We are trying to plan a vacation. Just me and hubby...in 16 years we have n
ever, ever, EVER gone away for longer then a weekend. I know our time is coming. We have a lot to show for our life. We have awesome kids, a home, very little debt and an amazing circle of friends and family, all of who are so supportive of us (and even our crazy schemes, at times).We watch others go on with their seemingly perfect lives. They go on holidays, they have the healthiest kids, they don't show anyone on the outside that they have issues. They are perfect. Their kids are perfect. And I know that it is not real...I really do.
Then we have a day like today where I truly envy those people. I really do. I can't even make our family look perfect on the outside. We deal with fighting, kids comparing war wounds from our youngest (who has an ABI), we deal with seizures and development delays...
And now we have to decide where we are going to go...and where our kids are going to go...and I know that I have an amazing support circle...but I don't want to abuse that either...I don't know if I make any sense at all...but.
Today Faith had a BIG seizure. Like, probably close to one of the biggest she has had to date. 10 minutes, full body. Thank God that the ativan (and prayer that I screamed over her!!) stopped this one. She is now so groggy. And now I have to book a holiday. Seriously. What can suck more then this??
So, I thought, let's see if we can qualify for respite of some kind. Let her go and stay somewhere where they are medically trained to deal with her and her anger/seizures/autistic tendencies. Where I won't be burdening any of my family or friends with what can turn into a very stressful week.
So, I called around and tried to get involved with the local service here that offers respite and other programs. Faith doesn't qualify. She has to be diagnosed, by a psychologist, with (proper medical term) mental retardation. She doesn't have that diagnosis right now.
So, we are in the middle. We are stuck between being too normal or too retarded...I am slightly upset.
We are stuck in middle class...not financially, but for services. She is not as bad as she could be/but she is not as good as she could be.
How the **** do we deal with anything? How the **** do we find the support we need? How do I be thankful for where we are right now?
I am having a bad day...
Seriously...We are left nowhere...
oh Ruth... I am so sorry. That really sucks. Big time.
ReplyDeleteI can understand a little bit... we are really reluctant to ever leave Aiden anywhere because of his Autism. But to add seizures to that is just too much.
big hugs to you.
{{{hugs}}} With tears in my eyes, I don't know what to say... I feel your pain.
ReplyDeleteDo you need to go out for coffee tonight?
ReplyDelete{{hugs}}
Thank you for sharing your story. I was having a bad night myself, alone with my 4 dealing with each of their issues and misbehaviour, your post made me remember my childhood. Growing up with a handicapped sister and what my parents went through. My parents were able to get respit for my sister or special camps in the summer, to get a rest. Or before that a special family member to come live in. My parents work closely with the Community Living in out area and they were able to help with support workers. Crossing fingers you find the right people to help. They are out there for you.
ReplyDeleteYou don't know me but sometimes having even strangers understand can help and I don't know what it's like personally, but I have friends with the same types of issues and all I can offer is a hug. So through cyber space here is a virtual hug:
ReplyDelete{{HUG}}
I hope you are able to find some help/rest in the best possible way!