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.

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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