I sit in my bed, the house is quiet......hubby has been gone to work for almost an hour....Megan followed not long after for school....although she did try to get out of it...I did let her stay home for a few days when we had that extreme frigid weather last week. I really couldn't see allowing a young woman with a fragile heart condition to walk down an icy road, in the dark and stand at the side of the highway waiting for the school bus.....and for what ...a day of glorified babysitting? I think not.
Tiny snowflakes are falling from the sky that is streaked with pink.....what is that saying....red sky at night, sailors delight, red sky in morning sailors warning....is that an indicator of my day?
If it is then I would like to crawl under the covers and stay there....stay until when?....I don't know.....stay until my life is organized again....stay until the only concern I have is when Megan and Ben are going to be granted living accommodations in an assisted living situation. Ya, those were the days.
I sit in this quiet, as the day slowly unfolds around me....my first thoughts of the day, and continuously throughout the day, are of Maya.....
After eight months of not having a mental breakdown...she had one on November 9th of last year....it last for 31 days..31 days of me trying to still organize my life, carrying on, as they say....not giving up, trying to find the answers that even the professionals shrug their shoulders and look at you sadly, and say...'we don't have the answer'.
We had almost two and a half weeks after she finally came back to us....our beautiful , enthusiastic daughter would return from that dark side that she slips away to, that no one can reach her at....when she left again on Christmas Eve. She almost predicted it, was the author of her own destiny as she sat around the Christmas tree that night....we were going around , saying what we were thankful for on this Eve that we celebrate the greatest gift of all. I said that I was grateful for Maya being healthy....she looked at me and said....'healthy for now'.....she was so anxious about passing through this anniversary...no, anniversary indicates a joyful time....passing through this marker, this occasion....of a year ago when she slipped to the dark side for the very first time.
Hubby and I saw her slipping away , after everyone had gone to bed....her restlessness, her agitation ....her fear.....all too familiar to us now....and we were helpless to stop it.....helpless to hold onto her...
Life goes on...the next day being Christmas Day.....it was suppose to be a joyous day...and as you moved through the pretext of joy...some of the grandchildren were here....you did try to 'soldier on'...make the dinner, serve the dinner, open the presents..presents that Maya would hardly remember that she had gotten....
We took Maya to the Dual Diagnostic Clinic the first Monday after New Years....we were hopeful...Dual Diagnostic is for people that have a developmental delay plus a psychotic event.....yes, we were hopeful....Maya was 'on fire' the whole time, she was melting and getting very upset with us that we weren't doing anything about it. The doctor and his nurse were encouraging...he started her on yet another new drug...an antipsychotic drug...even though after several days they seem to have a bad effect on her....they felt her episodes were based on anxiety and depression.....they said.....they said that we would work with this and then when she was better, they'd start the grand juggle( my words ) to get the antidepressants and anxiety meds at the proper dosages, that she would probably have to stay on the rest of her life......but would prevent her from going to the Dark Side again.
We were all for it....something was mentioned about a follow up visit...we figured it would be in a few weeks....I was shocked when the appointment card came in the mail and it was MARCH 17!!!!!!!!
They sat there and commiserated with us, saying we must feel so alone, that they were there to help us and then the card says March 17!
I read some comments the other day on a site for a new place opening, they hope in 2015.....2015!!!! This is a place that some families are starting up for young people like Maya , where they can get the help they need...it's named after a young woman, with a similar story to Maya.'s . These parents want to help young people in this same predicament that find themselves being shifted around, and waiting, waiting....their lives and all the caregivers around them, who have their lives on hold. One comment said that the problems of young people today originate from them having too much, to doing too much for them, of not letting them grow up..one other said that we have a perfectly good mental health care system and people shouldn't be pouring needless money by seeking help elsewhere. ( the parents of this girl who the place is named for, couldn't get the help they needed and tried getting it in the states).
I was appalled when I read the comments..my son said , ' oh no, you never read the comments!) but I did, I couldn't believe it that these people were so ignorant about the situation and wanted them to come and stay in my home for a few days.....it's not that we don't want Maya to grow up, we don't want to treat her like a baby...but when you have to toilet, bathe, dress, feed and watch continuously lest they walk out the door in sub freezing weather in their bare feet....well, then yes, I guess we are treating her like a baby.
I laughed to myself when an email came into my box today.....25 Ways to Organize Your Life......right.
How to organize waking up every morning and patiently waiting for Maya to wake up, for looking at her face when she comes up the stairs, to gauge the response on her face as I brightly say, Morning Maya, how are you today? How was your sleep?
Yesterday, she responded a bit better than the other days, she actually got her own breakfast, started to get her vitamins and supplements out to take, she was saying full sentences.....the last few days she'd start with two or three words and then trail off....she got dressed in her own room( she usually gets dressed near me , in the bathroom, so that I can instruct her on each piece of clothing to put on)....she brought, from her room...all her art supplies she had requested for her Christmas presents ......I was getting cautiously optimistic that she was coming back......she helped me fold her laundry and made her own lunch...but as she sat at the dining table , with her supplies....she couldn't copy a poster that she drew from her sketch book to the canvas board....she had sketched in large block letters...I LOVE MY FRIENDS....she copied I
The saddest thing about that whole exercise wasn't the fact that she copied it incorrectly but that she doesn't have any...friends that is....this loyal, fun loving, caring young woman doesn't have any close friends, no one that would call and check on her, no one that wants to go out to a movie with her ....why?..I don't know...friends she used to have , have moved on in their lives and left her behind and even though Maya makes friends with complete strangers, kids that she has known for years don't have time for her now. The acquaintances that she makes now , usually influence her to do things that are harmful to her ( she is easily swayed) or they take advantage of her.
We are at a loss to know how to help her.....when she is ' healthy' she is quite active.....cooking class, gym class, monitoring a university class , guitar lessons, youth group at the church.....but in all of this...not one friend that when she hadn't been seen in a few weeks, calls and says...'hey, I've missed you...what's going on?'
As the day wore on, and the sun set...she became more confused again...reminded me of the Sundowner affect that they talk about with Dementia/Alzheimer's patients....hubby worked late. He's back to teachings twice a week, in the evenings. He missed her doing well, because by the time he got home at 10 pm, she wasn't.
Maya when she's with us.
Maya when she's slipped away.
So, I sit here, writing this,waiting for her to get up....waiting for her reactions to the day....maybe someday I'll be able to organize my day 25 different ways...but it won't be today.