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.
Friday, May 29, 2009
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.
Monday, May 18, 2009
Fire and Water
No the title of today's blog is not a clever metaphor just simply the elements are they are. Why am I thinking of them at the moment....well today the basement had both fire (ok smoke signaling the coming of fire) and water. My fiance decided it was so nice the other day that he left the basement hatch open so our family room down there could have a much needed breeze and some sunshine. Well he closed the inner door to the stairway and left the hatch open, went to bed and then we had thunderstorms after midnight. The hatch remained open and water cascaded down to our carpeted family room. So today while using the wet vac to remove the remaining moisture I begin to smell sulphur. Hmm? I'm not using any sulphur, not using any fireworks or gunpowder so....should I not smell sulphur. I go outside, it smells stronger. I think Great! It must be someone else burning something with sulphur, and then I look to the sky! A giant black plume of smoke is coming from the chimney..(we have no fireplace). The smoke begins to get darker and darker. I call inside for my fiance to call 911 and turn off the furnace asap. We get to meet the entire town's fire department including the Chief and its two ladder trucks and some of the town's police staff too. Its a small town. And I've already been told our moving here has cost the town thousands in special education...I can only imagine this added more to our tally. Apparently my landlord decided it was ok to skip spending the $100 to clean the furnace so he could risk hundreds of thousands along with our lives by not cleaning it. Thankfully today was my day off and I was here to see and smell it before the house caught fire!
Saturday, May 9, 2009
Family Dysfunctions
Today was my first Saturday off in the past four months. Of course my family decided to plan a picnic for Mother's Day and my grandmother's birthday and my fiance had to attend an out of state funeral so it was not the peaceful sleep in idylic day I had been longing for. (Ok Frag X Moms go ahead and laugh out loud at the sleep in part of that..its a given) Needless to say this left me alone with my two teens and my five year old Xman. So I recruit my mother.."If I go to this shin dig, will you help me keep an eye on Jake?" "Sure she says, I'll give you a hand as much as I can." So I've agreed to attend and she's agreed to help. Great.
Then I get a call from my uncle.."Your Mom has the flu again..and won't be coming." This phone call immediately parlays inferred guilt and really means, "she's out, are you still in?" So since I blew off the last family shin dig due to work and severe exhaustion, overly busy children and the fact that I live out in the middle of nowhere...I foolishly agree to attend sans my mother.
I suddenly want to switch bodies with my single, childless brother who lives a six hour flight away and is probably enjoying a lovely hike or a beer. But I agree to go.
Going to this event involves getting everyone up and dressed and out of the house to drop off my fiance in one town then driving 20 minutes to their bowling tournament, hanging out with my little Xman for an hour biding our time during the tournament and then driving another 30 minutes to the park for the picnic. Did I mention we live in the middle of nowhere...where cell phones don't receive messages about picnics being moved to the community center of my grandmother's assisted living facility due to a passing shower????
Arriving at the park, I see no one. I look down at my phone that does not have service at the park either and see my uncle's number as a missed call and three voice mails. THAT I CAN'T ACCESS due to lack of service! I say WTF to both myself and out loud in front of my kids. And my teens reply SERIOUSLY Mom WTF how inconsiderate they know Jake can't take all this running around. They're right. And once at the park we CANNOT leave without the promised train ride for being such a good boy waiting through all the driving to get at least that far. So my daughter takes Jake on the train, then I take Jake on the train. We watch some cool Morris Dancers in the park for a few minutes and drive off to the assisted living facility.
I call my uncle once I have cell service again. I say I didn't get the message I will be there at two..it started at 12. I have some of the food so I feel terrible thinking everyone will be waiting because I have some of the food or that they will have already eaten so what's the point when I could have stayed at the park and had a nice Saturday with my kids.
We arrive only to find that my Aunt has been there and left to pick up my 15yr cousin from dance class two towns over and no one has eaten and everyone is waiting for her to arrive. Jake is freaking out, he has never been to this place, he rarely sees my relatives and Wallah we are stuck sitting waiting for over an hour for my aunt. Meanwhile my grandmother whose party this is has to take off in an hour to attend a 50th anniversary party!
What the holy heck! These people have seen Jake enough to know what a day like this entails for he and I. I think there should be some sort of sentence for people who pass on this lovely genetic windfall and then close their eyes, and ears and throw common sense to the wind when planning a gathering with them! Maybe they should be forced to spend one week alone with my Xman, go everywhere he goes, do everything he does, be awake when he's awake, watch the same video twenty times per day.....
Any thoughts???
Then I get a call from my uncle.."Your Mom has the flu again..and won't be coming." This phone call immediately parlays inferred guilt and really means, "she's out, are you still in?" So since I blew off the last family shin dig due to work and severe exhaustion, overly busy children and the fact that I live out in the middle of nowhere...I foolishly agree to attend sans my mother.
I suddenly want to switch bodies with my single, childless brother who lives a six hour flight away and is probably enjoying a lovely hike or a beer. But I agree to go.
Going to this event involves getting everyone up and dressed and out of the house to drop off my fiance in one town then driving 20 minutes to their bowling tournament, hanging out with my little Xman for an hour biding our time during the tournament and then driving another 30 minutes to the park for the picnic. Did I mention we live in the middle of nowhere...where cell phones don't receive messages about picnics being moved to the community center of my grandmother's assisted living facility due to a passing shower????
Arriving at the park, I see no one. I look down at my phone that does not have service at the park either and see my uncle's number as a missed call and three voice mails. THAT I CAN'T ACCESS due to lack of service! I say WTF to both myself and out loud in front of my kids. And my teens reply SERIOUSLY Mom WTF how inconsiderate they know Jake can't take all this running around. They're right. And once at the park we CANNOT leave without the promised train ride for being such a good boy waiting through all the driving to get at least that far. So my daughter takes Jake on the train, then I take Jake on the train. We watch some cool Morris Dancers in the park for a few minutes and drive off to the assisted living facility.
I call my uncle once I have cell service again. I say I didn't get the message I will be there at two..it started at 12. I have some of the food so I feel terrible thinking everyone will be waiting because I have some of the food or that they will have already eaten so what's the point when I could have stayed at the park and had a nice Saturday with my kids.
We arrive only to find that my Aunt has been there and left to pick up my 15yr cousin from dance class two towns over and no one has eaten and everyone is waiting for her to arrive. Jake is freaking out, he has never been to this place, he rarely sees my relatives and Wallah we are stuck sitting waiting for over an hour for my aunt. Meanwhile my grandmother whose party this is has to take off in an hour to attend a 50th anniversary party!
What the holy heck! These people have seen Jake enough to know what a day like this entails for he and I. I think there should be some sort of sentence for people who pass on this lovely genetic windfall and then close their eyes, and ears and throw common sense to the wind when planning a gathering with them! Maybe they should be forced to spend one week alone with my Xman, go everywhere he goes, do everything he does, be awake when he's awake, watch the same video twenty times per day.....
Any thoughts???
Thursday, May 7, 2009
The Today Show...
Today I was having my coffee and watching the Today Show, just moments ago and there was a woman who had written a book about motherhood in response to some negativity she received after a comment she had made during a previous interview. Today's interview focused on how mother's tend to judge other mothers and the pressure we put on each other to be perfect. OMG I thought just yesterday I dealt with this. I have a bumper sticker on my ugly, dented, blue minivan that is filled with spilled goldfish crackers, randomly thrown sweaters and forgotten toys rolling around on the floor. The bumper sticker reads "I love my rotten ungrateful children." In general this bumper sticker gets nothing more than chuckles, thumbs up as I drive by or people just shaking their heads.
Yesterday however one of the physical therapists I share a patient with asked if the van in the driveway with this sticker on it was mine. I said yeah of course it was mine, she knew who the only other car in the drive belonged to. She rolled her eyes and said, "really you're children are rotten and ungrateful. Well mine never were. I guess its because they were raised poor with nothing and are thankful for everything they have." OMG I wanted to slap her. I don't know this woman from anything other than the 30 minutes per week she spends with my patient. I reply, "You have heard of sarcasm haven't you??"
Holy Moly! Obviously this woman has no idea that previous to my adequately paying career (she earns equally as much!) I was in school in my mid thirties finishing my last semester on welfare, divorcing a husband with a psychiatric condition that presented itself in my third year of school just six months after my youngest child received a Fragile X diagnosis. My children are far from privileged. What gives people the right to assume things about another? Really what are they ungrateful for the ten year old dented and somewhat broken minivan the stickers are applied to? Or are they ungrateful that their mother spends her time caring for other disabled children so they can eat and have a roof over their head while she has her own special needs child at home? I wanted to scream and slap her across the face. Instead I simply said, "Really, its not literal, I tease them, and unlike others they get that its a joke!) Just like the bumper sticker along side of it that says, " I like poetry, long walks on the beach and poking dead things with a stick!" Like I have time to go around and poke road kill!
Yesterday however one of the physical therapists I share a patient with asked if the van in the driveway with this sticker on it was mine. I said yeah of course it was mine, she knew who the only other car in the drive belonged to. She rolled her eyes and said, "really you're children are rotten and ungrateful. Well mine never were. I guess its because they were raised poor with nothing and are thankful for everything they have." OMG I wanted to slap her. I don't know this woman from anything other than the 30 minutes per week she spends with my patient. I reply, "You have heard of sarcasm haven't you??"
Holy Moly! Obviously this woman has no idea that previous to my adequately paying career (she earns equally as much!) I was in school in my mid thirties finishing my last semester on welfare, divorcing a husband with a psychiatric condition that presented itself in my third year of school just six months after my youngest child received a Fragile X diagnosis. My children are far from privileged. What gives people the right to assume things about another? Really what are they ungrateful for the ten year old dented and somewhat broken minivan the stickers are applied to? Or are they ungrateful that their mother spends her time caring for other disabled children so they can eat and have a roof over their head while she has her own special needs child at home? I wanted to scream and slap her across the face. Instead I simply said, "Really, its not literal, I tease them, and unlike others they get that its a joke!) Just like the bumper sticker along side of it that says, " I like poetry, long walks on the beach and poking dead things with a stick!" Like I have time to go around and poke road kill!
Saturday, May 2, 2009
One job down!
Whoohoo! My honey got a new job and I finally said enough to my crappy job all in the same afternoon! Life is good :) Maybe now he can get the out of the house interaction he is craving and I can get the at home time I am craving and all will be well ;) Hopefully our schedules find their way around each other. I can't wait to be home even if its to do the laundry! Also I really enjoy seeing more of my pedi patients and their families. I've missed them the past ten weeks. Wow it seems like so much longer.
Friday, May 1, 2009
Guilt..guilt and more guilt.
Well...they tried to get me to stay at my night job and I attempted it...and it made me sick. So is it wrong to leave if the place is making me sick?? Really the only reason I stayed is to help them out...and they have been shmucks. Why is it that carriers of Fragile X have that guilt that comes from nowhere? My mother has it. I always thought it was just from being raised Irish Catholic but then reading up on Frag X I found that female carriers have a common issue with guilt. I mean feeling bad about something that no one else but you would feel bad about. Like leaving a job thats treated you like dirt or feeling you are letting your coworkers down when more than likely they will forget you before your car is out of the parking lot. Or thinking you aren't doing enough for your family when really you do so much. Any other Frag X moms out there every experience such a thing.
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