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Friday, December 26, 2014

No Christmas Miracles

I am not sure why I always hope Christmas will be a better day for Janey than it is.  I guess I have a deep seeded, secret, well-hidden belief in Christmas miracles.  I think if I do things right, and believe really, really sincerely, something will work and Janey will have a wonderful Christmas.

Needless to say, the miracle didn't happen again this year.  I won't say it was a bad Christmas, because it was a very good one, in ways that were apart from Janey.  My parents were very generous and therefore the boys each got a present they very much were surprised by and loved.  The kindness of so many people allowed me to not have to worry about medical bills much, so I was able to get the kids some presents they very much liked from us,  too.  And we even had a bag of presents from an organization that provides help to families with disabled children, including hats and gloves for the boys and several presents for Janey, one of which she hasn't even opened yet.  The boys got into the spirit and gave us presents, we did our traditional cheese and cracker tasting, we had a great night at my friend Maryellen's house on Christmas eve, we had a beautiful tree and so much was terrific.  But Janey....

If the mood stablizers are working at all for Janey, they are working to stablizer her mood as bad.  She was cranky, screaming, hitting almost all day yesterday.  There were a few very brief happy moments, mostly while eating, but most of the day, it wasn't good.  She opened a few presents with extreme half-heartedness, mostly giving up halfway through unwrapping.  She did like a giant SpongeBob I gave her, and a fuzzy Care Bear that was in the present bag, but mostly she ignored all presents as usual.  Her screaming was the backdrop for most everything we did.  It was very wearing.

It's on days like Christmas I most feel for Janey's brothers.  They didn't sign up for this.  They deserve a great Christmas.  We are Janey's parents.  We DID sign up for this.  We are responsible for her.  But they aren't, and so often, their lives are so affected by her.  They don't say that.  They both thanked us for a great day.  They are wonderful boys.  But sometimes I feel awful for them having to always come second.

I think we are weary.  It's been a very long few months.  So many things have been tough, and then there has been hope followed by disappointment.  The Bradley Hospital stay turned out to be just respite---nothing long term was gained.  The new medication seems like a flop so far.  The state insurance help is now just another piece of annoying bureaucracy I soon need to figure out.  And there is always the screaming, the crying, the hitting.

I don't want to write such a negative post today.  If it were not for the amazing support and kindness of so many people, I think this post would not just be negative, it would be despairing.  And we are not despairing.  We are tired, we are discouraged, but we are hanging in there.  I guess that's good, for now.

So--a few pictures of our Christmas, and my hope that all of you had a wonderful Christmas, if you celebrate it.  Let's all look to the future and keep hope alive for 2015.


Unknown said...

Sorry to hear what your going thru. Mood stabilizers or muscle relaxers did nothing for Age either. She was on at least 10 that I can think fo right now, knowing there's more, medications for her moods or behaviors from the age of 10-15. Those years were the worst for her family. She was either mores self injurious or so drugged up that she was a walking zombie. And the stays did nothing either. Like you said more respite then anything.have you ever tried an alternative therapy? Like acupuncture or visiting a holistic doctor? We saw a holistic doctor and she was free just for consultation. Know of a great one in NY. Pretty far from you guys though I am guessing. She works only with autistic children and has a autistic son herself. Gave us great advice. Or I would suggest getting in contact with Kim Stagliano. Think I mentioned her name before. Mother of 3 severely autistic girls. I can even message her if you would like? She helps us out every now and then too. Age actually did great on Christmas first time ever! Less seizure activity and very social. She's usually very aloof. Rare moments with her. Christmas Eve was another story. Constant jumping, screaming, hitting, yelling, scratching. Seemed more of like a manic mood last night. And lots of seizures. Age isn't bipolar. Her moods change too fast to ever be considered ib polar that's why none of those medications meant for behaviors or moods did anything. Is Janeys mood extremely fast like in a matter of seconds? Hopefully the new year brings new hope for you and your family.

pianorox said...

Wishing you and your family peace in the new year.

Unknown said...

You definitely don't sound despairing. Tired and worn out maybe. You are a wonderful mother and it looks like your boys had a wonderful Christmas even in the midst of a bit of chaos. :)