I am a little sad right now, my sister is going to move her family into an apartment and sell her house. I know she has to, but it just saddens me so much.
Her husband has MS and he has gone from remitting/relapsing to Secondary progressive (I may have some of the terms wrong). She has so much on her shoulders and the combined stress of worrying about his safety in their wheelchair/walker unfriendly two storey, caring for their three boys and being the sole breadwinner is too much.
Our market here is still very strong and I am sure she will make enough from the sale of her home to be free and clear of any debt.
I have been hard on her husband in the past. I admit that I always wished he would step up and try harder, instead of just laying around and letting the disease take him. I realize now that I have been so unfair - it’s easy for me in my comfortable and able-bodied (knock wood) lifestyle (where my most recent worry was if I could be ready for my 7 K race on New Years Day) and to pick on him. I nearly fell apart when my daughter had her (so far) one symptom of JRA.
I am just glad I kept my feelings to myself.
So they have put their names on the waiting list for a three bedroom apartment in a very nice building. The two younger boys will have to share a room.
My sister is such a powerful Christian, she takes such comfort in her faith. I admit I have a long way to go - I am not quite at the same spiritual growth point that she is, it’s really amazing.
Through all of the struggles - the amazing financial struggle, the physical toll and everything, she has remained steadfast in her faith in God’s Plan for her and her family.
I look at her boys and want to cry for the things they have missed out on, a strong male role model, activities they want to try, a mom that can relax and take time (although she tries hard).
I was hoping to sign up to run the Disneyworld marathon with Joints In Motion next January - I want to raise enough to take her boys with us, but that seems so daunting. So much money.
Does that sound stupid?
I just want to give them a week where they can just be kids and don’t have to worry about their Dad falling.
I want to give a trip to Patti too, a getaway. She works so hard I want her to have a chance to just be…no demands…just be and breathe for a while.
I’m rambling. I know. Sorry.
I am just so torn. I am praying and choking back the lump in my throat.
If you are a believer, please pray for them.
I’m so sorry things are rough for you and your family.
I think a week of rest for your sister and her family would be one of the best things they could get. I think that even if they don’t get an actual holiday, a week of rest would be worth it. Being clear of debt will remove such a source of stress as well. Will they get enough equity back from the house to not only clear debt, but also to take that holiday down south?
This non-Christian is sending good thoughts your way too. 
You know, I have a friend with MS and he has been a great dad to his kids.
There is more to being a strong male role model then playing sports with the kids.
Speaking for my friend, the one thing he does not want is pity. Help? Yes. But no pity.
I don’t show him pity - but I do offer help. I also lectured him the other day, he has lots of pride - which is fine - but sometimes he refuses help when he should probably accept.
I explained to him that sometimes people that are offering help NEED him to take it, even if he doesn’t need it, and that accepting the help is something he can do for the other person.
He seemed to understand.
There are probably support groups than can also help the family, I am sure with MS, it isn’t obscure of a disease to not have some kind of thing in every major city.
Don’t forget online resources.
I think your sister is doing the smart thing of getting out of the house. They are alot of maintenence and time, two things that she probably doesn’t have alot of right now or in the forseeable future.
This frees up that mental obligation and worry. I hope where ever she moves has a very good property manager/owner and wonderful, compassionate neighbors.
And speaking as someone how has a pretty good idea of the shit side of human genetics and how it ravages the spirit, zebra put it perfectly with they need help ( and friendship) and not pity. Pity is worse than the disease and, unfortunately, you cannot taser the people who dish it out.
As things get slowly worse, your sister will find out who their real friends are and it will be someone/body least expected. Devastating illnesses have a way of erecting invisible walls around people.
I’m glad she has her faith to help her through.
With the kids, just be there and talk normal to them. They know what is going on, they are living in a slowly evolving Edvard Munch’s Nightmare picture and as someone who has been there, done that, as well just don’t let them slide into depression. Teen angst and Major REAL Life Shit opposed to The Usual OMFG!!! kidshit happening has a way of totally and completely wrapping them up because everyone elses family is normal and their father isn’t in a wheelchair/uses a cane/has braces. They all know about us but no one ever says anything. They think we are freaks…etc.
I cannot strongly suggest enough the importance of counselling for the kids to help them on a weekly or monthly basis. ( or as needed.) School, church, professional, support group. **
Something.must.be.done**.
Kids grow up fast enough, if you want to see them become little adults, give someone they love a disease. A wasting disease. It.blows.
Find a book on MS to give to them and yourself to educate everyone on the cause (genetic or random kick in the balls? ), treatment (RX, therapy,braces) and so on. I’ve found the more I know about whatever shitstorm of medical crap hits CASA UJEST, the easier it is to find footing during the storm.
Tell your sister that a random stranger from the web that you don’t know from a bar of soap has been through something similar with all her brothers (4) who had/have Muscular Dystrophy. (20-25 year march to the grave from the first diagnosis. One is still with us and is on borrowed time.)
It is a shitstorm and it will suck. But there will be great moments that can never be planned that you wouldn’t trade for all the money in this world. Peace, compassion and a big fat winning lottery ticket is my wish for her and her kids.
Joan
I think you should sign up for the marathon- that’s a wonderful gift to give her kids. Plus, I’m sure that you know of a place with lots of caring members who would be more than happy to PayPal contribute to your cause, if ya know what I’m sayin’ (I know that I’d be more than happy to contribute a little).
Thank you all so much - I just wish I could do more for them.
I know they are all strong, it’s just so hard to watch this family suffer.
Diosa - i will sign up after Christmas and if the Mods will let me post about it, i will.
I would love to give that to them