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The time I realized we didn’t get a Big Reveal Moment

1 May

So many special needs story start with “When we got the diagnosis…” or “On the day he was born, we knew he had…” or “The doctor looked at us with a sad expression and told us she had…”

I’ve read these stories for years now, and yet it just recently occurred to me that Maura’s lack of diagnosis has short-changed us in yet another department.  We never got our Big Reveal Moment, where the diagnosis was clear and astounding, where we could have that defined reason to mourn all we lost.  We never had that moment where we could call family and friends and say “Maura has THIS” and they could all rally around us, offer support, or choose to ditch us because it was all too much for them (hey, that happens too, it’s a reality.)

We never got our moment in the medical spotlight.

I know, it sounds silly, doesn’t it?  And it is.

But it’s not.

For a couple years, we floundered about with Maura.  We weren’t sure what she needed or what to ask for.  When I did say something, I was told either things would get better, that she would catch up, or that I may be overreacting (which was then followed by the prerequisite “Other people have it worse” statements – which are never cool by the way.)

In a way, I felt we were illegitimate in the special needs world, the bastard red-headed stepchild amongst the legitimate blonde heirs.  Luckily, I love red hair and have never wanted to be a blonde, so at least I was up for this role I was placed in.

Eventually everyone was on the same page – Maura was indeed disabled.  I remember when she was about four, finally using the phrase “special needs” – as in “She has some special needs”  – to explain her.  I used that particular phrase because people understood it without me having to explain further – because there was no further explanation.  It put us in a category that was recognized and fit us.

Then Maura was diagnosed with epilepsy, and any last naysayers were hushed.  We were dealing with something serious, something out of the ordinary.  We were indeed Special.

However, the time for the Big Reveal Moment was long past us.  Even the diagnosis of epilepsy was more of a secondary diagnosis, versus an all-encompassing one.  We were all used to Maura being different at that point.  She was wearing glasses and ankle braces and diapers at age four.  She wasn’t speaking really, or able to sit on a swing without accidentally falling off.  She was definitely different.

And yet, the diagnosis of epilepsy gave me a moment – maybe not a Big Reveal Moment, but a moment none-the-less.  I could read about it, tell people about it, have people know exactly the seriousness of this diagnosis.

But I didn’t mourn.  I was long past the time of mourning.  Instead, I was a bit giddy at the idea of Maura having something explainable, something that came with books and websites and a freaking awareness ribbon. Because it’s all about that awareness ribbon you know.

You don’t get a ribbon for “I don’t know what she has.”

And so the time passed.  We embraced the idea of having a generic disability.  I learned about the phrase “orphan disease” and a hundred different syndromes Maura didn’t have.  Eventually my world expanded, and I started reading other people’s stories.

“The day we got the diagnosis…”

I realized…

We never got that day.  We never got that one definitive moment in time where someone said “THIS is how your life is going to change.”  There was no crisis moment, no door closed so a window could open.

It just happened, like the grey hairs sneaking up on my head.  One day, I looked at us and realized we had become a special needs family.  That Maura was disabled.  That this was a lifetime commitment.  And somehow, I had come to terms with it all, little by little, as did everyone else around us.

Would it have been better if I had a Big Reveal Moment?  I don’t know, maybe?  Maybe not.  Other people would have gotten it sooner, and it might have saved me some judgmental pain, as no one would have told me I was overreacting.  Maybe I wouldn’t have gotten the “They have it worse” stories.  I could have definitely survived without all that. I might have been able to better advocate for Maura in the early years, by saying “She has THIS, and studies have shown she needs THIS!”  Hell, I may have gotten a meal train out of it for a week even, pasta dishes to heat up, maybe some ice cream for me to emotionally eat to cheer up the kids.

But then it wouldn’t be my life if things went like it did for other people.

You can still send ice cream though.  For the kids, of course.

btdt got the t-shirt

btdt got the t-shirt

 

 

 

 

The Longest Day

27 Apr

Yesterday didn’t go well.

Yesterday was full of mood swings.  Some of them caused by eating cupcakes for breakfast before Mom was up.  Some because Mom said no more tv.  Some because we stubbed our toe.  Some because the sky was blue.  Some because a sibling dared to walk into the same room.  Some because because.

But it was a very long day.

I started writing about it on Facebook, in between running around trying to diffuse each situation.

Woke up at 7 am to Maura giggling and watching cartoons on my computer. got dressed, came back out to find her eating a cupcake.

By 9:30 am, I was tired of her being all ADHD on said computer by starting a show, listening to a minute of it, then switching to a new show, then listening to one bit, then switching to another show…

By 10:10 she was sobbing b/c I had disabled the touchscreen feature, so the one show ended, and the mouse wouldn’t work so she threw it, so I said she was done.

10:19 and she’s giggling with her My Little Pony dolls and I’m trying to figure out how to get through the rest of the day with Miss Mood Swing, what with my already supreme crankiness.

Now, usually, she’ll go through a hissy fit and calm down and that’s that.  But not yesterday.  Yesterday, it just kept escalating.

10:35 – she was happily playing downstairs…watching tv…
10:36 – she was screaming b/c I turned off tv.
10:45 – she was happily playing with her dolls in the living room.

11:00 – I caught her in the dining room with a laptop which doesn’t work, trying to make it work.
11:01 – I give up on trying to do anything productive, like laundry or brushing my own teeth, and open a beer.

Yes, this all happened while I was trying to do those regular household things.  No, I did not open a beer.  And not just because there was none in the house.

11:06 – she sets up a laptop and mouse on the ironing board. I tell her no
11:06:10 – screaming fit begins. She slaps my hands away, whacking one of my fingers really well.
11:07 – screaming on stairs (her not me)

11:09 – she’s once again happily playing with dolls.

Let me just state – it’s not normal for her to lash out like that at me.  But I was pointing at the stairs trying to get her into a time out and she was protesting that in her own way.

11:43 – from the bathroom, I hear Maura screaming in a “Go check that out” sort of way (vs a “My will has been thrawted” sort of way) Run out to find her on the stairs, screaming at Mim, yelling at Collin, neither who had done a thing. I think she bent back a toenail in playing. Realize her toenails have grown a bit horribly. Go to trim nails, which leads to her kicking me in the back with the free foot until I clip a tiny bit of toenail. Then she’s all “I DID IT!” and allowed me to trim the other nine.

Then she asked for tv. I said no. She threw her dolls and screamed.

So, exactly when will the neighbors call CPS on me? LOL!

No CPS was called yesterday, despite the screaming.

12:04 – she’s once again playing happily.

At some point, I have to leave and forage for food stuffs. I don’t want to take her with (because Friday, she had a melt down outside the store and I barely convinced her to get dinner there) but I also don’t want to burden the teens with Her Moodswingness.

See teens?  I do care about you too!  Even if you do eat all my food.

12:50 – after slightly trashing my room and being told she couldn’t play in there, Maura happily left said room without screaming. Made my escape to buy more food.

Yes, I was able to leave the house and go shopping for food.  And by “slightly trashing my room”, upon further investigation, she dumped out all the clean laundry of mine that I hadn’t even gotten to think about folding because I was too busy playing referee to her moods, and emptying out half a closet.  At one point, as I checked out of Target with a Cherry Coke and Reeses, the cashier asked if I wanted those left out because he would, haha.  I told the nice young man that yes, I did want them left out, because it was still too early to drink.

I probably wasn’t fit for human consumption at that point.  But I did return home, where nothing was in flames and no one was sobbing.  So, you know, there’s that. I used that time of peace and quiet to actually eat food.

3:26 pm – it’s quiet. Too quiet. Both boys are out. I go to find Maura, and she and Mim are on Maura’s bed, watching My Little Pony on Mim’s school laptop.

I’ll let this slide and enjoy the peace.

3:45 pm – quiet time over, as is the show. Girl now sobbing on me.

3:50 – much howling and dramatic running upstairs to sob in her bed as I turn off the tv

3:59 pm – I’ve told her to go lay down, after screaming, howling, sobbing, biting her hand, stomping her feet, hitting her hand off the stairs in anger and frustration…all over the tv. 

4:01 pm – the sobbing and howling has stopped. Part of me hope she naps, part of me is afraid she will nap because it’s after 4 pm now. Part of me thinks I should check and make sure she’s still breathing…I think I’ll go peek…

4:05 pm – I can hear her doing dramatic reenactions with her dolls in her room.

At this point, I couldn’t even twitch, I was so over it all.  I knew there was more going on than her just being a brat, but since she doesn’t have the ability to explain just what all was going on with her, I got a face full of screaming and mood swings.  You hit this point where you either lose your ever-loving mind, or you get weirdly zen about it all.  I’ve perfected the weirdly zen way thank goodness.  Yes, it would have been easier to just give in and let her have the blasted tv, but it wouldn’t be worth it in the long run.  My persistence paid off instead –

4:49 pm – she has had pizza and another cupcake and is genially playing in her room with her ponies and the dollhouse.

Thank you Jesus.

Okay, the cupcake probably wasn’t the smartest move, but it was after she at a lot of pizza and fruit and other good stuff, and it wasn’t a hill I was ready to die on. And after ALL of that…Maura was back to her old regular self for the rest of the evening.  Even when told no, she didn’t lose her mind, but accepted it.  I tucked her in bed ten minutes early anyway, just to be safe.

And this morning, I happily stuffed her onto the bus and waved good-bye with a big smile before emailing her teacher to warn her of yesterdays moods.  I may even clean up the carnage from yesterday.  Or just sit here drinking coffee and poking about Pinterest and listen to birds chirp outside.

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I’m still just a mom

20 Apr

I blog about our life with special needs.  But it doesn’t make me an expert.  You may know a woman who’s daughter has Down Syndrome, or a dad who’s son has autism, but that doesn’t mean they understand what life is like with a child who is tube-fed, or who uses a wheel chair.  You don’t expect someone who has cancer to understand what it’s like to have schizophrenia, or a person born without legs to understand what it’s like to be born deaf. Yet somehow, as soon as you say your child has special needs, there are those who assume you know everything about all kinds of special needs.

It doesn’t work like that.

We’re not medical experts, we’re not therapists or special educators.  Well, most of us aren’t, and it’s usually a fluke if you are.  Myself personally, I had no desire to be either a teacher or a nurse.  I didn’t want to work with kids or be a doctor.  I didn’t really know anyone with disabilities growing up.  Honestly, I don’t know where kids like my own went to school, but they didn’t go to the local one.  There was one girl a bit older than me at our church, who had Down Syndrome – she was lovely and bright and always had a smile on her face, as did her parents.  Honestly, I think I was the oddest kid I knew, what with my psoriasis coated arms and legs, and massive speech impediment (which today I can diagnose as a phonological disorder paired with an articulation disorder).

I didn’t grow up with the idea that someday I’d have a child with disabilities.  I never prepared for that, getting a degree in nursing or occupational therapy.  Nothing in my obnoxiously healthy family ever gave us that idea that this was an option.

I was just a mom having another baby.  The baby who was going to be our last, so that when she went off to college, we’d be in our late 40’s and still able to go travel the world.

Needless to say, that plan has changed.

I was just a mom who knew what it was like to have babies who were overachievers, who crawled early, walked early, talked early.  I didn’t know what normal development looked like, so Maura’s late development was chalked up to being a late bloomer, and not something to be worried over.

I was just a mom who had to learn about blood draws and geneticists and therapies.  Just a mom who was thrown into the world of special needs with no guidebook except that stupid “Welcome to Holland” essay that did nothing but piss me off.

I was just a mom who spent hours at night scouring the internet for some clue as to what was causing my child’s problems, making lists to take to doctors, scared of both getting an answer and not getting an answer.

I was just a mom thrown into the world of special education, who had to learn the ropes as they were being set on fire, trying to decide which hill to die on, meeting amazing people along the way who did chose these particular professions that helped my child.

I was still a mom to three other children who needed me, who had their own things to overcome.

I am an expert on Maura.  I am an expert on our own issues.  I know a lot more than the average joe about constipation and seizures, about milestones and delays and genetic tests.  I should get a friggen honorary speech therapy degree for all the time I spent in it for myself and my kids.

I still don’t know what it’s like to have a child with mobility issues or severe autism.  I still don’t think I’m capable to be a teacher or therapist.  I still have no desire to be a nurse.  What I do know is all peripheral knowledge, because having Maura has opened up my world to more of these issues in the way of friends and their lives, because I’ve gotten to know other moms and their kids.  Moms who have questions and hurdles of their own, who still have dishwashers that need unloading and Halloween costumes to come up with and morning fights over clothing.  Dads who juggle the normal and the extraordinary on a daily basis, taking it all in as their own normal.  Moms who have said to me “I don’t know what it must be like, not to have a diagnosis.”.  Moms who are always open about talking about poop or tween attitudes or the struggle to find flattering jeans that aren’t mom jeans. Dads who sing along to “My Little Pony” and “Frozen”.

Because we’re still parents.  We’re experts on our own journey, but we’re still just parents.

I’m an expert on Maura, but I’m not an expert on all special needs. I’m still just a mom. I know a bit more than the next person, and you could too by just listening, by learning.

 

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