I have had good intentions of writing more … but it just
never seems to work out. There are just never enough hours in the day,
especially when all I want to do after the boy goes to bed is binge watch
Netflix J!
Things around here are moving along pretty steady. We have
good days; we have not so good days. Then we usually throw in a couple
heartbreaking days, but overall we are doing pretty well. My dad amazes me
daily. He has become the full time caregiver. Mom can’t be alone really at all,
but at least not for more than a really short period of time. She wanders, gets
lost, and gets so easily confused, it’s just not good for her to be alone. One
of our current struggles is getting her to tell us when she goes somewhere. We’ve
had evenings where we search the house over and can’t find her anywhere. Panic
sets in and then someone spots her on the back porch. We’ve made a rule she has
to tell us when she goes outside, but she forgets. This is just how living with
someone with this disease is though.
We are learning to manage and take the difficult days in
stride. They don’t knock us down quite as hard as in the beginning. It’s so sad
how you just learn to accept this stupid disease.
We are about to embark on some serious change. We spent time
talking with our old doctor before he left us L
and everyone decided that if we were going to do this now was the time. So the
hubs and I are about to buy my brother’s house, he and his wife are going to
buy my parent’s house, and then my parents are going to build a very small
house in between both of us that will be handicap accessible. The loans have
all been approved we are just waiting on appraisals at this point. I think it
is going to be really good. Mom and Dad will be building something small and
simple. It will be catered specifically to her and what her changing needs are.
The doctor feels lie as she loses her sight completely this will be a good step
in having a place for her to feel comfortable.
We don’t talk about this much but…there will come a day when
she won’t be able to care for herself at all. On the heartbreaking days we see glimpses
of this and it stinks, but my dad wants her at home with him for as long as
possible and building this home can help with that.
In October we are going to see a new doctor. She’s
terrified. They most recently went to see a doctor here in town and it did not
go well. Within two minutes this doctor decided that mom had been misdiagnosed
and had MS. I could write a whole post on how angry this makes me … but it
doesn’t matter because she won’t be seeing him again. We are going to see Dr.
Hope in OKC. We are hoping that she will
be able to just help us manage as we progress. Mom is terrified she’ll want to
do more tests and stuff we just don’t want to deal with. I’ve told her we won’t.
We are in charge of her treatment. It stinks our doctor left but we will figure
it out…one step at a time. That seems to be the motto of my life lately!
Lastly, I just want to talk about the walk! Oh my gosh you
guys…I’m not even sure I have the right words to say because THANK YOU just
doesn’t seem like enough.
On August 12, I posted and said we were about 61% of our
goal. Today August 22 – 10 days later – we are $10 away from our team goal. I
want to blow our team goal out of the water. I can’t even explain to you what
this means to my mother. Every time I tell her someone new has donated or
joined her team she cries. She keeps telling me she didn’t know all these people
still cared …
It’s not too late to join us or to give. I’ll post the link
below.
I’m also trying to have some t-shirts made. Can you let me know if you’d
be interested in purchasing? They will have this on the front:
And then on the back hopefully it will say #we <3 Susie.
I need an idea of how many I need to order. I’ll be reaching
out to you soon who have joined our team and our planning to walk with details.
If you are planning on walking with us but haven’t joined (or just don’t know
how – like my sweet Mammaw) reach out to me so I include you in the planning.
The walk is three weeks from today – eek!!
As always the support and encouragement you give blows us
away … thank you.
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