This is my first post, as I found this website about a month ago and I can't tell you how much comfort it's given to me.  I've also shared it with my entire family. 

My brother's only child, Daniel was born with a degenerative neuromuscular disease called spinal muscular atrophy.  Daniel is two years old now and cannot sit upright or even roll over.  Daniel's diagnosis has absolutely devastated my family. My parents have become angry and depressed - fundamentally changed.

I've been struggling with my faith and what I believe.  I don't know how to pray for this baby.  I question whether I should ask for a (an unlikely) miracle that would make him well or for him to be taken to end the suffering to him and to the family.  There are days when I have a very difficult time coming to terms with what's happened in my family.  I feel extremely angry and often find myself thinking that all of this is just "not fair."

Although Daniel's prognosis is not good, no one knows what the future is.  In the meantime, my beloved brother is not the person he used to be.  He and his wife maintain the 24/7 job of keeping Daniel comfortable and happy.  I'm very worried for both my brother and sister-in-law.  I feel extremely guilty for having two healthy children while my brother could not have one.  I wish that there was something that I could do.

In October, my brother and his family relocated from one side of the country to the other for a new job and is now in the same state as I am, less than an hour away.  The universe does work in mysterious ways!  Our proximity has allowed me to me and my children to get to know Daniel and to love him deeply.  We got together on Halloween and I could tell that he was deeply disturbed seeing my youngest in her costume while his child was lying flat and hooked up to breathing apparatus.  He broke down and told me how he wished Daniel was normal.  This broke my heart, as there's nothing to say or do to comfort him.

Thanks to all who post on here, as it reminds me that me and my family are not the only ones who are suffering in this world.  In fact, we are far, far from it. 

Here's a link to the website that was set up by my sister-in-law for Daniel:  Danielshope.com

May all who suffer be blessed with comfort and come to understand its purpose.

A M

"I do not intend to tiptoe through life only to arrive safely at death."

Welcome to the forum, Dawn! Thank you for sharing your sad story with us. My heart goes out to you as you struggle with everything involved with Daniel's condition. Some things don't seem fair and certainly can challenge ones faith. What to pray for? You don't have to decide, just ask what is best for him and everyone. God is not likely to take Daniel's condition away but can give you and all the family strength and courage, one day at a time. You are never alone even though it may feel like it.
 
I will light a candle for Daniel, you and all the family. You may want to start a special candle group for him. The instructions are in the top threads.
 
Much love and warm hugs,
Edda

Peace and joy!

Dear Dawn,
I too want to welcome you to this forum.
Your post touched me deep in my heart because I lost my firstborn son due to illness that can not be cured (brain bleeding caused by brain AVM).Yes,you are right it is not fair! But it is difficult to say anything that can help or comfort you.Just want you to know that you are not alone.
I lit a candle for little Daniel and your family in the ALL group.
With regards,
Buba,Goran`s mom

Dear Dawn,
Welcome to the forum. this is indeed a very sad story. I agree with Edda, you don't have to decide what to pray for. I would say something like, "I pray for help for Daniel, of whatever kind is best for him and his family." It is indeed a blessing that you and your brother are now living nearer to each other.
 
I too will light a candle for you all.
 
Blessings, Jude

Love is the only way

Dear Dawn
 
My thoughts are with your nephew Daniel and his loving family right now.
 
You are right life at times like this can feel very unfair.Dawn I am battling
 
with my faith right now and my only way around it is I pray to the people
 
that have gone before me and  I ask them for help.I don't know how else
 
to ask for miracles and sometimes even when I think no one is listening or
 
helping something or some comes my way with help.
 
I hope for a miracle for you all and I guess in many ways Daniel is a
 
miracle as he has bought joy to all of your lives.
 
Take care Dawn as Aunties are very special people they really are.
 
Sandraxxxx
 
 

The greatest thing you'll ever learn is just to love~and be loved in return♥♥  


 

Dear Dawn . . .
I too, would like to welcome you to the forum.
I'm sorry that it is with such sad news and a heavy heart. I can see that the situation with little Daniel is very painful for all of you in the family and that you love him very much . . . you may not be able to see it now but there are gifts within this child's presence in your life. Your love and your family's love can grow deeper through sharing both the hope and the sorrow.
Like the others have said, it might be most wise to pray for what is best for Daniel. It is not up to us to decide what should be. I visited the link you provided . . . he is truly a beautiful child.
I light a candle for this little boy, in my home and here on the forum, for you and for Daniel, and for your family, and pray that you will return and share your journey
with love . . .
sparrow
 

everything counts... ♥

Dear Dawn,
I too visited the link you provided.Daniel is so sweet and beautiful boy,it is so unfair that he is not healthy...and so heartbreaking for his parents ( and all of you ) to watch their own child suffering so much...As Sparrow said it is NOT up to us to decide what should be the best for Daniel , but we can pray for hope and strength for him and his family...

I feel extremely guilty for having two healthy children while my brother could not have one.  I wish that there was something that I could do.

You don't have to feel guilty for having healthy children be happy that it is so.
But you can be of great help for your brother just letting him know that you are always there for him, to talk or just to "hold his hand " and be quiet together...



With love and regards,
Buba,Goran`s mom

Dear Dawn,
Daniel, your brother and your family are in my thoughts and prayers today. I will light a candle for you all. I send you all love and light and pray for energy, strength, upliftment for you all. I am sure that Daniel is here for a reason, and it may be to bring you all together as a family...  Love is a remarkable thing.
love and light
Gina and Jackory

Dawn, my heart goes out to you and your family. I'm gald that you can find some comfort in this forum though as there are so many special people on here that have helped me so very much. Please know that you will be in my thoughts and prayers as well as Daniel and his family. I will light a candle for Daniel, you and your family.