Thirteen

13 2 Click for Video!

Thirteen……………

Today I become the dad of a teenager.  Anna Gabrielle MacConnell arrived on May 7, 2001.  She was a Daddy’s girl and quickly had me wrapped around her tiny fingers.  While most Dads are writing a letter to their teenage daughter about life on their birthday; I instead am learning a lesson about life as taught by a 13 year old with 2014 years of experience.  I look to the words expressed in “For Good” from Wicked; with some slight modifications:

I’m limited
Just look at me
I’m limited
And just look at you; you can do all I can’t do

Most dads will be worried about first dates, heartbrakes, futures, finances and growing up.  Anna, I know, can do all that I can’t do.  I could be worried about wielding a sword and slaying demons’ but with the full armor of God I know she is already one of the best.  I hope that one day I can do the things that she accomplished at such a young age: I hope that I can see people as well as she could – despite being blind.  Sometimes being blind is the only way to see the truth.

I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led To those who help us most to grow
If we let them And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you…

You influenced me to be a little bit of a better person (I hope).  I’ve been able to travel and provide medical care to individuals who otherwise would be without.  You made me learn much more about pediatric cardiology, developmental pediatrics and critical care management than I ever wanted too.  I have been able to apply a minimal amount of that knowledge to comfort the Mom of a little guy with Down syndrome in Ecuador: down on the floor demonstrating some exercises to work on and being able to help arrange for follow-up care in the Capital City of Quito.  Hopefully we made a difference for him.

Who can say if I’ve been changed for the better?
But because I knew you
I have been changed for good

It will be That we will never meet again In this lifetime
So let me say before we part So much of me Is made of what I learned from you
You’ll be with me Like a handprint on my heart
And now whatever way our stories end I know you have re-written mine
By being my Daughter…

Who can say if I’ve been changed for the better?
But because I knew you, Because I knew you
I have been changed for good

 

The foundation we started, in part to honor your memory continues to try to “Do Something Nice, for Someone Else, Everyday.  We are donating Parent Packs to Cincinnati Children’s (with goals of expanding to Riley’s, Nationwide and Dayton) – helping parent’s experiencing an unplanned admission.  We are planning on moving forward with our goal of the “Comprehensive life enhancement center” (you already know we will come up with a better name)- providing therapies for individuals and families  as well as the volunteers who serve.  We plan on: aquatic, animal assisted, art, athletic, music, communication, kinesio, mental health, hippo, occupational, physical, speech language, engineering, medical, nursing, vocational and life skill therapies.  As you are turning 13 earthly years we would be in need of transition services which are lacking in the system.  We have some big plans and hope to help all of us be the best that we can be (Like I know you are still trying to get me to be the best that I can be!)

 

I freely admit that we miss you terribly (as selfish as that sounds) but are comforted by the fact that we will be together again.  Until then; I know that I have been changed for good and hopefully for Good by being blessed with you as my daughter!  Happy 13, Slay some demons for me Big Pie!  Love You, Dad

The Second Annual Angels for Anna Birthday Bash Dash!

Time for an update on the plans for the second annual Angel’s for Anna Birthday Bash Dash

This year’s theme is……………..
Superheros

What’s Your Superpower?!

We, of course, would like everyone to attend in costume (and we recognize that some Superheros remain anonymous – most likely out of fear – but overcoming a fear can be your superpower).

We invite all participants to determine what their superpowers may be. Wear something to show off your superpower. Or, wear something to show off what superpower you would like to have.

Most of us likely think that we don’t have a superpower. All of us however, have the ability to have a superpower.

Anna had multiple superpowers: She could talk without making any sound (She communicated primarily by American Sign Language), She could make almost anyone smile, She could read with her fingers (I know most of you have tried this – While you are going through the drive thru ATM, while wondering “Why are people who read by Braille driving to begin with” and you realized that reading Braille is indeed a superpower!) and She, despite being blind, could see much more clearly than anyone else I have known (With her visual deficits, Anna was not biased based on looks, color of your skin, brand of clothing, hairstyle, etc – for her, things were simple – either a nice person or not!).

My Superpowers; not nearly as cool. I can take a ferrous compound and transform it into hemoglobin which can save the lives of others. We all do this, I just tried to make it sound like a superpower.

If you are a Mom or Dad – you have superpowers. If you are a student – you have superpowers. If you try to “Do Something Nice, for Someone Else, Every Day; you have superpowers.

Join us on May 17th to let the world know – What’s Your Superpower?!

 

We will hopefully have this years logo available soon.  We are contacting businesses for sponsorship opportunities – If you know anyone who would like to be a sponsor – Please let us know.  Any connections for donations?  Please let us know!

Additionally we hope to have some initial sketches of the proposed Angels for Anna facility in the next several weeks (and at the Birthday Bash Dash).  We are planning on this facility being the only comprehensive pediatric rehabilitation facility in the area. The planned facility will integrate aquatic, physical, speech, occupational, equestrian, animal, and life therapies under several roofs.  An engineering team will design and build items for life enhancement with input from patients, families, therapists and health providers.  We plan on a gym for parents to get in a workout while their child is undergoing therapy.  Parents will have opportunities to participate in therapies so they may continue to assist their kids when they are away from the therapy gym.  Open gym and pool time will be available as benefits for therapies are cut short as insurance companies seek to optimize their profits.  Comfy gathering rooms will allow for meeting areas for various support groups.  We envision a small cafe where individuals can gain “real life work experience” and patrons can get something to eat.  Produce grown in the garden/farm area will be non-enhanced and pending organic certification (this process takes awhile -hence-pending certification) and will be used in the cafe.  An accessible path will cruise through a memorial garden, celebrating the lives of those who have gone before us.  Spots for quiet reflection(or some Vitamin D synthesis) will be available for an often much needed mental break.  Opportunities for volunteers will abound with something for everyone.  A gift shop will feature items made by artisan participants at the facility

2014…………

Well, as usual, I am a little behind schedule on resolutions.  Last years resolutions went fairly well and I’ll ad more info later.  Angels for Anna had a good year and partnered with Cincinnati Children’s Home Care for their department service project.  Their generous donations will supply many “Parent Packs”.  We are VERY HAPPY to announce that Angel’s for Anna has been selected as the recipient of Harman Elementary School’s Community Service Project!  These students and their families will also be supplying items for “Parent Packs” and “Doing Something Nice, for Someone Else.  The packs are bags (which are sewn by Angels for Anna Volunteers) which provide the basics needed for an  unplanned hospital admission; for an adult.  As we had several unplanned admissions, we saw a need and opportunity  for help.  When our kids are admitted to the hospital, generally, their needs are very well met.  As “grown ups” we aren’t quite as well covered.  Sure you can sleep in your  work clothes you had on as you were notified that your child was headed to the emergency room and you rushed to meet them there.  No time to swing by the house to pick up the “go bag” as the ER staff asks if you would rather ride in the ambulance or the helicopter as you are being sent to the tertiary referral center.  You can use the hand soap or small bottle of baby shampoo to get “cleaned up”.  Your finger with a bit of toothpaste supplied to your child can “work” as a toothbrush.  And then, you can wear the same clothes you have had on for the past 24 hours.  A “Parent Pack” provides a blanket, shirt, PJ pants, fuzzy socks, shampoo, conditioner, bodywash/soap, deodorant, toothbrush, toothpaste, and lotion.  Hopefully this allows for a little better night and day.  All of us recognize the need for a shower.  As a parent of a child in the hospital it goes a step further.  A shower is a brief escape.  It allows you to recenter yourself and prep for the day.  I typically would shower between 4:30 and 5:00am.  Rounds could start as early as 5:30 with the residents, then senior residents, then fellows, then attendings.  A s a parent you typically want to be awake and ready to go for these activities.  In our case, as the hospital staff didn’t know a lot of ASL (American Sign Language – Anna’s method of expressive communication [She was able to hear and understand English with her cochlear implant]) we needed to be able to assist with communication and Anna would typically be sleeping during these early morning hours; the perfect time for showering.  The shower is possibly the most important part of the day in the hospital.  As a parent you want to be strong for your child; you don’t want them to see how nervous, concerned, etc. you are.  You want them to see your Love and not your fear of what the coming day holds.  You want to comfort them while you are are trying to “absorb” the stress of their condition in an attempt to make them feel better.  The shower is your chance to let that out.  The shower is the chance to cry and have it wash away (kids for the most part hate to see their parents cry); the chance to feel clean after having been in a small room for the past 24 hours; the chance to start fresh on the new battles you will be facing that day.

The 2014 resolutions will be posted shortly.  I, need to get myself ready as I am heading to Ecuador this morning an a medical mission trip.  Last year our team provided care to over 3500 individuals and we hope for an even larger opportunity to serve this year.

Angels for Anna’s second Annual Birthday Bash Dash – A Walk and Roll (and run) Adventure is tentatively  scheduled for May 17th with the run starting at 5.  A Party to follow.  More details to follow but……….it will be a “Super” time  to think of “What’s Your Superpower”!

A year…………..

A big Thank You!  To all of you who have helped us through this first year.

There is a saying that “time heals all wounds”.  Having worked in a surgical setting for most of the past fifteen years I can honestly say that; the saying is a bunch of junk.  Time does not heal any wound.  Time helps in the formation of scar tissue that can hold the edges together, but the tissue will never be the same.  This first year has been a challenge.  We have had some good friends who have helped us along the way.  The death of a child affects those around the family in different ways.  Some Friends that we thought would be there forever have slipped out of sight while others have poured forth with goodness and support.  We received several cards from those around us this past week.  A “Thinking of You” balloon was attached to Anna’s tree in our front yard on Sunday.  An “I Love You” balloon was at her grave.  E-mails and texts provided support.  It is nice to know that she isn’t forgotten and is still remembered by those around us – which makes us feel good and validates our feelings about Anna.  Don’t be afraid to mention her name to us – we won’t break down at the mention and in all likelihood will be happy that you thought of her.

 

Angels for Anna has also made it through the first year.  It is a 501(C)3 charity; meaning contributions are tax deductible.  We are incorporated in Ohio and managed to raise over $3000 for charities including: 4 Paws for Ability, Starshine Children’s Hospice and A Kid Again.  We also planted 500+ flower bulbs in the Centerville/Washington Township area to help brighten up the spring.  People helping out have dropped off angels from Germany to Taiwan.  On the anniversary of Anna’s death we placed ceramic wind chimes and Angels in the Dayton/Cincinnati area.  All of the “gifts” were made by Angels for Anna volunteers at one of several “painting parties” where we painted the pieces in anticipation of them being fired.

Angels for Anna has big dreams for the future.  At our painting gatherings we have talked about a facility for life enhancement for all individuals: A facility for hydro and aquatic therapy at a reasonable cost, where all individuals could participate in hippo/equestrian therapy, where therapy could continue at reasonable cost once insurance benefits run out, where kids could have the opportunity for life skills training, where parents and kids could work with our engineering team and say; “I need something that can do this” and together we can build it .  We envision a “farm” where we can grow non enhanced products and drug free livestock.  Where someone can say “I want to help out but have no idea how” and we can find a way to help others.  From packing “Palliative Parent Packs” (meal ticket, blanket, toiletries, t-shirt, pajama pants and fuzzy socks) available for those emergency admits, painting ceramic pieces and making blankets, to driving a tractor, physical labor and horse handling – If you want to help we will find something for you to do.  If we are going to dream, we might as well dream big.

 

The death of a child is the greatest stress one can go through.  The original stress scale did not include it as they could not imagine how to rate it.  To steal from The Beatles: “We get by with a little help from our friends”.  It isn’t easy – in fact it (insert expletive if you choose) (and again here plural).  We still like to laugh, quote old movies, eat too much, and sing bad eighties songs.  Thank you to all of our friends – both old and new who have stuck by us.   Thank you to all of the Angels for Anna volunteers who want to “do something nice, for someone else, every day” and honor an amazing little girl along the way.

 

Twelve

Twelve – Written on May 7, 2013

Today Anna would have turned 12. Sometimes it’s hard to believe how many lives were touched from the first day that we found out She had a major heart defect to the day She got to celebrate her new birth.

As I look back on things; a number of thoughts enter my mind:

I hope that one day, I can see as well as my daughter, who happened to be blind. Generally, being blind means that you cannot see. Anna however could see things much more clearly that just about any of us. Anna knew no discrimination to others. Without much sight and with no hearing (without her cochlear implant on) she did not judge based on color of skin, sound of voice, brand of clothes, or neighborhood in which you lived but only in ones love for an individual.

I hope that my faith can be as strong as Anna’s. I have no idea exactly how, but Anna knew weeks before her death that she would soon die. After She was turned down for a heart transplant I talked to her about what that meant and what the future would hold. I can’t recall if She actually had her implant on or if the batteries were still working. Really I was trying to reassure myself – Because at 46 (with a limited medical background) I didn’t and don’t get it so how could an 11 year old get it”? I truly believe that She was close enough to God to “get it”. As the final weeks were going on, Anna would reassure me, signing to me that She was “finished”(the word She elected to use) (and not while we were working on a lesson – often while she was snuggled in and resting comfortable with normal respiratory rate and effort) and then simply returning to snuggle with one of those great Anna hugs. She was comfortable and content, knowing what her next step would be and needed to reassure me with a hug.

I hope that I can bring out the best in people. While Anna was hospitalized we had many offers from people to help and we had many people who just did things to help. While we appreciated the offers, we really appreciated the doers. The last thing most of us, who are in a stressful situation, want to do is to ask a friend to perform a task. Thank you to the people who mowed our lawn without asking, who changed their schedule to watch Danielle during emergencies, who just showed up with food, who brought snacks for the Nurses as well as us, who left the safety of the hospital to pick up food and Diet Coke (in a not so nice area of town), who told us to just go – We’ve got your house and Lakin taken care of, who sent balloons and chocolate, who prayed for us as well as Anna. Thank you to the new friends that we have made during stressful times and to the old ones who have and continue to stick by us

Thank you to the individuals who have shared their story of how a little girl who couldn’t see or hear helped them to see and understand. If you feel like adding on, feel free to post and Do Something Nice, for Someone Else, Everyday.

Angels for Anna is pleased to announce that “Anna’s Birthday Bash Dash – A Walk and Roll Adventure” will be held on May 18, 2013 @6:15pm at the Washington Township Recreation Center (This event is not sponsored by Washington Township -have to include that line to keep the Township happy!).  This is an event for Athletes of ALL Abilities.  Participants who might need a little extra help can have a Buddy assigned to help them out (In the same manner that Anna was able to play on her soccer team).  One of our goals is to have the last athlete finish to the same (or greater) applause as the first.  The race does not always go to the fastest but to the one who keeps on going!  Following the Dash portion, the Bash will begin.  This will be a celebration of all athletes participating in the event.  Participants will receive a slice of pizza and a cupcake (Thank you KD Cakes!).  For those of you who might want something a little more substantial there will be additional food items for purchase from vendors (We are currently are working with local restaurants and Food Trucks to be available – some of the menus look fantastic). The main gym of the recreation center is where the Bash will occur.  There will be a photo booth for all participants to have some pictures taken (A nice time to get some funny family shots or to get the Christmas card picture early!) – – all individuals in the picture will get a copy and one will be placed in a book so you can autograph one for us!  There will be a Massage Therapist on hand to provide chair massages.  For those of you who have not yet made a “Helping Hand” we will have a table where you can “Give us a Hand” (I never promised there wound be good puns) for Angels for Anna.  Awards will be provided for the standard age group winners and all participants who have identified themselves as a special needs athlete will receive a medal.  The awards are all hand made (By Angels for Anna volunteers) ceramic medals (So they are a bit different than the standard medal awarded at most races).  Additional awards will be given out at the bash and may include best costume (Anna liked anything that lights up, glows or has balloons), best dance moves, etc..  A DJ will be providing the music and lights (avoiding strobes due to a potential increase in seizures in some individuals) and other volunteers will be face painting and providing entertainment.  Entry forms are available at keysports.net and their online sign up should be live in a day or so.  Will add more info as it becomes available!

A New Year….A New Beginning

Today marks the last day of 2012.  A year that for us was a rather difficult one.  Even so, in the difficulty of the year – we were blessed.  We were able to hold Anna as she was transferred for her daddy’s arms to her Fathers.  We were able to keep her comfortable as we told her we Love her and we said our earthly goodbyes.  As I type this, there is a gentle snow fall outside the window.  The pure white of the snow makes everything new again.  Our Christmas lights reflected by the ice crystals, shining in a way that would make Anna happy.  This is a necessary season as the freezing/thaw cycle is required to bring about new growth in the spring (when approximately 1000 bulbs, planted by Angels for Anna will be appearing).  Throughout this season (winter, Christmas, New Years) we are given the opportunity for a re-do.  We are forgiven and can start over.  In that spirit I am going to list some resolutions for the New Year.  I also figure if I list them in a public place – I had better do my best to keep them!  Some of them are for Angels for Anna and some are for me.  I hope those reading this can work with us to make the Angels for Anna resolutions true.

2013 Resoultions

  1.  Do Something Nice, for Someone Else, Every Day
  2. Prepare and distribute at least 3 meals for the Ronald McDonald House – Dayton (Cincinnati has coverage almost every night of the year, due to their larger size.  Dayton is often in need)
  3. Put on the best fun run possible with the “Anna’s Birthday Bash Dash” May 18, 2012 with party to follow.
  4. Have Angels for Anna grow to 1000 “Likes” on Facebook
  5. Participate in a medical mission trip (already scheduled but I’ve wanted to do one for a long time  so I’m listing in anyway!)
  6. Throw more parties.  Anna loved parties and our house is set up nicely for them.  It also gives me the opportunity to put people to work making Angels for Angels for Anna
  7. Organize my 1/3 of the closet (and maybe stretch it out to 1/2 of the closet)
  8. Bike at least 1000 miles
  9. Drink less soda and more tea (and wine – see also #6)
  10. I need to get one in regards to fitness and health (besides more wine) so decrease pants size by 4 inches and follow up with physicians, dentists, etc as I know I should)
  11. When I know someone is in need – just help.  I resolve that instead of telling someone -” just let me know what you need/what I can do to help”. I will just help (bring dinner, mow a lawn, shovel a driveway or sidewalk, do whatever).
  12. Donate blood.  I am a relatively healthy individual and resolve to donate at least 1/2 gallon of blood this year (that is only 4 donations).

We currently have supplies to make approximately 1100 Angels so we will be in need of having an Angel party in the relatively near future.  We also are beginning the large phase of locking in the plans for the Angels for Anna Birthday Bash Dash.  The run is planned for the evening of May 18th with a flat and fast 5k course. It will head south on McKewen, east on Peachcreek, through the plat, south on Garnet, back to Peachcreek and McKewen.  A party is planned for after the race with live music and a DJ.  Prizes will be awarded for costumes and enthusiastic participation at the dance and party afterwards.

Out with the old and in with the new.  Here is to a great 2013.  Thank You for your support throughout this year

 

December 7, 2012

Today is a bittersweet day…….We will be heading out to look at getting Anna’s headstone for her grave.  It is somewhat cold and damp here so the weather is appropriate for this activity.  Today, December 7, 2012 we mark Pearl Harbor Day and honor those who willingly gave up their lives so that we may enjoy our freedoms.  It was an act by Henry Wadsworth Longfellow’s oldest son, Charles, who stated when he joined the Union army during the Civil War “I feel it first to do my duty to do what I can for my country and I would willingly lay down my life for it, if it would be of any good” that led in part to the writing of “Christmas Bells”.  This was turned into a Christmas Carol – I Heard the Bells on Christmas Day – (The Casting Crowns version is quite nice with the Children’s choir) which ends with the bells bringing renewed hope for peace on earth. The Lyrics:  And in despair, I bowed my head; “There is no peace on earth”, I said; “For hate is strong, and mocks the song of Peace on earth, good-will to men!”  Then pealed the bells more loud and deep: “God is not dead, nor doth He sleep; The wrong shall fail, theRight Prevail, with peace on earth, good-will to men.” remind me that “The world revolves from night to day”.  We will eventually all be Home; a marker on a grave is just that – merely a marker.  Anna Pie is enjoying the great weather and all the glories that Heaven has to offer as it is prepared for the celebration of the greatest of all births.

A year ago……..

A year ago we were in the hospital with Anna.  She had an acute exacerbation of her heart failure and we originally were told that she wouldn’t make it through the night.  Obviously, she proved them wrong and with some good medical care and lots of prayers we celebrated another Thanksgiving, Christmas, New Years, Groundhog Day, Easter, Memorial Day, and Birthday.  We learned to celebrate any day that ended with a “Y”.  None of us know how long we will be on this earth before transitioning to our forever Home.  Take time to celebrate each day with those that you know and love!

Halloween in the hospital (specifically in the Pediatric Cardiac Intensive Care Unit) doesn’t necessarily hold all of the charm that it does in the community.  We aimed to change that last year. We originally had planned on going as characters from “Despicable Me”.  Anna would be Agnes, Cadi would be the Unicorn (“It’s so fluffy!”) and I would be Gru.  Kristin came to the rescue and Anna became the “Queen of Hearts” – What else when you are in the Cardiac Intensive care Unit-and Cadi was the Royal Unicorn.  My Sister and Niece flew in from Phoenix and another sister brought candy for the nursing and respiratory staff.  Make the best of any given situation and do something nice, for someone else, every day!

Anna as the Queen of Hearts.

Angels for Anna Fundraiser @ BoJangles

Join us this Saturday (October 20, 2012) at BoJangles (1925 South Alex Road West Carrollton, 45449) for a fundraiser for Angels for Anna.

Music starts at 9:30pm. They will be performing a Beatles song in honor of Anna during their first set.

Proceeds to benefit 4 Paws for Ability and Starshine Children’s Hospice through Angels for Anna! – Please invite your friends, and repost to your facebook page!