Thursday, June 11, 2009
New hope
Have you ever gone to some job interviews and you feel like you are digging down for any tidbit to drag out to showcase your talents and came up short? And then there are other interviews where it is like you are in a room where everyone speaks exactly the same language to the point that you really could communicate telepathically? Where the interviewers thoughts spark yours and yours theres and its like business sex. The give and take being so intense and fitting so perfectly well together that you cannot imagine yourself not being with this person, these people in some strange menage a mind-meld? That is what my interview was like yesterday. It was like going back to the womb and being accepted and welcomed and so entirely at peace. I pray I find myself going there and doing wonderful amazing things.
Thursday, June 4, 2009
And baby makes three...
No, I'm not pregnant! For goodness sake I have my hands full enough. But it got your attention didn't it. What am I talking about then? I'm referencing the fact that my daughter's newest educational evaluation shows she has learning disabilities. That makes three. Up until recently her school progress has been up to par in every subject but math. So..from what the evaluators explained her IQ has been sufficient to get her through previous years but now she is at a point where her IQ level is staying the same and the subject matters is increasingly difficult. Sigh....the saying we can't pick our parents comes to mind and I feel like I have failed my children genetically. Here I sit having graduated college cum laude and sigma theta tau as a single mother of three and my legacy to my children is a genetic defect that causes them to struggle intellectually in a way I cannot even conceive of. Now comes the task of learning how to help my child learn.
Tuesday, June 2, 2009
Sweet Serendipity
Well as hokey as that God shuts a door and opens a window saying is...I guess things like that do happen. Today I was just randomly checking my email after deciding the bills in my real mail were just too depressing to contemplate and Wahlah! It seems I applied for a job months ago when I was tired with the horrible schedule my job at the time offered. I never heard from them, and chalked it up to the economy, karma, what have you. I took a crappier job with a crappier but more regular schedule, left that job because it was insanely impossible and unsafe only to return to my good job with the crappy schedule. Just minutes before checking my email, I had passed by my refrigerator glanced at my incredibly life-sucking schedule and sighed and thought, I like the work, not the hours. I kept repeating that as my mantra. I like the work, not the hours. I am lucky to have enough work. I said it like it was a religious chant. And then came the Wahlah...a random email saying I had applied for a position, they had a hiring freeze, the freeze has thawed, can I come to interview in three days? For a job with a daytime Monday through Friday schedule working with other well respected medical professionals??? Hmmm, couldn't hurt to take a peak and see if the grass is greener or if life would find its way toward normal should I entertain their promises. My mind is wandering to days with a normal routine and my kids knowing when they would see me next spending weekends at home more often than away. Could this be real...it seems so impossible. There must be a catch.
Friday, May 29, 2009
End of My Pity Party
Well I feel much better after ranting in my last post. I threw a fit yesterday (in my head at least) when my scheduler at work informed me she scheduled me for a 7th weekend in a row, six days straight and more than 50 hrs in seven days. My son has been pointing at my picture and saying "Ma Ma Ma Ma" just before his 7:00pm bedtime which most days I barely make it home for. This saddens me because just pointing at my picture and attempting to say my name takes incredible effort for him and he only does things like this when he is desperate for something. Its not that I feel I am neglecting him in any way. I spend every ounce of attention on him that I can when we are together, its just I feel we are not together as much as we would both like to be. Then I began thinking I am one of the lucky people who in this economy are sought out for more work rather than less and my patients and their families request more time with me than other staff for the same reason my son does, they enjoy my care. I should be thankful.
I think its harder though for a mother to go off to work and be the primary breadwinner of the family than it is for a father. I am not saying that there are not some fathers who are drawn to being home with the family and deeply miss their children while they are at work. I do think though that overall mothers feel more torn than fathers. My fiance happily stays home to care for the children but he says he does miss working outside of the home at times and he would not feel badly about going off to work if it meant providing for us. Whereas I feel torn between providing financially and emotionally for them. Both my fiance and I came from homes where our mother's worked. We grew up in the same era, same town, same circle of friends and yet we see this differently. He sees his mother as a strong, capable woman who choose to provide for their family and does not feel he missed time with her. I remember missing my mother deeply when she also worked as a nurse and her shifts were long, and weekend work was frequent. I also remember her handling the juggling of it very well. I simply never want my children to feel that deep sense of longing to have more time with my mother that I experienced and it is clear by my son's communication attempts that he feels this way.
But my pity party has ended. The situation is what it is. I can only learn from my mother's example to do the best I can with what I have and attempt to set some limits with my employer and hope that my children are not discouraged when we miss a few hours with one another.
I think its harder though for a mother to go off to work and be the primary breadwinner of the family than it is for a father. I am not saying that there are not some fathers who are drawn to being home with the family and deeply miss their children while they are at work. I do think though that overall mothers feel more torn than fathers. My fiance happily stays home to care for the children but he says he does miss working outside of the home at times and he would not feel badly about going off to work if it meant providing for us. Whereas I feel torn between providing financially and emotionally for them. Both my fiance and I came from homes where our mother's worked. We grew up in the same era, same town, same circle of friends and yet we see this differently. He sees his mother as a strong, capable woman who choose to provide for their family and does not feel he missed time with her. I remember missing my mother deeply when she also worked as a nurse and her shifts were long, and weekend work was frequent. I also remember her handling the juggling of it very well. I simply never want my children to feel that deep sense of longing to have more time with my mother that I experienced and it is clear by my son's communication attempts that he feels this way.
But my pity party has ended. The situation is what it is. I can only learn from my mother's example to do the best I can with what I have and attempt to set some limits with my employer and hope that my children are not discouraged when we miss a few hours with one another.
Wednesday, May 27, 2009
Future Foreboding about the Fragile State of My Life
As it happens every time my little man goes to an eval I see the side of him I tend to ignore. I find myself so amazed every day by his progress and his true valiant attempts at normalcy that I often don't realize how exceptional (and I mean that in all the ways it can be meant) he really is. Most especially though the evals always point out just how severely affected by Fragile X and its accompanying mental retardation and autistic behaviours he really is.
As if the eval by itself weren't enough of a reminder of what an incredibly difficult road lies ahead for my youngest child I was sitting in the waiting room of the orthotists office later in the afternoon and saw a magazine on the table regarding Autism. The article was "How Autism Ages" by Karl Taro Greenfield from this month's Time magazine. Just to torture myself further I decided to read it. I say torture because previous to my career as a nurse I had worked in group homes and residential facilities and am well-aware that Autism is not a "childhood"disorder. The article pointed out something that has been running through my mind both as a mother and as a medical professional for some time now. If 1 in 150 of today's children is autistic and the baby boomers are aging rapidly what does that mean to my generation? What does it mean for the parent's of Fragile X children who have aging parents who may or may not even have Fragile X Ataxia? How overburdened are we as caregivers going to be? How can we provide financially for this burden? How can we prepare ourselves emotionally or even physically to be so depended upon? What happens if we get sick? Who will be there if when we are outlived? These are the "don't think about it" questions that are taboo to mention even to other parents of special needs children.
I sit here contemplating this while ill with what may be a ruptured ovarian cyst or something worse as I skipped my biopsy last summer. I sit here with no time off should I need surgery. I sit here with no short-term disability insurance. I sit here with no other income producing parent to assist me. I sit here here with no life insurance. I sit here with no medical insurance because I changed jobs and my new insurance has yet to begin. I sit here scared clear out of my mind!
Am I making it out to be the worst case scenario?...of course. Sure its probably just an ovarian cyst, not ruptured, caused by Fragile X Premature Ovarian Syndrome that is just making me sick and screwing my hormones up entirely while making me a miserable neurotic mess. But in my head I have already doomed myself to ovarian cancer. In my head I am thinking how the hell long would I have to be out of work if I needed chemo. In my head I have doomed myself for skipping last years biopsy because I didn't want to suffer through any more pain or time out of work. In my head I see my son shipped off to his schizophrenic father shortly after my funeral because his siblings are not yet old enough to care for themselves never mind a mentally challenged younger brother. I have imagined my fiance devastated, homeless, wanting to keep the children (who in every other way but genetically belong entirely to him) but having them taken from him because I did not provide better financially or legally.
Reading this article just threw me into a "what's the worst that could happen" tail spin. Because all it would take to pull the rug out from under my family entirely is for me to get ill for more than three days. That's the reality. That's the "fragile" state of affairs. That is the tight-rope walk I perform day in and day out. Don't fall, walk a straight line, don't look back, don't look down, keep your eyes ahead, focus on getting to the other side....without falling.
As if the eval by itself weren't enough of a reminder of what an incredibly difficult road lies ahead for my youngest child I was sitting in the waiting room of the orthotists office later in the afternoon and saw a magazine on the table regarding Autism. The article was "How Autism Ages" by Karl Taro Greenfield from this month's Time magazine. Just to torture myself further I decided to read it. I say torture because previous to my career as a nurse I had worked in group homes and residential facilities and am well-aware that Autism is not a "childhood"disorder. The article pointed out something that has been running through my mind both as a mother and as a medical professional for some time now. If 1 in 150 of today's children is autistic and the baby boomers are aging rapidly what does that mean to my generation? What does it mean for the parent's of Fragile X children who have aging parents who may or may not even have Fragile X Ataxia? How overburdened are we as caregivers going to be? How can we provide financially for this burden? How can we prepare ourselves emotionally or even physically to be so depended upon? What happens if we get sick? Who will be there if when we are outlived? These are the "don't think about it" questions that are taboo to mention even to other parents of special needs children.
I sit here contemplating this while ill with what may be a ruptured ovarian cyst or something worse as I skipped my biopsy last summer. I sit here with no time off should I need surgery. I sit here with no short-term disability insurance. I sit here with no other income producing parent to assist me. I sit here here with no life insurance. I sit here with no medical insurance because I changed jobs and my new insurance has yet to begin. I sit here scared clear out of my mind!
Am I making it out to be the worst case scenario?...of course. Sure its probably just an ovarian cyst, not ruptured, caused by Fragile X Premature Ovarian Syndrome that is just making me sick and screwing my hormones up entirely while making me a miserable neurotic mess. But in my head I have already doomed myself to ovarian cancer. In my head I am thinking how the hell long would I have to be out of work if I needed chemo. In my head I have doomed myself for skipping last years biopsy because I didn't want to suffer through any more pain or time out of work. In my head I see my son shipped off to his schizophrenic father shortly after my funeral because his siblings are not yet old enough to care for themselves never mind a mentally challenged younger brother. I have imagined my fiance devastated, homeless, wanting to keep the children (who in every other way but genetically belong entirely to him) but having them taken from him because I did not provide better financially or legally.
Reading this article just threw me into a "what's the worst that could happen" tail spin. Because all it would take to pull the rug out from under my family entirely is for me to get ill for more than three days. That's the reality. That's the "fragile" state of affairs. That is the tight-rope walk I perform day in and day out. Don't fall, walk a straight line, don't look back, don't look down, keep your eyes ahead, focus on getting to the other side....without falling.
Saturday, May 23, 2009
Economic Awareness
Apparently the economy is on everyone's minds. Last night while having a campfire to roast marshmallows out in the yard a friends son turned to his brother after witnessing him dropping and scortching marshmallows repeatedly, "You know, you really shouldn't waste marshmallows in an economy like this." The marshmallow waster will be eight today. I believe the economist is ten.
Wednesday, May 20, 2009
The Unjustice System
Ok, bye now people reading this now that I am the mother of three children and one soon-to-be step-child from three marriages. While that sounds pretty strange I'd like to explain a few things. When I first married we were very young, we found we weren't compatible, we parted bitterly, and now that we are older and wiser have become friends.
Going into a second marriage one tends to be cautious and more committed because no one wants to make the same mistake twice or bring their children into a situation that may not be permanent. But NO ONE goes into a marriage to a person expecting that person to have a total personality change due to mental illness. But sometimes it happens. Schizophrenia hits young adult men suddenly from out of nowhere. And one year into my marriage I found myself with a newborn son who appeared to have a yet to be discovered disability (fragile X) and a husband who seemed to be leaving reality and sanity by the wayside some days. So like any caring wife I begged for my husband to seek help and of course he blamed each therapist for not having the right answer and not telling him what he wanted to hear. Each medication didn't work because it wasn't the high he got from stuff he sought on the street. He began to recall conversations that never took place, his behavior became erratic and dangerous, he lost jobs, committed crimes and when he finally became assaultive to myself and my oldest two children I had to end the relationship.
So here I am a few years later. At first he was granted no visitation, then supervised, then unsupervised for short periods of time and now he wants overnights. My ex has not improved much at all and is now requesting overnight visitation with my son. My son has had a guardian ad litem appointed due to the constant irrational and unfounded accusations my delusional ex has made against me. All of these of course have been proven false and thankfully the court is now aware of his diagnosis and discounts his outrageously delusional ravings.
June 1st I have to go to court at his request because he wants to spend overnight visits with my child. I ask you friendly readers of my rant...would you let a person care for your child if they were on social security for a psychotic disorder, had a criminal record of multiple assaults and theft, were a registered sex offender, were a non compliant diabetic who could slip into a coma at any moment because his blood sugar is frequently 500 and whose live in girlfriend caused your child second degree burns while working as his paraprofessional at school? I'm pretty sure every single one of you replied OF COURSE NOT! He is not even able to volunteer at my son's field day at school because he cannot pass the CORI check.
According to the court it is my ex husband's God-given right to overnight visitation with his child due to his "biological" connection to our son. I'm sorry but I hardly see how DNA trumps criminal and psychotic behavior? Maybe this country really does have too many freedoms. The guardian ad litem actually suggested I let him "attempt" overnight visitation and "fail" at it while under the "watchful eye" of the court. WHAT? What does "fail at it" mean for my son! Is the court's "watchful eye" going to be there when they find my nonverbal, severely disabled child who cannot express his needs dead because his father passed out and my son fell to his death? "Watchful eye!" My son doesn't need a watchful eye, my son needs constant one on one supervision by someone who can at the very least take care of themselves.
Going into a second marriage one tends to be cautious and more committed because no one wants to make the same mistake twice or bring their children into a situation that may not be permanent. But NO ONE goes into a marriage to a person expecting that person to have a total personality change due to mental illness. But sometimes it happens. Schizophrenia hits young adult men suddenly from out of nowhere. And one year into my marriage I found myself with a newborn son who appeared to have a yet to be discovered disability (fragile X) and a husband who seemed to be leaving reality and sanity by the wayside some days. So like any caring wife I begged for my husband to seek help and of course he blamed each therapist for not having the right answer and not telling him what he wanted to hear. Each medication didn't work because it wasn't the high he got from stuff he sought on the street. He began to recall conversations that never took place, his behavior became erratic and dangerous, he lost jobs, committed crimes and when he finally became assaultive to myself and my oldest two children I had to end the relationship.
So here I am a few years later. At first he was granted no visitation, then supervised, then unsupervised for short periods of time and now he wants overnights. My ex has not improved much at all and is now requesting overnight visitation with my son. My son has had a guardian ad litem appointed due to the constant irrational and unfounded accusations my delusional ex has made against me. All of these of course have been proven false and thankfully the court is now aware of his diagnosis and discounts his outrageously delusional ravings.
June 1st I have to go to court at his request because he wants to spend overnight visits with my child. I ask you friendly readers of my rant...would you let a person care for your child if they were on social security for a psychotic disorder, had a criminal record of multiple assaults and theft, were a registered sex offender, were a non compliant diabetic who could slip into a coma at any moment because his blood sugar is frequently 500 and whose live in girlfriend caused your child second degree burns while working as his paraprofessional at school? I'm pretty sure every single one of you replied OF COURSE NOT! He is not even able to volunteer at my son's field day at school because he cannot pass the CORI check.
According to the court it is my ex husband's God-given right to overnight visitation with his child due to his "biological" connection to our son. I'm sorry but I hardly see how DNA trumps criminal and psychotic behavior? Maybe this country really does have too many freedoms. The guardian ad litem actually suggested I let him "attempt" overnight visitation and "fail" at it while under the "watchful eye" of the court. WHAT? What does "fail at it" mean for my son! Is the court's "watchful eye" going to be there when they find my nonverbal, severely disabled child who cannot express his needs dead because his father passed out and my son fell to his death? "Watchful eye!" My son doesn't need a watchful eye, my son needs constant one on one supervision by someone who can at the very least take care of themselves.
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