Lost a Family Member?

I haven't written on my blog in ages.  I have been following the story on Saeed Abedini for awhile now.  I decided to try an experiment in contacting our U.S. Senators.  Below is a brief synopsis of my experience and an email to family and friends:


Some of you know that I am following the plight of Saeed Abedini.  He is an American imprisoned in Iran for basically being a Christian.  His wife has worked tirelessly on his behalf to try and secure his release. We all get moved by different stories at different times and this one has struck a cord with me. Saturday there are prayer vigils around the county on his behalf.  There's one at the Capitol at 10:00 a.m.

What I really wanted to share with you was my experience of calling our two U.S. Senators to see what someone does if this happens to one of us.  No, I'm not planning to go to a foreign country and end up jailed anytime soon, but I was curious about the process.

I started with Sen Franken's D.C. office and they said two things: call the State Department and call our St. Paul office.  The St. Paul office staffer had very little idea of what to do.

I called Sen Klobuchar's office and was told something similar - call the White House and call our Mpls. office.  The Mpls office staffer at least knew that I would have to be a close family member and would have to fill out a form similar to a Power of Attorney that would give them permission to work on my loved one's behalf.

UGH!  I can't believe that advocating for a family member is that complicated.  Here we are *supposedly* the most powerful country in the world, and our elected officials offices have very little idea of what to do in a situation like this.  In addition, the attitude I got from 3 out of the 4 people I talked to was "not my problem."

So why share this with all of you?

1. If God moves you, please pray for Saeed Abedini.  His family needs him home.  He is being treated horribly.

2. The experience of calling for help to our US Senators showed me that there's a big disconnect between our representatives and issues of their constituents.  Sure they're busy, but I would think if a constituent called and was looking for help, they'd want to do everything possible to help.  Nope.  They just want to get on with their day.

If you have interest, google Saeed Abedeini and learn more.  I know, we're all busy, but what if this was our dad, brother, friend etc?

Thanks for reading,

Scott

Movin

We moved rooms today to a larger room.  That's what you get when you're on the long-term plan.

I also started a CaringBridge site as people are not getting notifications from this blog.

Future posts will be at: http://www.caringbridge.org/visit/victoriaprice

Sleepless in St. Paul

It's been a long time since I saw "Sleepless in Seattle," but I do remember that the premise was much more pleasant than this "sleeplessness."

A doctor asked me how her night was.  I had a one word answer - "terrible."  She could not get comfortable.  We had a pharmacy of medications in her starting at 10 pm, but it didn't scratch the surface.  She would be in one position and then ask literally seconds later to be "turned over."  She couldn't get into her preferred sleeping position - on her stomach as that was the worst.

So I spent the night asking God for ways I could help her.  I tried a number of things, but nothing worked for very long.  This morning she received some baclofen and oxycodone and viola! that calmed her for an hour.  Unfortunately, it didn't last long, but she's been more comfortable this morning than the entire night last night.

So today will be the day to advocate for increased medication to make her more comfortable.  She has a number of days left in the process and she can't afford to be "sleepless in St. Paul" for that many days in row.

This is the closest thing I've experienced to what God went through when Christ was sacrificed on the cross.  Watching your child suffer like that causes you to ask a lot of hard questions.  I truly believe that God is in control of everything, but I don't understand why it's necessary for a lot of the suffering in this world.  Oh I know there are good theological answers for all of that, but when you live it, NONE of those words are helpful.

We continue to cry out to God for mercy and comfort and strength for our Dolly.


If you can call it a "bright spot," we moved to a much larger room.  The space is definitely nice, but more importantly, we can get afternoon sunshine - if and when it actually shines.

Good news / bad news

Last night was a tough one for Vicki.  She would wake up yelling that she needed more medicine.  I would ask the nurse to get something, reposition Vicki, reposition again and againg until she would finally take a deep breath and sigh and go to sleep.  For half and hour. Then start the process all over again.  All night long.   I felt like such a drug seeking mom.  I assume this is her response to the withdrawal.  We need to work on a better solution to her night time rest.

The good news is that her back incision looks SO much better.  There is no more puss or spinal fluid drainage.  This is not her surgeon's weekend to be on call, but she came in to see her.  I thanked her for coming in,"I like Vicki."  She was very pleased about the way her incision looks.  It appears the leak has stopped.  She said the infection actually could have stopped up the leak.

The bad news is that they need to have her pump dose down to 100 - 200 mcg/day before they can remove the pump or have very serious effects on her muscles and then kidneys.  They dial it down 10% a day.  By my calculations, that will not be until somewhere between Nov. 15  to the 20th.

The surgeon also said she has been thinking and dreaming of how she is going to plug this hole when she takes the catheter out of her spine.  It is difficult because of her spinal fusion.  She thinks she may have a solution of implanting a different kind of catheter that is impregnated with antibiotics into that spot.  That would also keep the spot open for re-implanting the pump.  That usually does not  happen for 3 months after this current one is removed.

This morning, Vicki is rather sedated.  Why can't this happen at night?  They are working on a concoction to give her at bedtime to hopefully let her rest better.  It is hard when Vicki is unable to say where her pain is or if she is just agitated.  We have many options of medications to give her (all of which we used last night at one point or another) but don't really know which one(s) will help.

As you can see, we have a long road ahead of us.  If you would like to send a card or note to Vicki, the mailing address here Gillette Hospital, Adult unit, room # 7319, 200 University Ave E, St Paul MN 55101.

I have a line to PICC with you

Getting the PICC (Peripherally Inserted Central Catheter) line started was a bit of an ordeal.  The nurse who placed it travels around to different hospitals starting these central lines, so we had to wait for her to get here.  We pre-medicated Vicki with some Valium but she was still quite agitated when they were trying to place it.  The nurse said she had great veins and could get the line in, but with Vicki's high muscle tone she could shut the vein right down so she could not thread the IV up her arm.  I could not distract her enough to settle down.  We decided to stop and pull out "the big guns".  We gave her a little more Valium AND called Dad and the brothers.  She was very calm while she listened to her brothers tell stories of what they had done that day.  Then they had to take an x-ray to see if the tip of the line was in the right place.  It had curled back on itself, so the nurse pulled it back a bit.  Another x-ray.  Still curled.  Pulled back some more.  One more x-ray, still curled so she pulled it back further, now making it a mid-line IV, but fine for the medications they wanted to give her.  They started her on wide spectrum antibiotics until we got more specifics on what bacteria grew from the spinal fluid culture.  They found out the general type of organism and changed the antibiotics today while still waiting for the exact organism and it's sensitivities to antibiotics.

Vicki's sleep has been fitful.  She awakens crying loudly.  It is hard to know if she is in pain or just agitated from the start of the withdrawal.  So far we have turned the pump down twice, 10% each time.  We are trying to keep her on a consistent dose of Tylenol and Ibuprofen with occasional Valium for now.  We will add more muscle relaxants as we keep cutting back the Baclofen.

Vicki's back incision keeps leaking fluid.  It makes me wonder if she will keep leaking fluid after the pump is removed.  That could keep her in the hospital longer.

Tomorrow, Sunday, we will switch places again.  Scott will return to the hospital after having had a couple of days at home and a chance to watch Tim and Andrew in their first hockey scrimmage of the year.  I will host a family birthday party for Tim and Matt.  I have asked for help to make it happen because I don't know when a better time will be.

Things are not looking up

We started the day with a couple of blood tests to see if we needed to be concerned about things.  Her white blood cells are elevated and a test to check for inflammatory markers in the blood is also elevated.  Next they drew cerebral spinal fluid through the pump, took blood and urine cultures.  The infectious disease doctor came up to say that the spinal fluid is cloudy and full of white blood cells.  He explained to me that they can not do anything to treat that plastic catheter in her spine to rid it of bacteria.  It has to go.  So, we will be spending the next week turning the Baclofen dose down on her pump in order to prepare for surgery to remove the pump.  They will be putting her into withdrawal.  They will give her oral Baclofen and Valium to help to lessen the effects, but I don't think this is going to be fun.  She will be getting a central IV this afternoon in order to start IV antibiotics. 

I don't know how long she will have to stay after surgery, but it will be at least 10 days from now.  Please keep us in your prayers.  Vicki was in the room for this whole discussion.  So far she is relaxed, but she is on Valium.  I haven't seen any for the parents...

Flat Again

Mom's turn to be with Vicki.  Scott and I needed a break from the roles we have had the last few days and it doesn't look like we will be all in one place for a while yet.

The surgeon came in tonight and put Vicki back to flat for the next 24 hours.  It is better than standing on your head, but not going home like we thought would have happened by now.  There is no new drainage from her back incision.  That is good.  There is a little puss at each stitch mark that seems to be a reaction between the stitch and the "glue" they added yesterday.  The surgeon didn't seem to be concerned.

Vicki is not happy to be here.  It's a nice place to visit and even be here for a while but it is getting old, as it is for all of us.  Appreciate your ongoing prayers.

Happy Halloween!

The hospital staff does a good job of making things fun when a holiday rolls around.  They had "trick or treat" stations throughout the hospital. Vicki was left in charge of the 7 West candy.

Happy Halloween!

Up and Down and Upside Down

Today has been a day of up and down - literally.  We started the day with the goal of being up in the bed and then up in the chair.  After being up in the bed at 30 degrees, there was some drainage around the back incision.  So Vicki ended up like this:

You can see a smile on her face, but trust me, she's not always this happy about it.

In addition to being flat, Vicki has seen PT, a therapy dog, an infectious disease doctor, ATD (the chair people), Music Therapy and Rec Therapy.

PT said, that her hips may be "locked" at 65 degrees due to bone changes and not muscle issues.  She suggested we see the orthopedic doctor to get more information.

The therapy dog was a poodle and had been introduced to Hajik before.  They said "hi" again, then the poodle talked with Vicki for 3 minutes and left.

Infectious disease said that "one line" of a culture had grown something in her Cerebral Spinal Fluid (CSF) when it was last taken.  One belief is that it was a contaminate in the lab.  There are no other signs of infection so it is the leading theory.  We need to have another check of the CSF in the near future.

ATD came up and adjusted the back of Vicki's chair by 10 degrees.  It's more open now.  Think reclining slightly.

Music Therapy kept Vicki entertained long enough for me to talk with another professional.

Rec Therapy brought some costume options for Vicki for tomorrow.  Guess what she chose to be? a) A princess?  b) A fairy? c) A witch? or d) A doctor?  Final answer?  d) a doctor.

I'm certain she will try to tell everyone what to do tomorrow when she becomes a doctor.  She already does that, but doesn't wear the lab coat.

The day has been full, but as I said, has been up and down.  We can not go home until she stops leaking.  So I told her to "dry up."

Right now, we are waiting for the surgeon to come in and give us an opinion about the leakage.

Epilogue:  We saw the surgeon. She determined that the fluid was indeed CSF and leaking.  That's not a good thing.  She said at one point, "Let me think about this."  She was considering surgery, or novocaine  and some additional stitches.  When she left the room to think, I was wondering to myself, "Do they ever use glue in a situation like this?"  She came back in and said, I'm going to use "Dermabond" - a glue.  That felt like a good confirmation to me.

The "Upsidedown" side to all of this is as follows:

She has to be in "reverse trendelenburg" position until at least tomorrow.  We could be looking at 3 more days of being flat.  She also has to hold off on a feeding for now so we don't add pressure.  She will be getting a medicine to slow the reproduction of spinal fluid.  The idea is that by "turning off the faucet" of the spinal fluid, there will be less pressure and hopefully not make it worse.  The surgeon's last words to us were, "It's not a big deal now. Let's keep it from becoming one."

Movin on Down :(

In every hospital stay there is the 'setback' or 'hold up' or some other words that describe forward progress stopping and backward progress starting.  Today was that day.

It started well enough with one hour in her chair in the morning!  But the afternoon stint was only 45 minutes.  After that there was some very slight drainage from her back incision.  It doesn't seem like a big deal when it is less than a dimes worth, but when you consider it might be spinal fluid, then it could be a big deal.

She went from having the chance to be in her chair and to eat some things by mouth to being flat for the afternoon/evening and nothing by mouth.

It's disheartening, but it's not life-threatening.  So we wait and try again tomorrow.

Movin On Up!

Vicki has been cleared for take off!  No, she can't go home just yet, but she can have the head of her bed raised!  She started with 10 degrees and will move to 20 by this afternoon.  See how she is:

It's not a big change, but it keeps her happy and it's foreword, or should I say upward progress.

Back in the Saddle Again

I suppose you think Vicki is sitting up in her chair by the title.  Well not quite, she was watching a horse movie when I got back so the title seemed fitting.


When I arrived, Vicki was very calm and Sarah reported she had an OK night and a good day.  I suspect the calm is partially due to the pain meds she's on.  I've watched her come out of surgery before and appear as if some miracle of calm had overtaken her only to see a few days later that she was not quite as calm.

I can tell that her tone is significantly better and that is very, very good news.  The sad part is I don't know how long she's really been suffering.

We are anxiously awaiting 7pm.  If the back incision is dry at that time, then she can have her head elevated slightly.  We will progress with increased height as she tolerates it.  I guess you could call it, "movin on up."


At home this morning, I realized how truly blessed we are.  When we hit these "bumps in the road,"  we receive an a great amount of support.  Meals have been provided, visitors have stopped by, prayers have been said, and PCA's have stepped up to support us in ways that are outside of the job description. 

I've said this before, but it bears repeating - I believe that when one member of God's family goes into crisis and others respond, that is what God means when he talks about the fact that we are the 'body of Christ.'  We are being taken care of by others in the body of Christ during this time.  Later on, when we are better, we will have the chance to strengthen and support others.  

Scott

Sleep is good

Vicki slept all night!!  Never even had any pain medication.  She is so much more comfortable sleeping on her tummy.  So far she has only had Tylenol for pain this morning.  Things are looking great.

Scott is packing up the garage stuff at his parents' and plans on coming home this evening.

Sarah, our wonderful PCA, who came home from college to be at our house this weekend, is going to bring the rest of the kids this afternoon to see Vicki and then she has offered to stay here with Vicki overnight.  Scott and I will get to be in the same city, the same building and the same bed at the same time!!  That will be a treat.

Laura

Mom's Turn

So, it's my turn with Vicki. After juggling the other kids at home, I was ready for a change. Scott was too.

Vicki has ALWAYS slept on her stomach. Yesterday she came out of surgery saying she was tired, so we turned her onto her stomach to get some rest. The nurses were not sure that that would be OK since she has a back incision that was seeping a little and they thought the surgeon would want pressure on it by laying on her back or propped up on her side. They could not reach the surgeon and decided they needed to keep her off of her tummy for the night. I was sure that would set us up for a bad night. Vicki surprised me. I would not say that either of us slept "well" but she was restful. After weeks of tightness, pain and crying, it was so good to see her relaxed again. The dose of Baclofen she is getting is less than half of what the pump was set to give her before surgery but it is SO much more effective. The surgeon said it was probably not working right for quite some time.

Today she has continued to be quite relaxed. She is not sleeping. Her eyes are open, but she is quiet and calm most of the time. She keeps asking when we can go home and I am sure the next 3 days of having to stay in bed will get boring, so if you have the time and ability, I am sure Vicki would love a visit or phone call. Be prepared to wait for her responses as it takes her a little while to get the words out and they are quite quiet, but I will take that over yelling and forced.

Vicki is on the 7th floor of Regions Hospital in the adult unit for Gillette, room 7319. Her phone number is 651-726-2670.

Thank you for your prayers.  They are working!!
Laura

A Success

Vicki was amazingly calm during the time they came to get her, while she was in Pre-Op and up to that last moment of consciousness. The "secret" was finally revealed to her about 40 minutes before surgery. That in and of itself is a miracle and a success! Vicki usually sniffs out these things, but was none the wiser even with the man trying to place an IV said, "So you're headed to surgery..." when he couldn't get an IV started in her room! I quickly replied, "Not soon! You must be thinking of a different patient." Then he remembered his blunder and said "Oh, my mistake, I must be confused."

She was asking questions and simply lying on the gurney throughout the Pre-Op time even after the big "surgery" word was revealed. I think part of her was relieved to know she was going to get some help.

I was able to accompany Vicki back to the OR and watch her "drift off" to sleep under the anesthesia. Drift is not a good word for this kind of sleep. It is more 'forced on you' through the medications. Although she usually fights it, she did so much better this time. Partly because they gave her medicine in the IV and partly because of your prayers. She was able to hear her favorite verse as I whispered "God has said, 'Never will I leave you, Never will I forsake you.'"

When I got back to the Pre-Op room to get Laura and Hajik, he was visibly nervous. He worries when his girl isn't in sight. I had to tell him several times that she would be OK before it sunk in.


One of the things about having a child in the hospital that's difficult is the rest of life keeps on going. Work, kids practices, school and activities all continue as if oblivious to what's happening to the one child. After giving Laura a tour of all the places you can go in the hospital, I had to leave to meet two clients for evening meetings. Along the way, I called the PCA's at home to make sure the others were still OK. I met my clients, and then headed up to my brother-in-laws to exchange my van for his truck so I can head up to my parents this weekend to help them move. Yep, life keeps going.

Laura reported that the surgery went well and that Vicki has a new pump and catheter. Both are the latest and greatest so she should have fewer problems in the future. The surgeon remarked that it was a bit of work to get the catheter placed due to Vicki's spinal fusion and all of the extra bone in the way.

Vicki will now be flat for 3 days and then in the hospital for 2-4 more days after that - minimum.

We are truly grateful to be circled by your love, prayers, kind words, visits, food etc. God IS Good.

Scott

Keeping Secrets

Have you ever had to keep a secret? Have you ever had to keep a secret while making sure you don't lie? Have you ever had to keep a secret with 20-30 other people that come wandering into your life? Well, I've been practicing the art of 'secret keeping' from Vicki for some time now and I'm getting pretty good at it. You see, telling her about any big anticipated change is a BAD idea. Her anxiety overwhelms her and then we all pay for it with lots of wailing and whining.

The most current secret is her upcoming surgery - today, Thursday, at 2pm. (Whoops I just told you! That's OK, Vicki won't read this) The challenge is to not let the nurses, aides, doctors, etc alter her routine so much that she figures out something is up. We've asked all of the staff to alert those following them about our little secret and they've been very helpful so far. I've still made a bee-line for the door whenever a new professional pops in that seems like they don't know the secret so we can talk out of her hearing. As of 6am, it's still a secret to her.

Unfortunately, she didn't sleep as well, because we really did have to alter her routine. She had to be fed early in the morning because after 6am, she can't eat. So she was up a few times with nursing care. She's currently sitting up in bed yelling "I'm tired" instead of just relaxing and trying to rest.

Our anticipated stay is currently 5-7 days after surgery. It could be longer. It will not likely be shorter.

Soon and very soon, someone will have to come into the room that needs to do something that will 'spill the beans.' In the mean time, I am practicing what every NSA staff member should - keeping it under wraps, it's a secret!

Roller Coaster Ride

NOTE: if you read this and then call, if Vicki is on the line, please don't mention the surgery. Thx.


Yesterday (Tuesday) was a bit of a roller coaster ride. Vicki's pump dosing was altered with the hope that by doing so we could put off surgery for a period of time. Unfortunately that left us with a lot of unknowns. Would it work and make her tone better? Would it worsen a suspected micro-fracture in the catheter? If it did make it worse, would it be a slow change or a "blow out" sometime in the future?

At the very same time, the surgeon was indicating via phone that she wanted Vicki to have surgery soon. At one point we thought the surgery was going to be today (Wednesday).

Those two things (changes in the pump and surgeon wanting to change the pump) left us with a decision. Do we wait out the changes and see what they do for Vicki or do we push ahead with surgery? We were graciously given a lot of input by the first doctor so we could have as much time as possible to consider the options when we met with the surgeon. After phone calls to Laura, some time on my knees (literally) and some additional time thinking, I felt like surgery was a good option.

I spent the evening waiting for the surgeon, but we never saw her so I went to bed wondering. I told God that the decision has to be in His hands, because I wasn't being given the options. I gave up worrying about it. We slept "well." (The definition of "well" in the hospital is that you get about 2 hours at a time before something wakes you up.)

This morning (Wed) we got up and had no news. However, the surgeon was there very early and she said, "She's tight. Let's do it tomorrow (Thursday)." So the whole option thing wasn't really an option. I doubt that I would have argued with her because she was very confident it needed to be done right away.

I don't have a time yet, but the surgeon was doing her prep to find a time for surgery tomorrow (Thursday).

We are in a good place and I feel like we're on the right path.

Thanks for the prayers, calls, visits and support.



For those of you who are interested in a more detailed explanation of the pump aspect - Vicki's pump is an infusion pump. It has a catheter connected to it that extends from the pump and is anchored in her spine area so the medicine can be delivered right to the spinal fluid. The pump needs replacing every 3-5 years depending on battery life. The catheter only needs replacing if there is an issue.

Vicki's muscle tone has been getting slowly worse for some time. It has been getting dramatically worse in the last 3-4 weeks. So much worse that she can't even sit in her chair for very long! Not a good thing, since she practically lives in it.

The increased tone can be due to a number of things: infections, illness, or something wrong with the pump/catheter. After investigating practically everything, the catheter is believed to have a "micro-fracture." This allows the medicine to seep into her body wherever the crack is. Not a super big deal if the crack stays small and she gets the rest of the medicine, but as you've read, that's not the case. The pump will be replaced because it will have to be replaced within a year anyway. The catheter is likely to be replaced. If it is, the recovery will be longer.

Too Much Tone!

I haven't had to use this blog for some time to talk about one of the kids and a medical issue.

Well, I wanted to communicate to our many family and friends who support and love us so here's an update on Vicki. It's not very entertaining, but it'll give you the facts.

For about 3-4 weeks now, Vicki has displayed increasing agitation, increasing difficulty sitting in her chair or being in her stander, and increasing tone. She also has been sweating profusely and not sleeping well.

We never know exactly what's going on because she tends to 'cry wolf' a lot. After dealing with it for a while, we called and got an appointment to have her Baclofen pump looked at. For those that don't know, Vicki has a pump that delivers the medicine Baclofen into her spine. The medicine helps keep her high tone under control.

When they looked at the pump, everything appeared fine so we went home. Fortunately, we were given a prescription to give the medication orally if her symptoms didn't resolve. Her symptoms didn't resolve and we started giving the medicine orally. That made her more comfortable, but didn't resolve the underlying issue.

Last Friday, I brought her to the ER at Regions Hospital with the hopes of getting her admitted to Gillette. Gillette is housed in Regions, but they specialize in special needs kids and adults. After 10 hours in the ER, they basically decided they couldn't help us and sent us on our way (even after I got them to consult with a Gillette Dr.) Arrrgh.

On Saturday, I talked directly with the Gillette doctor and he agreed that we needed to be seen right away Monday morning in the clinic. Unfortunately, the clinic never called, so I called the nurse line and got them to agree to have Vicki seen in the hospital.

Now, it's Tuesday and we've been here 24 hours. Everyone agrees that the likely cause of Vicki's problems is a microfracture in the catheter that runs from her pump to her spine. This is causing her to lose some of her medicine and ultimately puts her into 'baclofen withdrawl.'

We have a very good doctor, that we also know from 'Joni Camp' who is working with Vicki. He is adjusting the schedule of when the medicine is being delivered. He is increasing the rate at which it goes in for shorter periods of time (a bolus). He describes it as like forcing water through a hose at a high rate to overcome a small crack. He's been successful in delaying the surgery for other patients. If that doesn't work, Vicki will have surgery soon. If it does work, she will still have surgery, but it can be postponed and scheduled rather than being "urgent."

That's it for now. Thanks for the prayers.

Scott

What a Weekend of Baseball!

Would you like to hear about my 'stressful' weekend? Of course you would, that's why you're reading this!

I put the word stressful in parenthesis on purpose. It was an intense weekend, but by comparison to serious issues facing so many people, this was nothing. Let me explain.

I was privileged to be an assistant coach of the Grasshoppers AA baseball team this summer. By doing this, I joined a coach we had last year (Jesse) who was amazing and I was able to coach my two youngest boys at the same time!

When Jesse and I left the draft, we felt pretty good about our team because we knew about 1/2 of our team from past experiences (and the fact that 3 of them were our boys). Of the remaining players, we had a vague idea of 1/2 of them from other coaches in the draft room based on their ratings. The last few players we didn't know at all.

When we got to our first full outdoor practice, we realized we were already in "mid-season form" compared to last year's team. We had a great group of kids who were willing to work a little and did well at listening (as well as 8-10 year old boys will listen).

When we finished our first game, it was hard not to wonder about how well this group would do. After all, we are in AA ball - an instructional league where we wanted ALL of the players to learn and improve. Nevertheless, I kept my 'wonderings' to myself.

As the season progressed we built a momentum that was hard to stop. We were midway through the season and still undefeated! We were all excited and the kids were slowly increasing the size of their melons. Not too bad, but enough pride that we had to do some talking from time to time about sportsmanship and being humble in victory.

Now please understand, that winning is not everything. Everyone on the planet loves a winner. And life is just a bit more fun when you are winning. But we really didn't want to emphasize an undefeated season. Our record and our great group of kids gave Jesse the opportunity to try some new things. He was able to allow ALL of the kids on our team a chance to play positions that they would not likely experience given different circumstances. The beauty of this is that ALL of the kids responded to new challenges. Maybe they had never pitched before or maybe they had never strapped on the catcher's gear. With a new challenge before them, they beamed and did quite well. After all, everyone needs a first time experience in order to learn how to do anything, and Jesse gave that to them.

The side result of experimenting is that we lost a game! My exclamation point means that this was a good thing! The kids were brought back to reality that they are human and that life brings losses. It was the perfect teaching moment to give them an understanding of what all of the other teams felt like when we had beaten them.

At that time of the regular season, I had no idea how 'important' that loss would be. It turned out in the end of the season tournament, we played that very team. Before the game, the other kids were pretty confident that they would beat us. Our kids played some good 'Grasshopper Baseball' and beat this team to put them in the losers bracket. But the story doesn't end there.

We met the same team 3 days after beating them in what could have been the championship. Since we were in the winners bracket, we only had to beat them once and we were the champs! It was an amazing game, played well by both teams, but we were not to be victorious that day as we lost 4-3 in the bottom of the last inning!

Once again, we had a chance to help the kids work through loss and disappointment. Yes, I was disappointed too. We were so close and yet couldn't get it done. The very next day, we played them again for a "winner take all" championship. Once again it was an exciting game (if you are a fan). If you are a coach or a player on either team, let's just say nerves were tight - exciting, scary, etc. But here's where one of the many good parts comes in...

...We had been teaching all year - be a good sport - play hard - be humble in victory and gracious in defeat. One of our kids who was still trying to grasp that lesson said to the entire team during the intense parts of the game "guys, we've had a great season, no matter what happens, we should be proud of what we've done." WOW, talk about a victory! This young man was vocalizing on his own what we really wanted to teach the kids. Did we want to win, yes! I mentioned before that it's fun to win, but if we didn't win, could we hold our heads high, be gracious and still have gotten positives out of the experience, a bigger YES!

I suppose you want to know what happened in the game. Well just a minute, because there's one more lesson. In the very last inning of the game with the championship on the line, the two kids that had to sit on the bench that inning approached me and asked 'Coach, will you sign this?' They were more focused on having their coaches and teammates sign a ball than really caring whether they won or lost. To myself I said, "Can't you see how close we are to the championship?" But I responded, "sure" and signed it while thinking, "They really have a better perspective on this than I do." I was proud of them.

And getting back to the game, we did manage to be victorious 5-3 in a full 6 inning game. We were able to celebrate being the champs! The other team was a great team and their kids played really well! Their coaches coached hard, and they were all gracious in defeat. It's one of those games where you really don't want anyone to lose.

Jesse gave me a gift that will be a prized possession for the rest of my life. He had all of the kids sign a ball and then placed it in a case. It sits on my desk where I will be reminded of the fun season we had, the amazing group of kids, yes the championship, but most importantly, the lessons I learned from the kids!

Where's the Fire (truck horns)?

Summer brings a lot of fun things - fishing, barbeques, swimming, fireworks, and parades. We had the chance to get to two parades this summer. I couldn't help but notice the contrast.

At the first parade, there was a lot of noise with the fire trucks blasting away, the bands playing loud songs and the various "floats" playing their music. The first parade came with boat loads of candy - tossed gently by the parade walkers. And finally some good old fashioned water spraying. A couple of the floats had the "heavy artillery" guns and shot at those who wanted to get wet. We had a great time!

The second parade was much, much more subdued. The fire trucks were silent! Silent! Have you EVER been to a parade where the firetrucks were silent? I hadn't until this last weekend. There were NO bands. Not a single one. There were some "floats" that had music, but they were pretty tame. And not a drop of water was sprayed.

Before the second parade, my son said, "but parades are boring!" That's not what he said after the first parade. Perhaps he was being prophetic, because the second parade was boring!

I can't help but think that we have become so OVER sensitive that we can't do anything fun because someone might be uncomfortable. Look, I have kids with disabilities and some things need accommodations, but quite frankly if the noise is too much, we either leave or don't go at all. I don't ask the rest of the world to quiet down just because one of my kids doesn't like noise. And water, oh my goodness! Are we all 'wicked witches' who will melt if we get wet? Seriously! If you don't want to get wet, MOVE!

If someone complains about the noise of the fire trucks, tell them to bring ear plugs. If someone complains about getting wet, tell them to bring an umbrella and let the rest of us celebrate!