Playlist for this blog post:
Here Comes the Sun – The Beatles
Your Words – Third Day
Oh Holy Night -Pentatonix
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” – Albert Einstein
I haven’t written a blog post in a long while. We have had our hands full with moving back across the country from WA to IN, dealing with the 3-hour time difference coinciding with the 2-year old sleep regression, setbacks in Fox’s sleeping and eating, getting the Fox back into school at Goddard, getting First Steps setup in IN, interviewing and touring ABA facilities, and just getting back on our feet and getting our home together and feeling like a home – on top of working full time, and being a full time Wife and Mother. In all that we have been facing lately, I have not felt inspired to write. It is difficult to put yourself out there with such raw honesty and emotion, and then face potential criticisms or judgments from others, but at the end of the day, if our story has helped just one family, it will have been worth it. I’ll be bluntly honest here: Life has been panic inducing, dark, and depressing moreso for me than anyone lately. I take everything on personally and every little set back felt like my own personal failure as a Mother, as a Friend, as a Daughter, a Sister, and a Wife. I am your typical Type A personality, perfectionist, and deal with my own obsessive compulsive disorder along with that. It doesn’t make major life changes easy. I knew that going in, but I did not expect how difficult it would be or feel. Basically, I had to go through everything I already went through in WA after getting the Fox’s diagnosis, all over again in IN, wherein I have found a lot less support or eagerness when it comes to early intervention and getting my son the help he needs to be the best Fox he can be. I dealt with Postpartum PTSD after the Fox’s birth, and I truly believe I have been living with another version of PTSD ever since getting Fox’s diagnosis of autism, medical code 299.00, on March 22nd, 2017 (I will never forget those numbers). I have learned a lot along the way that I hope to pass on to anyone else going through an autism diagnosis for their child or even just second guessing something they might be going through with their child, so if you have any questions, please do not hesitate to reach out and talk to me about it.
It wasn’t until this morning looking back at this time last year and realizing just one year ago, the Fox began walking on Christmas Eve, that I felt a resurgence of hope and what can only be described as peace. The Fox learning to walk is one of my favorite memories, as he was motivated to walk towards Jimmy Fallon and The Roots opening Jimmy Fallon’s show with music that Christmas (And if you watch Jimmy Fallon, it was the last day of his 12 Days of Christmas Sweaters, which Fox particularly likes). He was 14.5 months old at the time – and we had just reached out to get our developmental evaluation setup through the First Steps program in WA. I had a “life flashing before your eyes” moment remembering EVERYTHING that we had overcome, accomplished, and learned in that one year. And I mean the collective we of our family – Desmond’s own personal accomplishments along with everything Adam and I have learned as parents, and as parents of a child with autism. I think back to this time last year when I thought the Fox would never eat solids. Guess what, he is extremely restrictive, but he has a list of over 20 preferred foods he eats now. Granted, they are all carbohydrates, Greek Yogurt, and Strawberries (no meat, no vegetables, and no other fruits), but it is a vast improvement when you look at where were were this time last year. Back then he was barely making eye contact. He was not responding to his name. He was not engaging in any kind of joint play nor was he interested in what anyone around him was doing. He would not let us read books to him. He would not point. He would not wave. He would not snuggle. He would not clap. He would not communicate in any way other than to cry. In these areas, and many others, he has grown by leaps and bounds. He is doing all of these things now and learning many others! Thinking about every single milestone in this way, each tear cried – in joy and in pain, each new food added, each smile, and each laugh, and realizing how miraculous each truly is, really opened my eyes this morning. You don’t really think about how difficult the very act of eating is, or communicating, until you have to break it down piece by piece. (Sidenote: Get it together Indiana – and all other restrictive states. This is what early intervention is all about and how extremely important it is to our youngest population, their families, and our communities overall).
Fox’s teachers took a video of him this week wherein he was hitting the wall with the palm of his hand, making a loud sound, and finding it hilarious! Soon, you see in the video that his entire class has lined up on the floor to watch Fox man do this, and join in his laughter. It was amazing to see him leading his class in this activity and creating such joy that envelops the entire room. The exact note from his teachers said: “Today Desi made all of his teachers and friends laugh! He loved the sound made when he hit the wall and he was laughing so much. Naturally, his friends and teachers joined in. The ladies in the office heard his laugh and ran to watch him as well. We were all filled with so much joy just listening to and watching Desi have so much fun! We absolutely love him!”
This morning I am realizing and somewhat remembering through my own fog of PTSD, how miraculous life is and how miraculous it is that we human beings exist and grow into adulthood at all. Grateful for this life and all the lessons that our Fox is teaching us, and the world at large each and every day. That is my Christmas miracle this year.
“A thrill of hope, the weary soul rejoices, for yonder breaks, a new and glorious morn!”