Stress and worry and anxiety – or, you know, a normal day

11 Sep

I love Maura.  I love her dearly.  She has changed me in so many ways, good ways, happy ways, kick ass ways.

But as they say, magic always comes with a price.

The price for being Maura’s mom, besides all the fabulous kick ass stuff?  The not so pretty stuff.  Like the stress.  And the worry.  And the slightly screaming case of anxiety.

I’m pretty open about it all to friends, because I’m not ashamed of it.  Why be ashamed of it?  Living with Maura, dealing with her issues and all the nonsense that comes along with those issues is stressful.  I do worry about her.  And it all causes my natural tendency towards anxiety to sometimes spin out of control.

What, have I made this all look too much like a cakewalk?  Because I do that you know.  I put our best faces forward. I tell the jokes, and laugh at the nonsense, and do my best to ignore the stress and the anxiety and hide the worries.

Many moons ago, when I was in my pregnancy phase of life (aka my twenties), I spent a lot of time with baby blues.  I didn’t think it was post partum depression because there was so much more going on around my life to explain away feeling down.  And it wasn’t that bad, honestly.  But with Maura, I could see, even before giving birth, that I was dealing with something more.  After she was born, it didn’t get better, but it wasn’t awful either.  I told myself it was a mild case of PPD, and my husband was lovely and supportive and made sure I got out of the house when I needed a break.  And things seemed to get better.

Of course, the timing was off.  Because as the fog of PPD started to lift, we were informed that there might be something….off….with Maura.

And that’s when I hit depression like a brick wall.

I had spent so much of my time trying to keep my head above water, and then I was handed a sack of rocks to hold while treading the waters.  Yet most people didn’t notice.  I was still The Good Mom, taking kids to soccer practice and making sure they were clean and fed and loved.  No one saw that I had gone on auto-pilot.  I was going through motions while inside, a voice in my head screamed “There’s something wrong with the baby!  Fix her!” .

Several months or so after we were told that there might be something wrong with Maura, I looked up one day and realized I’d been ignoring my other children for that whole time. And I got slammed into the brick wall of mommy guilt.  So I tried to do better by those kids while taking Maura to doctors trying to pinpoint the cause for her delays.

Eventually I broke.  There were panic attacks, sure.  But apparently hyperventilating in my kitchen over something that wasn’t a big deal wasn’t a big enough wake up call for me.  Nor was hyperventilating over other things enough.  Nor was my messy house enough, or inability to make decisions, or urge to just run away from it all.  No, what did it was my husband asking me to get some help so I could be happy again.  Not that I was going around being outwardly unhappy.  I was just sort of frozen, unable to move forward with anything, and hiding my head in books and crafts.

So I made a call.  I saw a therapist.  I tried different anti-depressants.  I discovered that my system was quite sensitive and some of them made me nauseated.  I joked that being nauseated didn’t make me happy, and happy pills were supposed to make me happy dangit! I kept going to therapy.  I discovered that Prozac in a very low dose helped stomp down the screaming anxiety.  I figured out how to start digging the house out of its horrible state.  I learned to let some things go, and grew a backbone when it came to confrontation.  I cut through bullshit, and realized that life was too short to let my anxiety keep me in a choke hold.

I got better.  I weaned off the Prozac.  I was doing good.

But the problem is, I still had Maura.  I still had a natural tendency towards anxiety.  There was still stress, and there was still worries.

See, being a special needs parent, it’s like you have PTSD – except you never are “post” the traumas or the stress.  There is always something trying to rear its ugly head at you.  There is always something to set you off, make you worry, make those alarm bells scream in your head.  If Maura gets sick, I go into High Alert Mode and don’t sleep well because I worry that maybe this will be the illness that triggers seizures again.  If she acts off, I keep a close eye on her.  If she’s still awake at 11 pm, well, I’m not going to sleep any time soon either.

It’s an ongoing crisis.  It’s like having a low hum of anxiousness always playing in the back of your brain.  It’s living life knowing that one of your worst fears is your child dying before you, but your other worst fear is your child outliving you.  It’s having a moment in time when you realize just how much of your world is no longer “normal”.  It’s trying to live in the now, but worrying about what happens in five years, ten years.

It’s a never-ending cycle.

So when, after a move (which is stressful enough) internationally (which is even more stressful) and having to place Maura in a new school after a not great inclusion experience in the past (which just brings up all sorts of bad feelings) there was one day last summer when I had to drive over the bridge.  In the rain.  Which is actually quite normal in Seattle.  And was quite normal in Ireland.

I couldn’t do it.

I just couldn’t do it.

I pictured us spinning out of control, horrific crashes, and started hyperventilating.  I had to leave the highway and cancel the appointment I was taking Maura to.  Then I cried because I was disappointed in myself.

Being the jerk that I am, I tried to keep going along.  I thought that maybe I just needed to give myself a little more time to adjust to the big deal international move.  That maybe my anxiety would calm down.  Sure, there were days I couldn’t manage, and decisions I just couldn’t make.  Sure, I would think of something and the panic would pound in my chest and I’d have to control my breathing and calm down.  But I was certain I could manage it still.  Then my husband surprised me with a trip to Paris, and I realized my anxiety was so out of control, I was scared to death of getting on the flight.  Because, you know, plane crash, horrific So scared, I began to hope that maybe I would get ill and then couldn’t go. To Paris.

And I realized that my anxiety was getting the better of me again.  I mean, to give up going to Paris?  I had lost my damn mind.

So I ran to my doctor and said “Help!”, and she said “How?” and I said “Prozac?”  and she said “Here’s your prescription”.  I said hello to my little friend  again, then got my happy ass on the plane to Paris and made memories with my husband.  It wasn’t a cake walk, getting on that plane, but I was able to do it and didn’t cause a scene that required air marshals to tackle me in the aisle.

And you know what?  It’s okay.  It’s okay that I need a little Prozac to keep my anxiety more at bay.  It’s okay that I need some help dealing with my stress.  Anyone who thinks otherwise, who thinks I should just suck it up and deal, well, they can come spend a week in my shoes.  And then another week.  And another week. And another week.  Because this life of mine and the things in it?  This is for the long haul.  It’s a never ending cycle of stress and worry and anxiety.  There will be bad times, and there will be good times.  I’m just going to ensure that I have more good times than bad, and if that means taking a little bit of Prozac, or needing to talk to a therapist, so be it.

I will also highly recommend it to others going through this special form of never-ending PTSD.  We’re so quick to get help for our children, get them the therapy they need.  Just make sure you get the therapy you need too.

Me, in Paris.

Me, in Paris, which was therapy itself.

 

 

About these ads

Starting off with a bang

10 Sep

Well, we’ve been in school for a full week and Maura’s decided to keep them on their toes.  I keep getting notes of “Lots of “no” today” and “Difficult time this morning”.  We’ve also now been told she can’t wear her Crocs to school because she decided to kick them off and go barefoot and was stubborn about this.

Of course, the little stinker came home, Crocs on, and kept those suckers on her feet ALL EVENING.

She also told us she had a good day at school.  A good day making her teachers earn their paychecks apparently.

I know it’s wrong, but I kind of laugh at it all.  I mean, what can you do?  Maura’s maturing, and yet not, so there will always be difficult times.  She likes doing her own thing, so she is bound to be balky getting back into the school routine.  Extended School Year (ESY) was not offered to us, so there was nothing to keep that routine in place.  And let’s face it, she’s my kid, and my mother tells stories about how I gave teachers hell, so she’s just keeping up with the proud family tradition.  Right?

It’s also funny how once again, she’s doing the opposite of what the others did.  When my other three were little, they were model students, then came home and were cranky beasts to me.  That’s actually quite the norm with little school kids adjusting to school life.  Maura has decided to do the opposite – she’s being a brat at school, then comes home and is the perfect child.

Part of me is really happy about this.  I couldn’t deal with cranky right now.

And I will state – we’re doing our best to make sure things go well at school.  We make sure she gets enough sleep.  We make sure she gets breakfast in the morning (today’s breakfast was a granola bar and eggs – yay protein!).  We send a full and relatively healthy lunch.  She gets cranky when hungry, so I’d rather extra food come home than her be hangry.  We make sure she poops (because not pooping makes her cranky too).  We’re doing our best on this side of things, I swear.  I will do what the teacher asks to make her life easier, even if it means Maura can’t bring her big My Little Pony dolls to school (she can bring dolls)…or finding a matching pair of socks so she can wear gym shoes instead of Crocs to school.

Hopefully she’ll settle down once she gets a hang of the routine again.  Otherwise, I may suggest that if they want a more cooperative student, allow Maura to start school at 9 am instead of 8 am.  Because she’s really not a morning person.  And every note home confirms that.

Not a morning person

Not a morning person

 

 

 

Today is World Duchenne Awareness Day #wdad14

7 Sep

10600673_10102817741171140_8140182037162772456_n (1)

 

Today is World Duchenne Awareness Day and pictured above is Aidan, who is one of the many faces of Duchenne. But what, you may ask, is Duchenne?

 

Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.

- See more at: http://www.parentprojectmd.org/site/PageServer?pagename=Understand_about#sthash.8qdDxfKj.dpuf

 

And who is Aidan?  Aidan is my friend’s son.

Aidan is an energetic 8 year old with an unrelenting spirit. He loves superheroes, video games and Legos, enjoys playing adaptive league baseball, and therapeutic horseback riding. One of his favorite things to do is go to the pool, and he is beaming with confidence after recently learning to swim and snorkel. He has a heart for animals, is a loyal friend, and has a joyful laugh that has to be heard to be described. Aidan was honored by being chosen to go to Disney World with Kidd’s Kids in 2012, where he had the time of his life.

As an infant, Aidan could not lift his head during tummy time and cried almost constantly if he was not being held. His parents were assured that he was “just spoiled”. Although he achieved milestones markedly behind his peers as a toddler, Aidan did progress, and developmental screenings returned results just within normal range. With no family history of genetic disorders, Aidan’s parents never dreamed of such an explanation, yet knew there had to be something causing their son to struggle. Over the next few years, they unrelentingly sought to find an answer, seeing dozens of medical professionals–multiple neurologists, diagnosticians, physical therapists, and occupational therapists. They waded through insurance battles and misdiagnosis. When Aidan was 6, and still unable to run, hop or pedal a bike, he began seeing a new physical therapist who happened to have previously volunteered at a Muscular Dystrophy camp. After several months and no progress, she recommend that Aidan see his neurologist. After reading the PT’s notes, the neurologist sent Aidan for blood work.

Two weeks after his 7th birthday, Aidan was at the park with his mom when she received a phone call that brought her to her knees. Genetic testing had revealed that Aidan suffered from Duchenne Muscular Dystrophy, a fatal disorder, with no effective treatment. Reality, in that moment, turned upside down for Aidan’s family.

Aidan now has a team of doctors that are on the forefront of Duchenne care, and his family has dedicated themselves making every moment count. In the short time since his diagnosis, hope has appeared on the horizon. Thanks to advocacy and research, for the first time, promising clinical trials are underway that are changing the outlook of Duchenne Muscular Dystrophy. Once again reality has turned upside down as the impossible becomes possible.   – cureduchenne.org

 

I have watched my friend struggle to get to the diagnosis stage, a struggle I knew so very personally.  The thought that her journey lead them to this sort of diagnosis was hearbreaking.  Watching how they have handled this diagnosis has been nothing but inspiring.  They do live life to the fullest, Aidan and his family, and they’re working hard to bring awareness and fight for a cure.  I want that cure for them, and so, I will help bring awareness on this day.  Maybe ask you to take a break from the ice bucket challenge and donate here instead.  Repost this post even.  Release a virtual balloon on your Facebook page today.

Even Pope Francis is getting into it – so if you’re a good Catholic (or just a fan of Pope Francis) – you should take notice.  Yeah, I pulled out some Catholic guilt for you.

10371650_10152440515819983_8467205364058137531_n

“September 7, 2014, will be celebrated for the first time, all around the world, the international Duchenne Awareness Day. I want to thank you and everyone who works every day to fight this disease and assist children and boys affected by Duchenne, for your engagement.

That day I’ll pray for you during the Mass, praying God to bless you and give you the strength to continue this humanitarian fight.

Please, I ask you and everyone who fights with you to pray for me.

In a brotherly way,
Francisco “

 

But most of all – do it for all the boys and young men like Aidan, who are fighting every day to live life to the fullest.

550081_10101183448072610_1841776135_n

 

 

 

Follow

Get every new post delivered to your Inbox.

Join 6,918 other followers

%d bloggers like this: