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Ups and Downs.  This is your life now, a series of peaks and valleys. The rollercoaster ride of special needs parenting can be very rewarding, defeating, happy, depressing, exciting, lonely, and so many more emotions to list.  It truly is a rollercoaster ride. One minute you’re up, then next minute you’re down, and then you’re riding the wave of stable.

Stable – The Section of Rollercoaster where you Coast

Stable.  This can look different to different people.  For some, it may mean medicinally controlled and seizure free.  Stable can translate into nothing changing from the last doctor’s visit.  For us, it means Riley has relatively controlled seizures, her shunt valve remains at the current setting that’s working best for her, that’s she’s gaining the appropriate amount of weight per nutritionist and/or GI, that we don’t get a call from the school with a concern that they can’t figure out on their own, and that life is just… calm.

Stable for us also means that the big brother AJ is also doing well at school, getting the attention that he deserves and that this mom is not staying late at work or daddy isn’t overwhelmed with school.  Luckily, I have amazing parents who help A LOT.  I’m not sure what our stable would look like if I didn’t have them to help.

The Darkness

Why am I even talking about this?  Well, it’s simple.  Even when things are stable you have no idea when something dark will sneak in.  I’m talking about the dreams, or more appropriately, nightmares.  I use to have a lot of these bad dreams.  Here we are stable, in a good place, and I’m having nightmares again.

I haven’t been sleeping well for weeks again.  I was on a medication to help with sleep.  It was great.  I slept well, I did better mentally, I was happier.  The formula changed a couple months ago on my last refill.  “It’s the same amount of active medicine, and you’ll just notice the shape is different.  Nothing else to worry about,” was what the pharmacist had told me.  We’re now two months later, I’m back to being aggressively unhappy, not sleeping and stressed.

Not getting restful sleep can definitely have an impact on how you handle your world.  Some days I did not handle it well, other days I was supermom.  It’s not something you can maintain for extended periods of time though.  You need to rest.

As you may know, as a parent of a child with special needs, you find yourself constantly running at a higher level all the time.  You have to be up on the latest trends, drugs, treatments, available therapies, specialists, doctors’ appointments, school staff, IEP, assistive equipment, weather, and all the other things that fly in and out of my brain.  What is considered normal for us is high stress for typical families.

Oh, That’s Normal.

“Oh, my daughter is gasping for air again?  That’s normal, it usually lasts for a minute or two and then she’ll be back to normal.  Just time it like a seizure.  I can assure you she’s getting the oxygen she needs, we’ve taken her to the hospital for this a few times… yes, her oxygen levels were normal during this episode. If school protocol is to call 911, I understand.”

“Hello, is this Riley’s Mom?  She’s having a seizure and we’re almost at the 5-minute mark, I just wanted to let you know the nurse is about to administer the rescue meds and call 911.”

These are conversations I’ve had with people or a call I’ve received from the school.  What’s normal for us, isn’t always normal for others.  We take Riley to the doctor for a cold and find out she actually has pneumonia.  This is our life.

Exit Light, Enter Night

We have ups and downs, we’re on this rollercoaster ride and it doesn’t stop.  It’s life.  When we’re on the part of the ride that slows down for a bit and just cruises along, you would think your brain would allow itself to take that time to heal.  My brain likes to throw in nightmares and lack of sleep when life is good, just to keep me on my toes. 

One of my more recent dreams was about being on a cruise ship made of chocolate. Don’t ask, I’m weird. 

I was holding my beautiful little girl in my arms watching as these gorgeous teal waters went from calm to having these massive waves headed straight towards us.  The first massive wave hit, tumbling the chocolate ship through the water, complete 360 top over bottom.  When the water started to drain away, I couldn’t find Riley. 

I looked over the rail to the lower deck and saw her at the bottom of the pool.  I dove in, brought her to the service and immediately started performing CPR.  She started breathing again and we were immediately hit by the next wave. 

Before we could even complete this end over end circle, I woke up gasping for air.  I thought to myself, “Well that sucked,” and reluctantly fell asleep to be right back at the beginning of a dream.  It was literally on repeat from about 1:30 am to the time my alarm went off at 5:15 am. 

Not a Morning Person

I hated myself when I got up that morning.  Was it the medication?  I’m not in fear of me drowning, but Riley.  I’m afraid of not being able to stay in control, and its not just spiraling out of control, but repeatedly spiraling.

I walked into work that day with a smile on face.  Not because I was happy, though. It was more because I didn’t want anyone to know I had a rough night.  I really struggle with answering the very simple question of “How are you?”  I want to talk, but not everyone likes to listen, and some people just really don’t care. 

One of the gentlemen I work with has made it a habit to ask me if I had a good night when he sees me in the morning. He hasn’t quite learned I’m not the best in the morning.  I’m pretty much a “leave me alone until I start speaking” kinda gal. 

I’m pretty sure many of you parents in similar “boats” understand this: People want to know, but they don’t.  “Oh I totally understand, my daughter is fussy at night, too.”  I’m sure she is, and I do feel bad, but think about this for years. 4 years of little to no sleep (5 if you include the little guy and 6 years if you include uncomfortable pregnancy sleeping). 

Yes, we get a break from time to time where my husband and I can take a night or two to ourselves and, I kid you not, we’ll stay in our hotel rooms and watch TV and sleep and not actually go out and do anything. 

The Ride That Doesn’t Stop

Our rollercoaster doesn’t end when our daughter turns 18.  We will never be empty-nesters.  That thought doesn’t make me sad at all.  I love my daughter and the life she’s brought to us.  That doesn’t make it easy, though.  Some days I want off the ride.  I need a time out.  It could be a 5-minute time out, but honestly I want a week, a month.  I just need time for me to figure out, well… me.

The Lost Child

And that, my friends, is okay.  You’re allowed to feel down and out.  You need to take the time to grieve for yourself.  I lost a child.  I never had time to grieve for Laila.  My Mom and I were put in a room away from the other expectant mothers, so I can sob quietly waiting for the doctor to arrive and explain that my daughters heart was growing abnormally and just stopped. 

I had to carry that child until Riley was born.  Want to talk a little bit about mental health?  Consider being a living coffin.  I know some people will think that’s being a little dramatic.  I carried Laila for 16 more weeks until it was time for Riley to grace this world with her presence.  Every other week I was getting an ultrasound to check Riley’s status;  we were told this could go either way, good or bad.

We checked Riley, then we’d check Laila. As we watched Riley grow, Laila just slowly dissolved away over the next 16 weeks. 

You need to take the time to grieve;  for the life you thought you’d have, for the things you thought you’d be able to do, for the milestones missed, for the person you once were.  If you don’t do that for yourself, you never fully let go.  And to move on with the beautiful life you have in front of you, you need to let it go.

Letting Go

Now that doesn’t mean to forget.  I would never want to forget my angel, Laila.  It just means that you let the pain go, the grief that you experienced.  You have the opportunity to be an amazing parent when you let that negative go and be present in today.

Once you do that, hopefully you won’t ever have to find yourself on a chocolate cruise ship tumbling through wave after wave of self-doubt and lack of control. 

As you may know, I’ve been a bit absent in 2019.  This post was actually written in November of 2018.  A few reasons I didn’t post it then:

  1. I wasn’t self-confident enough to post something so raw.  It was hard to talk about Laila, and I wasn’t ready.  I know I need to talk about it.  You’d be surprised to know how many parents have lost a twin they had to carry until the brother/sister was ready to be born.
  2. I was ashamed of how sad I was at the time and, back to lack of confidence, didn’t want others to know.  I don’t always have it together.
  3. A lot had happened in my professional world in December/January, that I just couldn’t focus on this site at all.  I’ve been taking the time to get my life together, get healthy, get organized and much more.  As a result, there will probably be some minor site changes coming soon, as well as some refocusing.  There will always be a home here for these discussions on parenting and children with special needs.

Sometimes the hard topics to discuss are the ones that we need to focus on.  Getting your mental health in order is a big deal, because let’s face it, it’s not easy.  There are people will tell you that you just need to change your attitude, but it’s not that simple, is it?  That’s part of it, I’m sure, but there’s so much more.

Don’t give up on yourself.  Keep working towards being the best version of yourself.  You’ve got this.

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Sara is a mother of two, wife and full-time employee. She's also a parent of a child with special needs.