Reliving trying to Grieve

January 9, 2010

VFW Hall
9075 Mason Dr
Newaygo, MI 49337

Doors will open at 4:30pm
A welcome will happen at 5:30pm
Dinner immediately following the welcome 6pm-7pm eat dinner
7pm introduction and about the event
715pm introduction of a speaker
745 faces of CHD video
8pm a formal waltz in memory of Ethin Twigg
805pm a thank you and enjoy the rest of our evening dancing

Dinner will be donated and catered by CSK Catering. There will be things to drink with a tip jug donation.
There will be a silent auction and dancing after the thank you
Tickets are $75 for one or $125 for two please make checks payable for the tickets to Jessica Twigg and in the memo line write Heart Ball
This is a black tie event so dig out your tuxes and formal gowns for a great cause that will help the Hearts of many!!!
All proceeds from this event will be donated to the University of Michigan Mott's Children's Hospital Congenital Heart Center in Memory of Ethin RaiLuc Twigg 1/9/09-6/27/09
R.S.V.P. to Jessica Twigg
513 Sunset Dr.
Newaygo, MI 49337
chdhlhs09@yahoo.com
616-634-3029
In other news I am still in desperate need of blankets. Our Cuddles From The Heart Program in MI is off to a good start and we have about 210 so we only need about another 90. I think that this is very doable. I also think that if we get more than that would be even better as it would allow the kids and the families to really have a choice. You can mail me your new store bought or homemade blanket to Jessica Twigg 513 Sunset Dr. Newaygo, MI 49337
We will be handing these blankets out in Feb. at Mott's where Ethin spent his life. The comfort of our own blankets during his life was just enough to make the hospital feel more like our home than a hospital. The nurses liked putting them on his bed and I liked knowing there were some areas where comfort was attainable. So let's get these blankets!!!
I also still have Ethin's Bracelets. They are $2 each and I can mail them to you if you mail me the money to the above address also. All the money from these bracelets are funding the heart ball. I am also in desperate need of more pictures for my Faces of CHD video. I need pictures of people and children with CHD's emailed to me at chdhlhs09@yahoo.com with the picture I also need the name of the child and the CHD they have. I also need more CHD Angel pictures with those pictures I need their first name and last name if you wish as well as their birth date, Angel date, and CHD. Spread this around please as I am trying to make this video a good one to show at the heart ball.

Alright so as life goes on I continue to find myself many times continuing to look back at my time with Ethin and all that happened. I have played it all over and over in my head, reread our carepage(The link is on the right), looked at every picture, and played the videos. I think of many things. When I do this I think of how life changed however I also think of all the sacrifices that were made. I think of all the happiness and I can not help but think of all the hurt that came too. And there is guilt there is plenty of guilt.

Guilt is an overwhelming part of my grief and my inability to grieve. So I see a counselor weekly and somehow I still am not grieving. I am feeling guilty though. I feel more guilt now than I imagined possible. With guilt comes anger and so there are times I have that. Anger brings sadness and the sadness goes right to guilt and skips grief. Does that make sense? It really is a vicious cycle!

I felt guilt the first time I seen Ethin. I felt happiness, but I also felt guilt. I felt guilt that I did that to him that it was my fault he was born like that. Now I know it wasn't, but I still can not help think I did something wrong. So there I looked at my new baby and he was already fighting for his like at that point. Maybe a part of me felt selfish that I was asking him to fight that hard. A part of me felt guilt and felt selfish.

The days that followed were filled with many things and many feelings. I felt heart broken as I watched him lay there helplessly and I could not hold him just talk to him and touch him. I would read to him and pray constantly. The guilt of being his mother and there was nothing I could do to help him or protect him. Surgery day came and I was able to hold him. It took 4 people to place him in my arms. I was overwhelmed with emotions that morning as they placed him in my arms. When I looked down at him he looked so peaceful and I felt happy and sad. So many times in his life I felt polar opposite feelings. Then they took him away from me for surgery and my heart broke.

Surgery......This was needed for him to sustain life and it was the option I had chose. So of course when he was taken to surgery I was scared, but guilt played yet again into the equation. What if he did not come out of the surgery? What if he was unable to make it through the surgery? That would be all my fault, because I made the decision for the surgery route. I made the decision for surgery rather than the transplant. Yes guilt layed heavily upon my mind. Then he came back from surgery and I got to go see him. That first look at Ethin was horrifying. Ethin did not look like the sweet peaceful baby I had sent down he looked like a puffy marshmallow that was clinging to life by machines and IV's. I did that to him I asked him, no I demanded that he be strong and fight. I demanded that he at 1 week old FIGHT! I told him how I needed him never taking into account all that it meant for him. I felt guilty for doing it to him and I felt selfish for asking so much of him.

Recovery was a slow process, but it happened. Ethin recovered and we came home to a life that was devastating to our friends, family, and my other children. I became a Heart Mom and forgot that I was a regular everyday mom. I invested in hand sanitizer and made rules about entering my home. I discussed with my ex husband that if the other kids were sick they could not come over, I shopped at night in the middle of the night, My other children could not touch Ethin without handwashing and hand sanitizer. Really now I felt guilt that I was making it impossible to be home and normal. No worries though Ethin got sick and we went back to our "Safe Place".

Safe Place???? Yep the hospital was safe I had no worries when we were there however we got back and again guilt consumed my life. I left the J Triplets again to be with Ethin. To be with Ethin who was back in ICU and intubated and again fighting to survive. How could I ask so much of him, no I did not ask I expected it. I expected that he could do it that he would do it. I watched him fight and within 2 weeks we were back home.

Home was a foreign concept to me. Not to mention I was told that many people were vested into Ethin and I and our family and was asked to stay at home and not go to church. Um OK....now guilt that I have to tell my kids we can not go to church we could not be normal! I guess that may be when it hit me that we were no longer just a normal everyday family. I called every day the J triplets were to come over and make sure they were perfectly healthy and then we locked ourselves in the house. I had to explain all the medicines to kids who did not understand and I had to teach them about Ethin. We all adjusted....The kids came in with hands open for a squirt, they happily rode with friends to school, and they were content that we never left the house as a family. They also did not understand why their friends could not come play. I was pulling my other children from the world they knew who does that?

However the world they knew was dissipating and this new world of being a heart family was evolving. We were all adjusting and it was our new normal. Then that all changed very drastically again. Ethin got sick and when he left our home that night he would never come back. Instead he would live out his life in the hospital our safe place. Back to the hospitals, back to asking my other children to understand, back to the unknown back to the selfishness, and back to the guilt. Guilt of leaving my other children and asking Ethin to fight again so hard.

I knew Ethin would have surgery and so I left him for a weekend to come home with my other children. I felt guilty when I left, but I needed them too. Then I went back to the hospital and planned a trip for them to come there. They came and Ethin could not leave his room. How was it fair? How could I do this to all of them. My kids hated the hospital seeing their brother like that, not having me with them, and Ethin fight Punk is all I requested.

Surgery again approached. Ethin came back from that and it was awful. My guilt now looking back at those 6 days after that surgery eat me alive. I would cry in front of him, storm out because I was angry and scared, and I would pray and tell him to hang on and to fight. I felt guilt then seeing him like that knowing that every day was a prayer that he might not make it. Then I would pray not in his room and ask God to stop the hurting. To not allow him to suffer like this.

Then he was in an emergency surgery to save his life and I agreed, not because I knew he could do it, but because I did not want to lose him. Because I NEEDED him, because I did not want to bury him. So I agreed to surgery because he is my son and I wanted him to live I loved him. I just wanted him to have a chance at life no matter what the cost. It was a rough go but Ethin was on the mend. He had a diaphragm issue and intubation and extubation problems but by the end of May and 2 months in the ICU he was on his way!

It was a long rough road but he was doing it and I was still scared all the time. However I came home on June 25th. I got in at dinner time and the next day I took care of the new family car and got the other kids. For Saturday would be a benefit for our family and we would all be there except for Ethin who would be home in 10 days. I felt guilty when I left him, but was assured he was stable.

June 27, 2009 at about 8:30am I got a phone call that changed my life. Ethin had coded. I left my son and he was dying. I left my baby I left him. What kind of mother leaves their baby. By 9:45am I got the call I never wanted as I was on my way back. It was our favorite doctor. He told me Ethin was gone. No this can not be happening. I was gonna be back later that night he could not be gone. So guilt rushed in and then it was like a fight or flight mode. I called everyone I needed to and tried to stay calm. I thought when I got there it would be a bad mistake. No such luck. Guilt would rule me.........

I got the hospital at about 1pm and there was Ethin intubated, IV's, and dressed. I would not even take him from our nurse I made them take it all out. I felt guilt when I seen him for leaving him. But I also felt complete failure. I felt failure set on me and I felt like it was not real. I failed my son. I held Ethin for hours about 6-7 hours to be exact. I napped with him and I tried to convince myself that it was not real. Giving him back was the hardest thing I have ever done as I knew I would never hold him again. Then I had to pack his stuff and my stuff. I had to pack our "home". It was time to go home. It was time to accept failure and allow guilt and selfishness and reality to set in.

So life goes that I planned a funeral that I do not remember. I included my kids in as much as I could. I wrote an obituary and ordered flowers. I picked out a casket and a cemetery plot, I picked out music and bible verses, I asked important people in Ethin's life to carry him into the church and to his final resting place. I with tears in my eyes watched them lower my baby into the ground. I watched that and remember that very clearly as I said goodbye to my Hero, my Punk, My Warrior! He was my Warrior and He is forever my angel!

Yep life is going on and I am standing still. Life continues and for the J Triplets I am too. However that does not mean that my guilt goes away. If anything it may be worse I asked God not to allow Ethin to suffer and now he is not. My prayer was answered just not the way I was hoping for. My guilt makes it impossible for me to grieve. I am hoping by admitting that I feel guilty perhaps I can grieve. It may take a long time. However I know that I am not doing this alone. Ethin is with me and God is in me.

This is Ethin's Life you will need to turn off the music player at the top of this page to hear the music and the videos on this slideshow. This is my Warrior

Make an on-line slideshow at www.OneTrueMedia.com

Blessings,