Struggle

Anxietyville, Population:1

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This probably won’t be my most fun post and I’m really on the fence about posting it but I feel like it’s something a lot of people, especially special needs parents, go through and it might help someone else or help me find some solidarity in the situation.

For the past year, I have been struggling with anxiety/PTSD and I’m currently having a bit of a bad week with it.

Little back story.  I remember when Paige was around 2 months old one of the first inclinations something was off was her vision.  She wasn’t tracking objects and not really all that smiley.  Physically, she was too young to worry about any milestones but the vision stuck out and we were referred to a pediatric opthamolotogist.  The eye evaluation turned into an MRI which turned into a Lissencephaly diagnosis.  The feeling of being utterly blindsided is forever burned into my memory and took a major toll on my mental health.  Luckily and thankfully, I knew myself enough to know that such a huge change in my life would require a little extra help.  I found a counselor that specializes in navigating grief and loss and it didn’t take long until we started tackling how to process the pain of being a new special needs parent and all the ins and out of what that entails.  What I didn’t expect was just how many layers and ugly heads grief and trauma can have.  The hardest and ugliest, so far, has been the post traumatic stress that erupted about a 9 months after I first heard the word Lissencephaly.

I remember taking Will to his first gymnastics class last year and it was his very first activity that didn’t involve me being right there with him.  He was a new 3 year old with a ton of energy and absolutely loved the class.  For some reason, I was a nervous wreck about it and completely analyzing his behavior in the class.  I counted the number of times he needed to be redirected, made sure he was following directions, and didn’t take my eyes off of him for a second.  I knew my behavior was a little quirky but I chalked it up to not having control of the situation.  Then, that threw me off because never in my life have I been a control freak.  I knew something was different but couldn’t really pin down what it was.  I just knew I was anxious and couldn’t stop it.  He started preschool shortly after and it was another activity where he wasn’t in my care, but unlike gymnastics, I couldn’t be there with him to peep in.  Talk about stressful for me!

My anxiety continued monitoring and tracking Will’s development.  Almost everything he did I analyzed.  Thoughts of how Paige didn’t meet milestones before her diagnosis flooded back to me.  Thoughts of how I would run to her pediatrician and pour all of my observations out to them only to be told it was too early to worry.  I KNEW something was wrong with Paige very early but I didn’t know what.  And even though I knew something was up never in a million years did I think it was as severe as it turned out to be.  I always remembered this feeling when Will did something like get out of line, miss a turn, or needed to be redirected, I thought it meant something.  If he recited a movie line or walked on his tip toes, I ran and did an online evaluation for Autism.  I had that same gut feeling about Paige before but now I had it with Will.  I just KNEW something was going to be wrong, or off, or diagnosable.  Frankly, it turned into a debilitating fear that recent history was quickly repeating and my anxiety spiraled.  To cope, I bugged Andrew, my mom, and others incessantly over whether or not I thought Will was okay.  I would ask his teachers about how he was doing and if I heard something that wasn’t absolute perfection I’d freak out.  Even if all of those people told me a million times he was perfectly fine and thriving I just didn’t believe it.  Something incredibly rare happened once it could happen again, right?!

After lots of analyzing myself and help from lots of people, my grief counselor suggested I have PTSD from the diagnosis and the trauma was causing me to take out my fears elsewhere, in my case.. Will.

As a person, I felt relieved it was more than anxiety but as a mother, I felt absolutely terrible.  Here i have these two beautiful children.  One who is able to do many things and one who can’t do anything.  It’s like parenting on two different planets.  I felt like a monster but my grief counselor helped me realize that due to the trauma and stress, my instincts were not reliable at the moment because I was always going back to the worst day of my life.  She and Andrew both have described it like a veteran returning from war and hitting the deck when they see or hear a firework going off.  A typical person would see beauty in the sky but to the veteran it takes them back to a place of fear and fighting.  That’s how I felt when I was analyzing Will.  A typical person would see a child learning and growing joyfully.  Some areas faster than others but on a good and healthy track.  I saw future fear and panic of someone telling me he wasn’t doing things age appropriate and needed an evaluation, no matter what the activity was.

At that time, I was unable to look past the trauma and i was fearing fear!  I got a prescription of Zoloft and it helped tremendously.  I saw the fog lift and my rational thoughts were slowly coming back.  When an anxious thought came in my head I was able to talk myself off the ledge and realize it wasn’t me but the trauma that was making me feel that way.

One thing I promised myself was that I wouldn’t let fear dictate my life.  Andrew and I always wanted a big family and I wasn’t going to let my fear get in the way of that.  With the help from my doctors, I successfully weaned off my SSRI and was confident in my coping skills to get me through an unmedicated pregnancy.  I actually have been pretty good this pregnancy and have been staying positive.  Sure, I’ve had super anxious moments about the baby boy coming in January, but we’ve gotten good reports so far.

Now, when I reread what I’ve written it looks like my life was completely dire but, the funny thing was, it wasn’t.  I was/am cognizant enough to not let Will pick up on my insecurities.  Sure, I bother the hell out of Andrew and my mother, but I’m still able to enjoy life and have special moments with Will and Paige.  Even when I look back at that point in my life last year when I was really struggling, I remember the best things about Will and Paige.  That’s the funny thing about anxiety.  It’s not always there but it has the potential to always be there.

Unfortunately, this past week I’ve been thrown into Anxietyville, Population:1, again.  I’ve been dealing with a lot of the same insecurities.  Will had a speech evaluation that everyone gets at his preschool and it spiraled me back to the eye exam that led to so much more.  I fear this evaluation means a bigger diagnosis and his future will be riddled with therapy like Paige’s is.  Again, I’m fearing fear!  This time, I know that it’s not me and I can’t really trust my instincts at this time and I have to rely on those who are more rational around me.  And I know, whatever happens we are perfectly able to handle and deal with it.  And also, Will is the coolest kid ever and he’ll be just fine!

Frankly, it’s a sucky feeling to not be in control of your emotions and rampant thoughts.  I’m learning grief, trauma, and its recovery isn’t a straight line and I’m constantly picking myself back up.  I hope it evolves into a more natural place, but until then, it’s a struggle.  Currently, I’m able to rationalize but the anxious feeling in my gut just won’t go away and it’s like it’s a constant reminder of my negative thoughts.  Being hormonal and pregnant doesn’t help, either.

Throughout my struggle, I’ve met so many people who are going through a very similar situation and that’s helpful.  Many Liss parents I’ve met throughout our journey are going through with the same thoughts and grief.  Still, people don’t talk about issues like anxiety and PTSD because there is a stigma.  In my case, I don’t want to talk about it because it’s just not a fun conversation.  Also, I don’t want it to be my identifier.  All I know is that at my worst, I desperately wanted to talk to someone who understood how I felt and if this post makes someone feel less alone, than it’s worth it.

I know bad things will happen and I’ll get hard news at some other point in my life, but I know that the wave will pass and I’ll also get GOOD news and GOOD things will happen too.

Meltdowns, Pep talks, and Picking up the Pieces

courtesy of Pinterest

courtesy of Pinterest

A part of the grieving process of a Lissencephaly diagnosis is mourning the loss of the child we thought we had and learning to appreciate the child that we do have.  I’ve written about this in previous posts and I feel like this will be a life-long process. With every stage of her life there will be constant reminders of what she won’t be able to do.  Right now, Paige is 8.5 months old.  She should be sitting up, maybe crawling, definitely exploring and playing.

But she’s not.  And according to Wikipedia, she may never do any of those things.  (Just a few reasons why I don’t search anymore…)

Instead, I remind myself what she can do.  With help, she can explore with her mouth.  She’s getting stronger during tummy time.  She’s starting to bear weight on her legs.  She’s smiling, laughing, tracking, and alert.  She’s thriving.  She’s here.

In the upcoming months and years there will be more age-related milestones that will inevitably make me sad.  When my friends will be taking their daughters to dance class I’ll be taking mine to a specialist.  When they take theirs prom dress shopping I might be taking mine for a wheelchair fitting.  When other’s kids are looking forward to school, sports, and activities, I’ll be wondering when Paige will have a seizure and if I’ll be able to lift her.  Or worse yet, if I’ll even get to have that time with her at all.

I know all of this might seem far-fetched, and once again, it’s absolutely not at all productive, but these things do creep in my mind and I hate it.  I hate that I even give the thoughts my time and energy.  I hate how I feel guilty when I do get this way.  I hate how I sometimes get jealous.  I hate that I probably am being selfish and feeling sorry for myself.

I’ve found that my worst thoughts come when I try to suppress them and be the “bigger person”.  I know these feelings aren’t particularly attractive characteristics so I compartmentalize my grief.  When I put these emotions away, I quickly find that my body and brain simply has a limit and that’s when a meltdown occurs.  Pretty recently, I decided to just let myself feel how I’m feeling when I feel it and then LET. IT. GO.  When I go about it this way, my feelings last a few moments and I can carry on.  When I keep all of them in and push them aside, they back up and it becomes an entire day of crying.  I simply can’t do that.

I give myself pep talks to keep going.  I remind myself that Paige is an absolute delight and she’s the most pleasant baby I’ve ever met!  I kiss her chubby cheeks and smell her sweet neck and love up on her constantly.  Actually, being with her keeps me calm.  SHE is doing wonderful and I am the one who is sometimes not.

In my previous post, I wrote about how Paige brings people together and is just a complete being of joy.  I still stand by that and will be proud of her no matter what she can or can not do in her life.  She amazes me every day and I am happy to have her a thousand times more than I am sad about her diagnosis.  And she will always be my best girl.

courtesy of Pinterest

courtesy of Pinterest

NO MORE STEROIDS!

A big fist pump to the air was given yesterday after I gave Paige her last steroid injection!  She was an absolute trooper throughout all of them the past four weeks and we’re so thankful that it did it’s job.  Paige is still not exhibiting any infantile spasms and that is still a huge thing to be positive about.  She’s also back to the happy baby we knew and it’s such a relief.  

The first two weeks during her course consisted of a high dose of the steroid (ACTHar) in her thighs twice a day.  With every dose she was given vitamin B6 and Zantac for acid reflux.  During this time, she was a completely different baby.  Her bright eyes became heavy, she never smiled, and she just looked miserable.  You can tell it totally wiped her out and made her pretty zombie-ish.  It was heartbreaking.  Even though we were told that it was temporary, we still feared that it wouldn’t be and we missed our happy little snuggler pretty quickly.  She also ate like a horse and gained about four pounds in these two weeks!  Yikes!

The third week started the weaning process with only one injection a day at a lower dose.  Pretty easy right?!  Well, this was actually the most miserable and exhausting week. Sleep didn’t happen and Paige was up every hour and was at her most ravenous and was very fussy – we called this her ‘roid rage.  She was still pretty miserable and didn’t want to be moved around a lot.  The notes from her therapists said that she was: not alert, not engaged, not totally responsive, and rigid.  Our saving grace was actually a pacifier, that we dug up in her sock drawer, and it provided a lot of comfort to her and a lot of sanity for all of us!

And then HOORAY! The last and final week!  This past week, Paige only received a low dose every other day with yesterday being the final day.  I’m not exaggerating when I say that her personality changed almost over night early in the week.  Andrew was getting ready for work on Monday and I was making coffee (or something) when he called me over and yelled, “She’s SMILING!”.  

IT. WAS. AWESOME!  

Andrew and Paige always have had a special bond and it was really touching to see how excited she was when her daddy was talking to her.  She was just sooo smiley and alert!!  She hammed it up for her therapists and the adjectives in their notes turned to: active, engaged, pleasant, and feisty.  DEFINITELY easier to read than the previous week’s notes from them.  Her sleep even got back to normal and she was back to snoozing through the night!  Paige also seemed to be stronger and also rolled over from tummy to back with very little assistance. This was HUGE and we let ourselves be happy about this.  Celebrating the good times is definitely more fun then worrying and fretting.

Buuuutttt, it happens…

As a family, I’d say we’re doing pretty well considering it’s only been a month and a half since diagnosis.  However, since appointments and hospital visits have been slowing down I’ve had some more time to think and I’ve had some pretty bad days.  For so long, we’ve tried to look on the bright side and keep the negative thoughts at the back of our minds but this past week I couldn’t handle it anymore and I let it out.  

I let myself feel.  Whatever emotion I had, I let it out.  To be honest, I’m not proud about a lot of the things that came out of my mouth or in my head.  I can’t tell you how many times I screamed “IT’S NOT FAIR!” and asked myself “why MY baby?”.  I felt sorry for myself because I tried to do everything right during my pregnancy and my baby has a terrible diagnosis while some women do drugs during theirs and have completely healthy kids.  I know it’s not right, but I’m being honest and it’s how I felt at the time.  Why any baby, really?  Why any family?  Acceptance with the diagnosis comes in waves and it’s been a struggle.  I’ve always accepted Paige but I’m having trouble with the “why”.  While I can go about my day and have genuinely happy moments, there is a constant heaviness in my heart that won’t go away.  I’m not sure it ever will.  I’m hoping and praying I get to a point where acceptance isn’t such a struggle and our “new normal” becomes more natural.  

Thankfully, Andrew doesn’t really let myself feel this way for too long.  He has been such a beacon of strength for me (and everyone, really) during this time and encourages me to snap out of it.  While I have been pretty faith-based and look above for guidance, Andrew turns to science and medicine for answers.  In that way, I think we balance each other and it’s how we keep each other grounded, hopeful, and strong.  I think I definitely needed to cry it out, but after a while it’s not productive and it certainly isn’t good for Will to see in a puddle of my own tears for days on end.  We are very mindful that this whole situation affects him and we want every transition to go as smoothly as possible for our family. 

If there’s anything I’ve learned, it’s that we must live in the now.  Right now, we are okay.  Right now, we have a lot to be thankful for.  And that makes me feel so much better.

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