Official

[diagnosed2016]

Got official diagnosis today for my husband. As hopeful as I was trying to be, I knew the outcome. I'm just gutted nevertheless. We're completely at the mercy of the path of this disease, I'm so angry that our future is destroyed. I'm so sad for our children. Sad that he won't see them grow up. My husband watched his father die of ALS as a child and it traumatized him; is that the future for my kids? Because we are dealing with FALS, my kids have a 50/50 chance of having the gene- so it's possible that I will lose my entire family, my world, in my lifetime. It's just too awful to think about but I can't stop thinking about it.

 

[Atsugi]

I'm saddened and sorry to read about this confirmation.

But, at the risk of drawing your anger, I want to tell you something.
While ALS is terrible, and FALS is twice the horror, there comes a time when you can live your life without being consumed by bad and sad thoughts. You will enjoy your children and raise them well, without thinking of the disease.

Personally, I think that's probably the best way to be. Live life as normally as possible and give your kids as normal a life as they can have. Unless someone has a better idea, I think that might be the best we can do.

 

[affected]

So sorry it's official.

All I can think is that you are so aware right from this point how it affected your husband watching his father die. This gives you both the opportunity (once you get past the initial shock) to be mindful of your own children and how you can help them find their way through this with you as a family. It may not have the same effect on them.

 

[Nikki J]

I am so sorry. FALS is beyond a nightmare but please know research has really exploded and I truly believe there will be a cure in time for your children. Although this has been the unmet hope of the previous FALS generations I think things are different this time.

 

[Ells]

I'm sorry you are facing the spectre of fALS. I agree w/ Nikki that by the time your children are grown up, something like Gene Editing will be available to cure fALS.

In the meantime, enjoy family life. ALS will still allow for family life, albeit a different one.

 

[scaredwifetx]

I am so sorry and want you to know that you need to hang on to hope and live for the moment. There isn't any way to avoid the trauma that will happen with you and your children nor the anger but hold on to each other as a family and make the best of the time you have together. I am sure a cure is on it's way before your kids are hold enough to be affected. Thoughts, prayers and hugs!

 

[Narrowminded]

Welcome, however I'm so sorry I have to say that word. I cannot even imagine having to think of one of my children following the path of their father. I will be praying there is definitely a cure before they are old enough to have this issue. As others have said, trying to keep your life as normal as you possibly can really can help. hugs to you.

 

[KimT]

I'm so sorry for you and for your kids. I agree with Nikki.......I believe there will be a cure before your kids have to face it. We're all raising awareness in our own way. Cherish the time you have left with him. Make some memories that are good. I can't even imagine having young children and facing this disease but Mike and his wife did it and you will, too.

 

[Tracy500]

Sorry to hear, it has been 2 years as of yesterday my husband was diagnosed. And we have small children as well, 10,6,3. And we don't think he will make it to next summer sadly. My kids are so young but we make the best of each day. Stay positive and do what you can, when you can. Take pictures, make memories.