Heart Ball and advice after a comment

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 dinner will be served with one glass of wine. There will be other 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

Wow God has been amazing through the process of setting this up. I feel so blessed that Ethin's first Birthday will be a huge celebration doing what he did best....TOUCH THE LIVES of OTHERS!!! I am excited to see if this will turn out the way I think it will. My goal is to sell 100 tickets but I have enough room to seat many more than that!!! Lets see how this goes!!!
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 30 so we only need about another 270. I think that this is very doable. 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!!! If that is not enough to motivate you October 24th is National Make a Difference Day and you can make the difference by mailing me a blanket for the kids at the hospital I need them for Newborn to teens although I am sure in the area of older kids I will fall short. Thanks ahead of time.
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.

Alright so in doing this carepage and blog I have come to see many things. People care and some people will be sure to point out the negatives in this journey. There are good things yes, but their are some things that are sad and hard but this is my journey this is the life I am living and yes it is good that I have Jessa, Jonathin, and Jayde but it is hard that I do not have Ethin. I have not asked anyone to follow this tragic journey. I love that you have chosen to and it makes a difference to know you care, but what I can not have is negative comments like this one
Posted 1 day ago
by Name Removed
One day you will look back in sorrow for losing your other children while in your fog. They are there now, Ethin is not, so please take care of yourself for them and for Ethin. Imagine him looking down on you and seeing you this way and his brother and sisters suffering.
Live for Ethin, don't die along with him. It is too painful to read the blog now and you may be driving others away. Just a thought

I can see where this comment came from but I can also see where this comment is one that maybe should have not been left privately let alone in a public way. I am in a fog one that no one would understand unless they have shared this fog and I hope that is not the case I do not want you to know because it hurts. I know Ethin is not here and I do not need that to be stated I know that the J Triplets are, but it is not as easy as you may think it is. It is hard to have something so precious ripped away from you. I clearly am doing the best I can I coach my kids and I love them very much my last blog the one this comment was left on was all about them! I do not need anyone to point out that our family is suffering we really are doing the best we can and with God's Grace we have come this far mind you it has not even been 4 months! Also I do not need to be reminded how disappointed Ethin is in me and my foggy suffering. I am sorry I can not just wake up and not be sad anymore. I also am sorry my kids hurt and miss their brother too I wish I could take all that pain away from them. I understand that it may be hard to read, and I am sorry, but at least I am honest with myself and all of you. If you can no longer read I understand that the whole journey was not an easy one to read. From start to now it has been rocky and never easy to live. I live it I have no choice, I write it as a way to let myself feel and to allow myself to deal with it and open up I choose to do that, Readers read as a choice. It was not my choice to have to go through this it is however every ones choice to follow. Again I thank you for following and encouraging. I thank you for the concern and the many prayers. I thank you for loving me and supporting me. But remember that your words can hurt just as much as they give me strength, courage, and hope. Everyone's comments 99.9% of the time give me a sense of love and comfort. Also I thought I might share this. It was sent to me by another Heart Mom a week ago and I think it is a good thing to share with all of you. Thank you Stephanie for sending this to me to share.....

DO: accept the simple fact that it is not possible for you to say things that will make the bereaved parent feel better. This acceptance will enable you to stop when you become tempted to utter clichés that you have heard all of your life that are intended to comfort, but in reality they don't accomplish this. Do know that when you make the initial call, the bereaved parent does not expect you to be able to take their hurt away, or to fully understand the depth of their despair and pain.

DON'T: say "I know how you feel" unless you, yourself, have experienced the loss of a child. Though it is possible for you to empathize with them, the death of their child cannot be compared to the loss of your parents, brother, sister, uncle, aunt, grandfather, grandmother or dog. This is not to say you haven't experienced pain with these losses, but they are different losses. Bereaved parents have trouble accepting "I know how you feel" from anyone other than
another bereaved parent.

DO: feel free to touch them, to hug and cry with them if these expressions are appropriate to your relationship with the parent. Tell them that you care about their pain and that you are sorry their child died. A simple hug can say more than a thousand words.

DON'T: think you are complimenting them by telling them "how well" they're doing a few months down the road. They're not doing well. Their child has died and inside they feel they are dying too. You would feel the same if it were your child. You may feel more comfortable dealing with them if they're "doing well", but trying to rush them through the grief process doesn't work and it angers them to sense that you don't understand their pain, the length and depth
of it, and are expecting more from them then they're capable of early in their grief.

DO: tell them that you don't understand the WHY of it either. Those "Why's" especially the unanswerable ones, are difficult for many parents to deal with. They need to be able to ask WHY, and to have time to accept there might never be an answer.

DON'T: impose "shoulds" or "should nots". There are no rules and regulations, nor are there right and wrong ways to grieve. There is your way and my way, and though they may be totally different, neither is wrong. Society, over the years has tried to impose its own rules, rules often drawn to make it easier for society to cope with the threat of someone else's loss. You may think you know exactly how you would react if your child should die, but you would
be amazed to find that the rules that once seemed so appropriate no longer apply. There are as many ways of expressing grief as there are people expressing it..

DO: mention their child by name. It is comforting for bereaved parents to know that others remember their child, too. Some people avoid mentioning the child's name for fear it will remind the parent of their loss. For a long time the parents can think of nothing but their loss, so that shouldn't be a worry for you. If tears come, then they needed to cry, and the tears may be tears of gratitude that you have given them the opportunity to share their child with you. If you have a good memory of their child, share it. It will make their day. A parent's greatest fear is that no one will remember their child, and if the child's name is never mentioned, or the subject avoided, it is a natural conclusion. Why should you , whose children are alive, have the right to reminisce about the past, while those, whose child is dead, are denied that right? Memories are all that parents have left and those memories did not die with their child.

DON'T: turn away if you unexpectedly come upon the parents. Most parents are aware you have chosen not to "see" them. Can you imagine going to the grocery store, as painful as that already is, and having several people pretend they don't see you? Can you imagine how distressing this would be? Why not, instead, approach them
openly, tell them that you have been thinking of them and ask them how they are doing. Acknowledge their loss, don't pretend it didn't happen

DO: reassure the parents they did everything they could for their child, both emotionally and medically. Many feel failure and guilt because they weren't able to keep their child from harm. Small omissions or commissions loom large. It is important that you not add to these feelings of guilt by suggesting that the care given the child either at home, at the hospital or wherever, was inadequate. This only adds to their burden.

DON'T: suggest to younger parents "but you can have other children". They may or may not be ale to have another child, but it is not appropriate for you offer comfort with the thought of another child. You see, they wanted this child

DO: show your concern, do be there over the months to come on a regular basis. Allow them to tell you how they feel, and listen when they tell you. Don't tell them what you think they should be feeling. Leave them free to express anger and guilt. If you know a certain time of day is particularly difficult, do try to plan your visits to coincide with that time. Do be patient. Allow them to grieve in their own way and at their own pace. Avoid judgments and try to be accepting of the different ways in which grief can be manifested. Remember, it is better to touch and cry than to stand back and offer clichés. When all is said and done, you will be remembered not only for having been there when the need was great, but also for having known the right thing to say and do.

DON'T: remind them that they should be grateful they have other children. Children are not interchangeable. Each has his own special place, and no one child can fill the void left by another's death. You need to be aware that for a while, the parents sometimes lose their ability to nurture their surviving children. You can help by giving these children a little extra attention until life at home is on a more even keel. Siblings often feel very much alone and
bewildered when the structure of their family has fallen apart.

DO: allow the grieving parent to express their feelings, if they have that need. The pain involved in letting go, the anger, frustration and guilt are all a part of the normal grieving process, leaving them empty and without purpose for a long time. Allow them to tell you how they feel. Don't tell them how you think they should feel. They just need you to listen. You aren't expected to be able to take away the hurt or to have all the answers. Talking and crying about the loss are the first steps toward recovery for some. After they have cried and talked about their loss enough, they are then free to go on to the next step in the recovery process. Your willingness to listen helps them, and isn't that your ultimate goal? Encourage them to be patient with themselves when they grow discouraged with their slow progress.

DON'T: try to find something positive about their child's death. If there is anything positive about the death, the parents will have to find it in their own time. If you are tempted to point out such things as "closer family ties," or their child is "in a better place", or "it will make the marriage stronger", don't do it. Parents hear this time and time again. It doesn't help, and instead may cause bitterness. Many marriages do not make it through the loss of a child and closer family ties are not always the outcome.

DO: know that it is difficult for the newly bereaved to reach out to you for help. Grieving is emotionally and physically draining. Just getting through the day might take more energy then they have. Let the family know you are available to be with them if it would be comforting. Conversely, when you invite the parents over, be sure to give a specific date, instead of leaving the initiative up to them. Being at ease in large crowds may take time, so plan only small
gatherings, leaving them free to leave whenever the moment is right for them. If the first invitation is refused, offer another at a specific date later on. Being at parties and with other people is not going to take their mind off their loss and make them have a good time. The thought of it may make them feel guilty and be an affront to them.

DON'T: rush in and remove their child's belongings, or change their room unless the parent specifically asks you to. It takes some parents many months before they are ready to change anything. It is their right to decide what they want to keep and what they would like to share with others. You may feel they will recover faster if they face this sad task immediately, but that is not necessarily the case. Leave them alone until the time is right for them, and then
help them only if they ask you to. Don't make it an issue


Thank you for taking the time to read this and I really do appreciate all of you have been so supportive.

Please continue to pray for these requests

Lindsay is back in the hospital you can link to her blog from our page on the right hand side under Heart family it says Lindsay.
Gary Meyering is my pastors dad and he has cancer continue to pray for him also my other pastor is in Isreal pray for a safe trip for him
Dalton's family as they are grieving for him
My friend Leslie and her two boys as they are going through a lot and her continued health problems with the lesions on her brain and the clot on her brain behind her eye

Thank you, Blessings and Heart Hugs,