Wednesday, January 27, 2010

Proclamations, Resolutions, Money giving, and Basketball

Well I find myself today like many other days.  A lot of things rolling through my mind.  So many thoughts in motion and not enough strength to put it down.  Sorry just bare with me through this.  I will start with what I think are some great things.
Friday we went to Ann Arbor to Mott to give them the money from the Heart Ball.  This was good as I also got to decide where the money went.  I chose to have it used for the Fellowship Research Projects specifically the one that is researching shunts and clotting in the shunts.  That is what we are sure killed my son.

Dr. Mark Russel, Myself, & Dr. Bryan Goldstein
It is always a true pleasure for me to go and see these doctors and visit with everyone at the hospital.  That was my home for months and these people all helped give Ethin life and did in a way become a very important part of my family.
Also while we were there I asked Bryan for a copy of the speech he read at the ball and so here that is.

Speech given on January 9, 2010 at the Ethin's Heart Still Beats Heart Ball by Dr. Bryan Goldstein
"Ethin RaiLuc Twigg was born on January 9, 2009; exactly one year ago today.  He was born with a diagnosis of Hypoplastic Left Heart Syndrome-a condition once felt to be universally fatal, not so any longer, although a diagnosis that still carries a very high rate of death before the first birthday.
I am honored to have been asked by Jessica Twigg to speak on behalf of her son Ethin.
For those who do not know me, I am in my last year if pediatric cardiology training at University of Michigan.  I first met Ethin and his mother, Jessica, shortly after is birth, around the time of his initial surgery.  I subsequently interacted with, and cared for, Ethin throughout his initial hospitalization, his re-admission with a viral infection, his next admission with a viral infection, his second surgery, his third surgery, and his fourth and final-surgery.  Throughout this period of time, I observed a smart, feisty, and determined young boy.  He was my buddy.  I also observed a loving and dedicated mother who stood by her son's bedside throughout everything that was thrown at him.  And on Ethin's last day-before ascending to a better place-I, along with Drs. Jennifer Hirsch and Mark Russell, both of whom are here tonight, cared for Ethin until his mother could be with him.  Ethin's heart may not have been put together properly but, it was, so to speak, in the right place.
The disease that Ethin was diagnosed with, Hypoplastic Left Heart Syndrome, is but one of a large spectrum of Congenital Heart Disease or CHD.  I wan tto talk to you tonight about CHD and what you can do to affect this terrible disease.
CHD is diagnosed in 8 of 1000 births, or nearly 1% of all children.  15% of these have defects that are potentially life threatening-most of which require surgical intervention to sustain life.  Nearly 25% of these infants are discharged to home from their birth hospitalization without receiving a diagnosis of CHD despite having a potentially fatal condition.  And this is markedly better than the statistics were 20 years ago.  CHD is the number one type of birth defect, the number one cause of birth defect related death and the leading cuse of all infant deaths in the United States.  Of the over 1 million babies born worldwide with CHD annually, nearly 100 thousand of them will not reach their first birthday.  Thousands more will not live into their adulthood.  Of those that do approximately 1/2 will have developmental and neurological disablities.
In order to appreciate the problem of Congenital Heart Disease, one need look no further than Ethin Twigg, or the children of several others' in attendance here tonight.  But in order to apprceiate why fund-raising events for CHD are so phenomenally importnant, it is important to understand where CHD sits, with respect to other childhood diseases.  Down Syndrome affects just 1 in every 900 babies, yet research in this field receives significantly more funding.  In the US, nearly twice as many children die annually due to CHD than from childhood cancer, yet childhood cancer research receives nearly five times the amount of funding that does researach in CHD.  Goverment sponsered research in Congenital Heart Disease is makedly under-funded.  Less than one-tenth of one penny of every dollar the fedarl goverment spendson medical research finds its way to research in CHD.  Just one penny of ebery dollar donated to the American Heart Association-the principal association for CHD providers and leaders-goes towards CHD research.  CHD research needs to be better funded.
And yet, despite the gross under-funding of CHD redearch, progress is being meaning.  Overall mortality due to CHD has fallen by 30% in just the past 10 years.  Fetal testing is providing parents with knowledge and a diagnosis of CHD in more and more cases.  Pre-discharge screening is being increasingly implemented in normal newborn nurseries, resulting in fewer patients with life threatening CHD being discharged home without a diagnosis.  Fetal interventions are being attempted in an effort to alter the course of Congenital Heart Disease in some of the sickest patients.  The National Institutes of Health has recently created a pediatric/cardiac surgery specific funding consortium termed the Pediatric Heart Network, or PHN.  In time, we hope that PHN and other funding sources like it can grow to properly support CHD research in the manner that it deserves.  Because this matters.
Shortly after Ethin passed away, Jessica returned to the University of Michigan Congenital Heart Center in search of answers.  I cannot fathom how difficult that must have been for her to do.  We spoke for a while in the same exact room where I sat with Jessica when I told her what had happened to Ethin on the day he died.  We both cried. A lot.  At the end of that conversation. I'm not sure that Jessica or I were able to come to any better conclusions as why Ethin's time ended so prematurely.  But I will always remember Jessica telling me that something good was going to come of this.
In the months after that conversation, Jessica has returned to U of M on several occasions-bringing checks raised at a balloon release in Ethin's honor, blankets made for young children in the hospital, and promises of continued support.  This is Ethin's Greates Legacy.
With this in mind, I ask that each of you-in your own way find a way to make a difference in CHD, in honor of Ethin RaiLuc Twigg, whose life was cut short, shy of his six month birthday, by heart disease,  In that way, Ethin will never be forgotten.
Many Thanks."  -Dr. Bryan Goldstein

After he was done we shared a good hug where I told him thanks for making me cry again!

Then last week Wed. I opened the mail on this was in the mail!

A Proclamation from the State of MI declaring February 7-14th as CHD Awareness Week un Michigan!!!
Then today I went to our Newaygo County Board of Commissioners Meeting where they read and signed a Resolution for the County of Newaygo Declaring CHD Week!!!  Yes what a thing to get today!

Commissioner Charimen Adam Wright Reading and Signing the Resolution

After he was done he presented me with the Resolution
Here is a picture of Newaygo County's Resolution declaring CHD Week.
And in true Ethin Spirit here is a picture of his monkey with from left to right: Newaygo County Resolution for CHD Week, Proclamation from the City of Newaygo declaring CHD week, and Proclamation from the State of MI declaring CHD Week.
Yes Ethin is still very much alive.  He has been gone for 7 months and 4 hours as I type this, yet I truly feel he is very much alive in all of this and a part of all of this.
Good Gravy it has been 7 months!!!!  Are you flipping kidding me???  How in the world has the time just so slowly yet quickly went by??  Does no one remember these days but me anymore?
Alright so I also have had a few rough bites in the last week.  And I can not help but just say something as this is my blog and my place to share and vent about life and my reality.
Monday someone that I have always loved and respected told me that I made a wrong choice when I had Ethin concerning the J Triplets.  He told me of how I had Ethin and it was as if I forgot that I had other children.  So I want to just put this out there.  Knowing all that it would require having Ethin as a single parent and all the care that he would need I did willingly give the J Triplets to their dad.  This was not an easy choice, but it was the best choice and the only way I could offer the three of them stability in life that was completely otherwise unstable.  For the record I to this day do NOT regret that choice.  I still to this day feel it was the best choice that I could make under the circumstances that our family was given.  I never forgot that I had three kids at home and to be honest it was heart breaking to know that they were 3 hours away from me and I was needed at the hospital with their brother.  Until you have been in that position I do not feel that anyone could or has the right o judge me.  It was an awful decision to have to make, but in it my children have had the most stability possible given the circumstances.
Also I sadly learned that sometimes the best hing you can do in relationships with people is let them go.  I realized that some people no matter how badly you want them to be a part of your life and no matter how much you love them that they will hurt you whether it be intentionally or not it is bound to happen.  For some people it is the inevitable thing that happens.
Anyhow I can not keep putting words to all this so on with the next thing.
On February 16, 2010 at the Newaygo High School the Newaygo Lions Have Heart Basketball game is being played.  This will be Newaygo boys Varsity playing against Orchard View.  As soon as shirts are available I will let you know.  What I am in need of still is 3 heart Warriors or Heart Angels for the players to play in memory of or in honor of at the game.  The first three parents to contact me on here by leaving a comment with their email ady so I can tell you what I need will have their children being played for at the game.
So that leads to me to in the past 7 months looking at all Ethin is still doing here even though he is not physically with us is a blessing and a gift from God.  Yes I am slowly seeing the gifts in all of that has happened.  I still have many moments, but I do see some things that are gifts.  For instance God gives me strength to wake up every day and the ability to get through the day.  That s a true gift.  I also am going to go back to school and that is a very guided gift from God.  I even still in moments do get the gift of gentle reminders of Ethin.  Like last night I kept thinking I just need a sign that it is all OK and then as I finished reading my second journey through grief book there it was the sign I needed as Ethin's birth verse was staring me in the face!
Talking about God and his gifts to me in the last 7 months I just want to thank you all for the prayers for me as I shared that I would be starting to do something new with my church as a worship planner.  I have to say that I am not so sure how so many do it!!!  However I did get my first service all planne, but we will see how it goes in Feb.  I did have much help in planning the service and am thankful for that and the prayers.  I much enjoyed it, but it does give me an insight into the church that I love that I did not know before.  PLease contiue to pray for my church and my worship planning.
In many updates that I have wrote in the past few months I have contiually asked for prayers for the DeLorey family.  It is with a very heavy heart that I now ask you to pray for Angel and her son Hayden as they will walk through this life without their husband/father.  How unfair it seems that a little boy will grow up without his daddy.  Rick was a good friend of mine and in the past months I had been praying with him on the phone and sharing verses with him.  I was also able to go and stay with their family in October.  That sadly was the last time I will ever see him alive.  Rick Passed away at 10:55 on Sunday night.

Me with Rick and his son Hayden when I was there in October.  This Bible verse is one that I shared with him back in November when it was truly inevitable that his cancer was going to take his life......
I have fought the good fight, I have finished the race, I have kept the faith. 1 Timothy 4:7

With that I am going to stop writing as this update alone has taken me hours to completely write.  I love you Ethin and 7 months later you are still at the head of all my thoughts.  Play in Peace Sweet Punk

The B Ball Team is Full and every player is ccounted for.....Sorry but I will keep all posted for the next time I need kiddos

Tuesday, January 19, 2010

What it's Like The Harsh Reality

Well here I come again with an update that may be hard to read, but after writing something today for a video that is being made I wanted to get it all out on here too.

The video that is being made I was asked what it is like to have a child with a CHD.  So many things came rushing to my mind when I thought about my response to this question.  It was at this moment that I realized there are so many things to say about tit as well as for me and so many others it is not something that always ends with a happily ever after.
Finding out that you will give birth to a child with a CHD is heart breaking.  The news itself is devastating.  You quickly come into a realization that bad things happen and you are touchable.  You become familiar with terms that you never heard of before and you research the defect that your child will have.  You begin looking for doctors and specialists.  You search out hospitals that you know can handle your child.
In the meantime of all this you are still anxiously awaiting the birth of your baby.  You are preparing to have a baby.  You are falling in love with your child as you feel them mving and kicking inside of you.  You are imagining all the things that your child will do and what he will do and what he will be like.  You are going to doctors appointments to listen to their heart and get pictures of them and their heart.  It was having amniocentisis' done to check on his chromosomes and lung development.  It was going through a crazy pregnancy and worrying all the while you were happy that you were having a baby.
It was finally the day I would meet him.  It was the anxiety that he would be here, but I had no idea for how long.  It was knowing I was hours from home and had no idea what to expect.  It was preparing for my c-section and being terrified and excited all at once.  It was being wheeled into a surgery room knowing that within an hour he would be a part of this world and I would no longer be able to supply everything he needed.  It was the scare that if he was not in my belly he was no longer safe.  It was being told they were starting the procedure and all of a sudden it was hearing the most beautiful sound in the world.  Yes he cried and I heard him, but I did not get to see him!  He was alive!!!!!  He came out alive even though they prepared me that he may not.  But he was alive and I heard him cry though I had not seen his face.
It was my recovery while they swooped him off to a room to start IV's and monitoring and Prostaglandin.  It was being tired from the surgery, but trying to convince them I was alright enough to meet my son.  It was seeing a little video and some pictures until I could see him.
It was calling and asking if I could see him for them to tell me he was just intubated and I could be wheeled down, but would not be able to hold him.  It was 4 1/2 hours since he was born and I got to finally meet my son.  It was terrifying to see him like that.  It was thinking that this can not be happening and knowing that it was.  It was nurses everywhere and being told all that was happening.  It was dedicating him to God right then and there not sure of the future.  It was being wheeled away from him knowing I just wanted to stay by him and couldn't.  It was being taken out of the NICU down the hall around the corner and down that hall away from him.  It was hours later pushing myself to prove I was OK enough to get in a wheel chair to go back to his incubator.
It was being scared while I sat there and listened to everything beep.  Having to have everything explained to me about what was happening.  It was wanting to sweep him up into my arms and run away with him.  It was wanting to protect him knowing I couldn't.  It was praying and begging God to fix his heart.  It was feelings of guilt that I put him there.  It was knowing that I was his mommy and I could not do a damn thing for him.  It was the realization that as a mommy my super natural powers of kissing away boo boos would not work this time.
It was crying myself to sleep that first night as my baby was not in my room and I was al alone.  It was having Ethin in the NICU and him being transferred to a different floor.  It was again falling asleep now a whole floor away from my baby to be woke up the next morning by the nurse taking care of him telling me he was getting a blood transfusion.  It was being discharged and going up the elevator looking like death warmed over to sit next to my son in the PCTU.  It was being told there was a room for me at the RMDH which meant leaving the hospital.  It was the day they told me he would have surgery in a couple days.
It was the day of his first open heart surgery he was six days old and I would finally get to hold him.  It was going in there and having them place him in my arms I had waited for so long.  It was praying and hoping that God would bring him back for me to hold again.  It was them taking him out of my arms to take him to the OR.  It was a let down of tears knowing I may never see him alive again.  It was waiting in a waiting room to hear updates of how things were going.  It was finally seeing his surgeon appear through the doors to tell me how things went.  It was hearing the surgeon tell me he was in critical condition and looked very sick.  It was waiting for them to come get me to see my son I had waited all day.  It was all night sitting there knowing he was not doing well.
It was the recovery it took weeks.  It was finally being able to change a diaper and put him clothes, and finally feed him.  It was learning how to place a tube down his nose, administer meds, and check for signs of heart failure.  It was making new friends you would forever be connected.  It was your heart breaking when their babies fight was done.   It was finally being told we would go home.  It was coming home and being terrified I might screw up.  It was trying to find normalcy in a hectic world that we had entered.  It was when things finally seemed OK that it was short lived and back to the hospital we would go.  It was following the ambulance three hours to the hospital praying he would make it there.
It was entering the hospital we had just left knowing he was very sick.  It was being exhausted, but knowing you just could not sleep.  It was watching him stop breathing multiple times and hearing his doctor say I have to intubate him and get a line.  Really it was walking back in seeing him like that knowing I was not ready.  It was another recovery and coming home once again.  It was having my family all together for 3 short weeks.  As it was back to the hospital he would never leave alive again.
It was a heart cath and echos, labs and blood draws.  It was his surgeon coming to tell me surgery was not far away.  It was the night before surgery and I could not sleep.  It was making sure I was there and awake to give him his last bath before surgery and his last meal before morning.  It was being wheeled down with him in my arms to the surgical holding.  It was having the anestegiologist come and take him from my arms.  It was crying and waiting all day long.  It was done he was back in ICU and he was not doing well.
It was being told my child may not make it through the night.  It was emergency chest opening at the bedside and life support being considered.  It was days of being told we are not sure if he will make it.  It was having him baptized he may not live.  It was the call 6 days after his surgery and they said you need to get here now.  It was getting there and being told he was having an emergency open heart surgery or he would die.  It was waiting and praying again that God would hold him in his hands and bring him back to me. 
It was days later he was doing much better they said he could breathe on his own and they placed him back in my arms.  It was holding him again thankful that he fought so hard and was doing much better.  But quickly that changed when I left and was called to b told he was being reintubated.  The next morning being told he would need a surgery on his diaphragm as they had knicked the nerve and it needed to be sewed down for him to breathe on his own.  Surgery again you have got to be kidding.  But all would be well for a bit and recovery would begin.  It was being moved out of ICU.  And fighting with caretakers they just did not always listen.  It was back in ICU he just was not ready. 
It was tears as the days were long and the nights were longer.  It was intubation and extubation it was learning that it had to be slow all on his terms and time.  It was watching his doctor put his head down when things were not good.  It was learning the faces of something gone wrong.  It was having other kids back home and missing them so.  Spending mother's day in the ICU but we were all there together.  It was hoping for tomorrow unsure of the day at hand.  It was finally out of ICU and things would be slow.
It was weening and learning to eat all over again.  It was more changees of doctors and adjusting to the floor.  It was a benefit that would be held back home my prescence was expected.  It was preparing to come home I would be gone for a couple of days.  It was team meetings and making a plan.  It was knowing I would see my other kids, but Ethin would be home in just ten days.  It was saying goodbye to him kissing his head telling him how when I came back I would not leave without him again.  It was being home and calling many times while I was there.  He was getting his first tooth when I left I would only be gone for a couple days.
It was the day of the benefit I called before we went.  It was the phone ringing his nurse was on the other end.  It was knowing immediately that something was terribly wrong.  It was hearing the worst words ever and falling to the ground knowing I would never reach him in time.  It was grasping at friends, screaming for help, it was gasping for breath I swear I thought I would pass out.  It was the race of against time that I knew would not matter.  It was the phone ringing once again it was Bryan his doctor I knew this was the end. 
It was hearing him say the words I never wanted to hear.  It was hearing the sadness in his voice as he told me how sorry he was.  It was falling to my knees on the side of the road begging for life support and finally admitting defeat.  It was crawling back into the car crying and calling people that needed to know.  It was a long ride back to the hospital.
It was coming off the elevator running to the room which I knew he would be in.  It was seeing him lifeless and wanting so badly to wake him up knowing I never could.  It was feeling defeated and knowing as his mother I could no longer do a thing to help him.  It was seeing the tears in the eyes of nurses and his doctor looking completely defeated.  It was bathing him one last time, dressing him one last time, napping with him one last time, seeing the sun touch his face one last time.  It was knowing that I wanted to go back to the day before.
It was coming home with empty arms not wanting to eat or to live.  It was planning a funeral and writing an obituary I did not want to do it.  It was picking out a casket and finding a place to lay him to rest.  It was bible verses that needed to be read and music that needed to play.  It was saying thank you for coming not feeling thankful at all.  It was the day I had dreaded and it was hard.  it was walking into the church and knowing this would be the last time I would ever see him in this life.  It was tucking my sweet punk in one last time.  It was last kiss I would ever lay upon his head.  It was tears as they brought him into the service and more as I followed him out.  It was watching them lower my son into the ground knowing I needed to fight for him to stay alive.  It was weeks later a headstone was placed.  And a month later balloons in his name.
It's been blankets given out, balloons released, months gone by, money from a ball, proclamation writing, and constant reminding that Ethin's Heart Still Beats in us.  It has been the worst hardest, most awfully amzing and beautiful journey I have ever been on.  This is what it is like to have a child with a CHD.

I will be updating again pry tomorrow as some very hard things are happening right now, but I needed to write all this out after I was asked this question.

Please pray for Zachary Yeager's family as Zachary earned his wings this morning.
Jordan is home
Logan is doing well
Derrick is extubated!


Sunday, January 17, 2010

After The Rush of it All

Alright well I guess I will start by saying this: AHHHHHHHHHHHHHHHHhhhhhhhhhhhhhhhhhhhhh

Whew that felt good.  I needed to get that out.  Yeppers that was me doing a blogger scream.  I needed to do that for a number of reasons.  which I am sure you will figure out through this whole blog.  I guess I should apologize for not writing much lately.  It is no that I do not have anything to say the problem is that I have a lot to say and am not sure how to say it.  So I am just going to say it after all this is my blog and my journey through life after the loss of my son and trying to find life for myself and the J triplets.
I will start with this that there is nothing worse than getting a message on my blog or carepage from someone that leaves a message that really just ticks me off.  Now I know that it may not be on purpose that it made me mad, but it did get me riled up and thinking that some people just may not ever understand.  When I say I am burned out and having nothing left I know that I have my other kids but remember that none of my children are replaceable for the one that I lost and even though I have them it does not EVER ease the pain that I do not have Ethin.  I am burnt out from being stressed over everything and putting myself out there that when it was all done I was just tired.  So I have things, but I may not have the energy that you want me to have I also may not have all the ability to do everything you expect of me.  If this is hard for anyone to understand send me an email I will try my best to explain it better, but otherwise do not leave a nameless comment to me.  It is hurtful and quite offensive that anyone would judge me and not be able to put a name to yourself.
In this journey of my life I have learned many things along the way.  I would even say most things have been anything but easy for me to learn, but I am learning and this that I am going through right now is still very new to me and I am still trying to figure out the balance of losing my son and living without him.  Be gentle and understand that as much as you want me to be OK I want that five times more than you do.  I appreciate that there are so many that still follow my family's and my journey through this, but I have never asked you to go through this with me.  So when you read what you read take it at face value for the words that I could find to use to describe things and do not read into them.  I have recently been told that it is hard to read my blogs and again I refer to the previous statement that I have not asked you to watch my pain through these words.  I continue to write and find it therapeutic for myself and I do know that it has helped others in their grief so I am not going to stop allowing my raw feelings to pour into my computer.  I tried an update once where I sugar coated it and all I got was more people that were concerned than anything.
This is MY journey through life without my son trying to find reason and trying to ground myself for my other children.  I love them so much and all I want is to be here for them, but that is not always an easy task.  It is not always easy to face them and their questions about Ethin or any of the stuff that has happened as I truly do not think I always have the answers that they are looking for as well I do not always have the best words for any of you when you ask things.  This is OK as my children and I are truly learning to do this together.  They are as much a part of me as Ethin, but they are still very different than Ethin and no matter what can not replace him so stop telling me to remember my other children.  I NEVER forgot that I have them.  If anything it has truly made me look at them and realize how precious my time is with them.  Losing Ethin made me appreciate them so much more.  I never want to miss a thing with them.  They are my world just as they were before, but that does not mean that I forgot about Ethin in this world.  It means that I have to try to balance that and it is not always easy.
So it has been over 6 months now since Ethin has been gone and the pain and memories are still just as real today as they were in June when it happened.  Except now everything I do I say in the back of my head, "What if Ethin were here?"  I know it seems like a dumb question, but in my mind and in my head he is there and I always wonder.  What if Ethin were here?  Oh how I wish I could have traded places with him.  Taken the crappy heart and given him mine.  Allowed him to live his life and grow.  I just miss him so much lately that it at times is very unbearable.  The sense of responsibility and guilt that has consumed me lately for Ethin is overwhelming at times.  All my inner being is very consumed by a lot of things that surrounded Ethin's life and death.  Wow did I really just write that???  Death sounds so morbid and I have tried to never sound harsh about it.  However perhaps the reality is sinking in.
The responsibility I was given when I had Ethin has been on my mind a lot lately.  I already had 3 amazing children who were my life and I had to make very hard decisions for them when I got ready to have Ethin.  I then had Ethin and had to make literally life changing decisions for him.  Every decision I made for Ethin was a life or death thing.  What an awful feeling to have that on my hands.  To know that I was responsible for everything that happened.  I have the guilt that comes with that responsibility.  The guilt that runs through me from all of it is consuming.  I know you can all tell me that it is not my fault, but it does not alieviate it.

Alright onto other things.......
So once the ball was done I seriously realized very quickly that I could not take a break I could not allow myself to slow down.  With all of that in mind came lots of ideas and a heaviness n my heart that required much prayer.  This is all the things taht have come up......

February 16, 2010 The Newaygo Lions Have Heart Game will be happening in Newaygo.  Our Varsity basket ball team will be wearing Royal Blue Jerseys with Red trim to honor CHD week and to help raise money that will be donated to U of M Mott Heart Center!!!!  These jerseys will be sponsored and be in memory of a heart Warrior or Angel.  There will be T-Shirts for sale also.  I will let you know all the details as it unfolds. 
I have nit said anything in a while about this and need to as it is an important thing to me, but with the ball I got very busy.  Cuddles From the Heart MI is still collecting blankets to hand out to DeVos Children's Hospital in Grand Rapids MI in April of 2010.  We are off to a decent start, but need 100's more to make sure every child there will get a blanket.  These blankets need to be new store bought or newly homemade blankets for children ranging in size from newborn to teens.  There really is nothing better than having a blanket you can call your own while in the hospital.  After we hand out to DeVos we will still collect to hand out to Detroit Children's Hospital in August and then continue to collect to hand out to U of M Mott hospital in December.  We can do this I just know it!!!!

Also after much prayer and thought I am happy to say that I will be going to college this fall.  I am hoping to start at Calvin and study Ministry and small business management this fall.  I am excited about this decision.  I also starting tomorrow am going to start helping with worship planning at my church!!!  Please keep both of these things in your prayers. 

Updates on other kiddos!!!

Logan: Is still recovering from his surgery he had on Thursday.  They discovered a pleural effusion and will be keeping an eye on that please pray for him.
Jordan: She is recovering on the generl care floor now too.  She is only wearing leads and no more IV's and tubes.  Please contiue to pray for her as well.
Andrew:  Had his heart cath Friday and recovered and was home all in the same day!  However they are looking at surgery for Andrew in the next year.  Please keep him in your prayers.
Derrick:  D is having his surgery tomorrow.  Please keep him and his parents in prayer.  Tomorrow will be a long day and they will need those prayers.


Wednesday, January 13, 2010

The Ball in Pictures and SURPRISE!!!!!

This seemed to be the theme of the night Spreading Hope.  Ethin's Heart Still Beats in all of us and to me that brings HOPE!!!  This is a picture of one of the Auction tables and the wall behind it.

When I started this journey of putting this ball together I never dreamed that it would be all that it was or that I would cry as much as I did.  I want to share some of the highlights of the evening and give the amount of money raised.

Our night started out with a great dinner cooked by CSK catering.  They are so excited and have already signed on to do it again.  This ball would have never happened without CSK Catering.  They donated all of the food and their time for this cause.  It is a family owned business and they truly completely support this cause.  Here is a few pics of them....I am telling you contact them for your catering needs they love to cook and it shows!!!  Thank you Jen and Scottie, James & Jen, Tony, Halie and all your friends You all were terriffic!

After dinner was served the night began with a good friend of mine Tom Coverly providing some great entertainment.  He is an illusionist that I met shortly after my son passed away.  He quickly became someone that I knew would pray for if I ever needed it and before I knew it he was someone that I knew Ethin had led me too.  He brought his girlfriend who is also a CHD survivor.  Here is a pic of Tom performing and then of Tom, Tracy, and I.

Me, Tom, and Tracy.  They are both truly amazing people!

After Tom was finished we watched the slide show that I posted the other day.  Go back one post to see it if you missed it.  When that was done I introduced Ethin's Buddy Dr. Bryan Goldstein.  He spoke and did great.  He brought tears to my eyes.  He recalled me saying to him a month after Ethin had died and we spoke about what happened I told him, "Something Good WILL come of this."  I hope that Bryan always can look at Ethin's life and know that something good is coming from all  of this.  Bryan thank you for speaking and being more than a doctor!

Hugging Dr. Bryan Goldstein before he spoke.  This was a Dr. who was literally there from the time Ethin was born until Ethin's very last breath.

After Bryan spoke I said a thank you and began the Waltz in memory of Ethin.

Thank you Tony for dancing with me....Derrick you will be my partner next year!

When that was done there was music and plenty of pictures taken.  So here are some those from the night.....Enjoy........

Valaria(My Grandmas neighbor), myself, and my Grandma

This is me with the two heart families that showed up.

Heart Mom Bonds!  Terri(Mommy to Warrior Brycen), Myself, Monica(Mommy to Angel Faith)

This is me with Denna(Left) and Cassie(Right) they helped me put this whole thing together.

When I talk about my little brothers this is their parents.  Tammi and Tom....My family is not normal, but I love it and they are part of mine!  Tammi took the pics of the night.

One of my fave pics from the night Tammi and I.

This is a picture of me with all the people from my church that were there.  We dubbed this the CLC crew.  Left to Right: Ethin's Pediatrician Dr. Mark Byland & Jen, Steve & Deanna Traxler, Me, Carrie & Dave Crosley.

This is who Ethin is named after this is Rai...She was in the room when I had Ethin.

The night was long and fun.  My feet hurt when it was done, but I truly could not be happier.  Ethin' Heart Still Beats in all of us.  There were 32 people in attendance and this is the grand Total of money raised at the 1st Annual Ethin's Heart Still Beats Heart Ball........

Yes I am happy with the night and how it turned out....Also announcing the date for the 2nd Annual Ethin's Heart Still Beats Heart Ball will be January 8, 2011

So the ball was done and I had one more thing to do surrounding Ethin's Birthday and that was to go to the Newaygo City Council Meeting and get this........

Proclamation for the City of Newaygo declaring February 7th-14th 2010 as Congenital Heart Defect Awareness Week

Mayor Ed Fedell reading the Proclamation at the City Council meeting Monday January 11, 2010

The Mayor signing the Proclamation

The mayor giving me the Proclamation

Me with the Proclamation in hand!!!
Thank You to Newaygo City Council and Mayor Fedell for this Proclamation!!!!!
Now I am starting to plan CHD Awareness week events!!!!  I will keep you posted!!!

I have some huge prayer requests and I hope that you can go to these kids pages and please leave them some encouraging messages.  My Heart Family is all having things done this week and I wish I could be with them, but they all live in other states.

Jordan had surgery yesterday is doing well.  She is having some issues keeping her sats up, but otherwise flying through it doing well.

This is Logan and he is having his Rastelli tomorrow.  Please pray for him and his parents and brother as they go through this.

This is Andrew and he is having a Heart Cath on Friday.  This cath will determine whether he has to have another surgery.  Please pray for the cath to go well and that it will be able to hold off surgery.

This is Derrick/AKA "D" he will be heading to surgery on Monday.  Please pray for him and and his parents as they go through the rest of this week preparing and next week as they have to wait for D to come back from surgery.

These 4 Warriors are so close to my heart and their mothers and I are all very close.  Tracey, Stef, Jen, and Shannon have all been so amazing with supporting me through the loss of Ethin.  These women are truly my Heart Mommy sisters.  I wish I lived in Iowa and South Carolina so I could be with them through the rest of this week and next, but I am in MI and so far from them all.

I think that is all for today.....I will update again as I feel the need to say a lot lately, but most things are not coming out of my head and hitting the keyboard.  My emotions lately have been from one extreme to the other as the high of the week has really been wow and the low of not having Ethin and these other kids that I love are all going through something that I am not sure if I am coming or going.

Again I want to Thank everyone that helped make the Ball possible.....And please remember that Ethin's Heart does still beat in us!
Blessings, Jessica

Sunday, January 10, 2010


Warning turn off the music on the right to listen to the music that will play with the Video montage

Well I am feeling a rush of things right now so this update may not be all that you are hoping for.  Who knows maybe it will be everything you are looking for though.  I do not have a complete amount for the heart ball, but I would be willing to hear all your guesses!!!
So Friday I set up the hall for the ball.  I was there from 9:30 in the morning until 10:30 at night except for the hour I had to go to therapy.  Saturday I woke up and seriously debated whether or not to stay in bed all day and skip the whole day and night or not.  At that point I knew if I did not show up for my hair appointment it would not be long and there would be someone knocking on my door or breaking down my door.  So I walked out of my house and the sun was so bright that I just trucked through the day and made it to the ball and through the ball.
So now may be a good time to speak about the ball.  The ball was great.  We had amazing food!!!  The doctors were late and I was worried!!!  I was so scared that they were not coming and then into salad they showed up and so did Ethin's pediatrician.  So mid salad I gave a welcome and Dr. Byland prayed.  As dinner finished Tom Coverly was introduced and he entertained us for a little bit.  He is an illusionist and a good friend of mine.  His girlfriend is equally amazing as she is a CHD survivor!  Immediately following we showed this video.  This is the video that most of you all helped to create so I thank you for that!!!  Contact me if you want a copy please.
  From there I introduced Dr. Bryan Goldstein and he spoke.  Bryan was a very important provider for Ethin during his stay and honestly I was so honored that he agreed to speak at the Heart Ball.  His speech was very factual, but it had so many personal touches to it and I am sure t one point I thought he was choking up a little.  He recalled when he had to sit in a room with me a month after Ethin had passed away to talk about what had happened to my son.  He remembered me saying that something good would come of this.  Well I hope that he was able to walk away last night and know that I meant what I said that day.
  I will say more about the ball when I get all the pictures, but here is one picture that I hope to use for the paper.

 From left to right the docs from Mott:  Dr. Mark Russell, Dr. Jenna Hirsch, Myself, and Dr. Bryan Goldstein

Then today I woke up and went to church.  On the way to church I stopped and picked up one of two birthday cakes for Ethin.  The first went to church for everyone there.  It said Happy 1st Birthday in Heaven Ethin.  Then after church I went with Deanna and Carrie to clean the hall.  From there it was lunch and from there dinner with Ethin's Godparents to have cake for Ethin and sing happy Birthday.
I am sure it was at this point that everything may have started to hit me everywhere I had hoped it wouldn't.  Started with the song.  and then from there went to my own sister telling me I was not allowed to cry!  Really are you flipping kidding me!!???!!!  She made me so angry.  I did however have a great time visiting with Mandy.  She has always just been one of those people that I love to be around.
Needless to say overall what has now happened is that I really have nothing left anymore.  I am alone and I am emptied right out.  I have no reason that I need to be all poised and held together.  I am so empty inside and the reality is I feel so alone it.  I have put on a happy face and pushed myself and I am now past his birthday and realize I do not have a picture of him all messy with cake, but a complete emptiness inside my heart.  I just want my son!  I want my baby boy in my arms.  I want a smiley little one year old boy that is standing up and saying "mama" when he wants me or needs me.  Instead I have just memories and I hear myself sobbing for him.
So what do you do when the adrenaline is gone and you are in the pit?  I have so much to do yet and can not find my bearings to stand up and be all right with everything that is happening again.  All the emotions I am feeling!  Oh Ethin I miss you........So much.
Here is a picture I made on Thursday night.............Blessings, Jessica

Saturday, January 9, 2010

Happy Birthday Ethin

Today is the day that I am not sure if I wanted  it to come or am dreading it.  A year ago today there was a life that came crashing into this world.  He was smaller than any of my other children by 2 whole pounds and he had a very special heart.  I named him Ethin RaiLuc.  I suppose most people are always asking how I got his name and so this is how it all came about.  I picked out 4 names that I liked: Jonah, Jonas, Ethin, and Eziekel.  I then asked my J Triplets to pick one of those names.  They picked Ethin and that is why he did not have a J name.  Then my friend Rachel who we all call Rai had asked me if it was  girl to name the baby after her I sadi yes I liked Rai.  Her husband thought he would get in on that fun and said if it was a boy I should name it after him.  Once I found out it was a boy I just put their names together and got RaiLuc.  So Ethin RaiLuc it was and I really fell inlove with his name right away.
Ethin's birthday is today my sweet baby should be one today. 

Dear Ethin,
  I am so very proud of the things you have done.  I am so glad that God chose me to be your mommmy.  You changed my life so much.  You changed so many people.  Today is your day that we will celbrate your life.  You really are the reason for so many things.  You have been a light to this world and to my whole life. 
  I hate that you are not here with me today, but I bet your party in Heaven is way better than anything I could throw for you here.  Though your life was short I just know that the things you will be a part of will be forever long.  You will always touch lives and your heart is still beating in all of us. 
  I love you Punk Always, Mommy

Just for the record this was not the type of mother I thought that I would be.  I never thought I would be the mother who was saying happy birthday to Heaven.  I miss him so much and can not believe he is not here.  But he is here in my heart and so many others.  May you all go outside today and feel him kiss your faces with the sun's warmth.  I know that I did.  The sun here is so bright and warm on me today that I can feel him kissing my face and hugging me. 

Thursday, January 7, 2010


My big blog of nothing!!!
Nothing is making me not stress about the ball.
Nothing is taking away the empty feeling inside my heart
Nothing seems fair that I do not get to have Ethin here with me for his first birthday
Nothing makes me feel better about any of this
Nothing Nothing Nothing!!!

Alright I just had to get that out.....I will try to update tomorrow when maybe I will be feeling better

Tuesday, January 5, 2010


Alright sorry there has not been an update lately things here are feeling crazy with the ball coming up on Saturday.  I truly am so stressed about it that I can not wait for it to be here so I can not stress anymore.  Not to mention I have yet to write out my welcome and my Good noght speech Maybe I should find takers for that!  LOL  So I got the definite email today that Ethin's surgeon will be at the ball!!!  I am pretty excited to see her and the other doctors too.  Also there are a few heart families coming and friends.  There will be an illusionist there too.  I am very excited!  That night will be a good night no matter how it turns out! 
So I guess it appears that I have the world's worst cold!!!  I am supposed to be able to practice dancing the Waltz which I did yesterday for 2 hours and my body is thanking me today, but I feel like ucky!!!  I can not shake the cold. 
OK so something else that is weighing heavy on my mind lately is obviously Ethin's 1st birthday is fast approaching and I am just feeling so down about it.  I keep thinking that I should be getting ready to have a big birthday cake not a prime rib dinner!  I should be wearing jeans and  t shirt in case he got cake on me not a ball gown.  Nope there will be none of that normal stuff.  I miss him so much and am tired of crying myself to sleep lately.  Not sure why it all hits me at night, but it does.  When I am all alone and there is no one to rescue me from it. 
So there is more too.  This month is so full of all the kids I love having caths and open heart surgeries.  And the worst part is that I am so far from all of them that I can not even put my arms around there moms and sit there with them.  I just hate that Heart Defects exist.  I hate that they control so much of so many lives of those I love.  An awkward thing how connected the phone, blogs, and emails have made so many of us.  Just please keep all these kiddos in your prayers as between now and the next two weeks they are all having surgery.....Logan, Derrick, Brycen, and Jordan.....And Andrew has his heart cath.
I have so many more things to say, but can not seem to get the words from my head into the blog.  My heart hurts my head is pounding and the Nyquil is calling my name! 

Friday, January 1, 2010

Dear 2010 and recap of the last Decade

Dear 2010,
  First I want to tell you welcome!!!  I have a few things I want to share with you and a few requests. 
  Let's me start by saying that I have been waiting for your arrival and am happy that you are finally here.  You see your friend 2009 was not as kind to me as I would have liked.  2009 started off rocky with the birth of my son and all his surgeries and half way through the year 2009 ripped me down to nothing!!!  2009 killed my spirit, faith, son, and heart.  So I am hoping that you will work with me to fix the damage. 
  I am already dreading things that you will bring, but I am willing to see past those few things if you could please treat me gently.  Help make the days I am dreading a bit better by bringing me joy through them.  Maybe a little more sunshine and I would appreciate some more smiles.  Would love to have a year filled with lots of good memories.  I guess I can say that 2009 did leave me with some very good memories that I am sorry to say you will not be able to even come close to doing.  So no need to try that hard.  However like I said before there is some very rough damage that has been done.
  2010 my son's birthday is in a week and that will be very hard for me.  Maybe you could help ease it by being a nice day.  Now I know I live in Michigan so I am not asking for a miracle of warmth, but a little sunshine and good roads would help.  Also we will together face my first CHD week, Easter, and mother's day without Ethin.  I need these days to be gentle and understanding.  June brings a lot of hurt and some kindness there would be appreciated! 
   Also let's not forget that I have big plans for the year and would love if you could help me through it.  I really can not handle another year like your friend gave me so let's focus on that and stay positive.  Oh and please try to understand that I may cry often about the things that happened in 2009 and you may remind me of some of those things.  it is ok and I am not mad at you.  2010 I think if you can contiue to understand all of these we should be fine.  However if you give me blow after blow like your friend did when you leave I will not have a problem telling you off on the way too.  Alright I think that's all.....Again welcome 2010 I really do look forward to spending the year with you!   Jessica

Well I made it through day one of 2010.  I almost made it through with no tears!  Then I went over to my friend Missy and Jimmy's house and she gave me my Christmas present.  I was in tears as soon as I had my eyes on it.  She gave me a beautiful picture of a little angel boy playing by a creek.  The little angel boy in the picture has dark hair and as soon as I seen it I just pictured that being Ethin.  Thank you to them for thinking of me at this time and including Ethin it.

So this month is going to be very long with all the things going on......Besides Ethin's would have been first Birthday which is the ball there are so many of our heart fmily kiddos having procedures.  I am just worried I love them so much as if they were really my neices or nephews.....and their parents as if they were my sisters and brothers......This Heart Family I have there is such a connection between us......I sure wish that I could take all their fears and scares away and be with them through everything that is going to take place and I can't do anything I feel so helpless!  So I ask you to please keep in your prayers all these kiddos that are close to my heart as they are all going to have something happening in January.....Andrew has a Heart Cath, Logan has Surgery, Jordan has Surgery, and Derrick has Surgery......Pray for them all please. 

I really still can not believe that I made through 2009 and have now really made it through the first day of 2010.  When I look at the last decade all together I survived so much!  I had all 4 of my amazing kiddos in the last decade.  Jessa in 2001, Jonathin 2002, Jayde 2003, and Ethin 2009.  I also survived my divorce in 2005,  Also fell completely in love in 2005, Then survived my complete heart break in 2008.  I completely found God again in the last decade mostly in 2008 and really never lost my faith through it all.  I made awesome friends throughout the whole decade.  My grandfather passed away in 2003 and that was the first very hard death I expericed in my life.  I moved 11 times, I graduated highschool in 2002 and then college in 2005.  I coached 3 teams in soccer and 1 in cheerleading.  I found out about my health is not the greatest, but I manage it without allowing it to control me or stress me more.  I watched the J Triplets all start school!!!!  YIKES!!!!  All 4 of my children were baptized in this decade the J Triplets in 2005 and Ethin in 2009 all by the same pastor.  I gave my public proffession of Faith and became a real member of my church in 2005.  I was in 2 car accidents one in 2006 and one in 2009.  I have owned 9 ars in the last decade(Wow that is excessive!!!)  I went out of MI 4 times.  I guess overall the decade was bumpy, but I survived it.  Really what more could I ask for.
In all honesty looking back on the last decade I truely believe that Jessa, Jonathin, Jayde, and Ethin were the best parts.  With my divorce being a close second!  All in all this has all made me a much better and stronger woman.  It has also made me come to terms with all that I truly want in my life.  I know that I am stronger in my faith for going through it all no matter how painful it was or has been.  I also know that I have an amazing God who will not watch me struggle in the water.  He will jump in and at least keep my head above the water. 

Alright I guess I should get some other things done....Oh and I want to thank you all for being such an amazing part of my life in the last year.....You have all been a true blessing in my life!