Dear Addie,
I still remember the first time I took you to the doctor after your diagnosis. It was only for a 3 year old well check, but I remember it like it was yesterday. Doc says, “So, how’s Addie doing?” My reply was somewhere along the lines of “Overall well, but very sensory seeking and still not sleeping.” Then he asked, “How are you doing mom?” I remember being taken back a bit, nobody had ever asked me that before. Did I look exhausted, was my eye noticeably twitching from the lack of sleep? Did I look frustrated? Was my shirt on backward??? Why was he asking about me?!
Pretty sure I answered him with “I’m fine” because I couldn’t think of any other answer at the moment. I think there's often a perception that special needs parents are a rare breed of tireless superhero! Not to seem weak or tired, my "fine" response was all I could give. I was happy he had asked, but then felt like I stumbled upon a new chapter in which, now suddenly there was a milestone chart for the parents of special needs children’s and our levels of stress. Insert mommy overthinking everything.
Fast forward 4 years. I’ve officially lost count of the number of doctor visits, and almost all have asked “How are you doing mom?” Now I know why. This is stressful. You have to keep yourself in check or you're not much help to anyone.
You see Addie, the job of raising mini humans is tough stuff. There’s a ton that goes into it, from scheduling of activities (not for just one but for Clara & Gabe as well), feeding, clothing, grooming, doctors appointments, socialization, homework, managing my time and energy equally (or close to it) for each child, and so on and so forth. I could go on and on with no end in sight. Parents have one of the hardest jobs on the planet, but parents with special needs kiddos find themselves parenting on a whole different level of detail. Often it can feel like a never-ending game of Wheel of Fortune trying to figure out your wants and needs. I’d like to buy a vowel Ad, then maybe I can solve the puzzle. Insert my new job title in addition to Mom - CEO of Structured Chaos.
I hear all the time “Don’t forget to take care of you”. I know that my overall health and well-being is important, and I can honestly tell you it’s not for lack of trying, but it would just be more helpful if there were about 35 hours in a day. As parents, we literally pour everything we have into our children. Next to the love of our spouse, they become our priority and rightfully so! For example, I’ve researched the best doctors, schools, and therapist in our area for you. Yet I’m content just googling my symptoms and visiting an urgent care when necessary for myself. Heck, even the dog gets her nails done more than me (full disclosure – I usually bite mine anyway)!
With our family having more needs than most, it can all be mentally, physically, and let us not forget emotionally exhausting. With doctors, teachers, therapists, even friends having your best interest at heart, the battle of opposing suggestions can leave a heavy weight to carry. Am I making the right choices? Am I being judged on my decisions? The guilt is heavy sometimes. It’s a life of staying 5 steps ahead of going somewhere, just not sure where - and your GPS is constantly recalculating.
We all need a break. That’s a Fact. Even at school you have a scheduled recess break (or at least most schools still do, some are doing away with it – don’t get me started on that). You can take in some oxygen while freely playing with little to no instruction. All this helps keep stress levels down. You see Addie, our bodies are made to handle stress in small doses. When you allow yourself to let stress continuously build up it can turn into an even bigger issue know as chronic stress. This additional chronic stress can start corrupting something known as your Allostatic Load – that’s a fancy word for the wear and tear of your body. You may start to notice negative changes in your body like chronic headaches, stomach issues, high blood pressure – all not great stuff…time to take a break Ad!
With no time ever being the right time, my fellow autism journey traveler friend Katie (your friend Dylan’s mommy) and I saw that PINK was coming to Indiana over St. Patrick’s Day weekend! With Katie and Dylan’s (…and sweet baby Maggie’s) journey unexpectedly taking them back to Indy last June, we decided this was just the break we needed, and I would venture north. Look our Indiana, here I come!
Now I know what you’re thinking…Indiana? Really Mom? Hardly sounds like a relaxing break away to get some “me time”. But the fact of the matter is, breaks don’t need to be beach cabanas and pina coladas – although I’m game for those future plans ;). No, they just need to be a break from the day to day schedule. Like your recess, a little breathing room from the structure of your classroom.
4 months flew by and it was time for my break! I got everyone off to school and headed to the airport. In the true craziness of our OTOD lifestyle, daddy’s flight had just arrived as I was checking in. Insert impromptu coffee date at the airport terminal! Romance! We had coffee, shared a laugh over the name on my cup (Lynn- close enough right?!) and caught up really quick about daddy’s first week at work with his new job. I know what you’re thinking, such spontaneity daddy and I have!
Coffee date over, we said goodbye and reversed our roles as I made my way through security. Let your fun daddy time and sitting patiently through 3 hours of soccer games weekend begin!
I arrived in no time at all! Not having been to Indy in quite some time, it was every bit as wonderful as I had remembered. I was immediately flooded with memories of our baby Clara days. So much was different, but still felt the same. Katie and I jumped back into conversation like it had been days, not 9 months since we’d seen each other last. We drove by our old house, the courthouse where mommy and daddy were married (on the recess of a murder trial – disclosure: not ours), and even the restaurant we had our first meal as husband and wife. Ah, so many good memories! I could already feel my emotional cup spilling out stress and filling up on happiness!
This journey north came with not only these amazing memories but also a unique opportunity to live in someone else’s autism journey for a few days. You know what Addie, for as much as you like swinging, your friend Dylan likes jumping on his trampoline! So many differences but just as many similarities. Such an amazingly wonderful family.
Once the kiddos were off to daycare and therapy for the day, Katie and I spent our day off enjoying some mommy time. First up, there was no better way for two special needs parents to start our morning than at the grand opening of “No Label At the table” a gluten free/dairy free bakery. Their mission is to give employment opportunities to people with Autism. The vision of a fellow Autism mama, becoming a reality. A beautiful place of love, determination and hope.
We went on to enjoyed hibachi-style lunch, a little shopping here and there and even an afternoon massage! Ah, just what we needed, but the icing on the cake was still yet to come!
St. Patrick’s Day had finally arrived, and it was the day we had been looking forward too for 4 long months! We woke thinking less of green, but more of PINK! See what I did there Ad - your mom is cheesy?! It was concert day and we were headed downtown!
You had to be living under a rock not to realize it was St. Patty's Day, just about everyone and their brother was Irish today. Not gonna lie, I felt like a mom. All the green hair paint everyone had - I can only imagine what their bathroom looks like after that! Who's going to clean all that?! The short skirts, tank tops, and kilts even - aren’t you cold?! Or is 40 degrees a heatwave around here? Hmmm. After dinner and some drinks, we headed to the show.
Addie, she didn’t disappoint! PINK was everything I had imagined and more! What a beautiful way to end my break watching a mother, a daughter, a woman stand on stage commanding an audience of thousands with her lyrics written from her soul. An image of such beauty in her strength and vulnerability. It gave me goose bumps (the good kind) to watch.
She ended her show with a song that I believe spoke to questioning the depths of our feelings called “glitter in the air”.
I remember hearing these lyrics for the first time awhile back “Have you ever thrown fist fulls of glitter in the air?” and thinking – yikes what a mess! Most moms have a disdain for glitter because once you got it, you can’t get rid of it! But all joking aside it’s more of a metaphor for not being so cautious in life, taking chances, living without fear, really enjoying moments. Maybe there was more beauty to glitter than we realize, because we only see the negative? Sometimes I think we could all use a thought-provoking precious reminder to just live.
I found myself thinking as we left, I hope one day that you will find music that truly speaks to you like this. When you hear a song and it stirs emotions in you from laughing, crying, or just wanting to sing at the top of lungs because you can relate somehow. It’s truly an amazing feeling.
With my break drawing to an end, my emotional, physical and mental energy had been recharged! It was time to head back south to my family. I made it home in time to see your naked hiney running down the hallway fresh from a tubby. I missed you so much but was very thankful for this opportunity to reenergize myself.
My dear friend Krista said to me recently “When you get a little bit of you back, you have more to give when you get back.” Very true, very true indeed. Mommy has wise friends Addie ;)
I was home, ready to give and get back at it! And by the looks of the apples in the drawer, apparently get to the store too.
I love you baby girl.
Love,
mom
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