Today My Heart is Heavy

[ValleyMomma]

Today my heart is heavy and I am going through the motions. It's like I'm an actor in a movie. We recently received my husband's diagnosis from the ALS centre. We are both putting on a brave front for the kids. We are both putting on brave fronts for each other.

I am taking the kids out to get pumpkins. Bless their hearts. Eight and nine years old and full of flipping BEANS! One has autism and thinks his big sister is the bees knees! Let's see if I can find some pictures to share later.

Talk to you guys soon... let's see what the pumpkin patch brings.

 

[vickim]

I am so sorry you are having to face this horrible situation. Your feelings are perfectly normal. You have a lot on your plate. It sounds like you are one strong loving wife and mother. You will find your groove and face this challenge head on like all good mothers and wives. We are here to listen any time you need us.

I hope you find some jolly pumpkins. We used to do that when my boys were little. The rule was if you can't carry it, you can't have it. Of course as they got older we ended up with some pretty big jack o lanterns. Very good memories, thanks for reminding me. {{{HUGS}}}.

 

[zoohouse]

Hello, from 1 BC'er to another. I am so sorry that you also have to go through this ordeal. Does the saying "fake it till you make it" mean anything? It is hard enough doing this, with grown kids, so I can't imagine how difficult it would be to have 2 young children. I don't know what your faith is but I will have you all in my prayers. The BC ALS society has an amazing summer program for the kids of an ALS parent. I can't remember the age they need to be, but Tim's 14 year old went to their camp this last summer, and found it a good experience. He actually flew in from Texas to visit his dad, and even though he is an american they paid for his time at the camp. At least you are close to GF Strong, which is an excellent ALS clinic. Tim was blown away with their dedication, and how they treated him, even though he is just in the process of getting his permanent residence in Canada. Their attitude is that ALS knows no boundaries. Happy pumpkin hunting.
Paulette

 

[ValleyMomma]

You know what sucks.. My kids could very well get this disease too. I am a past Caregiver for my Mother In Law. I am now a Current Caregiver for my Husband who knows who else in the family... Holy crap!

And Paulette..I hated GF Strong quite honestly. The way they gave our diagnosis was horrible. The place is so depressing too! Gah! We will probably do physiotherapy someplace a bit more cheery!

 

[Nikki J]

valleymomma, I am so sorry. To go through this once is beyond horrible but the repeated suffering of FALS is a continuing nightmare. I know your fear for the children. I do believe that gene therapy will brings answers for our children so they will not have to face this but until it happens I worry too.

 

[Barbie]

sometimes you have to "fake it 'til you make it"...

Putting on a brave front for the kids I mean. I hope you have someone to talk to where you can let it all out. You can't hold it all in all the time, and eventually you will have to tell the kids and things will get worse. maybe a family therapist who you can talk with and then bring the kids in if they need some help as dad progresses?

I think most people feel the worst right after the diagnosis because lets face it, it is brutal to hear those words for both the Pals and the Cals. as time passes, you will find a new normal and be able to deal better.

 

[patgayle]

So sorry for the diagnosis, wish that there was some miracle something to say or do to take this disease away, but..... Our thoughts and prayers are with you.