Friday, February 19, 2010

The Game and Words and New Family Pics

This is the Newaygo Boys Varsity Basketball Team with the Heart kids and families that were at the game on Tuesday.  
Front Row L-R: Justin Parker(Jordan Snyder), Alex Roberts(Joshua Black & Andrew Huegel), Zenn Timmer(Brycen Halas), Brittney Butcher(Heart Transplant), Tom Brown(Brittney Butcher, Brycen Halas(HLHS), Danny Mayle(Heart Dad), Terri Russo(Heart Mom), Steven Lisee(Sofi LaPres), Jerry Gonzalez(Braeden Huested)
Middle Row: Kandi Butcher(Heart Grandma), Eric VanDam(Lindsay Groen), Zach Franks(Tommy Schomaker), Kyle Madrid(Derrick Carter), Brandon "Beano" Schultz(Ethan Bilpo), Aaron Schultz(Logan Jacks)
Back Row: Brett Butcher(Heart Dad), Head Coach Brian Prickett, Sean O'Neil(Ethin Twigg), Myself, Assistant Coach Brett Prickett(Pulmonary Stenosis)

If ever for a second you think that high school boys do not care look no further than these amazing young men.  They played very hard on Tuesday against Orchard View.  Sadly they lost the game, but what they played for will always make them winners in my book.  These 12 young men showed more heart on Tuesday than I have ever seen in young athletes.  I am so proud of them.  Tom Brown got a nice surprise along with me when Brittney Butcher showed up at the game!!  Yes there I was and all of a sudden Brittney was there!  They live about 2 hours from me so they surprised us all when they showed up at the game. 
Tom Brown with his Heart Warrior Brittney Butcher and her dad Brett and her grandma Kandi

Brittney was not the only heart kid at the game.  Brycen Halas lives here in Newaygo and he was at the game too.  Tom Brown is Brycen's cousin, but I had no idea so Zenn Timmer played in honor of Brycen here they are after the game.

There is Brycen, Danny, Zenn, Terri and Brycen's Big Bro Christopher

Here is Tom with Brycen though!!  To Cute
Of course I was there to represent Ethin

This is me with Sean who played in memory of Ethin.  Thank you Sean!!
There were a couple of high profile attendees at the game on Tuesday.  In MI one of our Senate seats is open for election.  Well we have two senate hopefuls and they were both at the game on Tuesday

On the 2nd bleacher that is Larry Lethorn our superintendent sitting with him is MI Representative and Senate Hopeful Goeff Hansen

And here I am with State Rep and Senate Hopeful Mary Valentine.  She was also in at the Heart Ball in January.  

My sister Krista was there with my niece Taylor
Many people were there for the game and to show support but there are not pics of those people.  Carrie Crosley from EHSB board, Makiiya who was in charge of our shirts she did great!, Mandy Ethin's God Mother, Heather Ethin's Godsister, The Heideman's, Tammi took all the photos for us.  I feel truly humbled that so many care.  And from what I was told by the coach this was just the first year.  Hopefully by Friday I will have a count of exactly what was raised!

In other news Ethin's Heart Still Beats(EHSB) Board is being put together on Friday.  I am excited and can not wait to tell you who all these amazing people are that are volunteering their time to make a difference.  There is so much work that goes into putting this non-profit organization together.

Cuddles from the Heart MI is hoping to have enough blankets to donate to DeVos Children's hospital in April.  In order for this to happen we need to collect 500 blanket by April 5.  If you have not visited the Cuddles from the Heart site in a while please do so as there are many new states participating.  So what I am needing now is New store bought or homemade blankets from newborn to teenagers to hand out to the kids that are inpatient in the hospital.  DeVos recently opened their Congenital Heart Center.  This hospital took care of Ethin a couple times before we went back to Mott.  I can tell you that right now we have like 50 blankets.  So let's do this we have a goal of 500 by April 5, 2010 to blanket DeVos.  I know we can do this!  You can send your blankets to me at the following address
Jessica Twigg 
563 Sunset Dr.
Newaygo, MI 49337

I am sorry that I have not written, but there has been a lot on my mind and a lot going on in my life.  Trying to keep my head clear and allow myself to fall into prayer often has lately been what I do a lot of.  In that there was not much time for blogging.  It has been so long since I blogged I really can not even remember what I blogged about before the meet you at the sunset blog.  So I guess I will share some things and how I am doing and how the J Triplets are.
I personally myself am struggling with whether or not to keep doing all that I have been doing or to just be done with it.  After much prayer and thought and guidance from my heart family I will keep blogging and I will keep doing what I have been doing.  Last week I was very hurt by someone's sharp tongue.  Words truly are a sword that can cut through anything and leave you bleeding.  However when we allow anger and lies to control what we have to say I guess that is to be expected. 
So I was told that my blog is either poor me or look at me and I want to clarify this as I have never intended for it to appear this way.  I never want people to think poor me when you read my blog.  The best thing I thought and still feel I can do is be honest in the fact that I lost my son and it is anything but easy to get through.  I feel that by being honest in it I have been able to help other people who have experienced loss.  Also by being honest with it I have been able to allow myself to feel what ever I needed to feel to get through it.  I have never claimed to be the authority on grief as I was told this week, but I am the authority on my grief.  I am the authority of how I feel and what I do.  Just because I do it this way does not mean the next person will or anyone else will, but this is how I have done it and how I feel.  I also know that I am not the first person to go through the loss of a child, but I did lose my child and I am allowed to grieve for him for however long that is and it may be a lifetime.
As for the look at me that I was told it appears on my blog that has never been the case.  I give most credit to my son who is the driving force and inspiration for the things that I do.  He also happens to be the drive behind most of the members on the board for the non-profit organization that is named after him.  As for anyone else who has donated anything to the ball, cuddles from the heart or the game or anything else we have done I encourage you as always to go to the websites that are set up for those activities as that is where all the donors unless they asked to remain anonymous are listed.  I even advertised on the heart ball page for the local business' that donated things.  Also on the cuddles from the heart page when we did our donation of blankets all the people that donated were listed.  I do feel that credit should be given.  I am not all about taking credit for other people's generosity.  Everything that I have done has only been made possible by the drive that EHSB has and by many people who have been so great about supporting awareness and raising money for research of CHD's.
Also I was told that I needed to stop worrying about raising all this awareness for CHD's in Newaygo and focus on going back to work.  All I have to say is as a heart mom Yes for the record I am still a heart mom.  Yes it is very important to raise as much awareness as possible.  And anyone that lives in this country knows that it is impossible to find a job our economy is awful.  But I have looked and with no luck I am still jobless.
Needless to say after much thought I clearly am going to keep writing and keep doing what I have been doing.
So on with the weeks happenings......Well I went last Friday to Calvin College and visited the campus.  I LOVED it and can not wait to get everything filled out so that I can get my acceptance letter in the mail and begin my studies there.  God's plans always work out better than my own.  I loved every aspect of being there.  Chapel was my favorite part during visit.  They have chapel there every day and the campus literally shuts down for it.  So I am filling everything out to go and my pastor already wrote his recommendation for me.  He also went with me for my campus visit.  
Worship planning at church is going well.  I really do enjoy it and find that it is very satisfying.  To know that a service I planned was done and God guided the whole thing.  I have found that through doing the worship planning I am continuing to grow in God.  There is so much prayer that goes into planning a service.  I really do love that I am able to start seeing God's grace in all of this.
I do still miss Ethin every day.  There is not a day that goes by that I do not think about Ethin and wonder what it would be like if he were still here.  I wonder if he would be walking and talking.  I wonder if he would be able to wear his Levi's yet or if he would still be in "baby" clothes.  Really I guess I just wonder some really deep things in my mind.  Like when I get to Heaven will Ethin still be a baby that I will get to care of and teach.  Or will Ethin be a little 5 year old boy who when I get there will take my hand and say, "Come on Mommy I have been waiting for you and I want to show you the beautiful gardens here"  Or will he be a grown man that I do not even recognize that is defined.  I wonder what he will be like.  Much like I always wonder what it would be like if he was here.  If he was here I know that my life would be much different, but the reality is Ethin is not here and it will be a long time before I ever see him again.
Missing Ethin does not consume me completely like it did at first, but it does still take a part of me everyday.  I do still feel like there is a huge part of my life missing.  I do still hide my grief by staying very busy.  I am still very afraid that if I slow down I will fall apart and the reality will settle in way to fast.
My guilt has not subsided, but I am working on that.  I think that mostly my guilt comes in as being a mother.  When I think of my job as a mother I think of my responsibilities that I have to my children as a mother.  It is my job to protect my children at all costs.  I as their mother am supposed to make sure that they are OK at all times.  I am to make decisions for them to protect them.  I feel as though I failed Ethin in that.  I could not fix what was wrong with him and as his mother that was my job and I failed.  I not only failed but I failed miserably.  I so many times have replayed my choices and the decisions I made with him.  I put him through so much for my own selfish reasons of not wanting to lose him.  He was in so much pain and I failed to see that.  Then at times I feel like maybe the outcome was my punishment for the times where I prayed and asked God to stop the pain.  Perhaps I asked for this without asking for it directly at first.  But then I recall after his Hemi-Fontan when he was really sick and they had mentioned ECMO I said no way he will never be on life support.  Then I left him that weekend that he died.  Maybe had I never of left this would not be the way things are.  I will always question if I did something wrong if I missed something or if I was wrong from the start to demand him to fight so hard.  As his mother I will always carry a sense of guilt that I did not look out for his best interest instead I just signed all the papers placed before me and continued to allow him to be poked, prodded, and cut into.  Heck I was willing to allow them to do anything they deemed necessary to keep him alive.  Did I always have his best interest at heart or did I really just do what I needed to do for myself to feel like I was a good mom?  A question I fight with every day.  All in all I guess looking back yes I have regrets at times and other times I think I would never have changed a single thing.  So guilt is still there mostly at night when I am alone and can cry all by myself.
In other news I moved.  With not being able to find a job keeping my own place was just not feasibly possible anymore.  My friend Leslie had a spare room and needed someone to help watch her youngest son after school and at times through the weekend so she could work.  Needless to say she opened her home to me and I accepted and am now living two doors down from my old house.  Funny enough I am seriously thinking that it is the easiest move I have ever made.  For sure it is the shortest in distance!  LOL  Leslie and I get along well which I think has been key to the success of us living together now for the last month and a half.  She truly has been great and I do enjoy living here and knowing that I have a safe place to stay.  And we both know that it is only until fall when I move to another town to attend college.
Anyhow......The J Triplets are still doing good and we had our family pics taken a few weeks ago.  They turned out nicely.  Here they are and then I will talk about the kiddos and what has been going on with them.

The kids and I Jessa(8), Jonathin(7), and Jayde(6) I thought having Ethin's monkey in our pictures would be a nice way to feel like he was included.
This is the picture that I will be putting on my wall

Jessa is still my true light when I need true insight that only a child can give.  She has had many moments the last few months and few weeks that just amaze me with how smart she is.  She crawled up on my lap crying a few weeks back and told me how she misses Ethin.  A few tears I let out with her as it broke my heart that I can not fix the whole in her heart and I can not take away her pain of missing her baby brother.  Then she looked up at me and said, "Mommy sometimes I just wish I had one more minute with him."  I said, "Me too."  She then said this, "But you know mom then I would keep wishing for one minute and one more minute after that."  She is so right that even one more minute would never be enough.  Then two weeks ago she came to me and asked me about me going back to college.  I told her that I felt it is what God is telling me to do.  She cracked me up when she looked at me after I said that and she said, "If God wants you to do it then you should."  She once again hit a note that many miss; When God calls you go.  She just never ceases to amaze me.  She is doing well in school and is excited that soccer will be starting in the spring.  I will be coaching her team and she is also aware of that.  Sometimes she likes it and other times she thinks I am a tough coach.  She's right I am tough I expect my team to give it their all and be the best that they can be as long as we are all having fun while we do it!
Jonathin is still for sure my child.  He is so me in every way besides he is a boy and I am not.  School for him has been a struggle.  He is so all over the place and he tries so hard, but concentrating on anything besides video games is just not his thing.  He has also been having a few violent outbursts.  Matter of fact when I stopped in his school last week to make sure they had all the info about the basketball game his principle stopped and let me know he had gotten suspended from school for kicking, hitting, and spitting.  Yes I find his actions extreme and him and I had a long talk, however really they suspended my first grader??  Is this normal?  Jonathin is so full of love and he is really a great kid, but there are some underlying problems and I for the life of me can not get his father to agree to put the boy in counseling.  I am very worried about him.  I love him and I know things are anything but normal for him, but I just want him to be happy and not get suspended from school.  Hopefully when baseball starts in the spring Jonathin will do a little better as he will have a way to expel his energy.
Jayde oh my little Tater Tot.  She is such  whipper snapper!!  She is also doing well in school besides her visit to the office with her buddy.  I will not give him a name, but these two together never cease to not give me a good laugh.  Jayde makes everyone laugh.  The other weekend after our pictures she asked if she could ride with Tammi back to their house with Jessa and Dakota.  I said that was fine.  When I got to the Heideman's Tammi said Jayde made her and Dakota laugh when she said to Dakota, "You know Kota one day we will be related."  Tammi asked her what she meant and she said, "When I marry Gage."  To darn funny and way cute!  Jayde is so innocent and just full of so much.  She will also be playing soccer in the spring and for the first time I will be coaching her in soccer as she will be bumped up to a U-8 team this year to play with Jessa.  This excites me!
As a family we have much enjoyed our time together.  I have no idea what I would do without them they keep me going!  They keep me on my toes.  I am so proud of all of them.
Here is one of the pics Tammi took of me
Hold their hands for a while and their hearts forever!
Thanks Tammi for taking our pictures!!!

Thursday, February 4, 2010

Meet You At The Sunset

This blog is answering questions that were asked on a certain page for grieving parents.  I am sorry for those of you that feel this may be hard to read and for those that are reading this as grieved parents I guess we are connected.  To my friends and family this website has been very helpful to me in finding other parents who have gone through a loss too.

For the first meeting of the month we thought we would speak about the holiday season and how you coped. What was it like for you? Did you do anything special in your childs memory?

The Holiday season for me was one I wanted to skip right over.  I wanted to skip over it as soon as Halloween was here and I had no baby to dress up for his first Halloween.  In my head I had played it over and over many times that he would have been a little hot pepper or something along those lines where his feet would be inside a costume that was round on the ends so he would stay warm.  It really hit me when I seen other moms post pics of their babies first Halloween costume.  Just that was the point that I knew the rest of the year was going to be awful.

After Halloween came November 9.  This would have been Ethin's 10 month birthday.  Then there was Thanksgiving which was a hell all of its own.  I was thankful for having known Ethin at all and I was thankful for my J Triplet, but I did not get to celebrate that first Thanksgiving with my punk.  Instead my own actions landed me in the most unpleasant places.  Normally my kids and I put up our tree on Thanksgiving night together playing Christmas music and then watching Miracle on 34th Street.  Not this year I had already decided there would be no tree in my home.  I did not want any reminders of what I did not get to celebrate.  Then there was November 27 a harsh reality that my son was gone making it 5 months.
December 9th came and it felt like no one recalled that Ethin would have been 11 months old.  I was just praying for the year to be over I so badly in my own head wanted to skip it all.  2 days before Christmas I went out of town.  More like I fled out of town.  My kids were with their dad and Ethin was not alive.  Going out of town would allow me to NOT have to do the things I would have done if Ethin were here.  I did not go to the Christmas Eve Candle light service which means I did not sing for it either.  I really wanted to be alone, but I could not do that and be out of town so I took the lesser of two evils.
I cried myself to sleep on Christmas Eve.  I seriously felt like I would never fall asleep and before I knew it I was waking up to my friends saying "Merry Christmas" with all the cheer in the world.  I seriously was nauseated and in my head could not for the life of me say it back.  I really wanted to curl up into a ball and just sleep forever.  By night fall on Christmas day I was done....I was done with the cheeriness and I was done with the smiles.  I went outside and I just cried.  I cried for hours all by myself.  The trek home the next day was very empty.  Suddenly though I also realized I never through the whole Christmas season was able to find the perfect ornament for Ethin.
2 days after Christmas my family would be celebrating Christmas.  Not only would they be celebrating Christmas, but i would be mourning for Ethin yet again as that was finally the day that he had been gone longer than he was alive.  Not a single person in my family that day even mentioned his name or said thank you for the pictures that I parted with for them to have.  It was as if he never existed to them and as if how I may be feeling truly did not matter to them.  It was the most miserable Christmas I can ever remember having.
New Year's Eve was spent at the cemetery.  There I was in the cold MI winter night weather crying at the cemetery wishing I was kissing his sweet face for his first New Year's.  Nope I was alone and with empty arms.  I was so misarably alone and had such an ache in every part of my heart and body.  People wishing me Happy New Year on my phone and I just wanted to throw it!  Eventually I found myself at home crying holding his things telling him how sorry I was. 
January 9, 2010 marked my sweet punk's first birthday.  He would have been one and instead he is forever 5 1/2 months old.  And rather than pictures of my son getting all messy from his first Bitrthday cake have a picture of his memorial at the formal ball that I set up in his honor.  Ethin's Heart Still Beats Heart Ball happened for the first time this year on his birthday and we raised $1800 for Congenital Heart Defect Research (This is what killed my son).  Ethin is my son and I miss him everyday.  As I contiue to finish out my year of firsts I am now also starting to go through the thoughts of what I was doing with him last year as he was alive.  The Holidays were wful, but I am bracing myself for the things that are coming.  I do not know how others do this, but I know that somehow God will continue to give me the strength to do it.  I also know that I one day will spend an eternity of holidays with him. 
I wanted to include the two poems I wrote surrounding Christmas. 

My 1st Christmas Without You Son
There are no lights strung upon a tree this year
No decorations or pictures of Chritmas cheer
No shopping for first Christmas onsies or cute Christmas clothes to wear
Instead I am holding empty arms with a broken heart thinking life's not fair
No Christmas Eve candle light service the glow upon your face
All I have is your blanket and monkey to embrace
No special photos marking your first Christmas here on Earth
I do not get to share with you the special story of Christ's birth
No watching Polar Express or listening to a holiday song
Instead I am looking at your picture trying to stay strong
I can not find the special ornament that represents you
None of them are special enough I can not find one that will do
I wonder what Christmas will be like for you up there
All I can do is fall on my knees and hope that God will share this prayer
Heavenly Father, I love my son and miss him so
Will you take him to the place in heaven where there is snow?
Tell him the true meaning of Christmas and about the perfect gift
Let him know about the angels and the shepherds who were on the night shift
Tell him of Joseph and Mary who followed your every plan
Let him know I am trying to do the same though I may not understand
God tell him how your son saved this world down here
And tell him as my son I was proud that he showed no fear
Make sure you tell him how I much I love him and long to see his face
God tell him how your gift will make this happen tell him of your saving grace
Take him on Christmas morning somewhere where he can see me I will send a kiss to the Heaven's above
God will you please make sure he knows that the day here for me may seem long, but I am sending him all my love!

Then here is the answer to that poem

My 1st Christmas In Heaven
The angels are singing up here songs of joyous measure
Songs of a birth songs that many treasure
The tree here is enormous so full and green
It really is the most perfect tree my eyes have ever seen
God took me in his arms today and told me of Jesus’ birth
He shared with me the way you would celebrate on Earth
Mommy I am spending Christmas in Heaven this year
I want you to be happy please do not shed another tear
Jesus’ took all the children here to hills where there is snow
We went sledding and laughter filled the air I thought you’d like to know
The angels taught us all a chorus wow they are amazing
I am here in Heaven spending Christmas with our King
This is hard for you and I want to ease the pain inside your heart
I am here in Heaven spending Christmas, but we are not far apart
Sometimes I worry about you and God tells me you’ll be OK
He told me your going to send a kiss to me on Christmas Day
He tells me all the time how much you miss and love me
When your smiling and having fun I look in on you so I can see
I like it when I get to hear your laugh and see you having fun
As Christmas time approaches remember the gift of God’s son
This is not forever God told me you will be here one day
We will spend Christmas in Heaven together that’s what I heard him say
Until then my Christmas wish mommy I want to share
Hold my blanket and monkey and feel in your heart I am there
I want you to be happy and live your life down there
God’s plan for you is not done I know you think it’s not fair
So just remember that even when you do not seem to understand
Know that I am in Heaven for Christmas holding my Savior’s hand
Your Christmas wish was heard God shared that with me also
He said there was something you wanted me to know
He said that you love me ever passing day and that you miss me too
I am spending Christmas in Heaven and mommy I know this is hard for you
So Merry Christmas mommy I Love You Too please hold that when life is not fun
Love Always, Ethin Your Perfect Heart Angel, Warrior, Punk, and Son

Wednesday, February 3, 2010

And Now Your Newaygo Lions!!!!!!!!!!!!!

It is my extreme honor to introduce to you the Newaygo Lions Varsity Basketball CHD kids that are being honored at the game.  I met with the team on Monday and they are all honored and excited to play this game.  I read them all the following paragraphs about the kid they are playing in honor/memory of and then when I asked them if they wanted to see a picture they all wanted to see the faces of the kids they were playing for.  So here is the line up!!!!

#1 Sean O’Neil playing in Memory of Heart Angel Ethin RaiLuc Twigg
Ethin RaiLuc Twigg was born on January 9, 2009 with a Congenital Heart Defect(CHD) called Hypoplastic Left Heart Syndrome(HLHS).  His defect is commonly referred to as having ½ a heart.  Unless you looked under his clothes you never would have been able to tell that there was something wrong with my son.  In 5 ½ months he went through 3 open heart surgeries and a diaphragm surgery.  He was a true warrior.  He had the most bright eyes and vibrant smile.  His doctors all loved coming to his room when he was awake to see him smiling.  He loved to be held and always fell asleep on my chest.  He was a true sports fan and we watched Hockey, Basketball, and Baseball together.  He loved waltzing up and down the hospital halls with me and he truly was the best dance partner I have ever had!  Ethin may have been born with half a heart but he changed the hearts of thousands.  Ethin has been the inspiration for many things that have happened in this area.  Sadly on June 27, 2009 The Earth lost a Heart Warrior and Heaven gained a Heart Angel.  Ethin is a true inspiration and missed by all who know him.  May his half a heart have touched your heart and may his heart continue to beat in all of us!  Fly High my Punk Love You Always!

#2 John Harrington playing in Honor of Heart Warrior Andrew Huegel
Andrew was diagnosed with Tetrology of Fallot (TOF) when I was 20 weeks pregnant.  He was born 6 weeks premature and endured his first open heart surgery when he was 6 days old, weighing just under 4lbs.  His full repair surgery occurred at 7 months old.  Andrew has had several cardiac catherization procedures to attempt to widen his narrow pulmonary arteries.  He has three stents and faces mores caths and surgeries in his future.  Andrew was also diagnosed with mild to moderate hearing loss shortly after his birth and wears hearing aids.  Andrew is now a spunky three year old who loves life.  Despite all the obstacles, he enjoys just being a little boy.   He loves Thomas the Train and Elmo, being with his family, and playing with his cars and trains.  We are so proud of him.  He is the bravest little boy we know.

#3 Brandon "Beano" Shultz playing in Memory of Heart Angel Ethan Bilpo
ETHAN BILPO 11/12/00-5/20/09 #3 BRANDON SHULTZ
Ethan was born with a congenital heart defect called, Hypoplastic Left Heart Syndrome (HLHS) on 11/12/2000.  The left side of his heart was underdeveloped and required a 3-staged surgeries to re-route his heart. The 1st of his 3 open heart surgeries was when he was just 3 days old. The other 2 were performed by the time he was 3 years old. When Ethan was 6 years old (almost 7), he was diagnosed with Protein Losing Enteropathy (PLE). It is not certain what causes this nor is there a proven effective treatment or cure. Ethan earned his angel wings on 5/20/08.  Everywhere Ethan went in his short 8 years, he touched so many lives in so many ways,...with his contagious smile, his honest and funny sayings and his courage to fight his long CHD battle, never, ever giving up,...but always pushing forward and making us laugh along the way. Ethan touched the hearts and lives of everyone who knew him. He is our hero, missed more than words can express and will remain in our hearts always and forever.

#5 Aaron Shultz playing in Honor of Heart Warrior Logan Jacks
At the age of three Logan has underwent three major open heart surgeries and multiple other procedures.  In spite of every complication and set back he has endured along the way he still wakes up every morning with a huge smile upon his face.  He is an amazing little boy who loves life, his best buddies Sherriff Woody and Buzz Lightyear, Riding four wheelers with family, playing outside and just enjoying being a little boy.  He is our Hero.

#10 Zenn Timmer playing in Honor of Heart Warrior Brycen Russo
Brycen was born on November 17th, 2007 with a severe heart defect called Hypoplastic Left Heart Syndrome. My family didn’t know about the defect till Brycen was about 15 hours old. Once we found out about Brycen he then was shipped to Detroit Children’s Hospital where he has had his two triple by pass open heart surgeries. No one would ever know about Brycen’s CHD because he is a tough little soldier boy! He is such a joy in life, nothing can hold his little butt down! He bounces back like nothing. He’s the next professional baseball player. He can throw really good for only being two years old. We practice everyday to be the best. Good luck handsome.  Mommy loves you so much my little soldier boy. You make us proud. Keep up the great work. I love you so much Brycen.

#12 Tom Brown playing in Honor of Heart Warrior Brittney Butcher
Brittney is an 11 year old girl that on December 1, 2008 we were told that our daughters heart was 3 times the normal size it should be and that her heart was only functioning at 10%.  After being transferred to U of M Mott Children’s Hospital and many tests later Brittney was diagnosed with Genetic Cardiomyopathy.  On December 9, 2008 Brittney was listed as a level 1A on the transplant list.  By an act that an only be described as a miracle, we received a call at 5:30am on December 16, 2008 (Only 6 days and 18 hours after being listed) that a heart had been located.  Today Brittney is a healthy girl that is back in school, soccer, softball, and dance.  Brittney is a very brave young lady that shares her story with other heart kids and families.  She is a true inspiration to many and she is loved very much!

#14 Justin Parker playing in Honor of Heart Warrior Jordan Snyder
Jordan was born August 9, 2006.  She was not diagnosed with a CHD until she was 1.  She underwent her first open heart surgery shortly after her first birthday.  Her surgery went well and she went on being a “normal” child with no restrictions or medications.  She’s a vibrant 3 year old who goes to preschool and chases her brothers.  Shortly after she turned two she was diagnosed with another CHD.  Jordan would need surgery again.  That surgery happened just a month ago in January 2010.  Her surgery went well and she was discharged from the hospital Jordan developed a staf infection that went into her blood stream.  She is currently receiving IV meds at home, but she is home.  Jordan is still recovering, but she is doing well.  Her smile is one that brightens any day.

#20 Jerry Gonzalez playing in Honor of Heart Warrior Braeden Husted
I was twenty- two weeks into my pregnancy when the doctors told us that our son would be born with a severe Congenital Heart Defect...HLHS. Braeden arrived into the world 16 weeks later, and our lives were forever changed. Braeden has undergone three open heart surgeries, as well as a G tube placement for feeding difficulties. He has developmental delays, but his joy for everyday life is contagious. He loves Spongebob, playing with his big brother, and all things Star Wars. We do not know what the future holds, but we hope that medical technology for our heart children continues to improve. Braeden has taught us that every single day truly is... a blessing.

#21 Eric VanDam playing in Memory of Heart Angel Lindsay Groen
LINDSAY GROEN 6/14/06-5/16/08 #21 ERIC VANDAM
On June 14, 2006 in Luverne, Minnesota a little pink baby girl entered the world.  She was 7lbs 5oz and 21in long.  We were so surprised to have a little girl.  Lindsay was a very happy baby full of smiles and rolls.  She loved to eat and soon got the name “Lindsay Bear”.  Lindsay loved life and loved to play.  She loved playing with her big brother Tanner, her dog Kaye, her toys, and loved being outside.  Her smile lit up the room and her “bear” hugs were the best.  Lindsay was a very healthy little girl.  At her 18 month check up her doctor heard a heart murmur.  She then went to the cardiologist and was diagnosed with severe mitral valve prolapse.  She never showed any symptoms of having a heart problem.  Lindsay had open heart surgery at Children’s Hospital Boston April 7, 2008 to repair her mitral valve.  Surgery went well and she was doing good.  On April 15, 2008 she went into cardiac arrest caused by underlying heart issues.  She was put on a life support unit called ECMO.  On April 28, 2008 she had bypass surgery.  After being on ECMO 33 days, On May 16, 2008 Jesus healed her heart and took her to paradise.  Lindsay Bear is missed by all who knew and loved her.  Not a day goes by that we do not think of her and miss her.  We look forward to the day when we will be reunited with her in eternity.  Until then we share her story to raise CHD awareness and to bring others to know Christ is their Savior.  

#23 Zach Franks playing in Honor of Heart Warrior Tommy Schomaker
Tommy Schomaker was born with a severe Congenital Heart Defect called Hypoplastic Left Heart Syndrome on Dec. 10, 2000. He has endured a total of five open heart surgeries to try and keep his native heart pumping, but in June of 2008, it was clear that Tommy was in need of another miracle and was listed to receive the Gift of Life through a heart transplant. His chances of receiving a proper match were slim due to all of the surgeries he had endured in his eight years of life. On June 3rd, 2009, after a year of waiting and on infusions to keep his native heart pumping, Tommy received a 'new heart' from a generous family who donated their child's heart in the midst of their darkest hours. Tommy has always had a fighting spirit and a true zest for life. He is a sensitive, faith filled, giving and 'wise beyond his years' child who has taken this heart journey and all of his hospital stays in stride. He his now an active and happy nine year old, attending school again and playing with friends! U of M Mott Hospital is very near and dear to our 'hearts' as they have been critical in Tommy's heart success!

#25 Kyle Madrid playing in Honor of Heart Warrior Derrick Carter
Derrick Palmer Carter (AKA “D”) was born April 20, 2009 at the Medical university of South Carolina.  We were told by many docors that D had a “complex little heart” because he has a single ventricle, dextrocardia, Transposition of the Greater Arteries, Pulmonary Atresia, and Mitral Valve Atresia.  Basically D’s heart is backwards, on the wrong side and he functions using half of it.  At 8 days old he had his first open heart surgery, and surprisingly came home 8 days later.  Two days shy of his nine month birthday D had his second open heart surgery.  Again he exceeded all expectations and was out of the ICU 28 hours later.  Derrick is a ball of energy and does not let his “complex little heart” slow him down at all.  He is determined to pull himself up despite being only two weeks post surgery, and we are sure he will walk very soon.  He loves to play with his dogs, read books, and dance.  D is a very happy little boy and brings joy to those who know him.  We couldn’t be prouder of his strength and determination!

And this is a picture of the shirts we are selling!!!  If you want one contact me by email
Short Sleeved T-Shirts are $12
Long Sleeved Shirts are $16
Ladies Scoop Neck shirt $15
Add a name to the back for $5

My life has been changed by a CHD!!!