Our family is in the middle of a struggle. We are losing our son to a very rare genetic disorder. Although this is our only child we are struggling with family members and friends who just dont understand how this is affecting my wife and I. This is the time we need them the most but it feels like they just make this experience worse. We are struggling with sooo much, my wife has been living at the bed side for the last nine months, and I have been back and forth from work to the hospital which is 130 mi. away. We run a small business and it has suffered greatly and not sure if we can continue, mounting medical bills ( the insurance company doesn't pay for everything ) and the gutwrenching frustraion of the unknown. I can't even fathum what is about to transpire in our lives, I'm the husband and the father, I'm suposed to be the strong one but I'm not feeling very strong. How do I hold this together and not go down in flames.....????
2006-12-12 14:39:27 · 8 answers · asked by Anonymous in Family & Relationships ➔ Family
Courage, altough you are already courageous by admiting that it feel to much for you...
Tell every body that you are not available right now. If they want to help, ask them to take care of your shop sometime to time or take care of your house. For the bills they will always come, you have to choose worry about them now and not be able to be with your wife and son or worry about them later and be able to consolidate them?
Do what you are doing best ..support your wife...You are strong even do i bet sometime you dont want to be strong.
All our prayers is with you.
2006-12-12 14:51:45 · answer #1 · answered by Anonymous · 0⤊ 0⤋
I am so sorry that you and your family are suffering this way......I also have two children who have a rare genetic disorder, and will pass as young people as well...so I know your heartache. There is no good answer to your question...as I have struggled with how I will face this when our time comes...we will have to go threw this twice. The only advise that I can give you is to take one day at a time....cherish each hour, minute and second ...do not think or even try to be strong, that is impossible as you have a heart that is being broken. Cry, love , and hold your family, and find things to smile about as well, take time to talk about happier times and share those memories. Your friends and family can not understand, as they may try, but it is impossible as they have not raised this child with all of the struggles that you have had. I wonder if you could enlist some of your friends and family to help you with your buisiness so that you can spend more time with your wife and child? Even one day a week would make a huge difference I am sure? You and your family will be in my thoughts and prayers.
2006-12-12 14:52:07 · answer #2 · answered by catywhumpass 5 · 0⤊ 0⤋
I am so sorry for you and your family. I cannot fathom how it would feel to be in your position. My heart goes out to you. I think very few (only those whom have suffered the loss of a child) would be able to give you any valuable advice or comfort at this time of your life. Perhaps the hospital can provide you with a support group for families dealing with terminal illness. Just talking may help with your burden. My prayers are with you and your wife. Try and be strong even though you may not be able. Do not lose faith.
2006-12-12 14:50:15 · answer #3 · answered by chcknbizkit 2 · 0⤊ 0⤋
I have not had this experience thank all the gods and I can only imagine what you are going through...I am full of compassion for your plight.
But when something like this happens, other people can act very strangely. They do not know what to do or say and they are afraid too. They cannot know what you are going through and if they can imagine, it is so terrifying they might just try to ignore it.
Like others say, it may give you some comfort and some ways to deal with what you are going through to talk to others who are going through the same thing...you need a lot of support and if your family members are not able to give it to you, there are lots of people out there who can...
Talk to your doctor about local support groups...
I am sorry if this sounds like Dear Abby...I hope you do this .... it is a long road but other people have walked it before and maybe can help you
Please contact me if you want to talk...i dont usually do this but use my email ...kjssusa2@yahoo.com
2006-12-12 15:36:46 · answer #4 · answered by kat 2 · 0⤊ 0⤋
I am so sorry. I think you should ask the family member who can help to take over the family business for right now to keep it going and then go go be with your wife and child. You are going through to much right now. Your wife and you will find the strength within each other to help you get through this, but you need to be by your child right now, for you and her and him. Make that call out to family and friends about what you need and how you are feeling. I don't know what state you are in, but check into state insurance and see if this could easy you a little. Once again, I am so sorry for what you are going through.
2006-12-12 14:48:40 · answer #5 · answered by cheoli 4 · 0⤊ 0⤋
Consider getting help from the family one day a week to spend that time with your wife and son. Visit the chapel at the hospital.. Just go there and sit. You need do nothing. Open your heart and you will find solace. God does not give us more than we can handle. Hold on to your family and stay together as much as possible.
God has need of your son and is calling him to a greater service. Leaving you to find heavenly peace at last will be a relief to you and your wife knowing he will suffer no more. We are all only on this earth to serve as God sees fit. We are not owned nor do we own our lives. Our souls are freed of their earthly bounds when we rise up to meet the face of God.
Faith is the strongest alli we all have.
My heart goes out to you and your wife.
2006-12-12 15:06:05 · answer #6 · answered by Patricia D 6 · 0⤊ 0⤋
You should consider talking to other families who have a child with the same genetic disorder as yours. You may find another husband/father who has the same struggles as you. There may not be solutions, but there can be comfort in knowing that someone else knows exactly how you feel.
2006-12-12 14:43:30 · answer #7 · answered by Anonymous · 0⤊ 0⤋
First get some profesional advice.And get to know other people who went through this.
You can also try to help other children around the world who needs help..It helps to know you can help other children to grow up.You dont need to do much,maybe you couldnt help your child but if someone could have helped you would have been so grateful..try to be like that someone to children in need.
2006-12-12 14:46:06 · answer #8 · answered by Kaushall 2 · 0⤊ 0⤋