conditioning.com/2010/08/30/what_happens_next/index.php

http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2011/01/29/multiple-concussions-raise-teen-athletes-health-risks

http://www.examiner.com/sports-in-boston/marc-savard-still-suffering-from-post-concussion-syndrome

Recent interview with Sidney Crosby:

http://www.youtube.com/watch?v=Z3G__Z0WdKM

...that's my why, what's yours?

The Great Oak

Once again I am reminded of how completely blessed the minis are to be able to attend the school that they do...

From the moment I contacted Lim's teachers to let them know of the concussion, EHS has been phenomenal in their response. Whether it was reassuring phone calls from the guidance counselors, frequent emails from her teachers and coaches (notably, NOT her swimming coaches - they've been pretty much out of contact... Instead, I am referring to her track coaches, who had only met her a couple of times before her injury but who have been wonderful in their support), cards and posters from classmates, or the fantastic post-concussion policy the school has in place, EHS has been a bright light in a fairly dingy month for Team DiPaolo.

As Lim and I sat outside her classroom waiting for her class to return from lunch today (we decided to try again but wait until after lunch, when most of her academic classes were today), we wandered over to the Great Oak that is the centerpiece of the campus. The word "enormous" does not do this tree justice. Stately. Imposing. Aged. Peaceful. Elegant. Stunning. You name it, it IS it.

Lim and I stood looking at the tree and down towards the area where the middle school kids would emerge from lunch. Lim described the post-lunch habits of the average middle schooler. Upper school kids walked past occasionally. The campus resonated with an amazing tranquility, broken only by drifting sounds from the road and the occasional young voice. Squirrels (always squirrels in our world, huh) scampered around fearlessly. We strolled over to check out the newly opened classroom building, replete with a center common area full of flowers and worthy of a college campus.

And once again I thought to myself "self, your children are beyond blessed to be able to attend a school like this on a campus like this...". And all of my "selves" nodded in unison (an unusual occurrence, believe me) in agreement.

Having attended a college planning meeting earlier today for EIGHTH GRADE parents, where they presented us with handouts detailing various academic tracks and the typical school that following that track might lead you to... As well as providing copies of actual transcripts of current students to provide talking points on the various types of course progressions students can follow and how they appear to college admissions counselors... I continue to be amazed at the advantages attending a school like this provide.

As the kids and teachers wandered back to the 6th grade area after lunch, Lim saw one of her track coaches (remember, this injury happened exactly four days into track season) who seemed genuinely excited to see her and took the time to stop and talk to her and offer words of encouragement and support. Each teacher and student greeted her happily. Lim visibly brightened, although I could tell she was already feeling woozier after only a short time on campus.

I've heard people scoff at the price of private school, and question whether the value received is worth the expense...every family makes it's own decisions based on it's own priorities and resources. All I know is, I can't imagine what a nightmare life would be like right now if we had to deal with a public school and all of it's inflexibility, red tape, and anonymity.

In the event that the biofather decides to retaliate against the girls by declining to pay their tuition, M and I will do whatever it takes to ensure the girls finish their high school careers at EHS. As M likes to say, we both grew up poor and we are NOT afraid to go be poor again, lol. Walmart greeters as a retirement plan, here we come.

I'm not sure words can ever express how grateful we have been for the support and understanding coming from the EHS comnunity, or how grateful I am that the minis have the opportunity to attend a school like this....

Lim has now joined me in the truck (my new home away from home will be the teacher's parking lot at EHS until Lim shows she can make it through more than a period at a time) and is resting with her eyes closed while her classmates attend PE. In 20mins or so she will go back in and try to make it through another academic period, although her headache spiked substantially during just one class period. Tomorrow she gets an MRI at noon, and hopefully we will be in to see a neuro doctor at UF Shands soon as well.

Baby steps down a long long road. I wish the Great Oak could talk. Maybe he could impart some patience and wisdom and instill some of his peaceful strength in Lim (and me...). I know that this whole experience is likely to make Lim a VERY centered and mentally strong and resilient person, and it has probably forced me to learn, or at least temporarily accept, a thing or two too... But I still wish the Oak could talk.

...that's my why, what's yours?

Tick tock tick tock...

Week four.  Lim went to school this morning and made it through homeroom before her headache spiked dramatically.  She toughed it out another half hour or so before we came home.

This scares me.

There, I said it.  I don't understand why she has gotten better to this point and stopped.  Why she can't read.  Why she can't handle noise or lights very well.  Why she seems stuck in this awful limbo.  Nemours childrens' hospital neurologists won't even SEE her until she has had symptoms for TWO MONTHS.  The Mayo doctor we've been dealing with is out of town until Friday.  *I* am out of town Friday.  He's booked Monday (a day off of school, thankfully) so we are going Tuesday at 7a.  (And, I just scheduled an appointment for tomorrow morning with her regular Mayo doctor, if only to reassure me that there isn't something else we could or should be doing).

But I don't know what he can tell us, other than "it takes time".  I suppose we could kick back up the dosage on the Elavil (and I may try that on my own anyway) but that creates some potential issues on the back end when we wean her off of it.

I've been reading about the injury suffered by the Penguins phenom, Sidney Crosby.  He has now missed 15+ games off of a mild concussion from being clocked in the same exact spot as Lim took her hit.  There is no timetable for his return, but there IS a lot of discussion about his toughness, and whether he is justified in waiting to come back.  After all, he IS the leading scorer on his team, so isn't he letting his teammates down by not coming back and risking his entire future?  (insert rolling eyes here).

------------------

Writus interuptus, first cousin to trainus interuptus... It is now Tuesday afternoon. Lim awoke feeling a bit worse today, and off we went to Mayo. Our regular Mayo doctor wants to set an MRI and get a neuropsychology/neurology consult for her, either with Mayo or at Nemours. Lim spent much of today dozing on the bed with the mutts.

Back to Sidney Crosby and the NHL. In researching what happened to him I also found a number of other players who have been flattened by PCS, both this year and in the past. I've read of the possible predisposition to more severe symptoms and of its possible relationship to PTSD and depression (hence the dosage of Elavil Lim is on right now), and I've seen that there is no timetable... and that some people continue having symptoms for years after their last concussion.  In other words, Lim has good company.

None of this eases the concern and frustration I feel for Lim. She is now coming up on an entire month out of school. Her flag football playing days are over.   So too her soccer playing days, brief as they were and talented as she appeared to be.   Some glitch in her system led to this complex reaction to the original brain trauma and we have no interest in experimenting with future impacts and repercussions (reconcussions?).  She is on the verge of missing her first high school track season, which had started off so promising.  Lord only knows when she might be able to handle the exertion and flip turns of a swim practice...

At this point I'd just be ecstatic for her to be able to read again comfortably.

This entire trip has been a very lonely journey for both Lim and me. Matthew and Bim have been helpful and flexible and supportive (Matthew a bit more so, of course) in spite of the serious disruption to the family routine.  Bim has done her best to understand why things are different and to not be too resentful, but it is still difficult on her.  The radio and tv are generally off and Bim has to keep a good governor on her normal boisterous exuberance, as loud noises still greatly bother Lim's head.   My attention has been divided differently, and, even though Matthew and I have worked together in a concerted effort to get me some time with Bim and him some with Lim, she has definitely gotten the short end of the stick.

But, in the end, Lim and I have been united in our isolation. While Lim expresses her feelings pretty clearly to me (sometimes in conversational form and sometimes in the form of "Mom taking the brunt of the 11yo frustration storm"), I'm actually struggling to find a way to express mine - time and opportunity are in short supply, and writing is hit or miss as well.   When I actually get 5 minutes in a car by myself I debate whether to call a human or crank up the music I seldom hear anymore.  Working out feels more like disloyalty to Lim than an outlet.  Besides, I'm not even sure I can describe what I feel anyway.

The gamut of emotions this past month encompasses empathy for Lim's own feelings and a witches brew of my own. The crazily full calendar we look forward to every spring and summer is starting to loom large on the horizon, and all the events we anticipated are now clouded with question marks. And when those question marks will be answered is ALSO a question mark... And, as anyone who knows me knows, I hate unknowns. The blinking question mark exists even within the 24hours of any given day, as whether Lim can go to school, when she goes, and how long she stays is all TBD on a rapidly changing basis.

As with anything, Lim and I do much better when we take the future in hourly or daily increments and refrain from looking too much at the big picture. Doing that helps diffuse the impact of how quickly time is racing by, and how much she is missing out on right now (and for the foreseeable future). It helps us avoid dealing with questions no one can answer, like, when will she be able to read again, when will she be pain free, when will she be able to actually last through a day of school, when will she be able to start actually participating in school, when will she be able to get caught up academically, when will she be able to swim or run or watch tv or listen to music....

And what if the answer is.... Never?

Now THAT is scary.

 ...that's my why, what's yours?

Things I've learned during my life as a pillow

As you may know, I've spent the better part of the past 8 days channeling my inner vampire (irrational fear of sunlight) while doing a spot-on imitation of a pillow pet (let's call it a "pillow-mom" - it's a pillow, it's a mom, it's a pillow-mom!) for human and canine alike.

So, given the sheer quantity if time spent in reflective silence, I've learned a few things about myself and the world. For what it is worth, in no particular order:

1. Snuggling with a quietly weeping 11yo and knowing you cannot make it better is a sickeningly frustrating feeling.

2. Seeing my daughter smile and giggle for the first time in a week makes me cry.

3. Apparently the reason I became an ironman athlete was to prepare me mentally for 8 days (and counting) of silent immobility.

4. German Shepherds make wonderful nurses EXCEPT when the doorbell rings or the dog next door comes outside, at which point they return to being completely brainless and clutzy.

5. Head injuries follow no timeline for recovery, which means uber-planners like me are immediately forced to find some inner-equilibrium and flexibility we didn't know we possessed.

6. The simple kindness of people both friend and acquaintance can brighten the day dramatically, even when that person has no idea she/he has done so. Unexpected kindness is a powerful thing that takes minimal effort.

7. Spending the majority of their time at our house has worked miracles for the minis' relationship with each other, and Bim has really stepped up since Lim's injury.

7a. Seeing Bim hug Lim and tell her "I love you" without prompting makes me cry.

7b. Seeing Lim's big smile after 7a makes me cry harder.

8. When the doctors say kids with PCS can have wildly vivid dreams, they are not kidding. Apparently Bim and I were shot in the head and a kitten drowned in the first two nights, and each morning we play that "want to hear about my dream last night" game.

9. Lim has an amazing mind, and the best part of this whole thing has been getting to observe its' fascinating workings. I will never understand why people don't really talk with their children; few things entrance me like glimpsing the development of my kids' personalities and thought processes.

10. Squirrels are hilarious. No wonder dogs sit and watch them all day.

11. When your right shoulder is used extensively as a pillow for a week, it does not particularly enjoy swimming.

12. It is important to fight the guilty feelings and take a few minutes out of each day for myself while serving as universal pillow. It helps make the patient a bit more independent and reinforces my tenuous grasp on sanity.

13. Anger is counter-productive, but we found ourselves struggling mightily with it as we hunkered down with Lim while the biofather galavanted off on a cruise (neglecting to contact me even once in five days to check on Lim).

14. When my daughter does not want anything sweet, she is really not feeling well.

15. I can survive having a completely disrupted and up in the air, fly by the seat of my pants training schedule... But it takes effort and occasionally talking myself down off the cliff and back into perspective-ville.

16. There is something very peaceful about falling asleep with a shepherd draped over my stomach, one smushed up against my legs, and a little blondie smelling sweetly of Angel perfume snuggled into my shoulder.

17. Sara's rule of pillowhood: the odds of your child falling asleep for the first time all day are directly proportionally to the amount of pressure her skull is putting on various nerves in your shoulder.

18. Dog fur should be a food group.

19. There are one heck of a lot of hawks in the preserve behind our house, and they have opinions on EVERYTHING.

20. EHS has the most progressive concussion policy and the most thoughtful teachers and coaches. 20a. Seeing all the cards and posters Lim's teachers had her classmates make for her made me want to hug them all. It also made me cry.

21. For someone who doesn't usually cry unless I am REALLY REALLY angry or completely at wits end, I've teared up a lot this week.

22. It is fascinating seeing the responses of people to what's going on with Lim. Some people have amazed me with their concern; some have stunned me with their indifference.

23. Choosing to lie about going on the cruise and completely ignoring the adversity Lim is dealing with, while still sending glowing messages about how great the cruise is and how the girls should go with him on one soon, may prove to be a nonproductive relationship building tactic. That sound you heard may well have been the final nail in that particular coffin.

24. Even after all this time and all the lies and boneheaded choices, we still have (or had) the capacity to be amazed at the sheer gall. Unfortunately, that gall hurt an already reeling little girl, and. That's. Just. Wrong.

25. While this is not how I would have picked to deliver the lesson, this has provided us with a means of discussing and learning about patience, and long term views.

26. Squirrels turn to stone when hawks are nearby. Even their tails.

27. Just because you are spending your time as a pillow does NOT mean you actually get any rest.

28. After 9 days of lock down, hanging with Lim is like hanging with a mexican jumping bean with a concussion.

29. Eye covers, like the kind you use on airplanes to sleep, are god's gift to pillow moms, because I can at least see out the window and have some light to read by while Lim is in darkness.

30. Telling a child who lives to read that, not only can't she read for herself, but she also can't listen to books on tape, is like telling me I can look at, but not actually eat, chocolate.

That's it for now... back to the dark side we go.

...that's my why, what's yours?