Sunday, February 18, 2018

Unveiling Ignorance: The Other A-word. Chapter 1

Sometimes ignorance isn't bliss. Sometimes ignorance is just......ignorance. It was almost a year ago that we walked into a tiny room with life as we knew it (parents of a frustrated, speech delayed, extremely shy boy who needed lots of re-assurance), and walked out with a diagnosis that would change our lives forever (parents of a child on the Autism Spectrum). 
My perception based on limited past experiences with this disorder was lined with grim thoughts, and it was most definitely something that could never happen to my own child. To me, autism was a dirty word. It was life behind invisible bars without parole. It was scary, intimidating, overwhelming (which, ironically, is probably how Dillon was feeling about life every day in general). I didn't handle the news gracefully. I was rude to the messenger, and to be completely honest, it's because I was angry. Angry and fearful and sad.
I was angry that I felt judged when they asked why we hadn't had Dillon evaluation sooner. I was angry that I had to listen to a woman label all of my son's short comings, and overlook all his amazing qualities. I was angry that I felt like she made some things up, and twisted other things into something negative instead of just quirky. I was angry at myself for not biting the bullet and scheduling an evaluation sooner.
I was fearful that my son would be robbed of experiencing what I considered a "normal childhood". I was fearful for what this might mean for his long term future. I was fearful that this would be a label that haunted him forever with stigma's and associations.
I was sad that my hopes of Dillon "outgrowing this stage" were completely shattered. I was sad that his frustrations with life were stemmed out of being misunderstood and that this might be the case his entire life. I was sad to think that my boy, my sweet cuddly handsome boy, would struggle with things beyond what neuro-typical children already struggle with. I was sad that so often, my boy was sad.....or mad......or confused.
I was also motivated. Motivated to make his life and his future better. While trying to process my feelings, I also knew my boy (not even 3 years old yet) needed me to pull my head above water and teach him how to swim. But what the hell did I know about autism and how to raise a child with a neurological disorder, communication impairment, and social interaction challenges?? Nothing. I basically knew nothing. I was ignorant to my own son's learning needs and it was anything but bliss. It takes a lot of guts to admit that, by the way. We all want to think we know how to raise our children, that our gut will lead us in the right direction, but sometimes our gut should stick to things like digesting pizza, and being the best parent means putting our ego's aside to listen and read and seek and watch and learn from our own and other people's mistakes and be moldable.
Despite my inadequacies, the two things I knew I was still good at was loving Dillon unconditionally, and utilizing my resources to seek help. This is how our new chapter in life began.

Monday, February 5, 2018

Like a Mole Removal: Mabel’s Arrival

After extensive talks with my OB and a honest talk with myself, it was decided Mabel’s birth would be a scheduled c-section at 39 weeks gestation. It was a strange feeling coming to the realization that I would never know what it feels like for my water to break, or to “give birth” the route babies were originally made to exit, but I was looking forward to the promise that this experience would be much smoother than last time. However, I was also skeptical, a side-effect from working for years in the NICU and knowing too much about all the things that can and do go wrong. I worried many times during my early pregnancy about true knots and nuchal cords, as I felt Mabel doing way more flips and turns than Dillon ever thought about. She flipped so much and so fast that sometimes I got that cool feeling in my stomach that you get when going down hill on a rollercoaster. I prayed hard every day for an uneventful delivery and healthy baby.
The night before meeting our baby girl, I squeezed my eyes closed and tried to get a good night’s rest. Yeah right. Not only was it like trying to sleep the night before Christmas when you’re 8 years old and can’t think of anything other than sneaking a peak of Santa and the presents he brought you, Dillon also must have had a 6th sense his world was about to change, because he was up crying almost half of the night (a far deviation from his normal). Oh well, right? It was merely one more night of crappy 3rd trimester sleep before morphing back into the newborn routine, anyway.....and it was Dillon's last few moments of being THE baby, a concept that was barely even comprehendible for Patrick and I.
Leaving to have my "mole removed"
The morning of November 15, we rolled out of bed (well.....I hoisted out of bed) to get ready, cuddled with the boy, and left for the hospital to check-in for my majorly exciting abdominal surgery. They took me back to a small room in triage where I changed into a styling hospital gown attire and they started an IV. Patrick kissed my belly and felt Mabel move around from outside in for the very last time. "Can you believe our daughter is in there?" he said, as he had said many times before. To which I melted and eventually replied, “Wow. This is just really weird. Nothing about my body is telling me I’m ready for labor. I am completely comfortable, and yet we know for a fact that we are about to meet our baby girl in just a few minutes. It’s all so routine and nonchalant, almost like I’m just going to an appointment for a mole removal or something.”
Getting an epidural is much easier when you aren’t in severe pain and having constant contractions! I laid down and let the medicine kick in, Patrick assumed his role by my head, and the drapes went up for skin prep! Things were finally starting to feel real. We would hold our baby girl for the very first time any minute and I was completely coherent to remember all the details this time. I loved my Nurse Anesthetist; she was so responsive, quick, and most importantly funny.
Speaking of funny, Dr. B came in with his vibrant self and as he was cutting my belly open, he was already asking me when I’m going to have baby #3! What a nut. “Chill out, Dr. B.” I said, “I haven’t even near forgotten the last 39 weeks yet.”

Moments later, a quarter past noon, our beautiful baby girl was filling the room with the sweetest sound, a new voice the world has never heard before (weight: 7lbs 5oz, length: 19.75 in). Her nurse Patty, put her skin to skin on my chest and that little chunk reached directly into my heart and stretched it even bigger than I could imagine, as she pooped all over the place with her not-even-diapered-yet-self. Sweet, I know. But I didn’t care in the slightest. We were completely overwhelmed with instantaneous love, the kind of love that can’t be bothered by silly distractions like meconium. And if Mabel was a routine mole removal, she was the most precious wrinkled mole covered in hair (no, seriously, this girl still had lanugo on her backside and on the tops of her was so cute) and vernix (she was SUPER cheesy) I had ever laid eyes on.
And just like that, we were a family of four.......and niether kid knew it yet (insert devious laugh)!

Tuesday, January 30, 2018

Tiny's Transformation

I don’t want this to sound like a whine-fest but the struggle was real. If one could enjoy a struggle, I really did enjoy mine and I was thankful for every minute, but struggle I did.
To this day, I’m still not sure if I’ll ever be able to even look at scallions or riced cauliflower again. I turn the channel if they are featured on a cooking show. I could SWEAR the smell of that single meal was embedded in our hallway carpet; I would hold my breath every morning when I walked out of the bedroom. My mom even came to clean the carpet and our entire house and I still felt like I was trapped in an odorous prison. I was only 5 weeks pregnant with Tiny, and sicker than sick. For at least the next 15 weeks, I barely survived 3 stomach virus’, constant morning sickness, and intense acid reflux. I did my best to put on a brave face, but a few days were so bad, I almost had to go to the hospital because I wasn’t sure if I was even peeing any more. Let me repeat that. I’m a nurse, and I wasn’t able to distinguish a vitally basic bodily function. Imagine calling the on-call OB to tell him that. I felt mentally weak a bit idiotic, and mostly embarrassed.
I could barely keep my eyes open, I was so tired and beat down. I barely talked to anyone at work; it was all I could do to go through the motions. I let Dillon watch a ton of videos on my phone so he would sit in my lap and chill while I dozed off for who knows how long at a time, just to get through the day…..winning Mom of the year on this one, I know. Somehow living off applesauce and refried beans, I didn't cook, EVER. I was a hot mess, and Patrick was scared of me most of the time, but my skin was glowing, and it gave me this gut feeling that a girl was brewing.
Of course, we would have been thrilled no matter what, we already were. But if this was a girl, I REALLY wanted to know. I wanted to have bows and flowers and tutus, and all things pretty in her room, so I needed to rationalize. Yes, the gender surprise was amazing the first go around and I wouldn’t trade that experience, but this baby would be born in the winter and that would mean she shouldn’t be out and about like a summer baby, I said. Anyway, I wouldn’t have as much time to go out and get things after her birth because I would have TWO kids to tote around this time and be post c-section, I said. I NEED to know this baby’s gender, it just makes the most sense, I said. Patrick was finally convinced and on week 20 we got to change the title of my belly pics from "Tiny" to "Mabel Jane" and dress her in her very first bow, a digital pink lace one. We were elated! Patrick finally admitted that he was hoping we were having a girl, but felt too guilty to say it out loud. I say there’s nothing guilty about hope.
From this point on, my pregnancy would get much easier, minus the moderately painful suprapubic pressure Miss Mabel seemed to never let up on (a belly band helped, but who wants to wear an extra layer during the hottest part of the year?!?!), and enduring the excruciating heat of summer outside with Dillon, who seemed to never notice we were actively melting. We walked many, many miles of sidewalks. He was obsessed with pushing his ridable firetruck down the block and famous for not wanting to walk or ride back home, so I would end up carrying his 40lb-kicking-and-screaming-self back on one side of my body while holding the firetruck on the other, fetus Mabel cluelessly bouncing around in the middle. Around week 36 or so, I had Patrick hide the firetruck. I just couldn’t do it anymore.

Tidbits I remember about having Mabel in my belly:

1.     Dillon loved to use my belly as an arm rest and would curl up around it at night as I rocked him before bed.
2.     Mabel danced the most during girl talk and when we sang.
3.     Even though my Mabel belly didn’t look any bigger than my Dillon belly, it was shaped different and felt gigantic!
4.     Mabel liked to get aggressive at night as soon as I would lay down to go to sleep; sometimes she kicked or punched me so hard and sharp I would yelp out loud!
5.     I loved guilting Patrick into slathering the belly butter on my belly and back every night.
6.   I had obvious diastasis recti by about 16 weeks (and I'm still working on putting all that back together!).  

My Mabel Belly, Natalia (post Ale's belly), and Cristina's Lucas Belly
7. Mabel almost always laid the same way, pushing her butt out to the left side of my belly, making it lopsided. It felt sooooooo bizarre and awkward when she switched it up on occasion; you could watch the obvious lump slowly shift over to the right. I think she thought it felt as strange as I did, because she never stayed that way for long.

Despite the challenges, I loved being pregnant, and feel very fortunate to have had the opportunity. Every kick. Every nudge. Every hiccup.......those are the things I'll miss the most. It's such a special feeling, growing a new person and having that tiny person with you every second of the day and knowing they are so cozy and happy and have all of their needs met, yet have the building anticipation of meeting them all the while, brewing such a feeling a excitement. It's truly a life changing experience. 

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