As a person who finds comfort in maintaining control, there is something so unsettling about the many moments in our life that feel out of control. I look at so many things in our path as moving targets. Control. Positive thinking. Survival. These things are defined differently based on the context of the moment. One day control may mean having a consistent schedule. Another day it may mean minimizing and mitigating tantrums without any serious emotional casualties. A lot of days I define survival as coming out on the other side of the day. Bruised, but not broken. And some days are easier to survive than others. Some days we pat ourselves on the back as we turn in for the night; recounting tales of goals met and obstacles overcome. There are so many days that we survive with ease. But there also days that are anything but easy.  Days like today.

Now, I’ve promised myself that I will keep my humor through all of this. Even as we navigate things that are not funny. Because without being able to make a joke at the expense of our crazy life and without the ability to laugh off things that make me want to cry…I am just not sure how we would make it through.

Today most definitely did not start like a typical day in the Sylfest house. No sir. Today started at 1:22am to the sound of smoke alarms wailing throughout our house. If you have never woken from a dead sleep to the sound of smoke alarms; then let me just confirm any suspicions you may have…it flipping sucks James and I quickly snapped out of our sleepy daze and went immediately into parenting mode. We could hear the sounds of the storm outside. And, while it seemed likely that the alarms were storm related, our first concern was to making sure our kids were safe. As James explored the house for any sign of something that may have triggered the alarms, I ran down the hall to Grayson’s room. I opened Gray’s door to find him in a ball on his bed, rocking, with both hands covering his ears. Grayson is not really a fan of loud noises. He likes to be in control of sounds and volume. And he was adamant about one thing, he wanted the loud sound to stop immediately. And so did mommy! I went down to Rowan’s room to find him terrified and feeling “trapped” in his crib. I quickly swooped him up and went back to Gray’s room. By that time James had confirmed that there was no fire. He began working on the many MANY smoke detectors that were wailing throughout our house. Nothing seemed to turn the sound off. I looked at the faces of my terrified little men and I had no idea how to make this thing that was scaring them stop. So, I grabbed a bathroom towel and duct tape and headed back to Gray’s room to cover the noise. Sure, there were still a dozen other units beeping throughout the house, but my only thought was to create a quiet space for them. And, I hoped that given the new found silence I may be able to hear myself think long enough to come up with a better solution. As I spread the towel across the smoke detector the wailing sound that had been permeating our house for the past 25 minutes came to stop. Thank you Jesus.

I met James in the hallway and he gave me that “you do not want to know” look. So we kissed Rowan and put him back into his bed. He curled over in an instant and it was as if nothing ever happened. We returned to the hallway to find Grayson 100% not ready to go back to bed. He was scared, wired and now in complete control at 2am. As the 3 of us headed off to our room to try and sleep the “chirping” began. Now, I used to think that smoke alarm chirping was the most annoying sound in the world. Having lived through the wailing sound I can safely say that I have been proven wrong. However, at 2am after surviving the wailing…this momma did not have any patience for that chirping. I asked James to tell me what he had discovered causing the noise.  His response was even more annoying than the chirping! Apparently upon removing the unit in our master bedroom water came gushing out. Yes, that’s right. I said water. Now I am not a plumber or an electrician, but I am pretty stinking certain that water has no place hanging out on top of a smoke detector. And as frustrated and expensive as this sounded; at 2:15am my only thought was to getting back to bed. So we devised a plan to unplug the batteries and reset the chirping. By 2:45am the entire smoke detector situation seemed to be under control. We climbed into bed with our very awake 4 year old.

I am not sure if I have ever spoken about sleep habits here. Sleep is one of the many very regimented parts of our life. We have tried to flexible, we have tried to adapt our schedule. We did all the right things when Grayson was a baby; taking him on trips and putting him to sleep in beds that were not his own. And he did great as a baby! And then around 16 months sleeping anywhere but his house in his bed was just a nightmare. To this day Grayson has never slept 1 minute in our bed with James or I. Flat our refuses. He will snuggle, he will play, he will watch a show…he will not sleep. So our hopes were incredibly low heading into the 3am hour. By 3:30am Grayson had demanded (believe me…this is absolutely the right word to use) milk. He was pleading for T.V. He was pulling out moves and one-liners that I did not even know he knew to tempt us out of our sleeping plan. Sometime around 4am I let out the world’s biggest sigh. I knew that the window of sleep potential was quickly closing. Daddy and I were on the same page because at that exact moment he whisked Grayson out of bed and they headed back to Gray’s room to get serious about sleeping. Now, understandably, Grayson was scared to go back in his room. So James laid with him and explained to him that his room was safe and the beeping was done. I crept out of bed to check on Rowan. As I laid back in bed just after 4am my mind was racing from the entire experience. James crept back in around 4:30am and we both clung on to every single minute of sleep possible before my alarm sounded just after 6am.

They do not make enough coffee in the world for days like today. Our night is the kind of thing that people tell us we will one day look back on at laugh about. Today, I am not laughing. Today I am tired and cranky. Today I just needed to coast through until an acceptable hour to start drinking wine. And then something else happened. Because, of course it did. I received a call this afternoon letting me know that someone very instrumental on our care team would be leaving. This person was the first person I met when we joined our program. She was responsible for helping us build our team. She sat beside me during IEP meetings. She listened patiently and without judgment each time I expressed our fears and frustrations. She has become a calming presence on our team. In our life. And now she is transitioning out. My instincts tell me to cry. To feel sad. My instincts tell me that this will change so many things for us and for Grayson. I wanted to beg her on the phone to stay. Not to leave us. But even sleep deprived I understood that this all a part of this journey we are on. Because this is our journey. Grayson and Rowan and James and I. People on our path will come and go. Grayson will move through technicians and therapists and teachers. We will love some, we will tolerate others. Every single person we have met to date has left an imprint on our journey. And that will be no different as we prepare to say our goodbyes this time. Grayson is resilient. Every single time his team changes over he handles it like a pro. I think I am the one who will take this the hardest. She is my cheerleader. She fights with us and for us. She gives me permission to be imperfect. I will remember all of the amazing things that she taught me. And I will carry them with me as we move forward. Because we will move forward. We will keep surviving our days; even the really crappy ones.

Survival. Sometimes it is as simple as making it to the end of the day. Sometimes it is remember that as difficult as the journey feels; we are so blessed in so many ways. Sometimes it is about making another cup of coffee. Putting on a fresh coat of lipstick. And smiling through the pain. Being bruised, but not broken. Survival. Sometimes it is as simple as smiling when you want to cry. Oh, and wine. Sometimes it is about drinking wine.

JS