This month, I try to blog about Autism. I have for the past few years. The truth is, Autism is grueling this month. One could argue it is stressful every month, but this month has been exhausting.
So How Am I Doing? Not well. Do I want you to feel badly for me? Not. At. All. PLEASE.
If it is hard for me, I can only imagine what it feels like to be Camryn. I look at her in this picture and long for those days. In retrospect, it was so much easier.
On February 27, Camryn’s period arrived. We decided years ago to stop it with medication until she would be able to care for herself. This whole experience has been a nightmare. We give her medication at the same exact time every night and she continues to get it. We know it is her body adjusting to the medication, but it is taxing.
For the past two nights, I cry. When I really cry, through ugly tears, I tell Dave that I am HUP, Bryn Mawr Rehab, Pennsylvania Hospital crying. He gets that metaphor and despite how dark those days were, for some reason we both smile. During those long days and nights, I would cry so much. I swear every wrinkle on my face is from four months of crying. I told him tonight, “I need Botox.” He responded, “Your face tells a beautiful story.” That “not a compliment” compliment made me laugh at least.
I just can’t get it together right now. I cry because we make excuses for why Camryn is acting the way she is and the truth is she is acting this way because she has Autism. I cry because I get told in public that I am a good mom. People don’t usually say that to moms of “typical” kids. Yes, it is so kind, but it is also heartbreaking. My 13 year old acted like a two year old. This resulted in me being patient because she has special needs. I don’t deserve praise for that with a side of pity at Five Below.
Dave said to me tonight, “Kristi, you have tried and done everything you can for her.” That’s it? There is nothing else? There is no new therapy? A cure, maybe? Soon?
As she gets older, the excuses about her ears, her runny nose, being tired, being hungry, walking a lot that day are not reality. Reality is that Autism is unfair, unreasonable and unwarranted. Oh and unwanted.
I am grieving again. I already did this. Dave has too. We have taken turns over the past 13 years grieving. Sometimes we grieve together; all the time we understand how the other is feeling.
We have seasons where we don’t contemplate the gravity of Autism. Life has a way of making you move on. We are truly grateful for every obstacle we have conquered and we savor every joy. We laugh and love so much.
But, we are filter free and despite living a life that we know God has designed perfectly for us, I am silently screaming that I want to throw in the towel. I won’t. I will never give up on anything. I am stronger than a diagnosis. Tomorrow, I will thank God for a new day and fight my battle with Him by my side. Dave and my three mini advocates, Brynlee, Aubrey and Courtney will be fighting with me. Camryn is worth fighting for. Our family will not let a stupid diagnosis win.