Counting the Days

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.

Well I took a the weekend off from writing and I am back to it! Lots to share I guess or a head full of thoughts that run my life! Thoughts are controlling. Sometimes in my head I feel like I am in a circle room and I am frantically trying to find a corner to hide in. Not gonna happen right?! Anyhow before I get to into all this I want to share a few things with you that I got this week.

This amazing collage was made by Abiding Hope Collages.

I sent them Ethin's name and the things that remind me of him or that describe him. Joshua 1:9 is his birth verse and it says this...."Be strong and courageous do not be terrified do not be afraid for the Lord your God will be with where ever you are." That may be the one thing that when I think about I still just see that to be so fitting for Ethin.

Also I have this picture of Ethin's Angel wings. The wings were made by Angel Wings Memorial Boutique. I should be getting these in the mail I believe.

I love the wings. They are so beautiful. makes me think he really does have wings up there. Oh how much I miss him and wish he would use those wings to fly down to my arms!

This past week really was a rough one for me. Ethin would have been 10 months old. Our heart family celebrated their Ethan's 9th birthday at the cemetery with a balloon release for him. Another Heart Warrior one her fight and went to Heaven. I am just so over taken by the thoughts. How none of this is fair.
10 months ago I was Heart Mom and now I am a Mom with a child in Heaven. I did not ask for this. I did not want this. My heart just aches for Ethin and my heart aches for Sandy as I know this week was so hard on her with Ethan's birthday. Ya know I have some thoughts that are hard as I look forward to January 9, 2010 as then I will stop counting the 9th of every month as a birthday. Then I will begin my count of years. Kinda that same thing for June 27th of next year. It will be at that point I will stop counting the months and count the years too. I am not counting now but if I was he has been gone now for 4 months, 2 weeks, 5 days, 2 hours, and 17 minutes.
The amount of time Ethin has been gone will soon be more than he was alive for. This thought scares me. I hate that in a month he will be gone longer than he was alive. If I was counting his length of life he lived 5 months, 2 weeks, and 4 days. So there will come a time here in a few weeks that he has been gone longer than he was here.
I know I have talked about this a lot lately, but Thanksgiving is on the 26th of the month. How am I supposed to eat turkey and be happy knowing the next day is 5 months since my sweet boy has been gone? Not to mention it would have been his first Thanksgiving and he will not be there!! Oh I HATE this I HATE not having him.
My head has so many thoughts and I just can not even get them out right now, but I thought I would share this poem I wrote the other day when Amelia earned her wings and went to Heaven. I wrote it for my Stef when she posted about Amelia and her Blog title made me write this as I know how very sad we all are over the loss of another child due to CHD's.

RIVER OF TEARS
Tears falling from our faces and forming a river we all have come to know to well.
Our lives are all so connected and this river is proof of the stories we share and tell.
This river flows but many will never have a clue thankfully they will never know
The water in this river gets higher every time our heart family takes a blow.
It may rise do to surgery another day of waiting to read words of a page
When things are bad the storm is hard the river water rages
Some tears that form this river are ones of pure joy
Ones that are happy when our Heart families bring home their girl or boy
But nothing quite compares to the flood that we all feel tonight
As the river rises and our tears we can not fight
Rise river you take theses tears that we all cry
Because you gain tears the most when we all must say goodbye.
Life seems unkind, unjust, and simply not quite fair.
For miles separate so many of us when life seems not to care
We all have found each other and in this river we all wade
We cry as we know a life is gone it is the price paid
A CHD has taken another life to the heavens up above
The river of tears is raging on as another one is gone one we all love.

Jessica Twigg
11-12-09

Thank you for the prayers for Andrew keep praying as we have to wait till tomorrow for results!!!
The Delorey family as Rick is coming home from the hospital on Hospice they are saying about 45 days.

Heart Ball, My family, and me please I need to start to find some peace.

Blessings,

The Storm

So I have written a lot in the last few days. Maybe that is overload for some of you and I am sorry. I just have the urge to write everything down right now. I write when things are to much to bear. When if I do not get it out I feel like I may explode. Clearly that has been a lot lately. I keep wondering why it is so much harder for me right now than it has been, but that seems to be an empty question or a stupid question. So I am here to write again to get it out.
A friend of mine her son Ethan had HLHS and PLE and he would have been 9 years old today. Ethan was a face of HOPE for so many of us. This child with 3 others was the reason Hearts of Hope in MI was started. I talked to Sandy today just to let her know that I am here and I love her. Ethan's birthday today just breaks my heart. He should be here and celebrating with his family and instead we are all missing him and hoping to find ways to console his family. I have known all week that this was approaching. We all Love You and Miss You Ethan you are never far from our hearts.
Well that is just one thing, but the reality is there are so many things I can barely grasp the whole concept! So I made it through Halloween. I made it through the fact that on Monday he would have been 10 months. But now I have Thanksgiving, Christmas, New Years, and then his first birthday. Which is the day of the Heart Ball I planned.
See how the world cruely laughs at me. Why can the holidays just not happen this year? Can' the holidays just go away??? Why can't life just stop for a few months. You know in December too that the amount of time he has been gone will exceed his life? No this can not happen. I can not deal with so much. I want the world to stop.
I had a nightmare the other night about Thanksgiving. I say nightmare as I felt awful when I abruptly woke up with sweat and tears running down my face. My family was all together and laughing and they all kept looking at me and they were angry that I was not laughing. I tried, but I finally exploded screaming at them and crying as I ran out of the house. In my dream I felt like I could not breathe. When I woke up I was shaking and crying. I searched frantically through the blankets for Ethin's monkey and his blanket. I sat with them and cried myself back to sleep. I know I cried as I woke up and today was here.
I keep thinking about the time I spent with God. Trying to hold onto that. Hold onto the fact that Ethin is genuinely well. Hold onto the fact that God loves me. Trying to hold onto all these things is like holding onto a flagpole during a tornado.Next to immpossible. This is all very similar to a Tornado in thinking.
Ethin dying was a tornado in my life. Once things settled he was gone and there is nothing but pure devastation. Instead of rebulding homes I am trying to rebuild life. Instead of calling in a contractor to rebuild my home I am using a counselor to help. Noone after a torndo knows what to say and people in my life are the same way. This was a tornado and I am waiting for the afterwinds to pass. I am standing here looking and I am angry and devastated still to this day that Ethin is gone.
Writing words like this is so hard. I hate hate saying he is gone. But the words He is dead are cruel. Saying he earned his wings is a bit better however that was just not the goal I had for him. Saying he has passed is like wondering if I should have been waving at him through a car window. Moving on some call it, but that feels like he had a bad relationship and was going to the next thing. So you see what is one supposed to stay. Another mother wrote this: "I hate saying he is gone like I have misplaced him I did not misplace him." I can relate to this.
So how am I supposed to do this. How am I supposed to put two feet on the ground and look at the damage and deal with the devastation? I have tried to look in my Bible, I have tried to pray, I have tried to forget. Nothing works it is all still there. I can not forget so that is unrealistic. I feel lost opening my Bible like I am a child opening it for the first time. Praying is a whole chore all its own.
Praying for me used to be so natural. I would even say few times that I prayed rather than I just talked to God. So why is it so hard now? I mean I know that I am angry at times with God, but why can I not just "get over it"? Yep that's right I have just said the very thing that drives me nuts. Get over it. WHACK!!!!!!!!!!! (Reality giving me a high five to the face) Because there is no getting over it. Another vicious cycle in all of this. My son died, I am angry at God, I feel sad, hurt, scared, guilty; I feel all those things, because Ethin is gone. You see how this can all go around and around and eat me alive.
"Life isn't about waiting for the storm to pass it's about getting out there and dancing in the rain."
So the tornado already happened. I am in the aftermath the after storm. Ethin I am going to walk in the rain. I can't dance yet, but at least I am walking in the rain. Besides walking in the rain does make it impossible for people to see my tears. My life really is a tornado all it's own. I want to crawl out from the basement and feel the sun shining on my face.
One day I will do this.
Blessings,


P.S. If you have not read the other posts this week go back you may want to read them as this is my forth post this week. Love you all so much

Fears

"When I walk into a room I fear someone will talk about my son....But the bigger fear is that they won't."

FEAR....Boy there certainly have been many. To many really. I am sitting here tonight and am not sure if I want to cry or just sit and watch TV cuddled with Ethin's blanket and monkey. Yes I cuddle with that blue prayer shawl and that monkey we all grew to love seeing him with.
It's a fear for me to cry. I think mostly because I am afraid if I start I might not stop. On Monday night I cried myself to sleep. I tried to stop on my own but with a failed attempt I wok up on Tuesday morning. Sleep has become a constant fear as well. Sometimes I fall asleep and then there Ethin is plain as day doing well and then suddenly it is like watching TV watching the medical staff race in there to him. Fears that bind me and hold me.
I have a Fear of leaving my house. Silly as it seems I am safe in my house no one to judge me or tell me I am wrong for how I feel. And if they do I can ask them to leave. Public places are a fear for me. When I walk into a place I know it is written all over my face that I am in pain. Also even though I live in a very small town I still sometimes get the "Oh Jessica How are you doing and how's the baby?" Ugh.....I put my head down say he died and walk away. So yes my house is a safe place for me!
Fears run deep and I feel them control me and I feel them swallowing me. I am afraid of something happening to my other children. The fear of losing them or having them be gone scares me terribly. When they sleep here I am up constantly to check on them make sure they are breathing. No more playing outside without me anymore. Camping was a great way to hide all that as we slept in the same tent. Yes I am scared of losing them. Losing Ethin made me realize that I was not safe anymore. Bad things can happen.
I live in fear that my J Triplets will not know how very much I love them. That they will not know how much each one of them means to me. They all hold a very special place in my heart. My heart belongs equally to all of 4 of them. Ethin knows how much I love him and miss him. I worry that Jessa, Jonathin, and Jayde will not know how much I love and need them.
I have a fear of inanimate objects. The table for example. Not like I think the table will get up and kick my butt, but that it silently is another way that this world is cruel. My table as the years grow is a simple reminder that there will be an empty place at it. Our van Jayde sits in the far back drivers side, Jessa far back passenger side, Jonathin right behind me, and.......Ethin was supposed to be right behind the passenger seat. The van is a cruel reminder that he is not here. I am afraid that I will not be able to see past these things. Not to mention the empty damn crib that I can not take down!!!!!!!!!! Inanimate objects part of my fear.
My friends have fears with me. I have some friends that hope I do not bring up my son. They are afraid to be around me because I might say his name or cry. They fear, because they do not know. But this hurts me to know. I have a fear of being hurt more than I am so this is a bad mix. I do not expect them to know what to say nor do I want them to. Damn though really they are afraid to spend time with me!!!
So that leads to the fear of losing more people in my life. Fear of not living up to every one's expectations of my grief. I can't!!! I can NOT do it! I used to hate the word can't till now. Because I know my grief and fears and guilt make it so I can't do certain things.
The fear of really never being normal again is terrifying. I know I will never be the same, but what if I can not ever function like a normal person.
I have a fear of having more children or the ones I have developing a heart defect. I fear that my SVT will not get better. What am I to do? Fear holding me, strangling me, suffocating who I am.
I fear that I will remain to feel lost among the many. I fear that I will never have the relationship with God that I used to. I do not pray the way I used to. I no longer talk to God at all if I can help it. It makes me cry to walk into my church! Really are you kidding me? But somehow there are times that I really do feel God just holding me. He has not forgotten me and HE is with me. He cries with me and He knows how I feel. So if I feel him and I have seen him why can I not just run to him now?
Ethin's name is still the sweetest sound to my ears! Never is there a time that his name does not make me smile. His name is such a sweet reminder of a warrior that I met. I held an angel. I have kissed the face God. I know that I will hold him again. Not for many years I am sure, but I know I will and until then I know God is holding him and Ethin is happy. Yet I am afraid. I live in fear an all consuming fear that builds in me and spreads like fire.
Fear= False Evidence Appearing Real..........So maybe I can try to have this instead Full Assurance In The Heart. Long shot but I am praying I can do it!

Please continue to pray for the following....
Andrew and his appointment this week, Heart Ball, My family, Leslie and her boys, The Deloreys

Blessings,

Secret Garden

Where are you at in your grief. Has it been years or just weeks since you lost your baby. How are you feeling. How do you hope you will feel in the future. Have you found any peace at all?

It has been just over 4 months since I entered this world known as grief. 4 months ago I became the parent who left the hospital without a baby in her arms. 4 months ago I buried my CHD Warrior. 4 months ago the world lost a warrior and Heaven gained an Angel.
I feel like life is so unfair. I still feel a great deal of guilt and anger. However I am slowly feeling God's arms hold me again. I am also feeling more at peace with Ethin being gone. This does not mean I am all better it just means I am feeling again. Something I would much rather not do. I hope that is not wrong, but not dealing with it is so much easier than facing the treacherous pain of it all.
In the future I hope that when I think of Ethin it will not bring me straight to tears. I hope that I can look back on all of this and know that I did the best I could for him and the J Triplets. Somehow I worry about them in all this and hope that in the future they will be OK too and able to see how amazing their brother really is.
Finding peace is a hard thing in this, but with God on my side I am sure that I will. I hope that I will. I have Faith that God will hold me up. He has this far. My boy is happy and he is OK I know that. He is healthy and I know that. So knowing all that does that qualify as peace or just knowledge of Heaven?
Blessings,
Jessica

Sorry and still sick!

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.

Well this week has been rough. I was so sick last week and then I went to the doctor today and I now have bronchitis. I can not win for losing!! I also have had a very rapid heart rate the last few weeks like it ranges from 94-170!!! I have SVT, but lately it is getting much worse. So I also had an EKG done today! It is a good fast rhythm. So I go back in a month to have another EKG and get referred to a cardiologist and possibly start beta blockers. No bueno!!!

On a bright note the weather in Michigan has been amazing!! Not sure how it is that MI weather always seems to just be weird! Needless to say we are all enjoying the weather here is a picture of the J Triplets from this weekend outside in the leaves with our dog Inge. Yes our dog is named after the Detroit Tigers 3rd basemen!

Yep there they are Jessa, Jayde, Jonathin, and Inge. Funny that the only one looking at the camera is our dog!! Oh well I still love the picture!

Well counseling is still going. Not sure all the time that I find it to be much help, but I am doing it. So he diagnosed me with PTSD (Post Traumatic Stress Disorder). Well I think I figured that out all on my own! However I guess it is always nice to hear it from a professional that you have a problem! All kidding aside I knew I had it years ago. However going through what I did with Ethin has intensified to the point where it is at now. Sometimes it is bad and other times it is not good, but I am trying to learn to live with it.

So on Monday Ethin would have been 10 months old! I can not believe that he would have been 10 months old or that it was 10 months ago he came blazing intot he world. 10 months ago I heard his sweet cry not knowing that I would never again hear it like that again. 10 months ago I became a heart mom not knowing that it would change my life the way it did. 10 months ago I had no idea that my heart could hurt the way it does. 10 months ago I had no idea that I was looking at the face of God. Looking back now I see many things that I did not know till now. I love you Ethin Forever you are MY Warrior and Angel!

Well so I have discovered this healing thing and grieving thing not so easy! I am starting to find some strength in God though. Just some food for thought that was shared with me. In the Bible when it says God will not give you more than you can handle he was speaking of Temptation not Grief! I am so sick of people telling me this and someone else shared this with me. To often we take the words of the Bible and put them out of context. This is written in Corinthians and if you read then you know that it's speaking of temptation.

Also I have come to realize that God is so patient with me. More patient than so many others. He never asks me not to talk about Ethin or to pretend that it did not happen. However there are people who worry when they are with me because they do not know how to react. So I am slowly going back into my shell it was so much safer there.

Also I want to apologize if it hurt people to read my last post. I know that it is not easy to read about my recollection with Ethin however it is something that from time to time I think about and when I write I write about what is on my mind. I wish I never had to experience that day he died. But I did and so it is something that I shared. I love you all so much and would never want to hurt any of you.

Also I got some more blankets today in the mail 20 to be exact! And a local TV station is going to cover the Heart Ball!!! I encourage you to use the link on the right to hear about it and to visit the Cuddles from the Heart Blog site! Woot Woot!!!

I also wrote a poem the other day and thought I would share it since I have not shared one in a while.

Life comes and life it goes

Tears fall but nobody knows

The hurt that builds deep inside

From all the painful tears I've cried

Walls put up to keep people out

Walls to quiet my screaming shout

Inside I'm dying the blood runs thick

Looking in the mirror makes me sick

The person I've become is pure hell

Crawling back inside my battered shell

Who to trust seems to be the question

I have a huge problem with perception

So in I go and out you stay

I'm content living life at bay

Judge me they all do

Easy to judge when you have no clue

I carry life really well

I look happy from what you can tell

Looks they can be pretty decieving

But it's the reason most are leaving

I have nothing more to give

Please let it go this is my life to live

Live it I will making this Stand

Every now and then though I may need a hand.

Jessica Twigg 11/6/09

Alright I also have a few prayer requests

Andrew for his upcoming appointment

My kids as we are adjusting still

The Heart Ball

The Delorey's as Rick is still in ICU

Ethan Bilpos family as they are having a rough week it would have been his 9th birthday this week

Ethin's godmother Mandy has been sick all week

Blessings and Love,

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,

My Time With God

I am constantly starting my blog with the Heart Ball and the Cuddles from the Heart. Well today on this blog I am just going to encourage you for the Heart Ball click the link for it on the right side of the screen and for the Cuddles From the Heart please read an older post. I am doing this, because I just feel the need to write. With that some of this may seem random and I am sorry for that.
I suppose I will start with some good news.....On October 26, 2009 my baby sister gave birth to a healthy baby boy named Landon James. He was 19in long and weighed a whopping 9lbs 3oz. He ended being born C-Section as he was breech, but my sister Alivia and Landon are both doing great. I am a real aunt!!!!
So I talked on the phone with my sister tonight and I heard Landon cry. I had to let her go, because it was just to much. I want to go see them when I am not sick which I will get to that, but I am worried. I have been around babies and all, but it is never an easy task for me. I wish I felt normal again.
I was at the doctor today and I tested positive for strep throat. Then last night I started running high fevers and was just blah and felt so much worse. So off to the ER I went to discover I have pneumonia again, Strep throat, a viral infection in my body, and a UTI. God these are lemons and they are all yours!!! I have a healer on my side I will kick this!
Also Halloween came and went and I did not get to dress up my punk for his first Halloween. It was a rather painful thing. I did make him a pumpkin, but I did not get to celebrate the fun of Halloween with him. I thought about what it would have been like and I am sure I would have dressed up as a hot pepper! LOL Although I could not celebrate his first Halloween I did get to give him a pumpkin. So this silly holiday was hard I have to be honest I am not looking forward to Thanksgiving or to Christmas.
Now in bringing that up I am really seriously not wanting these holidays to come. I am worried about the emotions it will drag up for me. I keep thinking that I need to make Ethin a part of our traditions. So I am keeping my eyes peeled for something special to put on our Christmas tree which goes up on Thanksgiving. I need to have a way to have him be a part of it.
Well so holidays are fast approaching and I am dreading it. I more so lately miss him tremendously and am afraid to really blog about it, because I just can not take anymore negative judgment passed on me for how I feel. I have tried to focus my blogs lately on everything but how I am really feeling.....This is not working for me. I miss Ethin and I just keep imagining how different everything would be if he was still here. My hopes and dreams all changed on June 27. However I want to share how I think things would be....
Ethin would have came home in July. The J Triplets and I and Ethin would have taken our vacation to SD, IA, and SC. We would have experienced some things knowing another surgery was creeping up. Ethin would have had his Heart Cath September 28th and would have had his Hemi-Fontan again on October 1. Once he was recovered we would have come home again and been normal. We would have had a real family portrait taken. His CHD quilt would not have been adjusted. The original one was shown in the last blog however this is what it looks like now notice his Angel date has been added.So yes life would be so different. However I also think that I am really starting to see some purpose in all of this. The Heart Ball is going forward. Letters of Hope for Broken Hearts boomed after Ethin went to Heaven. My email was flooded with letters from so many people. The Cuddles from the HEart Program in MI is going so well!!!! Ethin going to be with God is the most painful thing I have ever been through, but I see how God used Ethin and still uses Ethin everyday!
Yes I am slowly finding my faith again. Many know that this has been a struffle for me since Ethin passed away. It has also been a very painful thing for me to go through as I sincerely felt like I lost my son and God. This is so untrue. I have Ethin in me and everything I do. I see Ethin's smile when Jonathin smiles as Ethin had his brothers smile. And I have a God that loves me and is still helping me do this. God has carried me this far but I was so angry that I simply refused to believe that. The next stuff I am about to write may be unbelivable to some, but it is the best recollection I have and I need to share it....
On September 28 I was hospitalized. My respitory drive was depleted and I was intubated. I was breathing by a machine. My friends all say they were there with me talking to me and holding my hand, but I was not there with them I was somewhere else.
I was in a very beautiful open field that smelled of all the wonderful things in life that I love. There was the smell of my grndmas homemade cookies, my grandfathers cologne, and the breeze rushed on my face and I smelled Ethin. I looked all across the field and there he was by a tree on a path. I could see he was being held and I as I approached I could hear Ethin communicating to me. He really was in the arms of God.
Now I can tell you that there really is no way to describe where I was or what I was seeing. I do not have the words that would describe all that it was and the amazingness of it. I can tell you that God's face was the most beautiful face I have ever layed my eyes upon. Ethin was pink and healthy looking and he was smiling. He communicated but not with loud words. And God spoke too. Ethin is Happy and he plays. Ethin loves me and knows that I love him. He knows that I am needed here. His wisdom was very much beyond my belief. My communcation with Ethin was everything I needed it to be. I told him how sorry I was and that I loved him and I missed him. I cried and I got to touch him and kiss his head.
My conversation with God however was much more painful than the communication I had with Ethin. The first thing I said to God was what did I do wrong? He simply said nothing. He told me He loved me and i did nothing wrong. He told me that He has cried many times with me and for me. That I would get through this and He would not just let me drown it. Somehow the words I wanted to say never had to be said God knew. And he spoke from that knowing. He knows that I am hurting and he hurts too. I did nothing wrong. He understands that I am angry and he is not mad at me for that. He spoke to me with such an understanding of everything that I felt.
God showed me Jessa, Jonathin, and Jayde. He explained that they needed me, but he also told me that I had to decide. I looked at Ethin I told him I loved him, that I was proud of him, I miss him so very much, but I had to stay with his sisters and brother. Ethin smiled he let me know it was OK and that he was safe. I kissed Ethin on the cheek and I looked at God and told him I wanted to live that I needed to live. He said yes and I was awake with doctors and nurses standing over my bed telling me to calm down they would take out the tube.
They did take the tube out and a few hours later when I woke up I felt a lot of things. I felt at peace, but I also felt very empty. I felt very empty coming back here. This Earth is just nothing in comparrisson to where I was. However I felt at peace knowing Ethin is alright. I also felt good that I finally got to say goodbye. I felt at peace knowing God loves me and I did nothing wrong.
This is a very awkward thing to share and I am writing it with tears in my yes, but I needed to just write it down. I know it sounds crazy, but it is the most real thing I have ever experienced. And it has allowed me to slowly fill my life back up with God. With Faith and Hope. I have no idea why all this happened to me, but I do know that God is not far from us ever. He never did leave me. And I honestly feel he gave me that time knowing that I needed it.
After sharing this there really is nothing more to say. PLease keep the following in your prayers... My sister and Landon as Alivia recovers from her c-section and Landon to stay healthy in the midst of all the sickness, My pastors one in Israel and both for my ones dad as he continues to fight the cancer he has, My friend Rick Delorey who is now out of ICU but still fighting his cancer and clots in his lungs, Leslie and her boys, Mira a heart baby that it looks like she will be going on the transplant list, the Heart Ball, and my kids and I as we continue to grieve for Ethin.
Blessings,