Tuesday, January 31, 2012

"The Video"

In our school district, the public schools begin their "family life" education in 4th grade.  The girls - only the girls - meet with the school nurse, watch a video, and learn the basics of how their bodies will change in the next few years.

S was in a private school in 4th grade, so she missed this experience.  None the less, lucky for her, this is a multi-year program! Each presentation reinforces the last one and builds on it in an age appropriate manner.  In 5th grade, her first in a public school, I picked her up one day after school and this is what happened:
S: (waving a paper in front of my face) I don't want to see it! (imagine the horror on her face, head shaking back and forth, me wishing I really had a video of the whole thing)
Me: See what?  What is that paper?  Is this something we can discuss after you stop waving that thing around and get in the car?
S: It's the permission slip for "the video" and I don't want to see it!
M:  Okay.  Well, what exactly do you think you will see in this video?
S:  I don't really know, but I think it has something to do with science and I'm not very into science.

I tried very hard not to laugh.  I really did.  I think I was able to keep it to a smirk and a giggle.

It is sort of science-based, I guess, being about biology and all, but clearly we needed to have at least an introduction to "the talk."  I realize that some will be critical of the fact that I wasn't having these discussions with her slowly over time from the age of 2.  To that I say, "To each, their own"

I reassured her that she would not die a slow painful death from seeing the video but that she was, indeed, going to see it.  I went to the parent preview night, saw the video, and then told her everything that would be in it so there would be no surprises.  When I picked her up the day of "the video," she got in the car and said, "I saw the video today."  "So, how did that go for you?"  S says, "I just want to pretend like it never happened."

Well, that might not work out so well for you, my dear.  There is only one Peter Pan and unfortunately, that role was already taken by Cathy Rigby (just dated myself right there) or maybe it was Sandy Duncan (now I'm feeling really old).  You're going to grow up, no matter how much you don't want to and no matter how much I don't want you to.  Never the less, S survived the ordeal and managed to complete 5th grade.

Last year, in 6th grade, we had the same situation.  I went to the parent preview and she saw "the video" and lived to tell the tale, even though her response was consistent, "Can I just forget I ever saw that?"  Believe me, it wasn't that bad, nor was it graphic in any way, so I don't know what, exactly, she thinks she should forget.  I can't wait to hear about 7th grade.  The boys and girls are together in the class this year and it is a week long unit in their science class.  Oh to be a fly on the wall...

Now, K is in 4th grade and the permission slip was sent home.  I sent it back, declining to have K participate in the presentation.  Why?  It's not because I've had the discussion with her already.  She is a completely different kid.  Not only do I think that she's not quite ready to wrap her head around how those things might happen to HER, but my bigger issue is this:  once she learns it, she will tell everyone who crosses her path what she saw.  This will be big news to her!  Wow!  I learned something amazing!  I want to share it with the world!  So why don't I tell her that it is not something we talk about with lots of other people?  Why don't I show her the boundaries and make sure she understands? Because this is what happened the last time I tried that:

Driving along, listening to the radio and Katy Perry's California Gurls is playing.  There are some questionable topics in the lyrics, but they fly right over my girls' heads, so I don't worry about it.  However, Snoop Dogg has a part in the song and he raps, "All that ass, hangin' out."  S knows that "ass" is a bad word and not to say it.  I thought K knew this, too, until she's singing at the top of her lungs in the back seat of the car.

Me:  K, Snoop Dogg says a bad word in that song.  It is "ass" and I don't want to hear you say it or sing it, okay?  You can just be quiet during that part of the song.
K:  Okay, Mom.  I won't say "ass."

Then, for the next 368,472 times that we hear that song, K says, "Snoop Dogg says a bad word in this song.  He says "ass" and we're not supposed to say that."  Seems like even with the rules, I couldn't get her to stop saying the word!  Imagine how mortified I was when she did that in front of her grandparents.  Don't look at me!  I told her it was a bad word!

For now, I'll leave the family life discussions with K for within our home only and when I think she has matured enough to keep it to herself.  S would like to skip puberty all together, while K would probably want to race right toward it - telling everyone along the way about the journey.  I can just picture her announcing at a family gathering that she's getting breasts and then lifting her shirt to show them off.  Right or wrong, I'm not ready to tell her not to talk about it thousands of times. Lucky for me, she would normally be in the learning center for tutoring during that time, so I can just tell her that it was more important that she work on her math...and we'll talk about "the video" later.

Thursday, January 26, 2012

The Good Stuff

Yes, it is challenging to have an extra-special kid and it's challenging to have an extra-special sibling, but it's not all bad.  There are some really great things about having an extra-special kid in the family.

For example, S may want everyone to think she is too old to play with her dolls and Barbies, but secretly, she still likes it.  K gives her the perfect excuse.  K can play Barbies for hours, happily!  I think Barbie may be my best friend, given her ability to keep them occupied for any length of time. S can always tell her friends that she had to play Barbies with her sister, followed by the well-rehearsed eye roll.

K gives us all sorts of reasons to slow down - a concept that is sadly lost most of the time in our society today.  She is always the last one finished at the dinner table, but that's a good thing.  She reminds us that no matter how hectic our day has been, dinner time is one time during the day that we can all slow down and enjoy each other's company.

K has forced me to be a creative problem solver.  She's very sensitive to loud sounds and it is worse because her auditory processing disorder makes it impossible for her to filter out the extraneous noise to focus on the important sounds.  After our first trip to Disneyland when she spent the entire week with her fingers in her ears, I figured I better find a better alternative.  Am now buying stock in the company that makes those little foam earplugs.  She prefers them in hot pink.  Whatever.  I just like that when I go to a movie, I don't feel like my eardrums are going to explode with the special effects of the movie (we all use them now).  Never would have thought of it before!  We are all more comfortable and heck, I might be able to avoid the old age hearing loss longer.

Speaking of Disneyland, K is a big fan.  I mean, a REALLY big fan.  We tend to vacation there more often than anywhere else.  Why (aside from the obvious that it is the happiest place on earth) does she like it so much?  She loves everything about it, but the most important thing that she loves is that it is comfortable.  She knows what to expect.  Her comfort makes the entire travel experience more fun for all of us.  Because of K, we have explored lots of parts of Disneyland that we might never have done if we hadn't been visiting there regularly.  That's not to say that we cater all our travel plans around K.  She's not that rigid and she likes to do new things, too.  However, when it comes down to a vacation that we can all enjoy and depend on, that's a good one.

I've mentioned before that K tends to linger in the ages and stages of life longer than S did/does.  As the mom, I appreciate it because I don't have to watch her childhood fly by in the blink of an eye.  As a family, it really keeps things fresh for us.  We watch movies we may have skipped, read books that might not have looked appealing, and color outside the lines a little more often.

Most of all, having an extra-special kid in the family reminds us regularly that honesty, integrity, and good manners are gifts.  She makes us laugh all the time. Often she doesn't realize what she does but it keeps us laughing all the same.  K's challenges keep us all on our toes as we navigate this road together.  In the end, I think it makes us a stronger family, a closer family, and a grateful family - grateful for each other.

Tuesday, January 24, 2012

The other one

It occurs to me often that it has to be really hard to be the sibling of an extra-special kid.  I think it is especially hard to be the older sibling of an extra-special kid. S is a 12 year old 7th grader.  I think that most of us remember those turbulent years of middle school - the self-consciousness, the budding self-awareness, the beginning of awareness of others (okay, let's just say it - boys), the straddling of wanting more independence, but not being sure about it.  It's an interesting time for anyone.

I know to expect that S will think that life's not fair, we like her sister better than her, and we are the meanest parents on the planet because "all of my friends" have or are doing xyz.  What I think is heightened for an older sibling of an extra-special kid is that perception that we really do like the younger one better than the older one.  It's easy to see where S could get this idea.  She was 2 when K was born, so by the time that she really started forming lasting memories, I was beginning to investigate this mysterious "something" that didn't seem right with K.

And S is extra-special in her own way.  Not special needs, but boy, oh boy, can she be high maintenance!  She's been that way since she was born.  Born 5 weeks prematurely, she spent 18 days in the NICU.  We would go to the hospital to be with her and come diaper changing time, she would start wailing like we were sticking bamboo shoots under her toenails!  Every other little preemie in there was just quiet or making small, little, kitten-like cries.  Once we brought her home, I'm pretty sure we didn't put her down for the first 7 months.  There were times when I had exactly 8 minutes to get a shower because that is only as long as she would sit in the bouncy seat before going ballistic.  Although high maintenance, she remains a keen observer of life, a grounded girl with good values, extremely close to us in her family and while she has an intensity about her that occasionally holds her back from new experiences, her ability to love the people in her life has no limits.

S has grown up with the expectation that K's needs will come first.  It isn't exactly true in our hearts, but in practical application, it kind of is. That is not to say that we like K better than S.  We have to be practical.  K requires more "stuff" to get her from point A to point B.  With S, I could just send her to school and know that she'd come home with homework and go back again the next day.  It has never been that easy with K.  Yes, our lives do often revolve around the things that are needed for K.  Yes, I do have to manage their schedules and K's schedule sucks up a lot of our after-school time.  S knows that if I can't be two places at once, I am more likely to find someone to take up the slack with her than I am with K.  What she doesn't realize is that I make that choice because I can.  Because of S, I have become good friends with the parents of her friends.  It seems to happen that way with the first born.  It's not that I don't want to take care of S, it is that I know I can comfortably call on someone to help me out with her because I simply know those folks better.  If I'm honest. sometimes I'd rather just take care of S and skip all the extra stuff with K, but I don't have that same luxury with K.  I simply haven't quite developed the same relationships with the parents of K's friends.

My challenge as a parent is to temper my expectations with the person that S really is.  There are times when it is so hard to be patient with her, especially when she is being nasty with K.  There are times when I want to tell her that I expect her to intervene for her sister, stick up for her sister, help her sister.  I struggle with this one.  I want her to be caring and sympathetic, in general, and in particular toward her sister, but I also don't want to burden her with the responsibility of taking care of her sister.  It isn't her job.  I tend to demand more from her because the demands on me are so much more and I think she is up to the task.  S is an individual with her own needs and for her entire life, much of our household has - and will continue - to revolve around K's needs.  She doesn't necessarily see her sister as extra-special.  In fact, sometimes I think she sees K as extra-specially annoying, if anything.  I can't blame her for that!  K does have a gift for the drama and can be extra-specially annoying.  None the less, S is living a life in a family where the scale isn't always balanced.

These days I try to remember that even when S isn't living up to my ridiculously perfect expectations (my problem, not hers), it is because she really doesn't see her sister as extra-special.  She treats her sister the way I generally hope everyone will treat K - like she isn't extra-special.  S knows K has her weaknesses and she knows K's strengths too.  Just like any other sibling would do, S can manipulate both to her advantage.  She loves her sister, though, and that is never more evident than when they are playing together in harmony or she is guiding K during playtime with other friends.
It is up to me to remember a bit more often to see K as S sees her - not extra-special, just special in her own way.  S really does set the example for me.  Good or bad, she doesn't treat her sister any differently than she would if K wasn't extra-special.  That is a gift.  S sees beyond the extra-special parts.  I need to do that a little more often, too.

S is a great kid and whenever I am asked who is learning more - me or her - the answer is, undoubtedly, me.

Tuesday, January 17, 2012

Blessing or a Curse?

A friend from a special needs online community posted a link this morning referencing statements made by a politician in Virginia.  Bear in mind, the specific comments were made nearly 2 years ago, although I doubt his opinion has changed much.  The premise was that he believes that if a woman has an abortion, subsequent children born of that woman will have disabilities. 

The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children,” states Bob Marshall, a delegate to the State Senate of Virginia.  

I think my response to my friend was that he is a total, delusional jackass. 

I could go on and on about why this particular person is an affront to conservative politics and Christians, but I don't want to focus on that.  What really gets my blood boiling is the fact that he implies that a child born with "handicaps" is somehow a punishment for having an abortion.  Even if his statistics about that are true (I have no idea if they are), it is his prevailing attitude that bothers me.

In the subsequent damage control article/video, he goes on to say, “I never mention God punishing women,” Marshall told us. “I talked about ‘nature’s vengence’ and I regret those terms. I should have said ‘natural consequences.’ It’s just like somebody who drinks alcohol to excess and gets a liver problem. You can’t blame God for that. You did it to yourself.”

Bob, that doesn't make it better.  To imply that 1) disabled children are not a blessing, but rather a punishment or "nature's vengeance" and 2) if a mother made better choices, she could avoid this punishment is brutally offensive.  I never had an abortion, but I have a child with special needs (the term I prefer over "disabilities" although that is an accurate term, too).  So, for what I am being punished, Bob?  Bob, you are an idiot - which is a nice way of saying "total, delusional jackass."  

It is not easy having a child with special needs.  It does not matter if the needs are severe or mild; it does not matter if it is physical, neurological, psychological.  The fact remains that it is not easy, it is not the road that any parent prepares for or expects.  It is challenging, difficult, sometimes depressing, exhausting, and occasionally, defeating.  Some might see that as punishment or a curse.

But having an extra-special child is to know someone inspiring, insightful, and honest.  It is learning things you never dreamed of learning and finding that you are capable of more than you thought.  It is slowing down to appreciate the small achievements and milestones in a world that measures success only by your personal statistics - SAT scores, job title, income, number of activities your child is involved in.  It is marveling at the fact that your child works a zillion times harder to master things than you ever did, and remembering that overcoming obstacles is a daily endeavor, not an occasional bump in the road.

Having an extra-special child is a blessing.  Bob, God knew what He was doing when he gave you children without disabilities.  He wasn't rewarding you for all your so-called perfect choices.  He knew you would not be up to the challenge and would be incapable of appreciating the blessing of a special needs child.  Thank you, Bob, for the reminder that I really am up to the task because it never, ever would have crossed my mind to think I was somehow being punished.  I might question whether or not I can handle all of this on some days, but I know that my daughters - both of them, extra-special and not - are joyous blessings in my life.  I may be challenged, but I am not being punished.  I still don't know what I'd be punished for anyway.  I didn't choose this road, Bob, it was given to me with the confidence that I could handle it.  I can, I will, and my life will be all the richer for it.  I might even have learned something of value that could be passed along to another, to provide some help or guidance based on experience.  I'm lucky!  I am a much better, more compassionate, more patient, more educated person than I would have been if I hadn't been "punished" in this way.

***I am not interested in a discussion of politics or religion.  That is not the purpose of my blog entry today.  It is simply the example given to me that spurred the rest of my thoughts.***

Friday, January 13, 2012

Fingernails on the Chalk Board....the Sequel

I was reflecting on my last post.  Not sure I'll ever be comfortable with the bickering, but as I write this, my girls are playing together, having a blast and would rather do that than sort the laundry, so all is well.  Hey, maybe that's the answer!  Give them a chore as an alternative to arguing and the arguing will go away!  I'll have to remember that...

Anyway, in reflecting on my last post, it brought up a few other things that sound like fingernails on the chalk board.  I know these bug the crud out of a lot of my mom friends, so I'll list what I know.  Feel free to add your own to the list.  I know there are more.

1.  In response to being asked to pick up something that is on the floor or table or counter, "It's not mine."  This could be the very shirt off her back 15 minutes ago, but all of a sudden it belongs to her sister, so she doesn't have to pick it up.  Don't ever ever ever say this to a mom.  I spend most of my days picking up things that aren't mine.  If you're going to try that excuse, I'm the wrong person to try it on.  ***squeak*** one trip down the chalk board.

2.  "I knnnnoooowwwwww!"  Always to be followed with the huffy sigh or eye roll.  Okay, I can admit to perfecting that as a teen myself, but still....SQUEAK.  Could we not just respond with a pleasant, "Okay?" 

3.  "It's not fair!"  squeeeeeeeaaaaakkkkkk.   I have a good response to this one.  
Me:  "I hear you saying that you want everything to be fair and equal.  Is that right?"  
S:  "Yes."  
Me:  "Okay, then I'll need you to hand over your iPod touch and the cell phone."
S:  "What?!?! No!"
Me:  "Well, if you want everything to be fair and equal, that goes both ways.  K doesn't have an iPod touch or cell phone, so if it's going to be equal, then you can't have those either."
S:   stunned silence and skulking away

4.  "Do I have to?"  Really?  Do you think I would have asked you to do _______ if you didn't have to do it?  Do you think I say these things like they are negotiable or just to hear myself talk?  If I was to do it myself, I would have done it.  And, yes, you do have to do xyz activity; you made the commitment, you need to follow through unless we are talking about danger or unreasonable risk or illegal - all of which would prompt a completely different discussion. Squeak.

5.  Oh, here's a favorite:  plllleeeeaaasssseeee (with appropriate whining voice - you know the one, you used it once upon a time, too).  Begging will get you nowhere.  Have you not learned after all these years that my response to begging will always be the same?  Keep pushing and I may never consider another request you make again. Ever.  When that doesn't get it to stop, I start laughing.  It really is funny to watch her go on and on as though she will wear me down.  I guess that determination will pay off in the future.  Right now, it's just another big squeak on the chalk board.

6.  "Mom, do you know where my ________ is?"  No, darling child of mine, I have no idea.  I know I told you that I have eyes in the back of my head, but they only focus when you are misbehaving.  Try looking in all the places that _______ shouldn't be because it certainly couldn't be where it belongs.  Next time, try putting it away when you are done so you know where it is or come up with some creative anagram to remind you where it is or tie a string around your finger.  Try something, but don't ask me because I guarantee you that 99% of the time, I will not know where you put your own stuff.  Assuming you picked it up, which as we established in #1, is unlikely.

7. "Can we have a hamster?"  Let's add a giant dragging of the nails down the chalkboard for this one, not just for content, but the repetition of the question that seems to never end.  Hmmm...let me think.  No, and asking me 50,000 times probably won't change my mind.  Asking while I am standing in line for Pirates of the Caribbean at Disneyland with girlfriends (no kids!) is probably not a good idea.  Nor after you've forgotten to feed the cats for 2 days.  Nor when you see the cats catching birds, mice, lizards and even a squirrel.  Most of all, stop asking me over and over and over!

For the record, although my purpose is to write about what it is like to parent a special kid and an extra-special one, I know that these things are universal.  If your child is extra-special, you will appreciate that with this annoyance also comes the satisfaction of knowing that your child is moving forward in the "normal" ways, even when you kind of wish that they would skip this particular phase of "normal development."  Or maybe that's just me.

So, if you are reading this, I'd love to know what you would add to the list.  If you are a teacher, you probably could double the list just on junk your students tell you!  Give me another addition to the list.  Maybe we'll have "Fingernails on the Chalk Board 3."

Monday, January 9, 2012

Fingernails on the chalkboard

"MMmmooooooooommmmmm!"  Please insert your own version of the whining sound that goes with that one.  I remember a time, long ago, when I longed to hear them call me "Mama" or "Mommy."  So sweet!  Now, it sometimes makes me want to run into the closet and hide beneath the rack of pants.  I'd run to the bathroom and lock the door, but they follow me there anyway and know where the key is to unlock it, so it is a useless destination.  What is it about that version of "Mom" that makes me wish they never learned to talk?  Arguing, bickering, fighting - call it whatever you want, but it is conflict.

I was raised as an only child.  I never had anyone to argue with - except my mother...when I was a teenager...which is what all self-respecting teenage girls do...which also terrifies me about my rapidly approaching future with S.  I never experienced the typical sibling conflict that I have heard so much about, thus I never learned how to resolve those conflicts.  I was also not prepared for the inevitable conflict between my girls and how it would sound like fingernails on a chalkboard to me and cause levels of anxiety that should be reserved for bungee jumping or shark diving.

"Mooooooommmmm! K said she would dance and sing with me and now she won't do it because she says she doesn't want to.  It's not fair; I played Barbies with her and I didn't want to."

"I don't want to do dancing.  I want to play Barbies.  S always wants to do what she wants to do.  I need some alone time."  "Alone time" is code for "I just don't want to do what S wants to do, so rather than find a compromise, I'm going to pretend that it's all just too much and I need to be alone for a bit."

Seriously?  I've seen and heard these arguments escalate and sometimes it is beyond my ability to understand why there is a need to fight over what to play.  Here are the strategies I have tried:

1.  Leave them alone to work it out.  Yes, I think that is supposed to be the thing to do, according to most of the books.  In the meantime, I'm just cringing at the sound of it.  I don't like conflict and since I don't have a lot of experience with it, it just makes me uncomfortable.  Hmmmm...my problem, not theirs.

2.  Leave them alone to work it out until I can't stand it anymore, then tell them in a raised voice that it is miserable to listen to them and they need to find a way to work it out or they are both going to have to go to their own rooms.  Hmmmm....my problem because I couldn't follow through on #1 and because having them play separately means I will now be asked to become a playmate for someone and sometimes it is better if they just entertain themselves.

3.  When it comes to play time conflicts, we've also tried the taking turns approach.  S gets to choose an activity and they play for a predetermined amount of time then K gets a turn and they play for the same amount of time.  Sometimes this works, sometimes it doesn't.  If both are still wanting to dig their heels in for their own activities, this is not a compromise that works.  It seems reasonable to me, but then again, I never had the chance to fight with a sibling, so who knows?

4.  Talk to them separately.  This is where the differences between the two become apparent.  S is more mature, obviously.  She's more savvy with her words and she's clever enough to try and manipulate the situation.  My discussions with her have to revolve around the core values in our house - treating each other with respect, being kind, finding compromise.  She can truly understand looking at something from another point of view, whether she likes it or not.  Compromise is a hard one, though, and I recently realized that I needed to teach her how to compromise.  She can really dig her heels in sometimes and getting her to budge is a challenge.  Can't imagine where she gets that from...;-).   I had to explain that in situations like this, you have to keep considering different ideas so that you can find a solution that works for both of you.  What about a board game?  What about playing on the Wii?  What about roller skating or riding bikes?  The options are practically endless, if she would just consider letting go of her first choice.

Teaching K how to muddle through these conflicts is more complicated.  She is 2 years younger and with her extra-special qualities, she doesn't have the same savvy with her words, nor the same ability to sympathize with another point of view.  She is only just beginning to become strategic and manipulative.  I suppose that should make me happy, as it is another indicator of her forward progress, but I sure do wish we could pick and choose those milestones.   K responds best to concrete rules and expectations.  However, conflicts, like so many other areas of life, don't always follow rules.  I can tell her the same things that I tell S, but the approach has to be so much different.  We have to role play, I have to have her explain things back to me to make sure she understood what we are talking about.  We talk about feelings and being kind and not being selfish.  What is funny is that in most other areas of her life, she is unfailingly kind and giving.  I have to clearly identify for her what words she said that created or added to the conflict and then we have to think of some different words for her to use next time.

I don't think that the sibling conflicts in our house are much different than those in every other house with more than one child.  My challenge is always to find the balance so both of them learn conflict resolution in the ways that work for them.  Sometimes, I wish we could take a cookie cutter approach to parenting -just do everything exactly the same for both of them all the time.  Since that simply won't work and I decided a long time ago that it is far more peaceful for all of us if we raise them as the individuals that they are.  Maybe I should just invest in a good set of earplugs and stick to strategy #1.

Wednesday, January 4, 2012


My mom sent me a link to an article recently.  It covers a family in England who have two children - twins - born 5 years apart.  You can read it here  Twins Born 5 yrs Apart .  My mom said, "Sound familiar?"  Of course it does.  My girls are also - genetically, technically - twins, born 25 months apart.  How?  The miracles of modern medicine!  Long story short, our 3rd in-vitro attempt resulted in 7 embryos.  Two were used immediately and we were blessed with S in 1999.  The rest were frozen.  Fast forward two years, we thawed and used the embryos and were blessed with K in 2001.  Technically and genetically, they are twins since they resulted from the same batch of fertilized eggs.  Typically, however, "twins" refers to two children born of the same pregnancy, which is why I explain the "technically and genetically" part.

The reason I bring this up is because it is one of the things that I have pondered over and over and over again when I look at both of my girls.  They look a lot alike, but many siblings do.  Their personalities are distinctly different, as are most siblings.  Both are healthy and happy.  S was premature, but has no residual effects from her early arrival.  K was right on time and yet, her extra-special issues will be with her forever.

Why are they so different in this fundamental way?  I will never know.  Like most parents of extra-special kids that I am privileged to know, I have done my fair share of trying to find the cause.  In some cases, with lots of extra-special kids, you can find a cause.  On the other hand, there are so many cases where it just "is."  Who knows why they ended up they way they did?  Make no mistake about it, though; every parent has spent at least some time wondering, "Why?  How?"  The wondering is very often accompanied by the elephant in the room - guilt.

Guilt lurks in the shadows of your mind.  It waits until you are vulnerable and then comes out to play.  We parents of extra-special kids can be very vulnerable at times.  You look around and see families moving through their lives, knowing that their children will more or less follow the expected path to the future.  You watch those families with envy, knowing that your own family and your own path is very different and not easy to take for granted.  You look in your child's classroom and wonder how you ended up with the extra-special kid.  Once you've wallowed in that for a little bit, the questioning begins.  "Is it something I did?"  In my case, in the early years of K's diagnoses, my questions were a bit like this, "Is it because she was a frozen embryo for 2 years? Or is it because I had such severe morning/all day/for 5.5 months morning sickness?  Could I have done something to prevent this?"

It is easy to get stuck in that dark place.  We think it would be so much easier to deal with if we just knew why it happened.  The reality, in many cases, is that we will never know.  Once realized, one can begin to move forward out of the darkness, though.  Even if you knew the answer - knew why - it doesn't change the reality of today.

In the end, the past doesn't change my present.  Today is what is important.  Guilt can take a hike...find somewhere else to lurk.  I've got no room at the Inn for you, Guilt.  Guilt only distracts me from the blessings of my current place and impedes my ability to move forward.  Guilt tries to make me feel like I haven't done enough, am not doing enough, will never do enough.  Guess what?  I've been doing the best I can and that has to be enough!

I think most parents worry about their children in one way or another at different ages and stages.  Parents of extra-special kids have extra-special worries...or maybe just extra worries, in general.  Will she learn all she needs to know to graduate?  Will he ever drive a car (have you ever considered how many things you have to multi-task to drive a car?)?  Will she go to college?  Will he find his passion?  Will she fall in love, get married, have a family of her own?  We can drive ourselves crazy with the questions.  It takes work to remember that we may not - and often don't - have all the answers.  Not then, not now, not in the future.

Today, I know that I have two beautiful daughters.  Two totally different and unique daughters.  One requires a different kind of parenting than the other.  S is traveling the expected path to her future; K is on a windier path, but it is her path, none the less.  In many ways, we aren't that different from those other families.  I cannot always question how I got here.  I know enough now to appreciate that while things are different than I expected, those differences have brought me countless blessings. Not just the blessings of my extra-special girl - her light, her intelligence, her joy - but the blessing of self-discovery and finding that frankly, there's just not enough time to have so much self-doubt and guilt.  Today, I know that I've done the best that I can do.  Tomorrow, I will face another day - just like every other parent.

Monday, January 2, 2012

To Believe or Not To Believe

Happy New Year!

It's been two weeks of Christmas vacation.  That is one week of Christmas hustle, bustle, stress, joy, happiness and a whole lot of togetherness.  It is followed by one week of actual vacation...and even more togetherness.  Anyone who is home with kids over any school break knows this can be a dicey experience, especially when everyone is super excited for Christmas!  We all survived, though, and I imagine I will miss them when they head back to school.

K, my Santa-believing, Pixie Dust-requesting girl, did, in fact, get Pixie Dust from Santa.  Santa generously left her a letter explaining that Pixie Dust would only work in Neverland, so although she had it, she couldn't use it to fly in our home or outside, either.  She tried anyway.  She diligently sprinkled Pixie Dust on her head and thought her happy thoughts....and remained firmly planted on the ground.  Never one to be deterred, she quickly announced that we needed to go to Disneyland where we would visit Pixie Hollow, see Tinker Bell and this whole thing would be cleared up.  Tinker Bell would make the Pixie Dust magic again and all would be right with the world.  Let us never doubt K's intelligence or imagination.  To her, that seems like a perfectly logical solution to this "problem."  I am wondering what kind of mess I've made.  Either way, I figure it is better to be impressed with her problem-solving skills and maybe by the time we visit Disneyland again, she will forget about the Pixie Dust.  Not likely, but one can always hope.  I'd rather find another way to perpetuate the magic than to bust her beliefs because I couldn't explain my way around Pixie Dust.

With S, it was a bittersweet Christmas this year.  This is the first year that S was in on the Secret of Santa.  On the one hand, it was sad to see that part of her childhood behind her and realize how very quickly she is growing up.  On the other hand, it was wonderful to share that with her and give her the first taste of the Santa in all of us.  She never asked me about Santa, but another friend of hers spilled the beans sometime last year.  Actually, I thought she knew a year earlier, but just didn't want to know for sure, so she adamantly stuck to her beliefs.  This year, we had a brief discussion, where I floundered over what to say and wasn't nearly as eloquent as I would have liked.  Then, I stumbled upon this, Truth About Santa .  *Warning* Grab the nearest tissue box before you read it.

So, after my lame and stilted attempt to share my feelings about the Secret of Santa, I wrote a letter to my girl and quoted the above blog as part of my letter.  Since I clearly couldn't have said it better myself, I felt this was a great way to give the message to S.   I concluded my letter telling her that now that she knew the truth, she could carry Santa in her heart and when the time is right, together we will share the Secret of Santa with K.

This is one thing I love about my oldest girl.  She gets so much joy when she gets to do the "big kid" stuff first and then participate in making it fun for K.  She absolutely loved filling the stockings for her grandparents and helping with the cookies and milk.  I love having that sidekick because it makes my job so much more joyful, too.  Not only do I get to do what I do for K, but I get to experience the fun and joy of S in the process.  It is my icing on the cake and it definitely softens the blow of her growing up so fast.

I have no idea how long K will believe in Santa, Fairies, and Pixie Dust.  I get choked up just thinking about that being a part of her past.  I'm just glad that I will have S by my side to remind me that there are still fun adventures to be had, even when the childhood fantasies are done and the world is viewed in a new way.