Dear Addie,
There are plenty of things that are unsaid from those before us on this journey - the things they don’t tell you and you find yourself stumbling upon situations and feelings only thinking "hey, a heads up would've been nice!" It's only from the last couple of weeks that we've realized why. While this is the path that we have been given, we as parents will have to juggle other things too. Not too wildly uncommon from average parents really. Sometimes that stuff is going to make you feel like a superhuman the way you have accomplished such chaos and sometimes, well, it’s going to be heavy and it’s going to make you feel divided or not enough for anything or anyone. Just because autism happens to be our journey doesn’t mean others in this family get a free pass on challenges. My fellow autism mama friend Renee said it best just days before her very own challenge of surgery - we are always trying to keep everyone from falling off the sea-saw, aren't we? That is the truth.
These days my schedule is a healthy mix of zooming through virtual special education 4th-grade, making meals, cleaning up meals, telehealth Dr. visits, driving to therapy, making more meals, researching new autism products to make something in our lives easier, oh yeah I’m 40 - time for a mammogram (does that count as me time?), picking up medication, groceries, oops forgot the dog food back again, oh dear the dog's meds off to the vet, hand over hand teaching of life skills for you like showering, brushing teeth, writing, or POTTY TRAINING, rinse and repeat. Every day the same but yet wildly different.
Daddy and I are officially convinced that between autism, dogs, kids, work, anxiety - a solid 8-12 hours of sleep is Tomfoolery and life is really just done on a series of cat naps. …and go!
Well, the last month or so we were reminded of that sea-saw. You see Addie, your brother Gabe has been going through some of his own unexpectedly health challenges. While I’m happy to finally report that he is on the mend and
everything is now great, it did a number on the mental health of just about all of us. Being handed some heavy initial test results for that of a 12yr old, resulting in 2nd, 3rd, and 4th opinions, a lot of waiting for answers, surgery, more test, more waiting, prayers, more opinions, to final resolution. Phew.
One would think on a journey that comes with some significant delays, we’d be experts at waiting right?! I think it’s safe to say - not so much.
It’s in our nature as humans to want to rush to get the quickest results in whatever we are waiting for. Let's take losing weight for example, I haven’t eaten in 6 hours why don’t these jeans fit yet?
It just doesn't work that way baby girl.
Addie waiting often naturally stirs up worry. What did I do wrong? Why is this taking so long? What will the future hold? Our minds tend to gravitate toward thinking the worst. I hate to even admit it but on this journey we are constantly being compared and it never seems to be in our favor. Insert a whole lot of self doubt and worry way too often. But what if the wait was a lesson, or a reminder of life not necessarily being in our control? A reminder that we really need to live in the moment and I'm sorry but we are all gonna fall off the damn sea-saw at one point in time. BUT together, as a family, One Team One Dream we will pick each other up no matter how utterly exhausted we are we will get back on. Sometimes this journey can feel like a blur of going through the motions and other days well it can leave me going what the...
The last couple of weeks we were reminded that no one can possibly tell you how to manage unexpected non-autism challenges with grace on this journey. That my dear is why it goes left unsaid. They can't tell you how to navigate an extremely structured day to day (or hour to hour rather) and then get thrown a curve ball and oh striking out isn't really an option. We laughed, we cried, we prayed, we didn’t sleep, and we were reminded of our blessings.
There really is no rule book to life Addie, autism or not, and that's probably a good thing.
We are truly blessed and we are so thankful that everyone is healthy and we all have each other.
Love,
Mom
"Brother - a person who is there when you need him; someone who picks you up when you fall; a person who sticks up for you when no one else will; a brother is always a friend." ~anonymous
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