Butterflies, Rainbows, Unicorns, and Grief

When Josie was first diagnosed with ASD (Autism Spectrum Disorder) I experienced a myriad of emotions that can really only be described as grief. Until I experienced it myself, I naively assumed that grief only reared its ugly head in cases of death. And while I write with reverence for those who have experienced grief as a result of death, I also want to share my ongoing experience with grief as a result of diagnosis.

For a long time I was hesitant to even refer to it as a grieving process out of fear that calling it such was saying I felt as though Josie and her challenges were a burden, or something that made me overwhelmingly sad. In the 2+ years I've had to reflect on it, I've come to realize that I wasn't grieving Josie, or even autism. I was grieving my preconceived expectations for Josie and her life, and fearing the unknown.

As a parent all we really want for our kids is what we perceive as the best.  We want to shield them from hardship, pain, and injustice and give them all of the things that bring happiness. It generally entails friends, some form of education, marriage, children, contentment at work, and so on. As you are pregnant you daydream about this little ones life, and all the joy there will be in all of those activities. The smiles while they reach their first milestones, the preschool pictures, the sporting events, birthday parties, graduations, weddings. As you day dream, you gather all of these pretty little thoughts and expectations into a butterfly net, then package them up with glitter, and unicorns, and rainbows, into a perfect little treasure chest and wrap it in watercolored craft paper and tie it closed as tightly as you can with gold flecked bakers twine, or satin ribbon, or washi tape, or whatever ridiculous magically perfect, unrealistic package you dream up. And you hold onto it. And amidst the crying baby blues, you cling to it. It gives you hope. And comfort. And the idea that someday this will all end too soon with a huge happy fairytale ending. And that gets you through the day. And what an autism diagnosis does is snatch that special package from you, rips it open, lets all of your magic butterfly dreams float away and replaces it with a giant question mark. It leaves you with a knot in your stomach and so many unanswered questions and no real vision for the future. And you are left to marinate in this big question mark thats left behind, and wonder what happens now? 

When Jos was first diagnosed (and in the denial stage of grief) we were of the mindset, we are going to hit this, and hit it hard with every type of therapy we can, and if we put in enough work, and make her put in the work, one day it will be like she never even had autism at all. You can't see me, but right now I'm rolling my eyes so hard that they might actually fall out of my head. Our pediatrician did us a huge disservice by telling us that maybe one day we could just drop the whole diagnosis all together. So this was our dream. That one day she wouldn't even have autism. Again my eyes are rolling, and this is why. AUTISM IS A NEURODEVELOPMENTAL DISORDER. Meaning when our kids brains develop, they aren't developing the same as neurotypical kids. The pathways that are forming in neurotypical kids brains to preform a certain task, or process certain information are different in autism. This study from Columbia University (I don't know how I feel about the medication portion of this, so don't quote me on that part) finds that there are actually more synapses in the brain of a child with autism, and their brains don't prune the synapses properly. So our kids are going to really need that extra help when typical brain development occurs at ages 0-3 (which is why most kids aren't diagnosed until after 3, we don't notice the signs because everyone is still developing)  around 13, and again in early adulthood, which lasts until around 25, and takes longer for boys than girls. So, long story short, autism doesn't just go away. Our kids learn skills to help them cope, which makes them more successful in the general view of the public, but a child with autism will always have autism. But we wanted so desperately for Josie to live a "normal life". Until one day I was blessed with a paradigm shift. 

As I watched Josie play one day, I filled with tears. I thought, for the ten thousandth time, why does this diagnosis bring me so much anxiety? And it came to my mind, "men are that they might have joy". I began to sob as I realized I just wanted her to be happy. I wanted her to feel joy, and contentment, and pride. I wanted her to go to college, have friends, get married, and have children and I had no idea if she would ever experience those things. And then I realized, those are the things that have brought me joy, and Josie's recipe for joy might be totally different. The things that bring me joy, often times actually brought her anxiety, and I was trying to force her into this box that I thought if I can just push hard enough she'll fit and she'll be happy too. But she wasn't. 

As she looked up at me with a coy side smile, I heard the words, "and that every form of life may fill the measure of it's creation, and have joy therein", and I lost it with happy tears, realizing my view is so limited.  I know that Josephine was created by a loving Heavenly Father, who knows her, and cares deeply for her. That she was created with a purpose. That autism wasn't just an accident or a scientific fluke, or a tragic result of some chemical spill.  She was created, purposefully, and sent to me, with love. Those tears streamed down my face as I took a step back, and recognized, Josie is happy. So happy. Sometimes more happy that I think I can even comprehend, just with things that don't fully make sense to me. I know that Josie will find joy in filling the measure of her creation, even if it isn't how I envisioned it, and that in itself, brings me enough joy for a lifetime.