Snow days, how you challenge my sanity

Snow days.  No school today or tomorrow.  Hopefully they will go back to school on Wednesday.

I posted on Facebook, yesterday, a "thank-you" to Mother Nature for the timing of this Polar Vortex (that's a meteorological term I guess). Snow days are to be expected, but two of them in a row after my kids have already been home for two weeks on Christmas break is not cool.

To which post, a teacher-friend of mine commented that for teachers, these snow days are like a two-day miracle before having to try, for eight hours, to keep our cabin-fevered children sitting still and learning.

Okay, I guess she has a point.

However, let me make these points:  She gets PAID.  Yes I get it that teachers don't get paid enough, but they GET PAID.  Stay-at-home-parents?  No, they don't get a paycheck or benefits or paid time-off ( yes, yes, I know, they "get paid in kisses and hugs" but, have you tried to pay your bills with that? Or buy groceries?).

Also, teachers have evenings, weekends, summer breaks, Christmas breaks, and spring breaks to recover from the hours they spend with our children (and I would hope they actually enjoy the job they chose and for which they get paid - otherwise, why keep doing it?). Stay-at-home-parents have NO automatically scheduled vacations or breaks.  The only "break" I get from my 24/7 stay-at-home-mom job is when my kids are sleeping, and when they are at school...IF they have school.  Believe me, teachers, our kids are home and in our care MUCH more than they are at school.

So, forgive me for being a little frustrated that my list of five dozen to-do's isn't going to get done, or even started on, today.  Even as I sit here and write, my younger daughter is sitting in a chair right behind me, waiting to get on the computer (which she of course thought about doing ONLY because I said I had things to do on the computer. Grrrrrr. And I have to turn the computer screen so she can't read over my shoulder.).  Forgive me for wanting JUST A LITTLE TIME TO MYSELF, to sit and do something without being interrupted.  Sheesh.

Later,
Jen

Because, you know, life was boring

FOR PETE'S SAKE. Seriously???

If you've read any of my past posts, you may know that my younger daughter Sophie was diagnosed with Prader-Willi Syndrome shortly after she was born. She will be 10 years old very soon, and it has been an interesting, educational, tiring 10 years. The next 10 years should prove to be even more..."educational"...if the stories from other PWS parents are any indication.

So, because life is wholly unpredictable, and because really, who wants their life to be boring and without incident, my older daughter K has just been diagnosed with "Primary Generalized Epilepsy". Wanna know where she was when this diagnosis came about?

She was a gazillion miles away, on a school orchestra/band/choir trip to Orlando, Florida. Talk about a phone call you never, ever want to get at 11:15 p.m. when your child is that far away and experiencing something that must have scared the cr@p out of her. She was in excellent hands, though - the orchestra director was on the trip, and accompanied her through the entire experience of two hospital trips and an EEG which conclusively dx'd PGE but triggered another seizure another seizure in the process.

It hurts my heart to think about my beautiful, smart, funny girl having a seizure, even when there are 3-4 highly-qualified doctors right there to help.

Sorry for the swearing but, honestly, it has been a shitty couple days. K has been dealing with severe anxiety since March of 2013; having dealt with that and turned a corner with it through meds and counseling, now she has this to accept and understand and live with. Certainly she should gain confidence from this experience! Heck she made it through this trip and the seizures and the hospital stays without her parents being physically there with her...IMPRESSIVE, without a doubt.

However...do I wish this trip had happened and finished without this added detail? Most definitely.

Here's hoping that 2014 does NOT become "The Year of The Bad Keppra Adventures". :-/

Later,
Jen

Okay, okay, I'll write something!

It's 10:38 here in my world, and to be quite honest, I don't feel like writing.  But, here I am, and yes I marched myself up here to the computer in the chilly dormer room although I would rather be under my favorite blanket reading a book. I'm not sure my writing effort for today will be worth reading, but National Blog Post Month (NaBloPoMo) will hopefully be a great way to make writing every day a habit, however bad the product may be.

So today's "prompt" is this:
"Friday, January 3, 2014
Do you have a tendency to procrastinate, or do you like checking things off your to-do list?"

Hmmm.  Can I answer this tomorrow?  Just kidding.  I have made many to-do lists in my life.  For some reason, they don't work. Possibly because the act of writing it all down feels like enough of an accomplishment and the pressure to actually do those things is no longer there? Or perhaps I am overwhelmed by the list? Actually one thing I have done, which seems to help me be able to actually check things off, is write just three of the most pressing things to do for that day on a post-it note. Preferably a brightly colored post-it. I tried this one day, and I will say that by the end of the day, it felt pretty good to have checked off those three things and thrown that note away. A smaller list, written on a smaller piece of paper...much less daunting perhaps.

However, sometimes it doesn't matter how many to-do lists I write or where/how I write them, because being a stay-at-home parent means that your "plans" for the day - any day - are largely meaningless.  IF I am able to accomplish something, anything, I count it as a mark in the "win" column and pat myself on the back.  For instance, today I didn't have a plan for the day - other than going out to get dog food, which didn't happen anyway because my older daughter was just diagnosed with "primary generalized epilepsy" and is still getting used to her medication, and I didn't want to leave her home alone. So, Sophie helped me take down the Christmas tree (taking lights out of a Christmas tree = #4 on my list of the most irritating things on earth), and I also vacuumed the first floor and upstairs. Definitely a pat-myself-on-the-back kind of day. Of course, in the process of putting the tree away, I added an item to my to-do-at-some-point-in-the-future list: throw out every freaking thing in the attic...

Later,
Jen

The constant heartache

I really try to "stay positive" and "look on the bright side" and "count my blessings", all that good stuff. I do.  And if it seems like every time I write in here, I'm NOT happy and I'm not positive and all that...well...that's tough I guess.  If you want constant happiness and bubbles and recipes and pictures of kids playing in beautiful piles of leaves, that's not this particular blog.  If I run across one like that I'll let you know.

Anyway.  Yes, most days I am thankful for lots of stuff.  However it is also true that I am pretty much always walking around with a constant heartache.  You know what causes that heartache?  It's being the parent who is the near-constant observer of all those times when my daughter-with-a-diagnosis, who also shows no obvious signs of having a diagnosis, tries to participate in activities with other children who truly don't have a diagnosis.

For example?  Today was Observation Day at Sophie's dance school. This is where the parents can come into the dance room and watch their kids' class (ordinarily we are waiting out in the lobby).  And for me, this is such a mixed blessing. Today it was a little less blessing and a little more heartache.  Sophie will never have the muscle tone or the gross-motor coordination necessary to truly participate in ballet classes.  I am thankful that this dance school is not so serious that they really mind that, right now; however, it is also a heartache to watch my girl try to keep up with the moves and what the teacher is saying.  So, YES I'm thankful that this dance school is, thus far, accepting of what Sophie can do - but, at the same time....I'm not stupid, nor am I someone who ignores reality.  And the reality is, at some point, Sophie will no longer be able to actually take dance.  Yes I know there are other options, and other activities that might be a better fit.  But this, right now - THIS is just another manifestation of this constant heartache.  I suspect this is something that all special-needs parents experience on a moment-to-moment basis, even as they are trying to put a brave face on things.

Later,
Jen

Losing "normal"...again

When my younger daughter was diagnosed with a complex, frustrating genetic syndrome shortly after she was born, part of the adjustment process was accepting that her life would probably not follow what most of us would consider a "normal" path.  Because of the demands that the syndrome would place on her, and those caring for her, those "normal" things that most of us take for granted - "typical" experiences in school, participation in childhood activities, relationships with other kids, expectations of further education/full-time job/marriage/kids - might be extremely difficult, if not impossible, for Sophie.

So, okay.  I've never been someone who felt that the only way to be happy and live a good/fulfilling life was to do the "typical" stuff (even though my own life looks pretty typical).  So Sophie will still have a the best life we can manage for her, without making lots of dire predictions.  Okay.

Well, it is September of 2013, and guess what?  I find myself once again having to accept the loss of "normal" - not in relation to my younger child, but this time with my older daughter, K.  She's 14 now.  She has been experiencing severe anxiety since earlier this year. We are trying a combination of medication and counseling for her.  It is a process, and it takes time.

She is supposed to be a freshman in high school.  I say "supposed to be", because she has only been in school for a full day one time - the first day, Aug 21 - because being there for the full day is not possible yet for her.

There are several experiences going on, here. There is her experience, of course; she is fully aware of and concerned about how much school she is missing.  She misses her friends.  There is an orchestra trip to FL that's happening over the holiday bread in December; I'm sure she is aware, as am I, that if she doesn't start to feel substantially better and get through complete days and weeks of school, she won't be able to go on this trip.  She knows this is not a great way to start out a school year.  So having those realities running through her head probably isn't too helpful - more stuff to be anxious about, on top of what she already has.

Then there is my experience, as her mother.  I never thought of myself as a high-pressure parent.  I'm not a parent who is stuck on having her kids make straight A's, go to some high-falutin' university, and conquer the world.  At this point, though, I am having to once again reconfigure even the "normal" that I had assumed was possible, obtainable, expected for my typical, no-diagnosis-necessary (I thought) older daughter.  She wants to do things with her friends - but at the moment and for the foreseeable future, she finds it daunting to even leave the house, which means that all those fun activities kids her age do - going up to the mall, going to the football game, going to Homecoming in a few weeks....may not happen, because of this anxiety.  She spent the summer, for the most part, in her room.  I would have taken her and friends to the mall, to the beach - but that would have meant leaving the house.

I feel like I have gone from having one special-needs-child with an adjusted future, to now having two kids who are having to deal with diagnoses that take them down some different paths.  Some "not typical paths".  And you know what?  Even though I have been through this once before, this process of having to reconfigure what "normal" would look like - this STILL SUCKS.  It just does.  I am already tired of watching everyone else's typical kids freely do things that Sophie finds impossible.  And now, with K, there is once again the absolute heartache of wondering what her high school years will be like and if there will be the same measure of good things in these years as there is for other kids.   I just would like those years to be, well, "normal".  I am still hoping for the best, I still know that treating this anxiety will take time, I know I must be patient, I know that what happens for her in the first few months of high school doesn't necessarily set the pattern for the whole four years - but, I still HATE this.  I hate this for her.  It still sucks, and it's not fair, and I hate that my kids have to struggle just to do the things that other kids seem to effortlessly do.

As Elder Daughter turns 12

Elder Daughter turns 12 in the next week.  She just started 7th grade yesterday.  The first day went well - although I am more than a little nervous about her ability to stay on top of the amount of homework she will now be getting, with 7 different teachers/classes!  She's taking French - her homework yesterday was to practice saying her name with a French accent.  To help her I kept asking her to say that for me...I'm sure speaking that way will feel awkward for her at first, but to truly implant a foreign language in the brain, ya gotta actually speak it!

Anyway, like I said, she's turning 12 soon.  I look at her, with her makeup and getting taller...and my brain can't help but jump forward about 10 years and wonder what her future will be!  Here is a list of all the things I wish for her:
-I hope she chooses a path for her life which not only makes her happy, but is also fulfilling, honest, legal, moral, and pays her bills!
-I hope she is picky about who she dates!  She won't be actually "dating" until she's maybe 15 or 16, which I suspect will become hard to enforce because I know B and I are more strict with her than the parents of her peers in some respects.
-I hope she grows into a young woman who is curious about the world beyond our town, our part of the country, our continent! 
-I want her to understand that just because her peers may have little or no interest in attending college, as a female in this economy/society it is doubly important that she obtain as much higher education as possible!
-I hope she grows to understand that getting married is not a mandatory choice just because she is female.  I hope as she gets older, she understands that while it is human nature to want and have relationships, it is not imperative to be married in order to be happy.
-I hope that as she gets older, she knows that it is not mandatory - just because she is female - that she have children.  If she does choose to have children, I hope she waits to do that until she has a true understanding of the sacrifices involved.  I hope she understands that the choices to get married, and/or become a parent, should be fully informed choices and not something that circumstances choose for her.
-I hope she grows into someone who chooses to read a book/take a hike/walk the dog/otherwise engage her brain cells...instead of watching hours of pointless television.
-I hope she maintains a compassionate and kind heart for those who have not had the same advantages she has been blessed with, and approaches those people/situations with which she in unfamiliar with an open mind.
-I hope she maintains a positive relationship with her sister, throughout their lives.

I could think of more, I'm sure!  By the way, I doubt K will see this post - at least not anytime soon.  I wouldn't lay all this on her anyway, it's all too 'deep' for a kid her age and anyway, I'm sure I have told her most of this one way or another.  I have to go make a "real hair-cut" appointment for her, she wants an actual style, done at a hair salon as a birthday present.
Thanks for visiting.
Later,
Jen

Prader-Willi Syndrome and Inflatables

I am consistently amazed at the things that come up, about which I never would have thought twice if I did not have a child with special needs.  The learning curve, as we weave PWS into our lives, has been one of mountainous proportions...or I could say, it is a curve as high and bouncy as the inflatable S tried to scale the other day.

The PTA for my daughters' school has, for the past few years, paid to have four huge inflatable 'things' brought into the cafetorium.  Throughout the day, each grade level has a chance to go wild and crazy on these things.  The picture below is from Google Images, but there was one of those at the school that day.
 
Now, the PTA at the school is great.  They really do quite a bit for the kids, and provide a great deal of help to all the teachers there.  So I don't have a problem with this activity being provided for the school at large, even though there are special-needs-kids in the school population who could not possibly play on these things, for various reasons.  When S brought the flyer home announcing this "Fun Day", I know I groaned inwardly and may have done so audibly as well....I just wasn't sure how S would do on these things.  Plus, even though there are only two grade levels going through at a time, we're still talking about 200 kids cycling through 4 inflatables over about an hour's time.  The noise level is incredible...there are kids moving, running, bouncing, flinging everywhere.  They all definitely have fun, but for a child with low muscle tone and poor overall muscle strength, how would this work?

So, I went up to the school Tuesday afternoon, to supervise/help her with this.  She was excited!  She has been on inflatables before so she is familiar with the sort-of-out-of-control environment that happens to groups of kids when these things are around.  So, first she lined up for this rock-wall-climbing thing; squares on the incline to put your foot on, with ropes to pull yourself up.  I told her she could try it but if she found she couldn't make it up and over, to just stop and slide down.  She did a great job trying, and made it about halfway up - but the combination of trying to balance on the footholds AND pull herself up with the rope was too much.  So that one will have to wait 'til she's older and stronger.

Then, she lined up to try this obstacle course thing...have you ever watched that show "Wipe.Out"?  This inflatable reminds me of what contestants go through on that show, on a much smaller scale of course!  
It looked pretty much like the photo above, although the one at the school had a net roof on it.  The beginning is at the left side of the picture.  As soon as you get kids moving through it, the whole thing is moving and bopping and you really have to keep your balance.  And of course, you have to be able to move fast, or you are going to get squashed by kids starting after you but landing on top of you as you both exit at the same time.  Sophie did not enjoy this one either; I give her a lot of credit for wanting to try it, but this is another one that will wait until she's a bit older and stronger!

So I told S that, for that day, she would stick the two inflatable she could go on and enjoy without hurting herself!  These were two slides which looked like the top photo, one a little higher than the other.  The other students had wait a few seconds longer for her to climb up, and then get situated to slide down, and then "dismount" at the bottom - but it went okay.  S enjoyed herself and, oddly enough, did NOT tire herself out as much as I thought she would.  I will probably have to go up to the school every time the PTA plans this activity, though - or make it mandatory that an aide stay with her the entire time, I guess.  I mean, she can definitely participate on at least some of these - but if she had not been supervised I'm pretty sure she would have gotten hurt.

Another instance of life with PWS - walking that fine line between wanting to have my child participate as much as she's able, yet also wanting her to be safe and/or wanting the rest of the world to just slow down so that she can participate.

Thanks for reading-
Later,
Jen

Still recovering

Have you ever gone through surgery, and after that you'll have friends and family say that they wish you a smooth and quick recovery?  I know I have said that to people, because I do wish that for them. 

I'm not recovering from any surgery, not literally.  I'm recovering from more a figurative procedure, where the life I thought I would live was removed, and replaced with a life that I never, ever saw coming.

I think I am still recovering from that day back in 2004, when a voice on the end of my phone line told me that blood tests had confirmed the diagnosis of Prader-Willi Syndrome for our younger daughter.  I think I will be recovering from that moment for possibly the rest of my life.

I think my entire universe shifted that day, in that moment.  It only took a few seconds for that doctor's voice to say those words...but I will forever be feeling the ripple effect from that.  In the space of a few short weeks, from the time S arrived until that phone call, we went from being your average, garden-variety parents to being special-needs parents.  I am no longer the person I was, in the early days of that year.  I don't know who that old Jen is.  I'm not sure I would recognize her.  I know I would probably take issue with large chunks of that old Jen's personality.

But, at the same time, I am still "growing into" my new skin.  I'm still recovering from the loss of what I thought life with two children would be like.  I know, it's been 7 years - that is a long time!  But the first year of the PWS diagnosis is incredibly busy.  We quickly got involved with taking S to multiple doctors, seeing county service representatives, on and on.  We were simultaneously learning about the syndrome, trying to make sure S got enough calories and was growing, parent our older daughter, answer the many questions of friends and family...simply adjust.  It was mind-numbing.  Shortly after S turned a year old, I began to volunteer for the PWS organization in my state, and that has added a whole extra layer to our PWS journey - a very fulfilling but very time-consuming level.  We have planned four fundraisers.  I have been a mentor to other newly-diagnosed families.  Believe me, I wouldn't trade any of this!  I love doing all of this.  But I will admit, that it has been an extremely busy seven years.  There really has not been much time for "just living", just breathing, just adjusting to this life.

So it occurred to me today that just possibly, I am still recovering from that moment when the PWS reality entered our lives.  Maybe that is why some days I just feel numb, or like I could just sit for hours and hours and do nothing else, not even really think about much.  Because PWS throws something new at us on a very, very regular basis - which means that even as we are still wrapping our minds around PWS, we are also still having to recalibrate our family life.  S isn't finished throwing curveballs at us, because she still has quite a bit of developing to do, so the surprises and challenges will keep coming - without the hope that one day, she'll be fully independent and will be able to handle things on her own.  So here we are, with some parts of our future with PWS somewhat predictable...and the rest of it something we'll just have to keep recovering from.

Added on to all of that, is the process of parenting an 11-year-old who looks older every day.  She'll be a teenager soon.  She'll be wanting to date, sooner than I'm comfortable with.  Someday before I know it she'll be driving.  Oh, my. By the time AARP comes looking for me, I'll be positively catatonic.

Thanks for reading-
Later,
Jen

The long day that might be tomorrow

Tomorrow is our appointment at our PWS clinic.  For those of you who aren't familiar with what this means, our clinic days are the days we take S down to our Children's Hospital, to see a team of doctors etc. who specialize in PWS.  Tomorrow we will be checking in with the geneticist who is a PWS expert, a behavioral psychologist, and a dietitian.  We may possibly also see the endo but I took S for a separate appointment with him in January, so we may just say hi to him.  I really like all the people we see; they are great humans and they really care about the kids they work with. 

However, these are not my favorite days.  I do not look forward to these days.  I will be greatly relieved if we can even get out the door without S fighting me about what she should wear.  I will be shocked if we get through the day without the "S needs to lose weight" talk.  I have to imagine that, for many a PWS parent, that talk becomes a bit inevitable.  I'm sure that various PWS parents who might read my blog, may be gasping in horror right now that we have allowed S's weight to get into an unacceptable range.  I do not fault the doctors or the dietician for telling us that we need to address the issue; that is their job.  They have charts to look at, growth curves to map out, percentiles which go strictly by the numbers and must be adhered to.  They are just doing their job.  They are going to grill me about her diet, what we feed her, how much exercise she gets.  It is going to be grueling, and we will simultaneously be trying to keep S amused throughout all this.  We will try to explain S's current behavioral challenges, and we will try to make the best decision possible as to whether a small dose of medication - Zol.oft, Proza/c, like that - is looming.  How bad does it have to get, just trying to basically live with a child with behavioral issues, before medication becomes necessary?  I don't know.  It's not something I really wanted to have to do for S.  But the truth is, it is becoming harder and harder to have her get through consecutive days, and have her mood/demeanor/personality remain stable.  And no, I don't really think these are behaviors she's exhibiting because of the food dyes/preservatives/gluten in her food or too many carbs in her diet.  I mean, if the dietician tomorrow says, "try this diet with S, I have personally seen it cause positive behavioral changes", then we'll see, but I don't really know where this is headed.  I just know that I live on pins and needles all. day. long. with her, wondering what seemingly unimportant thing is going to set her off into an epic, ugly meltdown.  The meltdowns are becoming harder to bounce back from, for both her and the rest of us!

My older daughter K, is also going to have an interesting day tomorrow.  The 4th, 5th, and 6th grade classes are taking the first part of our state's standardized testing tomorrow, with the second half for her grade on Friday.  I really am curious as to how this will go, as the math prep-book which she's been bringing home since January has been causing her a significant amount of stress.  There were several evenings where the only way she was going to get the math pages done was if B or I sat with her and coached her through the problems.  What will she do for those sections of the test tomorrow (or Friday, not sure which day math is)?  Her specific 6th-grade class has also been learning how to do a research paper.  This is complicated by the fact that her teacher, who is somewhat of a computer geek, is having them do this using computer software specifically focused on writing papers.  So, not only is she having to learn what a research paper even is, and all the parts of the process that come before writing one, she is having to learn how to use this software.  I like her teacher a lot but this was NOT a good combination, not for K and probably not for others in the class either.  What's wrong with good 'ol index cards for pete's sake??

So, I'm going to bed "early", in the hopes that I might actually sleep.
Later,
Jen

I Am "EveryParent"

I am...

• every parent who has lived through months of being sleep-deprived, living with a newborn.
• every special-needs parent who hopes and prays that other children will be kind to her child.
• every parent who sometimes is convinced her children will be in therapy, blaming mom for everything, by the time they are 25.
• every special-needs parent whose breathing actually stops when they worry about who will take care of their special-needs child, should something happen to them (the parent).
• every parent who finds the belly-laugh giggle of a child to be the most delightful sound ever.
• every special-needs parent who views their child's milestones as true miracles.
• every parent who feels consistenly guilty that their child spends too much time on the computer.
• every special-needs parent who wants to win the lottery, so that they can throw millions of dollars into research involving their child's diagnosis.
• every parent who despairs, some days, that their children will ever get along.
• every special-needs parent who feels like God gave them this particular child to teach them 1.5 million things about life (in addition to the 1.5 million things learned just from parenting, period)
• every parent who rejoices when their children learn how to read.
• every special-needs parent who suspects they may outlive that special-needs child...and their heart breaks at the thought that their older child will then be without their only sibling.
• every parent who notes it as "oh, here comes THAT phase" when their 11-year-old daughter starts insisting that you knock before entering their room.
• every special-needs parent whose spirit is lifted when their older child and their younger special-needs child are actually getting along, and being very kind towards each other.
• every parent who knows that they need to do something for themselves, in order to have the mental and emotional energy to parent well.

I am every parent, every special-needs parent, whose heart walks around outside their body every moment of the day....and who hopes the world will treat her children kindly.

Later,
Jen

Rahna Reiki Rizzuto - Right or Wrong?

Over the past few days, I have been participating in a thread over on BlogFrog, in the S.I.F. community, regarding a woman named (Rahna) Reiki Rizzuto.

Wow, I am mentally tired from that particular cyber-conversation.  It was very intense, and I think I will stay away from BlogFrog for tonight, because participating in that thread left me jittery and anxious, today.  But, I do want to write this out here on my blog, not only because this woman's story is compelling but also because the BF conversation left me wanting to clarify my own thoughts about the concept of "motherhood".  I'm not sure I can do that in one post...like I said, the conversation on BlogFrog became quite heated and more than a little complex.

Here is a link to the video of the interview with Ms. Rizzuto, which aired on March 3.  The transcript of the interview is here. And, here is a link to an article from http://www.salon.com/, written by Ms. Rizzuto herself.

The story in a nutshell is this: Ten years ago, Ms. Rizzuto went to Japan for six months, to do research for a book.  Her husband encouraged her to do this.  They have two sons, who were at that time 3 and 5 years old.  Prior to having children, it sounds like Ms. Rizzuto had not wanted to have children but her husband "begged her" and said all she had to do was have them, and he'd take care of everything.  Well, after those six months in Japan (during which it became apparent to RR and her then husband that their marriage was in trouble), RR returned to the states, she and her husband divorced, and she agreed to her husband having primary physical custody of the boys, but they also agreed on a joint custody arrangement.  She chose to find a house down the street from her ex-husband's house, she sees her children frequently throughout any given week...she ultimately feels she's a better mother now than she would have been otherwise.

There are scads of people ready to rip this woman apart, for the choices she made.  She's been called a crappy mother, a poor excuse for a parent, a terrible person, a terrible woman, a money-grubbing author using her children - and her presumably awful decision to have their own father be the full-time parent (gasp!) - to make a buck.

I do not think that the choices she made mean she is a bad person, or a bad mother.  She did not, as many are accusing, "abandon" her children.  She ultimately spends about the same amount of time with them, over the course of 7 days, that many working fathers spend with their children.  Her children seem to be living in a arrangement which, while different from the status quo, still leaves them supposedly well-cared for by their father, their step-mother, and their mother who lives down the street.  I think the fact that a woman willingly gave up the primary caregiver responsibilities for her children is what has everyone gasping and condemning her.  Because women aren't, I guess, supposed to want anything other than to have children and then lose their entire identity in those children.  Because it is apparently unforgivable (even though her ex-husband begged her to have children, even though he obviously knew she wasn't the motherly "type") to expect that a child's father should ever have to do the day-in, day-out nitty gritties of parenting.  It is apparently unforgivable to think that perhaps women might want what men have had lots and lots of, throughout history - the freedom to have children and then go back to their regularly-scheduled life.

Now, understand that I do know that parenting is a commitment.  I do believe that the very moment a man and a woman decide to be intimate, let alone decide outright to have a baby, their first priority becomes the child if one is conceived.  Even if they get divorced, that priority doesn't change.  But I don't believe that becoming a parent nullifies who someone is as a person, or who they were before children.  I believe women have value as humans first and foremost - whether or not they ever have children.  I believe that if a woman has God-given talents and skills (and yes I do believe those come from God), she is required to explore those talents.  I believe that parenting children - while one of the most important jobs God gave humans - was never meant to be a women-only pursuit, and I believe that both women and men can be wonderful primary caregivers. 

I hope, if there's anyone reading this, that you will take the time to click on the links above. What you'll read and watch/hear tells at least some of her story, better than I can.  Also, if you belong to BlogFrog, you can find the thread in the S.I.F. community, titled "Leaving the family she never wanted. Reiki Rizzuto".

Thank you for reading!

Later,
Jen

Let us not buy socks...

...which are so similar in size, style, and color,
that it will cause a huge fight
at eight-o-clock in the morning,
about whose sock is whose,
because it fits this foot or that,
and she doesn't HAVE a pair like that,
and YES I DO,
until all a parent wants to do
is take said socks
and hide them
in the deepest, darkest, spidery-est
corner of the basement,
and then it is what socks? never heard of 'em.

Later, after a martini,
Jen

[set to auto-post at 4:00 p.m. 2.23.11]

When I exhale

Do you remember that movie, I think it came out in the mid-90's perhaps, it was called "Waiting to Exhale"?  I liked the movie, but the thing that has really stuck with me all these years is not the movie's subject but its title. 

"Waiting to exhale".  What does that phrase mean?  I think it means that moment when circumstances in one's life finally ease up - there's money in the bank, or one's body is finally healthy again, or a troubling relationship is either resolved or in permanent, soul-easing disconnect....that moment when the weight which has been hanging over your head like a 9,000 pound anvil, keeping you constantly on edge, finally disappears.  And, having been taking short, panicky breaths for hours/days/years, you finally feel like you can fully breathe in...and fully, totally, exhale.  The stress melts away from your neck and shoulders, your mind empties for a moment, maybe even you sit down and just sit, and think about absolutely nothing...because God knows your thoughts have been running a mile-a-minute for what feels like eternity.

Do you know when I exhale, on a day-to-day basis?

When my child-with-special-needs is either in the competent care of someone I trust, or when she is finally in bed.  When I finally, after a long and emotionally draining day, have a moment to myself to just sit, just think about nothing, just be.

I have to imagine that many parents who have children with special needs may have this same brand of "exhale moments".  This is especially true when the child's diagnosis-based behavior issues are becoming or have been severe.  Moments like these, when the primary caregiver can "exhale" even for an hour, are also called "respite".  Not every parent of a special-needs-child is able to obtain respite, and some who can easily get it, through social services of one kind or another, may even decide they don't need it.  But, bluntly speaking, most special-needs parents probably do need respite assistance, and they should always, always use it.

And with all due respect to parents everywhere, please do not tell me that parenting my special-needs child is just like parenting any "normal" child - it isn't.  I have one of each - a child with no diagnosis or special need of any kind, and one with Prader-Willi Syndrome.  My "normal" child is the older of the two - by 4.5 years - so I was very well aware of what parenting a "normal" child looked like, before S came along.  I know for a fact, from second-by-second experience, how very much different it is to be a good parent to S compared to my first 4.5 years of parenting.  While I do breathe a bit easier when my older child is finally in bed, it is in NO WAY the same kind of "exhale" I experience once Sophie is finally in bed.  Parenting S is a daily emotional roller-coaster.  I am almost literally on the edge of my seat, for all the minutes and hours she is at home and awake, not knowing what is going to happen with her next.  Is she going to have a planet-sized meltdown about food, about something, about anything?  Is she going to go use the bathroom, and end up sitting there picking at her skin if I let her sit too long?  Is she going to spend the remainder of the day being exceedingly nasty to me - just because that is part of the PWS behavior issues and for no other reason?  She is 7 now, so this is no longer about "it's just a phase" or "it's the terrible twos" or "it's the terrible threes".  No, this is part of Prader-Willi Syndrome.  Her tantrums can be epic,.they can poison the atmosphere of the entire house (although she seemingly recovers with no residual effects). Her PWS-based behavior issues can be extremely unpleasant to be around, and that is not going to change without medication, I believe.  I have been in contact with enough parents who have (even just slightly) older children with PWS, to know that these behaviors are part of the syndrome.  So they are here to stay, it's not a phase - or, even if it lessens somewhat, I'm aware that changes in the body or changes in routine or changes in circumstance can bring it on again.  It is probably a bit like living with someone who, at the drop of a hat and for no obvious reason, turns on you and becomes verbally abusive.  S can and does turn on me, the syndrome causes her emotions to swing from very loving to just plain mean - and she's only 7.  I am her primary caregiver, I am with her more than anybody else including her father.  I am on the recieving end of whatever mood she's got going, and while I love her and know she's a gift from God, this drains me.  Although I expect that I will outlive her, I have many years ahead of me of trying to figure her out, trying to anticipate/head off if I can, the things that set her off. 

I have many days ahead, of waiting to exhale.

Later,
Jen

AAAGggghh, clothing for the 11-14 year-old girl

Hello all....Happy Valentine's Day!

Well, the Father-Daughter Dance is this week, and my mission between now and then is to somehow find a suitable dress for each of my daughters.  In addition K has been told by her music teacher that the 6th grade girls will get extra credit if they wear a dress to an upcoming Art/Music concert at the school.  Finding a dress won't be too difficult for S, but for K, who is now 11....sheesh.  This is difficult!  Her favorite store at the moment is J.ustice.  We went there a week or two ago, and while they did have a dress, she didn't like it - I don't remember the exact details but it was probably too pink, or too frilly, or too flowery, or too.....yeah...too girly.

Now, don't get me (or her) wrong, she's all about the girly stuff.  She loves painting her nails, now has her ears pierced twice, likes to smell pretty, is jones-ing to wear makeup, it is taking her more and more time to get ready to go somewhere, all that stuff.  But when it comes to clothes, she is NOT into anything that at least I would describe as feminine.  No dresses for everyday wear.  No basic cardigans - has to be a "hoodie" preferably black.  No knit leggings-as-pants anymore, has to be yoga pants, jeans, or "jeggings" (basically skinny jeans which are also stretchy). 

Just shopping for basic clothing for this age bracket is, in my mind, made more difficult because of their age.  They are too old for some things, or wouldn't wear that stuff anyway because in their mind they are actually 15 and not 11, and need to dress accordingly.....not happening.  Because, if I let K dress the way she thinks she should/could be dressing, well I doubt her choices at this point would be appropriate.  And then, they are too young for many of the clothes which are being marketed to their age bracket!!  We went to a local department store about this time last year, once again looking for a dress for this same dance.  And the dresses...wow...can we say inappropriate, can we say dresses for a 25-year-old woman on a bender, can we say I would not ever let her wear these??  It's a challenge to find a decent dress, these days, for an 11-year old girl; what the "popular" clothing market produces is often not really a great choice, and yet what I would find decent, she won't wear because she is basing her likes/dislikes on what the clothing market is pushing.

Maybe I should learn to sew, and just make all her clothes?

Ummmmm....welllll.....

Later,
Jen

Closing that door?

So I had a plain ol' doctor's appointment the other day, and as we are chatting about this and that, and she's going over my medical record talking about medications and such, she asks if we are planning to have any more children.

I automatically blurt out, oh, no I don't think so.  And we move on to other things.

I'm 38 years old. At this point, were we to have another baby, I would be in the "high-risk" category, perhaps even more so because of the genetic syndrome S has, and how she arrived (quickly, in our kitchen, with little/no labor).  So there would a higher level of concern to deal with, as to the health of the baby and my health and so on.  We did consider another child, about two years ago....and it just about sent me into an absolute panic!  At that time, B insisted he was fine either way - another child, or keeping things the way they were; now he says (and I kind of agree!) that we are getting too old to handle having another baby in the house.  Plus, I don't know where we'd put another child! Each of our kids has their own room now, and I don't know that they could sanely share a room - they aren't even that successful with just sitting in the same room now, as there are behavioral aspects of S's syndrome which K does not yet fully understand, and which drive her crazy.

So anyway, my 'clock' is ticking away, and my instantaneous answer to my doctor's question about more kids is now giving me a moment of "hmmmmm".  I mean, I truly don't feel a huge desire to have more children.  At the same time, isn't it difficult to really, truly close that door (or let nature close it, I guess I should say)?  To really put that possibility aside, once and for all?  I have to say it gives me a twinge of unease to really accept that that part of my life is over and done with.  Being pregnant was just a fantastic experience.  Both kids' births were amazing and incredible experiences.  And while adjusting to parenthood almost lost me my sanity, I wouldn't change it.  So it is somewhat difficult to answer the "more kids" question definitively, to really close that door and accept the idea that having more children would probably not be a great choice for me, or for us. 

How do some people seem to know that their family is not yet complete?  You know, when a couple already has a few children and you're thinking "oh, they're done having children", and then one day they say they're going to have one more "because they just felt their family wasn't complete yet"?  For me, part of the reason I changed my mind about more kids after we had our first child was because I wanted her to have a sibling.  And then S came along, with the PWS diagnosis, and our entire world turned upside-down and inside out, and we have this whole new life to which we needed to adjust.  We no emotional or mental room for considering the size or completeness of our family!  And now, sometimes I find myself thinking, what if K needs someone to help her care for S someday?  Or even beyond that, what is S's life is shortened because of this blasted syndrome, and K finds herself somewhat alone??  That thought just tears me apart inside.  That thought just makes me hate this PWS all the more, because complications of this syndrome will not only affect S's health, but will affect S and K's lives as sisters.  I love my sisters.  They are such a huge part of who I am, and it just breaks my heart when I ponder that someday, K might not have her sister...or any siblings.

So this "any more kids?" question, is so loaded with extra meaning and significance for me.  I kinda wish God would make it really clear that not having any more kids, and investing myself fully in the girls I already have and being a good parent and not worrying about their futures, is the way to go.  The clock is ticking.

THAT question

Well, it's actually not a question....it's more of An Uncomfortable Conversation I'd Rather Not Have With My Six-Year-Old.  I'd much rather put it off until she's maybe sixTEEN, when there's a better chance she might understand my answer.

S has pretty much always been into baby dolls.  She has two baby dolls and two Bitty Twins, and her collection of "baby-doll-paraphernalia" grows with each Christmas and Birthday.  These are the only toys she plays with consistently.  S also pays a great deal of attention to those women we see, when we're out somewhere, who are pregnant.  And, if the pregnant woman happens to be someone she actually knows - for instance, her initial kindergarten teacher was pregnant at the beginning of that school year, and I think that was S's first instance of being that 'close' to a situation of pregnancy - then her interest doubles.  As with other children-w-PWS, her sense of personal boundaries, and social correctness, is sometimes questionable - so at times her interest in pregnant women, or babies, is definitely uncomfortable for me, if not for the person she's staring at.  Yes, I know she's only 6 and a small amount of this is "natural".  The difference here, between S and her peers, is that her interest baby dolls and babies and pregnant bellies will likely last long past the point of being "appropriate for her age", and perhaps will be a hobby of sorts which she carries into adulthood.

Why?

Because I don't think S will be able to have children of her own. 

That is the "question" I refer to in this post's title - the "will I have babies, Mama?" question.  Up until yesterday I've been able to successfully dodge the issue and not truly answer that question.  I think it's fine that she plays so convincingly with her baby dolls, but I have to confess, when she pretends she's "pregnant" and says there's a baby in her belly, I cringe.  Yesterday as she was getting into the bathtub, she did this again, and she of course noticed my reaction - because I've had that reaction before.  So we got to talking about this issue, of her having children.  Now, as I said, she's only 6 so there's a great deal about the whole process of having babies which I of course would not go into with her.  But she's becoming more insistent on knowing why I don't like her pretending she's got a pregnant belly, and so last night I finally just told her, "I'm not sure you'll be able to have children".  In answer to her "why?", I simply said, because of the Prader-Willi Syndrome she's made a little differently, and that grown-ups with PWS are usually not able to have children.

Now, let me say here that that last statement is not precisely true.  There are just a few known cases of an adult woman with PWS giving birth, so physically speaking, it is not impossible.

But....however...at the same time....

We all know there is so much more involved with having a child than simply the physical side of it.  At some point I will, hopefully, be able to help S understand that while her body might be able to "grow" a baby, there are entire pieces of her emotions, intelligence, and brain which are probably not equipped to handle the rigors of actual parenting...you know, the day-in-day-out, mundane, stressful, complex management of a relationship with another person who depends entirely upon its parent for protection and sustenance, etc.  I know that when S was first diagnosed, we had to adjust our assumptions about her future, and understand that S's life might not include children of her own.  At the time, it wasn't a huge deal, because it wasn't the biggest issue we had to contend with.  But as she gets older, and it becomes clear that she's pretty smart and thus might also be pretty observant, I'm wondering if she will become increasingly sensitive to the ways in which her life path might not exactly be able to mimic that of her peers.  She's understanding more about the syndrome itself, and I hope and pray that as she grows up, she'll also grow to understand that she'll have a good life, and have people in her life who love her, even if she has to do things a little differently.

Later,
J.

My own eating habits? ummmmm....

In my post from yesterday I did a little ranting about food issues, specifically about parents who dislike the fact that our gradeschool has a new policy about providing healthy snacks/treats for birthdays and holiday parties.

But, can I just say, that my own eating habits have gone down the toilet since I've had kids??  And that they've probably gotten worse since the entrance of Prader-Willi Syndrome into our lives?

So really, I probably shouldn't be very judgemental of these other parents who are upset that they can't provide junkfood for their child's classroom, because God knows I make poor eating choices for myself all day long.  Especially after my kids are in bed, because then I can eat whatever I choose without feeling guilty, or having to 'hide' it from S.    That has been a consequence of the PWS diagnosis:  it has definitely influenced what foods I feel I am entitled to eat, since I feel I sort of  'deprive myself' all day long for S's sake.  It's complicated, and of course I may very well have gotten to this point even without having to adjust to PWS. 

I guess when it comes to this subject of what kinds of snacks or treats our kids eat at school, in the context of school parties especially, I am perfectly okay with a school district saying "enough already" and placing some guidelines about what parents can provide.  I've been in K's classroom enough times, and seen what kinds of food they are given to eat (quickly) before getting ready to go home, to dread these scenarios for S.
 
Because what am I supposed to suggest as alternatives for her, when these situations come up next year?  Keep her out of school that day?  Find some way for her to not be in the classroom for the eating part of the day?  Pick her up early, and make it obvious to her and everyone else that she's missing part of the activities? This is the very, very fine line that PWS parents have to walk:  to what extent do you allow the syndrome to influence the mainstreaming of your child's education?  I want S to have an educational experience that puts her with the other students as much as possible - but not if that puts her in an unsafe situation, where she eats foods that cause her to gain two pounds in one day.  And not if being around that kind of junkfood causes her so much anxiety that the day isn't fun for her anyway.  Last Friday in her classroom, they did do some Halloween-type things, and she wore her costume to school (I have to try and convince her to pick a non-dress costume next year - I was having waves of anxiety, thinking about her going up and down the stairs with that thing on!).  But just the change in the regular routine was enough to unsettle her, and I could tell she was out of sorts when I met up with her after the little costume parade they had.  I'm glad she is able to participate in these kinds of situations...but that's now, when the "Extreme Junkfood" school parties haven't even started yet.

As for me and my poor eating habits...tonight I've had ice cream, and now I will have to exert some extreme self-control to keep out of the Halloween candy.  S. does still go trick-or-treating, only because a)she's cognitively able to want to participate in the whole thing, and b) she generally forgets about all the candy once I've put it out of sight.  I, however, need to stay out of the candy...eating this late in the day is especially bad!

JB

I never signed up to do this alone

Today B. was supposed to be at a retreat with the Vestry from our church. He decided to not go, letting the priest know via voice-mail that "his wife is sick and he needed to stay home with the kids."

Physically, I am fine (except for my left foot, which I injured 2 weeks ago and is still causing quite a bit of pain). Emotionally, and probably mentally, I am definitely not fine. I am not fine with feeling like a single parent for most of any given week. I am not fine with the fact that B. works/is gone for work about 65 hours every week, and then because of this church committee was gone at least 36 hours last weekend and would have been gone for a large portion of today. I am not fine with the fact that, in essence, I do a lot of single-parenting even though I am married, my husband is not deceased nor too ill to parent. He's just.....not here, and the amount of time that he's not here is much, much more than he is here. I've had enough of it. I don't do anything outside of childcare/housecare at the moment. Well, I am involved in the state chapter for Prader-Willi Syndrome....I'm sure most would say I'm very involved, what with being its President, attending at least 3 board meetings a year, and planning a large yearly fundraiser. But those responsibilities take me out of the house only a very minimal amount compared to amount of time B. is away from home/not responsible for what happens here, and I don't get a paycheck for any of the many, many responsibilities I have, whereas he does.

Now, don't come at me with the "Oh, but raising well-balanced, well-adjusted children in a happy, cozy home should be reward enough in itself. Who needs a paycheck? Your children will thank you down the road for providing them with such a happy childhood" nonsense. How many children really grow up and go back and thank their parents for anything? I had a good childhood too, but it didn't have much to do with any ooey-gooey sappiness provided by my parents. They provided food, shelter, lots of siblings, and as good an education as they could afford - for which I truly am thankful - and felt they did their job. All of which probably explains why parenting just doesn't bring me lots of fulfillment, sad to say. Probably, if I had known myself better 15 years ago, I would have gotten a master's degree, become a workaholic for 10 years, and maybe decided to have children around 38 years old. Marriage would have been in there somewhere, and the house - but kids would definitely have waited.

I do love my children. They are wonderful kids and I am fully aware that B. and I have been blessed immeasureably by having them in our lives. If I could go back in time I wouldn't change having them, I would just change the timing of when we decided to have children. The advice I will pass along to K. (because I'm not sure what lies down the road for S. in these areas) is to get all the education she wants before she even begins to think about having children. Go to school, get your master's degree, work for at least 5-8 years - and then get married. Wait two years, and then have children. At least in that scenario, presumably both she and her spouse will have incomes such that reliable daycare can be paid for, if she continues working (because, of course, in our society there is never any doubt that the man would continue working!!!!!).

So anyway....do I feel bad that B. skipped this meeting today in order to stay home? Well, yes and no. He's the kind of person who fulfills these kinds of obligations and I know he probably did not feel 100% positive about skipping it. On the other hand, I never signed up to do this alone. We never sat down, when we got married, and talked about issues like this, i.e. how much outside activities are okay given the work schedule one/both of us might have. Or, which one is primarily responsible for childcare - husband or wife - and who is more of just a helper. I never, ever said that I was perfectly fine being the one who stayed home all the time with the kids; the only reason it has worked out this way is a) B. happens to have the job which brings in the money, and b) I did not get any kind of career going before K. came along, so obviously my job was the one that fell away when our two schedules didn't jive anymore. I am not happy being home all the time. I can't tell you how many times I and the kids have been in the car going somewhere, and I've thought to myself, if I didn't have kids there is no way I'd be going anywhere at all, let alone to wherever we were going at the time!!! We've trekked to activities countless times (especially lately) in bad weather, because the activity wasn't cancelled and we'd paid already, and I would have that thought. There just isn't any balance of responsibility in the parenting area between B. and I. And it's not that he avoids it, or thinks it isn't his responsibility! He's not one of those chauvinist guys who thinks "that's not my job" when it comes to childcare. He changed diapers just like I did, and when we get into conversations about this he usually, eventually says "I'd trade places with you in a heartbeat". Which is obviously not going to happen, since there's no way I could just go out and get a job that pays me what he currently makes. Plus, I'm not sure he'd truly enjoy being home all the time.

Well, my fingers are freezing and I've typed enough for now.

J.