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Monthly Archives: December 2011

Ezra is going through something right now. 

Yesterday his dad called me and told me that he had a hard drop off at daycare (we have been told to call it “school” not “daycare”) and that he was worried about Ezra.  He also said Ezra has been waking up in the night crying saying he is scared and having nightmares.  Ezra’s dad prickled a bit when I suggested that was probably part and parcel to his recent move and it would just take a bit of time for Ezra to get used to the new digs. [I mean, it’s probably the truth and I wasn’t holding it against you, but a kid may take a month or so to settle in. Feel guilty if you must, but I was only stating the obvious.  He will be fine eventually.]

This morning I was the one who had the rough drop off.  It was awful and sad.  I walked out of the school to Ezra’s screams of, “Mooooommmmmyyyyy!! I don’t want to go to school! I want to go home with you! Mommy! Mommy!! Moooooommmmmmyyyyyyyyyyyyyy!!!!!” at an ever increasing pitch. 

Talk about a guilt trip!  Even knowing it was coming and knowing it would surely be over within 5 minutes of me getting to my car did not make it easy.  He has been going to this school for over a year. And while he is rarely chomping at the bit to get in the door, it is even more rare that he throws a wall-eyed fit at drop off.  But lately it’s become more common.  Yay, me.

So I am left to wonder what is going on in that little head of his.  What can I help him understand or how can I change my approach to get a better outcome? Or is this just a stage that nothing I can do can mitigate and we just have to live through it? 

He has become much more inclined to be defiant lately (which I think is an age-related stage). 

He has become more rowdy, rambunctious and attention-seeking (which I think is a direct result of recently becoming a big brother).

He has started acting like I am trying to give him over to people who are going to boil him alive at school (and I have no idea what that is about – although my best guess is a combination of the above).

I have talked to his teachers and they say that, even though he is generally good, he has had some rough days where he was not listening and being rough with his classmates (aka ‘friends’), to include hitting.  I have even heard the phrase “worst day we’ve ever had with him” mentioned at least twice in as many weeks. So I am not sure what is up with my older son. 

Ezra is not a patient child, even less so than most children, maybe.  He is also fiercely independent and quite a bit defiant.  So I am struggling to find my own patience and figure out exactly how to parent him through this apparent rough patch.  He has had a full year with trips to El Paso to visit his dad’s family, the birth of a new brother, turning 4, his dad’s move and his schedule has been up in the air with the holidays throwing a loop into what is normally a pretty consistent back and forth between his dad’s house and ours. 

But I suppose what I have got to figure out how to start teaching him is that you have to “roll with it, baby.” Life is not consistent.  Just when you think you have it all figured out and you have things just the way you want them is just about the time life hits you with a loop and takes all that consistency, throws it out the window and laughs in your face. 

So the consistency has to come from inside, not outside.  That is one thing I never was able to learn or even give voice to until now.  Consistent is not something that is given to you, it is something you are

We raise kids with routine and expectations.  And I am not saying that is a bad thing.  As a matter of fact, at our house bath time is 8:30 and bedtime is 9:00, forever and ever, AMEN. Ezra may not know how to read the numbers on the clock, but he knows those two things are pretty immutable at our house (he also knows there is no TV or lights on or sleeping in Mommy’s bed –well, until cuddle time when the sun comes up anyway – but then that is just how our house runs).

At the same time, the only thing I have found to be consistent about life in my short 40 years has been the inconsistency of it.  I have struggled to roll with the punches.  I have had a hard time being a consistent person in an ever-changing world.  I think that is one thing I am better at recognizing being an older parent. 

The question then becomes how do I teach it to my children?

I suppose the first thing to do is master that consistency myself.  I say ‘master’ with a rueful laugh.  Ask my daughter about how consistent I have been.  I suppose she could say I’ve been consistently inconsistent.  Not about certain things with her, mind you. I don’t think Greta could say that she has not known what I expected of her or in most cases what to expect of me (whether good or bad).  But there are a lot of ways I have led an inconsistent life.  I have not always handled difficulties with grace and aplomb (to say the least, which is why I admire that so much in Jay, I suppose).  As a matter of fact, if I were to look back on my life, it would be easy to just throw my hands up in frustration at my lack of consistency.  In fact, the only things I have been really consistent about are things I shouldn’t have been.  Imagine that. 

So I made a decision a couple of weeks ago.  I am going to mentally box up my 20s and 30s and, except for the very least amount possible, I am not going to think about them for the next decade. 

I have spent too much time reliving the difficulties and inconsistencies of the past and I no longer need that millstone around my neck.  I have learned a lot during those 2 decades and the time has come to put that knowledge into practice and not beat myself up about how I came by it.  Sure, it was not pretty.  It was nasty and ugly and unpleasant.  But it was gotten nonetheless.  And not applying it now would be to make all that hassle and heartache worthless.  And something good has to come of it. 

So as I look ahead to the challenges and try to do my best to face them with the grace and aplomb I so admire, I have to figure out the small things. 

And today’s small thing is what to say to a 4 year old boy who doesn’t want to go to school and who is acting out.  Wow.  Why couldn’t it be something simpler like the figuring the square root of 8,136?

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I recently posted that my baby Sawyer has Downs Syndrome.  The post was a hard one to write.  There are a few pieces I am writing that are turning out to be harder.  I am not sure that they will ever make it to a post, but they are healing pieces to write even if no one ever reads them. 

I promised Jay I would not make this blog ‘about Downs Syndrome’ (that would, after all, be doing the exact thing I was posting about NOT doing before, now wouldn’t it?) and I have no intention of doing that, but this thing is called “Minding Marnie” for a reason. And this is what has been on my mind. 

It occurred to me after posting about Sawyer that when I have told individual people about his diagnosis, it has always been during a conversation and there has been more of an explanation of how and what we know.  Since I know that many of my friends and family read this blog and some of you I have not yet been able to have that face-to-face conversation with yet, I will attempt to do so here. 

First of all, we did not know Sawyer had Downs before he was born, although we did know there was an elevated risk. We had one doctor telling us she thought he was fine and the risk was low and another telling us he was highly concerned. Jay and I decided there was no use in running the risk of an amniocentesis because we would not have terminated the pregnancy regardless of the results [That is our choice and we make no judgment on those who make the same or different choices. We did find out that over 90% of fetuses with Downs are aborted, however.  I am not sure how I feel about that].   We even had differing opinions as to whether or not he had it after he was born.  But we had a genetic test run and when he was 5 days old the FISH analysis came back positive for Trisomy 21. And, yes, as much as it tears me apart to say it, at this point my age is the only factor we know of that could have caused it – at least going with what we know about Downs Syndrome to date. However, everyone I know who had kids at 40 and over did not have a problem, while the few Downs children I know of were all born to mothers under 35. Go figure. We have an appointment with a geneticist in February to find out more.

Second, so far as we have been able to determine, Sawyer has none of the health problems associated with Downs Syndrome.  He has an extra vein to his heart, called a Left Vena Cava to Coronary Sinus, and a small millimeter-sized hole in the wall between the ventricles.  Both conditions are benign and will never even need monitoring, much less any kind of intervention like surgery.  The pediatric cardiologist actually found the extra vein while I was pregnant (how cool is that, uh??) and a cardiologist found the hole when Sawyer was born.  Neither condition led to any extra precautions, even though, due to jaundice (unrelated to Downs), Sawyer did stay an extra day in the hospital. The LVC (extra vein) is very rare, even among Downs.  When I told my brother (who is a nurse and recovered cardiac patients in CV-ICU for years), he said how cool it was and that if Sawyer ever had to have bypass surgery they would not have to take a vein out of his leg, they could just use the extra one he already has! I suppose that is one was to look at it, though I wasn’t thrilled with him imagining the future open heart surgery of my as-yet unborn son. 

 There have been no indications that he has any gastrointestinal problems, which can be commonly associated with Downs.  He has appointments with an ENT and ophthalmologist in January, but those are just a precaution more than a concern.  He passed his hearing test with flying colors and he sees as well as his siblings did at his age. 

This is such a blessing because so many babies, whether they have Downs or not, are born with heart or other problems.  While knowing Sawyer may have extra challenges is hard, I cannot imagine what it would be like to have him and lose him – or never get to know him at all.  I know people who have lived through that and worse and my heart goes out to them.  Even more so now.

Third, Sawyer has been evaluated by the state agency already and will start having physical therapy for an hour once a week in January or February.  He is holding up his head and starting to coo and smile.  His muscle tone seems normal and he will lie around and kick and flail his arms.  Over the last couple of days we have noticed that he has found out there is a hand at the end of his arm and he is checking that out quite a bit when it comes across his field of vision. In other words, up to this point he is developing like a normal baby, keeping in mind that he was born early at 35 weeks. 

In February Sawyer has his first appointment at the Emory Downs Syndrome Clinic here in Atlanta. From what we understand, the Emory Downs Clinic is one of the best there is and we are lucky to have such great resources so close by.  This has quickly shot up to the top of my list of reasons I am glad to live in Atlanta. 

There are, as you can imagine, a whole host of support groups and such for families of kids with Downs Syndrome.  However, if you’ve paid much attention to previous posts, you will know that Jay and I are not exactly the overly social type.  While we will eventually reach out to certain resources, we have not yet joined the community and are unsure when we will feel comfortable doing so. 

Lastly, he does have a few of the physical Downs characteristics – the fold in his eyes, curved pinky finger, separation between his big toe and other toes, small ear canals and nasal passages and a couple of others we have identified – so you can ‘see it’ when you look at him, but it is not overwhelming. The doctor that delivered him didn’t see it and told us not to worry and that he was fine.  Does that make me feel better about it?  Some . At least for now. 

That is all I know.  Anything beyond this is speculation. The rest is one big, huge, overwhelming Question.

How long will it take him to roll over and crawl and walk? Will he have problems learning to talk [Not with my Granny’s genes in him, I’ll bet. Although he may have a hard time getting Ezra to shut up long enough for him to get a word in edgewise]?  Will he have a learning disability? Will we be teaching him “life skills” instead of algebra (I mean, will Jay be teaching him algebra – I couldn’t teach him his multiplication tables… but you see where I am going with this)?  Can he go to college? Do we need to make provisions in case he is unable to care for himself? What will his life be like?  Will it be a long and happy one?

Will he read this one day and will it hurt his feelings?

From there the questions get even more terrifying. 

And I don’t know the answers to any of them. Of course, being human, this scares me more than anything.  It is the not knowing that gets to you. From the research my friends and I have been able to do, there is no way to know. Doctors don’t really tell us that much more.  He may not have any delays.  He may have some we expect and others we cannot imagine.  He may excel at something we don’t expect, either.

Just like any other kid.

I think my first lesson from Sawyer is going to be to let go of my expectations.  Jay is much better at this than me.  He accepts.  He accepts Sawyer and he accepts that we don’t know what raising him is going to be like [I totally love that about Jay.  It is one of the things I most appreciate in him, even though his nonchalant acceptance seems so easy that it is maddening].  I am a worrier.  I try and look at things and imagine every possible outcome and extrapolate all the possibilities.  Even knowing that this is impossible cannot stop me.  I have paralyzed myself doing this more than once.  But it is a lesson life has been trying to teach me and I have been refusing to learn. 

I have spent more time than you can imagine managing expectations.  I have spent far less time putting my best foot forward and seeing where it would take me. 

Man, I have a lot to learn from this kid.

I am so excited! You see, I have this trifle of a blog that I have been dumping all the inane shit in my head out into since February.  And people are reading it.  I know!  I can barely believe it, either.  What’s even better is that cool people I like are reading it – not crazies.  Wow. 

I am still new at this and quite a bit self-conscious about it all.  Imagine my surprise when today I clicked on a link one of my favorite bloggers posted in a comment and saw that she not only had a Versatile Blogger Award (Congratulations, Renee!!) but that she had listed me in her top 15 favorite blogs! First of all I have never been in a list of anyone’s favorites, so I am humbled and totally excited about that.  Second, I have never won any kind of award since I got that Jimmy Carter Peanut Radio for selling the 2nd most cookies or something in 2nd grade (I also got my picture in the paper for that.  No joke.  I will scan it and post it sometime.  You gotta appreciate all those little moments of fame, right?).  And, third, Renee is awesome and I am honored she likes me. 

Now, apparently there are rules for this. 

1. Thank the award-giver and link back to them in your post.  [In case my above blubbering was unclear, thank you, thank you, thank you, Renee!!]

2. Share 7 things about yourself.

3. Pass this award along to 15 recently discovered blogs you enjoy reading.

4. Contact your chosen bloggers to let them know about the award.

5. Post a picture of the Versatile Blogger Award on your site.

Um, 7 things about me:

  1. I am a total procrastinator.  Don’t believe me?  Read this.
  2. I was a Brownie, but never a Girl Scout.
  3. I had two kidney surgeries when I was 5 resulting in a 2 month hospital stay, a transfusion and a 5 inch scar.
  4. I always have blood red toenails – even in the dead of winter. 
  5. I hate it when people ask me if my hair is naturally red.  I hate it because I am not sure of the answer and I never know what to say.  Do people ask blondes this or just redheads?
  6. I did not like Guns N Roses when they first came out.  As a matter of fact, I still hate Axl Rose’s voice and listen to GNR now as more of a nostalgic thing than a real love of the music.
  7. At least once a day I have to remind myself that I am a 40 year old woman.  I still feel like I did at 17 and the last 23 years seem to be a blur that only took a few years instead of 2 decades. 

I am new at this, so I don’t have 15 blogs I like to read.   I will list the ones that I do read, at the very least.

  1. The first is, of course, Pooter and Booger’s Place.  Renee has lived a fascinating life and she honestly tells you all about it. 
  2. Corey over at The Hopeful Cynic is a wonderful writer.  She is moving and hilarious…and in just the right combination. 
  3. Write Gnome Write encourages you to release your inner gnome.  I met the author in 6th grade.  She is truly remarkable.
  4. Jonel Fernando and I crossed paths a few months back.  He is a prolific and interesting writer.  I always leave his blog with something to think about.  And that’s really what writing is supposed to be about, right?
  5. Anastasia over at Sweet Butter Bliss is so relatable and honest you cannot help but like her. 

That’s really all I’ve got.  I will have to be a better blogger and read more blogs.  Some I do like that you may have heard of are:

Rants from Mommyland,

Mommy Shorts, and

The Mouthy Housewives

I have started back to work after having my baby.  I have been gone from my bog all this time mainly because I do not use a computer at home. 

There are a couple of reasons for this.

One is that I am here in front of a computer for 8 hours when I am at work.  Going home and being at a desk in front of one there is just not the way I want to spend my evenings. The other reason is that the computer at home is Jay’s Mac.  Not only am I unfamiliar with macs having worked on a pc for years, but this is Jay’s Mac. Being unfamiliar with Apple is bad enough, but Jay’s Mac is the better half of our livelihood. If something happens to it, well, let’s just say that would not be good.  And there is no way in hell I want to be the one who is sitting in front of Jay’s computer when something goes wrong.  And technology hates me.  It truly does.  The damn thing would probably blow itself up just to spite me.  I stay away from it just in case.

If I get a laptop of my own, maybe you will see a bit more of me in blog posts and on facebook and such, but until then this is more of a 9 to 5 thing, responsibilities permitting.

I miss seeing Jay.  I miss being at home.  I miss having absolutely no schedule whatsoever and being paid for it.  But then I do like having my own space and time to organize my thoughts.  I just don’t like that I have to commute an hour to get here, but c’est la vie.

Most of all I miss the baby.  His name is Sawyer James Musselwhite and he will be 10 weeks old tomorrow. He is perfection in a 10 pound bundle.  I miss being snuggled up with him all day.  The last day of my maternity leave I held him. I held him all day.  I did not put him down from the moment I woke up. I held him while I perused my library books.  We napped together on the couch.  I didn’t even shower until later on in the evening when Jay got done with work for the day because I did not want to put him down in his bassinet. 

I don’t know what I would have done if I’d had to take Sawyer to daycare at this age.  Greta and Ezra were well over a year old before they ever went to daycare, so I don’t think I would have handled it very well if Sawyer was going at such a tender age.  I know that daycare providers do their best to take good care of the babies they have and both Greta and Ezra have loved daycare, but Sawyer is just too young. 

Luckily for me, Jaymus, LLC has been able to take on a new employee.  Sure, he is a bit young (ok, 10 weeks is more than a ‘bit’) and his creative input is limited to cooing, gurgling and maybe a bit of crying (though he is really quite copasetic), but so far I understand he is doing a bang up job as “creative commentator.”  Just today he accompanied his boss (aka, Daddy) on a trip to the dentist where I am sure he learned a lot about teeth that will come in handy once he starts growing some (those teeth will also come in handy for biting awful nurses who seem to mistake him for a pin cushion on a regular basis).

Sawyer is adorable and perfect.  He is growing so much and becoming quite the little piglet lately.  He is putting on the baby fat and that little bum has gotten a roll or two on it now.  So have the little thighs.  He has light brown hair and blue eyes.  He has perfect little lips and is starting to make that “O” shape to mimic us when we do it. His coos are the sweetest thing I’ve heard.  He also has Downs Syndrome. 

This is the first time I have ever written that sentence.  It is also the first time I have come close to telling a bunch of people at one time as if it were some sort of announcement.  The reason is not that I am embarrassed by it, although my own mother has wrongly made that assumption. It is also not because I feel responsible, though that is partly true. It is not because I am worried about being blamed for having a baby at 40 and being surprised when there was a problem.

It is because I have the overwhelming feeling that it will very quickly become the first thing associated with him.  And the idea he may be judged lacking mentally and/or physically at first sight saddens me more than anything I can describe.

The day we went to went to the perinatologist to have a second opinion when the screening for Downs came back elevated, they asked if we wanted to know if it was a boy or a girl.  We wanted to find out what we were having as soon as possible and this was the first time someone was going to tell us.  I saw Jay’s face when the tech told us it was a boy and I really hope I never forget what he looked like in that moment.  For those few minutes everything was perfect.  Then the doctor came in and – without the best bedside manner – crushed my hope that he was going to tell us not to worry and that there was very little chance our baby boy had Downs.  That did not happen.  He told us on a scale of 1 to 10 his concerns were an 8.  Apparently, he was right to have those concerns. 

But the thing I remembered the most later when I was calm and rational again was that when I talked to Jay on the way home and when I called my mother later to tell her, the fact that we had just found out we were having a baby boy was a footnote in those conversations.  It was all about Downs Syndrome.  As a matter of fact, I remember specifically that I told my mother at the end of our conversation after I cried and she said all the right things, “By the way, it’s a boy.”  My voice was flat and listless by then. 

While I was pregnant I was talking to a friend of mine who was telling me about a conversation she’d had with another friend of hers.  That friend’s son had been diagnosed with Asperger’s Syndrome.  During the conversation my friend told me that the sentence, “You don’t understand what it is like to be the mom of an Aspy” actually came out of this woman’s mouth during the conversation. Now maybe I am being a bit sensitive.  After all, I was pregnant and I had been told there was a 20% chance my baby had a syndrome of his own. But still, “mom of an Aspy!”  Really?  Even she was reducing her own son to not only his diagnosis, but a cutesy nickname for it. If his own mother thought of him that way, what would others think?

That is not the way we view our perfect little baby.  And I am determined that no one else will do it, either. He is Sawyer James Musslewhite.  He has brown hair, blue eyes and Downs Syndrome. He has his Daddy’s lips and temperament.  He is not going to live a life hampered by assumptions – whether they be those trying to figure out what he can do or what he cannot. 

He will, however, have expectations.  He will be expected to do his best, the same thing that is expected of his brother.  He will be the best Sawyer James Musselwhite there can possibly be.  Because he is the only Sawyer James Musselwhite there is or ever will be.

[This post is part of a creative writing exercise from The Red Dress Club. I wrote it back in June.  It is my first little short story and not a very original one, but I figured it was at least worth posting. What do you think?]

Gray rinsed his face and looked into the mirror.  Downstairs the party was picking up steam.  It was 11p, which meant the alcohol was doing its work and things were getting louder and, he was sure, more risqué.  He shook his head in disgust as he dried his hands on Julie’s perfectly monogrammed hand towel.  Somewhere in the back of his mind a small, but well-taught voice, reminded him that he should not be using the monogrammed towels. Read More

So here’s the scene.  I am in a new dress sitting in a tent on a pier next to a nuclear submarine.  I am in the back row, next to the last seat.  Besides my husband and children, I only know one other person there and he is sitting out on the submarine.  This is because my friend is stepping down as commander and we have been invited to the ceremony. Everyone is quiet.  Directly behind me the entire crew of said sub is standing at attention.  Read More