Mamma, what is like to have a dad?

[brooksea]

Husband wants to go to bed and it's time for son to go to bed. Sigh.. How to handle both? Don't know. Try to.

I tell my son I have to get daddy in bed and I'll be right back. My son is in bed but stops me and asks, "Mamma, what's it like to have a dad?" "When can I go fishin'? Can't I go with Uncle X?" I tried to explain to him the situation - "Uncle X doesn't even take his own son fishing and you just don't remember all the times daddy has taken you places and done stuff with you, because that is how our minds work when we are kids." I told him I would get all the pictures and videos for him to see (and he's seen some before). I told him I would ask PaPaw to take him fishing, again. He didn't like that! He broke down crying, "I don't want some old man taking me fishin! I hate dad!"

I was so ANGRY! He started boohooing and I mean letting it all out. I told him we don't know how much longer daddy will be here! He asked if it would be days or months or what. Then he just sobbed and sobbed, saying I don't want him to leave.

God help me! He's 11. ALS F U for doing this to our son!

 

[pepsiman]

Sorry CJ. Unfortunately, I know right where you're coming from.....

 

[susanf]

I'm sorry Brooke. Nina is 11 too. She is my voice when we go out. Yesterday she ordered Starbucks drive through. Today she had to tell the nurse she needed a Tetanus shot because by the afternoon my voice is nil. Eleven is such a tough age. Raging hormones, middle school, fitting in. To have a parent with what we have just adds to the pressure. It causes them to deal with adult issues, something they should not have to do at this age.
I don't have any answers but wanted you to know I really feel for you all.
Does he have any friends with parents you feel comfortable with? Maybe they can take him on outings with them.
Love,
Susan

 

[susanf]

I've been moderated! I think this is my first!

 

[brooksea]

He's already been to counseling and it may have helped while he was going...but he can't just keep going (insurance).

Well, Dick, you got any suggestions? This just just gets worse and worse for my son!

Thanks for checking in on us, by the way!

 

[notgivnup]

Oh Brooksea,
My heart is breaking for you and your dear son, as I sit hear wollowing in self pity I find now I am weeping for you and the heartbreak you have endured. All I can say is I am so sorry for this dreadful disease being part of anyone's life. My sincere prayers to the Father go up for us all. ((BIG HUG))) May you find peace and joy once more.

 

[Katie C]

CJ... talk to his therapist and explain the insurance situation. Many therapists have sliding scale fees for situations like yours. In the meantime, hard as it is, he needs to know that it's safe to cry to his mom.

 

[Jason's Dream]

Hon, I am soo sorry to hear this. I don't have any words of wisdom, advice.. just know I am thinking about you hon. *big big hugs* And.. you are right, .. ALS SUCKS!

 

[laurel]

CJ it is heart breaking to glimpse into what you and your family are going through. I do believe though that you are raising a fine son who will turn into a good man despite all of the pain and anguish he is experiencing now. He has you and you project what a fine person you are in everything you write here--you are honest and caring through and through. It is beyond bearable now, but he has two good parents who love him and he will be like you and his dad.
Laurel

 

[Miss]

Luckily, one of my son's friends has a dad that has "adopted" Daniel for all of the father son activities. I will say that my husband encourages Daniel to reach out to him, too. I know that helps Daniel deal with this. Does your son have a friend with a really great dad? Maybe you could talk to him and get him to "adopt" your son.

 

[Danijela]

This is just so tough. And something I too fear very much (my son is only 18 months but he can already tell the difference between what daddy can do and what other people can do).

As somebody who grew up in an 'unconventional' family (by which I mean no Sunday lunches, family get togethers, and similar 'normal' stuff) I remember craving ordinariness. But as I hit my teenage years I suddenly became proud of my little 'difference', the fact that my parents did not buy into the entire marriage and family convention, that they encouraged me to do so many various things, never put me under any pressure and gave me so much freedom (and no, I did not go off the rails).

Having a parent with a terminal illness is of course different, but I still believe children can (and many will) find a way of coping and getting through it. It is 'the norm' that sidetracks them sometimes, and they blame the parent, when really they like the parent very much, and just the way they are.

Dani

 

[epkennedy]

CJ- HUGS! Heart wrenching to see the kiddos break down, I know. But it's so awesome he was able to express himself. Its sooooo important that that happens. In the morning give him a huge hug and tell him it's safe and important to let it all out. For sure check re: sliding scale. Also, talk to guidance counselor or call hospitals to find out about grieving support groups. These are free and generally open to the public. HUGS

 

[maryhahnward]

CJ

Maybe its good that he cried, he is grieving and so are you. You need to grieve together and it can take a long time. There are no simple answers other than to let him say what he needs to, be angry when he needs to and cry. At least he feels comfortable to doing all of this in your presence and he is not holding it inside.

I agree with you 100% this disease is awful. It is horrid really for everyone it truly touches.

There are lots of suggestions people can make to help but no easy solutions for grieving. Have you considered Big Brothers/Big Sisters? It might work because it would be something special, many children or really most when I think about it, will never have heard of anyone having one in this capacity.

Mary

 

[epkennedy]

Mary- great suggestion re: big brothers/ big sisters.

 

[joni51]

CJ wow it has to be so hard to be pulled both ways..Look how strong you are! You are a survivor, and your son will be too! I hate that all of the families with Als, and small kids, what it does to these little ones, let alone us big ones! I think what mary suggested is a great idea! Hugs to you sweetie!