I couldn't read your post and not reply. We have been in similar shoes, and while dh and I don't have that conversation frequently, a friend (whose daughter has a similar condition to dd) and I do talk about this at length. Her daughter is in a palliative care program, which means that they can continue to pursue treatment options and all life-saving measures that they choose, but they have someone with them to support them in making quality of life decisions as well. She has run into an amazing amount of resistance, even from docs, who just cannot seem to understand the enormous toll that this takes on a family, both physically and emotionally.
It does feel like a war zone, like there's no way to plan or figure it out and in the end, none of the choices are ones we want to make.
Continuing prayers for you and your family . . . may you find strength and peace.
My heart aches for you. That you've spent so much time processing this - that you've HAD to is so unfair.
I can't answer your questions about knowing when it's time to stop. But I trust YOU to know as their mama.
There's no judgment here. And Goddess help anyone who tries!!!
I've got tears in my eyes. I want to support you--it is so unfair that life is this way--that you have to face these thoughts and decisions. I'm sorry. Those pictures are heartbreaking. He's beautiful.
Praying for James, you and the rest of your family.
Oh Elisabeth, I can't even begin to fathom what you are dealing with. My heart aches for you that you are even having to visit these questions. I admire your courage in facing the tough questions head-on and being honest enough to share your feelings, good and bad. I continue to pray for James and your family.
Oh my, mama. Your family will certainly be in my prayers. You asked outloud how many more times you will have to bring your child(ren) back from the brink. I think that we, as humans, have developed marvelous technology to save our human bodies from most terrible circumstances, and that these measures certainly have their time and place. You've seen this with your own eyes. But, I also firmly believe that we, as humans, do not hold the decision to live or die in our hands; but that our Father in Heaven does. If these boys, and especially little James, is meant to be here with us, then God will let him be here, somehow - someway. I know it seems that it has become your choice, whether to keep him here in grave circumstance or not, but please know that God is ultimately in control of these things - He does not hold you responsible for such a monumental decision. He gave us all life, and He decides when it's time for us to go home. I guess the adage, 'Let go and Let God' is appropriate here, and these words are much easier said than done, but in letting go sometimes we find freedom and greater peace. I have no idea of the depth of your pain, as I have fortunately not walked in your shoes, but I can only imagine what struggles you and your husband face. Your son is a beautiful child, and always remember that we have not only been blessed with these sweet souls in this lifetime, but we have an eternity to share with them in Heaven...always their mommy, always holding them in our hearts, and forever to share our love. God Bless you and your family - and may your burdens be graciously lifted. Remember that God has been know to work miracles!!
Toni, wife, mom of 4 beautiful children, RN
No judgment here, ROM. I've faced a similar decision myself.
|When can we say "this is enough."?
I don't know why, but I think you will know. I agree that your situation is comparable to living in a war zone. And you're the one playing defense, all the time.
Those pictures just broke my heart. No child should have to face that, and no mother should either. I hope that when he's asleep he's in paradise, running around playing and eating and having a great time, in some other dimension with no pain or fear.
Like you acknowledged, it's not possible for others to truly advise you on this issue. I cannot imagine anyone knowing better than the two of you what is right for your children- you carried them, you have cared for them. I read your posts and I just feel through them that you are such a good, honest person, it hurts me that you are going through this. The one thing I can say is please don't doubt for one minute that you will make a choice out of selfishness. You have already exhibited superhuman amounts of selflessness. Any normal relief you would feel in the aftermath of that horrible situation would be understandable, normal, and NOT a reflection of a character flaw in yourself, but the feeling of a soldier after a battle. I just hope to God (or whoever) that this is never something you face.
I can't even begin to imagine what it feels like to be in yours or dh's shoes. Over the years I have said silently and out loud to 100's of people that I don't understand how you guys have been able to do all you have. I truly don't. The one thing I have always known is that both of you are are VERY loving,thoughtful,understanding and patient parents. Both of you have given of yourselves 1000 percent since both of the boys were born. What I do know is this, any decisions the two of you make regarding all three of your boys will be made from the heart as well as mind. No one can stand in judgement of those decisions. I love those boys a lot and it would devistate me to have one of them leave us, but I also would hate like hell to see any child suffer. The truth is....that any one of us could be placed in that situation without notice and would have to make that awful decision. Please know that I am going to support any decisions you make now or 60 years from now. I'm so sorry. I wish there was something I could do to make something(anything) better right now.
I dont know what to say but I could not read and not respond. Tears are streaming down my face for you and your family. Prayers for peace in whatever decision you make.
Your son has a beautiful, happy smile.
Everyone else is so much more eloquent than I am so I'll just say - listen to your heart. You are his parents and you know him better than anyone else. Do what you feel is the best for HIM and you won't go wrong.
I will keep all of you in my thoughts.
Thank you for sharing the pictures of James.
You've expressed so eloquently issues I've often thought about, even for my much-less-impaired children, and even for adult members of my family. Quality of life issues are so important to me. I think most of us have known older people who lost so much quality-of-their-life that we ached for their losses. My gmother lived to 103, but the last 5 years she was mostly miserable-- blind, difficulty eating, wheel-chair bound, etc. This after being a bright, vivacious woman. Yet, at least with elders we can rationalize the good lives (hopefully) that they did have, and what they have shared. When the questions swirl about a child-- how confusing it is! I am guessing "the line" or brink is never clear before-hand. I hope it if does ever come to you that you will find a place of peace with your decisions and that all who know and love you will support whatever decisions y'all make.
I hope that this go-round you are just musing the topic and that it won't become relevant in the next week-into-months.
Blessings of health for your family.
I have few words this morning . . . still crying and processing your post. But I just wanted to send you more prayers and positive energy. You WILL make the RIGHT decision when the time comes. You will make it from your heart -- with love and compassion. You WILL do what is best for James when the time comes. I think you are so wise though to be thinking about and discussing these things now, especially with your DH too. You were 'given' James for a reason, YOU are his mother for a reason. You will be his mother until he takes his last breath (whenever that may be) and forever after as well. That will never change. Trust in your instinct and mother-love. I will continue to pray for healing for James and peace and courage for you, Elisabeth.
Oh mama, this is too much to bear. I have also been in a similar situation. You are in my thoughts and prayers. Only the best for your family.
I wish all of us MDC mamas all over who are reading this thread and praying for you could be there in person so you could see us, receive our hugs, and feel the love and support we are sending you, James, and all your family.
I agree 100% with what OMama said so well - no matter what choice you make, whenever you have to make it, will be the right one for James, because you are his mother, and you will act out of the great love you hold for him. Just looking at his pictures, it is so clear that despite the struggles he has, he is a happy, loved and loving child. Thank you for sharing them.
I am so sorry you are in this terrible place. But you are not alone.
i am so sorry for you and your family, that this is happening...
we, too, have been dealing with "life threatening stuff" with our twin girl, charlotte and her seizure disorder and i have felt all of the things you wrote about. she tanked, again, just last week in the ER, but is ok now. it all sucks and then there is the guilt too. don't be too hard on yourself! you sound like a healthy, amazing, strong, caring mother!
sending hugs and prayers to you and your family
He's a cutie.
: I'm so sorry you have such a troublesome and heartbreaking issue in front of you.
Elisabeth your family and you are in my thoughts and prayers.
You are facing possibly the most difficult, heart wrenching decisions and discussions a parent could ever have to make. My prayers for strength and wisdom. No judgment, as no one here is in your shoes.
Can you talk to the hospital social workers or chaplains (if you're religious) - they can help you talk these things through in a non-judgmental way. That means of course you have to trust them, and I don't know how long that takes to develop.
thinking of you and your beautiful sons today.
I'm glad that you felt safe "here" to share your innermost thoughts and that the mamas here are respectful enough to only support and not judge. I just ache thinking of you and your family. Thank you for sharing the photos of sweet James. Just wishing the best for you and that whatever you decide, that you may feel peace.
Thank you so much for sharing your pictures. They both warmed and broke my heart.
You, your husband, James and your other boys are in my thoughts constantly. I can't even begin to fathom the depths of the agony you must be experiencing to even have to have this discussion, let alone actually having to make that impossible choice. I prayer for your peace.
My thoughts and prayers are with James and your family.
i'm keeping your family in my prayers mama. it sounds like you are such a strong, loving, compassionate mama. james (and your other boys too) is surely lucky to have you.
Much love to you and your family. James is a beautiful little guy - he and your family are in my thoughts
I think your looking at things exactly how you need to right now.
I am so, so sorry. You are most definitely in my thoughts and prayers.