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Tuesday, January 21, 2014

Always open for advice

First, just a note that Janey slept much better last night.  She seems better today---not super happy, but very little crying or screaming.  Thank goodness.

I've been thinking a lot about advice lately.  I've noticed that after things are very tough with Janey, and I write about it, a lot of friends and blog readers (and those categories overlap a good deal!) seem hesitant about offering advice.  I never want to make anyone feel that way.  People often say to me "I know I have no idea what it's like to being going through what you are going through".  Well, that's true, but that's true for anything anyone is going through.  None of us truly know what another person's life is like.  I know that everyone has tough challenges, and everyone has situations that are unique to them.  But that doesn't mean that no one has advice or ideas that might be helpful in another person's situation. 

For me personally, advice is never unwelcome.  I don't do anything in regards to Janey (or in any area of my life) I don't want to do, so if the advice is not something I think will work, I just don't use it, but that doesn't mean I'm upset I got it.  I need all the help I can get.  

I can see how it would be easy to drive people out of your life if you have a child with a significant disability. It's very easy, when sleep deprived and overwhelmed and at the end of your rope, to think everyone else's life is so much better than your own, and to start resenting them.  I never want to be like that.  Janey is tough.  I'll never pretend she isn't.  But I have a lot of wonderful things in my life.  She is one of them.  She is a wonder to me, so often.  And I have a great husband, two amazing sons and many friends so amazing I wonder every day what I did to deserve them.  I have enough to eat, shelter, all the books I could ever read (thank you, Boston Public Library), my hobbies, good health care, and I am living in this amazing information age, where from right at my computer, I can access Facebook, email and the whole world of the internet.  I am lucky in so many ways.

There are days when I feel very alone.  There are days when everyone feels very alone, I know.  But I know I'm not alone, and I am so glad I'm not.  So please, if you have ideas, advice, stories---never ever hesitate to share them.


Unknown said...

It's nice that you have friends, shelter, food and all those things. I have an 19 month old daughter who's currently being evaluated by a whole bunch of doctors. And I have a healthy, normal 6 month old daughter too.

My 19 month old screams all the time and yells, doesn't talk, doesn't eat solids. It's very hard to take her anywhere because she will start yelling very loud. Not out of anger, but just because.

I myself have epilepsy, it's hard for me to stay up with her because lack of sleep will cause me a seizure. The house we rent is falling apart, the roof is leaking, pipes are leaking. I have zero friends, I never go out, not even once a week. My partner, works a lot, sometimes out of town and I am all alone, praying things will get better, if not with health then at least with the car or shelter.

Nothing is stable, not my health, not her health, not shelter, not food, not vehicle. I'm scared that we are going to be using the bus soon, and it will be so hard with her screaming so much. She doesn't even want to sit in the stroller, so we have to carry her everywhere. She started walking 2 months ago, but doesn't walk any where but the house. So when we go shopping one of us has to carry her all the time.

I'm scared we will have to move and we will have to move and get rid of most of our possessions, it's so hard being scared all the time with no stability, never knowing if you'll have enough money for food or utilities. Or if you'll have to leave your home. I wish I could buy a home, have some stability at least with shelter. My epilepsy is so scary, I'm always scared to be alone with the girls. I always hope someone, maybe a friend will help out, maybe I could go for a walk or something and just get some air.

Suzanne said...

I wish I could help you! That sounds so very, very hard. We have thought so many times we are glad we don't rent. We live in part of a home owned by my husband's family, and it's also pretty falling apart, but if we rented, we would have that extra worry of having to move, and I don't know how I'd be able to take that. Have you gotten your daughter into Early Intervention? I don't know where you live, but sometimes EI has playgroups that a toddler can go to for a few hours a week anyway, so you could at least breath! Sometimes you have to stay at the center, but in another room, and when my kids were little, that was sometimes a nice break---I could have coffee or just sit there. Sometimes too EI too has a parent's group, and you can at least meet other parents to maybe trade off once in a while so you can at least take a walk. I know EI varies from state to state, but if you are in the US there should be some kind of it. I wish I had other ideas. It's especially hard before kids are 3, because at 3 the local schools do have to provide some help, but before 3 it can be so tough. I will be thinking of you.