There are a few things in our house that I have learned it is best to avoid during the hours that my children are awake. Sitting. I am not allowed to sit. If I do sit I become a magnet for naughtiness. “Quick, mom is sitting, let us pounce on her.” Attempting to have an adult conversation. Pointless. And by pointless I mean….IMPOSSIBLE. Using my phone. Because when you are a mom you do not get to have your phone. Because your children do not view your phone as your phone. It is a game; their game. And they will take it and do what they want with it. And, if I am being honest I think even my two-year-old is more knowledgeable on the functionality of Apple devices than I am. Fact. Yup, these are things we avoid. Why? Because it is just easier to avoid them than to deal with the consequences. So instead of sitting; we stand. We find ways to exist in the room with our children without being pounced on. And instead of having logical and thought provoking adult conversations; we argue with toddlers about things like juice and pillow forts. And instead of openly checking my phone for a voice mail (just kidding, I mean text message. No one leaves voice mails anymore); I hide my phone behind random things on top of shelves. And this generally leads to me losing my phone about 5-7 times a day. We do these things because we have become experts at the art of choosing our battles.

Unfortunately, there are some parts of our routine that we cannot avoid; even the ones that are really really unpleasant. And, I am sure that my fellow autism parents out there can relate to this one…haircuts. There is nothing more terrible in our house than haircuts. Grayson, like many children with autism, hates to get his haircut. It is difficult for us to pin point exactly what he hates the most. He hates the sound of the scissors and buzzer. He hates the sensation of hair on his neck as it falls. He hates the feeling of the brush or scissors or buzzer on his head. He hates sitting still while being touched.

Grayson did not always hate getting a haircut. When he was little he sat still(ish) and giggled during his haircuts. Around 15 months he was ready to graduate from simple trims at home to a full-blown hair cut at a salon. Unfortunately, around that same time we started to see a lot of Grayson’s symptoms. We took him to a salon for the haircut and it did not go well. He became very upset and restless. Eventually we left the salon and decided to try again another time. After 2 more unsuccessful visits we decided to stick to home haircuts for a while. During the next home haircut we were met with the same reaction. Eventually James and I were able to work together to keep Grayson safe from nicks and cuts while I not-so-masterfully cut his hair. It was a total chop job. But it was shorter and out of his face. And more importantly, it was over and would buy us a few months. It has continued like this over the past 2+ years. Some of the occasions are worse than others. Occasionally people will ask why we bother to cut his hair if he dislikes it so much. I think the simple answer is that he needs to learn about hygiene and routines and taking care of himself. And he needs to learn to be adaptable. We definitely let it grow longer than I would like it to be just to stretch out the time in between haircuts. We let it grow until it is in his face so much that it bothers him. And, at the end of the day, Grayson needs to learn that sometimes we have to do things we do not want to do. That is a part of life.

Last week James and Rowan headed out to get their haircuts. I hung back to spend time with Gray. The whole time they were gone we talked about haircuts. About how all people get haircuts. I told him that when daddy and Rowan returned home they would have shorter hair. I told him how proud I was of daddy and Rowan. When James and Rowan returned home Grayson said “you got your hair cut?” He was interested in talking about it and understanding where they had been. Then the topic shifted to Grayson’s hair. To how proud I am of Grayson and how I knew he would be proud of himself after his haircut. He immediately shot the idea down. Ran to the other room. Eventually he came back into the room. I did what I normally do, I set the materials on the table so that he can see them and soak it in. We always start with the brush. He trusts the brush. He pulls my hand so that he can confirm that I am only holding a brush. And then I slowly reach for the scissors. And this is usually where we lose him. And this time was no different. His body changed as soon as I was holding the scissors. Except this time there was something different. This time he was calm enough to listen to our logic. We explained to him that we could take breaks and that if he held still mommy could go faster. It was not a perfect textbook haircut. But it went a million times better than any previous haircuts. We took 3 breaks; each time counting down from 10 cuts to zero before breaking. And when it was done he was proud of himself. He wanted to look in the mirror. And he was very excited to earn his big sucker prize.

This experience, and many experiences lately, act as a reminder for us that sometimes we may be too close to things to see how much they are changing. We see Grayson every day. And a lot of the days are filled with challenging moments. When we see people we have not seen for a while we are always so appreciative of the positive feedback. Because at times we struggle to see the forward movement. Not because our expectations are too high, but because we are so wrapped up in the day-to-day. We are so close to it that sometimes it all looks the same to us. But when we take a step back and truly soak it in; the changes in our amazing spirited son are just too amazing to put to words.

We crossed our one year anniversary with the Mercy Options program on June 8th. What an amazing milestone! I can hardly even remember where we were a year ago because so much has changed. Back then Grayson was primarily communicating in loud shrill screams. He could not sit for more than 60 seconds at a time to do an activity. He was unable to communicate with his family and his peers. It was a very lonely time; for Grayson and for our family. This past year has been a huge commitment and we made a lot of sacrifices to make this commitment. But when we take a step back and look at how far we have come in a year; we know that every single sacrifice was completely worth it. It is not perfect. There are still days that bring us to tears. There are still moments that make us question all of our decisions. But today is better than yesterday. And tomorrow will be better than today. And sure, some of the days will feel like setbacks. But if we have learned anything over the past 18 months it is this….parenthood is a marathon and not a sprint.

JS

 

Sometimes things happen to our children that we cannot protect them from. And, as parents this is the most awful and helpless feeling. Our instincts are to make a protective force field around our families. To keep them close. Keep them safe. Keep them protected from things that we cannot control. In the wake of terrible tragedy in Orlando I have been thinking a lot about things we cannot control. Yes, I am talking about our lack of control over actions of others. Yes, I am talking about our inability to avoid unexpected tragedies. Yes, I am talking about the fear of living in a world filled with so much hate. But even more than all of those things, I am talking our inability as parents to protect our kids from the things that are a part of there every day lives. Who they are. How they live. Challenges they face. I believe that some things in our lives are choices. And, some things are not. And I believe whole heartedly that being gay is not a choice. Just as l believe that we do not choose to live with a child on the spectrum. You may be wondering how these two things are related. Let me tell you.

We are born to be who we are. We move through each day of our lives doing the best we can to understand and define ourselves in a world obsessed with definitions. Obsessed with categories. People need to understand our labels so that they understand how they can and cannot relate to us. So we define ourselves. We let ourselves be sorted into categories. I have said before that during my pregnancy I only pictured my children as happy, healthy and 100% “normal”. Because that is the life parents want for their children. Not because our hearts are not big enough to love any part of our child’s life. Any part of who they are. It is bigger than that. It is about how the categories, these “differences” that our children face, impact our ability to protect our children from the world. Truly accepting and embracing our children’s differences is difficult. Not because we do not want to. Not because we do not love every single different and wonderful thing about them. Because we are afraid for them. We are afraid that being different makes them a target. That being different makes their life harder. Not worse, just harder. We know that their lives will be filled with obstacles that we cannot protect them from. They will spend more time understanding who they are. Learning to love all of the parts of themselves. Learning to defend their differences. Learning to love their differences. Learning to walk the line between embracing and being defined by their difference. And while they deal with all of these internal obstacles; they will also have to face the world around them. They will find love and acceptance in the most surprising places. But they will also find hate and intolerance. They will come to understand that some people will not like them for no good reason. Perhaps because other people cannot relate to them. Perhaps because other people are ignorant about them. Perhaps because nobody taught them better. No, being a person who is gay and being a person who has autism are not the same thing. But being a parent to a child living with difference is the same.

When I first learned that my son was different I felt so many things. I felt confused. I felt sad. I felt fear. I feared the things I did not know. And I feared the things I did know that I could not control. I knew that my son’s life would be hard. Harder than I hoped it would be. I knew that in his life he would encounter ignorance. Challenge. Obstacles. I knew that he would need to learn to be strong. I knew that I would have to teach him to be strong. And so that is what we are doing. One day at a time. One challenge at a time. One obstacle at a time.

We were reminded this week that so many things are out of our control. We were reminded that we are fearful for good reason; there are things in this world to fear. And it would be easy to live in that fear. To let it take over our minds and bodies. To conceal our differences. To ask our children to be “less” of who they are so that the world would accept them more. But I refuse to do that. I refuse to live in that world. Instead, I hope that we can respond with an even deeper revealing of our differences. Let us create a better world. A safer world. A world where love is love and people are people and difference is difference. This week, and all weeks, we should choose to live our lives out loud and unapologetically in color.

JS

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

 

 

Today was “zoo day” for the Sylfest family. Well, I should clarify. Most days in our house are kind of zoo-like, but today we actually traveled to the zoo! From the moment we first said the “z-word” this morning both boys started to bounce off of the walls. So we raced around the house packing up all of the necessities. Sunscreen, sweatshirts, diapers, undies, spare undies, shorts, spare shorts, juice cups, snacks, more snacks, hats, sunglasses, stroller…you know just the necessities. We set a goal to leave the house by 9:15am and worked diligently to make that happen. We set just enough timers for Grayson so that he would pee in the potty the minute before we would load into the car. We tag-teamed getting the kids dressed and getting ourselves dressed. When all was said and done we loaded into the car and set off for the zoo at 9:21am. Not too shabby.

Any parent that sets out on an all-day adventure with a 4 year old and 2 year old expects that they will be returning home exhausted. And holy crap did we ever. Maybe it was the fact that we were out of practice just coming off of vacation. Maybe it was the fact that both kiddos insisted on walking all day; which meant a lot more chasing. Maybe it was all the time we spent talking up the zoo; planting so many ideas into their little heads about all of the amazing things they could do at the zoo. Maybe it was the fact that we are 32 and these days 32 just feels really really old. It was probably a little bit of all of these things. Oh, did I mention there were 4 adults and 2 kids? Cuz there were. The adults had the clear advantage, and yet as we walked out of the zoo gates 5 hours after starting our adventure all 4 adults were dragging their feet and the lunch-less (apparently there is not time to eat at the zoo; which is even more annoying because food is 3x as expensive), nap-less (cuz that would require sitting still and maybe even riding in the stroller we pushed around all day) toddlers were still running.

I have been a little slow out of the gate after getting back from our adult-only vacation. But something happened at the zoo today and it got me thinking about our life. About our family. About the things that run through my mind every time we venture out. We had an amazing day. By all accounts the kids were troopers. They walked their short little legs all over the zoo. They were polite (kind of) and waited their turns (sort of) and they listened (ish) when we asked them to stop or wait. They were overcome with a big grin of excitement every time we approached a new animal exhibit. They were truly joyful. And seeing them that way made our hearts so happy. But amongst all of these moments of happiness there are also moments of worry. We know that we cannot stay home and live our life inside of a bubble, so we venture out and we hope for the best. Sometimes Grayson hits for no reason. Sometimes loud noises scare him. Sometimes he lashes out on his brother when he is told “no”. And sometimes he finds himself in a situation that makes him nervous or scared and in that moment he does not have the language to communicate his need. All of these things happened today. But the last was (and always is) the toughest to watch as a parent.

The zoo has a fantastic play area. And in the “’big kids” part there are 2 series of jungle gyms. And to go to the very tip top you have to climb a small ladder through one narrow hole. It is only large enough for one kid at a time. And, once you get to the very top then the only way down is through one of 2 very tall winding covered slides. Now, Grayson does not do covered slides. I am not sure exactly why. But, he never has. He loves open slides. So upon making his way up to the very top of the 1^st side of the jungle gyms you could see his body overcome with the realization that his only options to come back down were through one of the scary covered slides or the ladder. For a moment he forgot about the choice and just enjoyed being up so high. He could see that the other kids were having fun. He stood next to them and jumped up and down in excitement as they made their way into the slides. He was laughing and smiling. And from the bottom I tried to verbally coax him to try the slide. But my words made him feel more uneasy and he grew frustrated. Eventually he determined that the only way down was back through the ladder. Unfortunately, there was a never ending stream of kids coming up. Grayson would dip his foot down towards the ladder and would quickly pull it back up as another kid popped out of the hole. He was growing more and more frustrated. So, I walked as close as I could get and made eye contact with a bigger kid. I told the kid that my son was up top and he was afraid and he needed help to come back down the ladder. And that nice little kid told the other kids to stop climbing and they let Grayson slowly work his way back down. Now, because Grayson is 4, you will never guess what he did next? He ran immediately over to the other side of the playground and went all the way up the ladder to the tippy top…again. This side was even higher, so he could not even hear my voice from up high. I realized that the kids at the bottom of the ladder were much higher too. So I spent the next few minutes feeling anxious about how to help Grayson when he was ready to come down. He was oblivious; up there in the tippy top jumping up and down as kids zoomed down the slides. He was having a blast. And then he was done and ready to come down. This time he was a bit, shall we say “bolder” in his approach. He started jabbing his fit forcefully down into the hole to clear the ladder. There was a man at the base of the ladder waiting to help his son. I saw the anger wash over his face, “who the hell is this little brat and why is he kicking these kids.” Crap. I politely yelled “man in the white shirt” (I know, clever). After a few more times the man looked over at me and I said “I am very sorry, my son does not know how to communicate that he needs to come down. Will you please help him down?” I do not know if it was the mother’s plea or the look of concern on my face, but the man’s expression immediately softened. He helped Grayson down. And when Grayson got to the bottom he said “thank you man.” I ran over to Grayson and quickly pointed out a completely different part of the part of the playground. Two times was enough for the momma.

As I walked away from the park I was happy that it was over. And I knew that in the grand scheme of the day it was a very minor incident. But it went to the core of our struggles. Our struggle for Grayson to find his voice. To communicate. To be understood. The last thing I want is to walk around everywhere we go playing the “A-Card”. That life is not the life for us. But sometimes without using the card people write Grayson off as rude or disobedient. Sometimes understanding that he has autism helps people to turn off their judgment and turn on their helpful understanding. And sometimes the helpful understanding can make such a big difference in the way our day plays out. Days like today help remind me of why I am doing this. Why I am writing our story. To give a voice to parents like James and I who are struggling to walk the line between needing support and not wanting special treatment. At the end of the day what we really want is to live in a world that is more tolerant of people. Not people with autism; all people. Today I needed help and I made a connection with a young boy and a grown man. Both of which I had never met before. Both of which had no reason to help me. But they did. And so I remind you that we do not always know the “full story”. Sometimes we only see a small piece of something that is really much bigger. And so in that small piece, remember that you can choose to judge or help. And, if you do not know how to help, just know by not judging you are already being incredibly helpful!

JS

It is 4:56am and I am awake. And, it is not because one of my kids woke up ungodly early or because my mind is racing with the long todo lists for the day. It is 4:56 and I am awake because my hubby and I are in route to MEXICO!!! We’ve been looking forward to this day and counting down to this day for a while. And now our bags are packed and we are on our way. And to be honest, I already miss my kids a little. Because that’s what being a mom is. The same little people that drive you to the edge of insanity day after day are also the people who can melt away all of stress with one adorable gesture or one simple “I love you”.

Last night was filled with a lot of last minute to dos. But the most important thing on the list was to steal a moment of 2 for some snuggles with my kiddos. I tucked Rowan in and he let me snuggle him in the rocking chair singing all of his favorite Disney songs. And then I put him in his bed and he said “bye bye momma”. Grayson, aka mr. Independent, did not want to snuggle. But it was so cool to have a conversation with him about going on a trip and hearing him ask us questions and understand what we were saying. It somehow feels easier to leave knowing that we were able to explain our absence to him.

I know that James and I will have a million moments over the next 5 days that we steal away a thought to our kiddos. But we also know that they are incredibly capable hands. So instead of worrying about missing my kids I am just going to sit here and enjoy all of the things that I will do traveling today that I SO cannot do with kiddos in tow…

20 Travel Experiences that are flipping impossible with kiddos….

1. Carry-on only 1 partially full bag.
2. Pee all by myself
3. Not give 2 shits where the bathrooms with changing tables are.
4. Not worry about how to occupy my time if our flight is delayed
4. Drink alcohol before 8am.
5. Drink alcohol in flight.
6. Buy gossip mags instead of milk and juice.
7. Walk leisurely onto the plane when my boarding group is called. Rather than trying to convince the airline worker that my child (although not under 2) does in fact require pre-boarding so that we can get settled.
8. I won’t flinch every time someone closes the overhead bin because I won’t be worried it will wake my sleeping child.
9. I’ll read a book. Like a real book.
10. I’ll be in control of my own iPad.
11. I will not collapse strollers or wrestle with car seats one million times.
12. I will not chase anyone.
13. I will people watch. Because I am not toddler watching. And I’m a Brost…so people watching is kind of my thing.
14. I will start and finish a conversation with my hubby without 1,000,000 interruption on
15. I will not worry about timing every aspect of the day exactly right.
16. I will likely doze of on the plane. And again in the shuttle to the resort.
17. I will look like a have my shit together…an illusion that is nearly impossible when surrounded by my shorties.
18. I will stroll. Leisurely.
19. I will not apologize 100 million times. For seat kicking, for screaming, for tantrums, for hitting, for anything. Guess what, today…I’m not sorry!
20. I will be sympathetic to others traveling with children. I will not judge them. I will not glare at them. I will help them. Because I have been on their shoes.

I will do a lot of thing over the next few days that I cannot do at home. I will remember that being a mom is just one part of my life. It is a part that I love dearly, but I am proud to be so many other things as well. I will get to spend some real quality time being a wife. Something that can be difficult to dedicate as much time to as I would like. I will drink a little more and sleep a little later. I will read books and soak up the sun. I will laugh with lifelong friends. I will recharge my proverbial batteries.

In honor of traveling with my bestie Joe, founder of re-fresh, re-energize, re-organize…I will do exactly that! Because of a lot of reasons, but mostly cuz it is really freaking good advice.

Re-fresh. Feed your soul and all of things that bring meaning to your life.

Re-energize. Rest, relax and recoup. Give yourself time to process things that challenge you and then move forward with a new sense of life. Of fight.

Re-organize. Take stock of the things that may be barriers and make a plan to do it better.

Adios reality…hola Mexico!!!

JS

Our Grayson alarm sounded promptly at 4:20am this morning. And this came on the heels of a text I sent my mom yesterday (literally…YESTERDAY) saying “we seem to be over the 2am and 4am wake-ups”. Touché Grayson, touché. James and I are going on a real vacation next week. And by “real vacation” I mean…our kids are not coming. We went on a “family trip” with our kids in March. And about 24 hours into that trip I emailed our travel agent. Now, mind you, that 24 hours included an 8 hour delay at O’hare airport resulting in a flight that caused us to miss dinner and then we ended the day in a two hour rental car line that lasted until 11pm. So, from our family trip and booked our vacation. And now here we sit about 72 hours before wheels up.

James and I talk a lot about being fresh for our kids. We talk about it a lot, but in reality there just is not much time in our day to day schedule to do and enjoy the things that keep us fresh. The things that keep me fresh are having a cup of coffee in the morning to collect my thoughts before anyone else is up or going for a long walk alone after work or watching a 60 minute Bravo show without pausing it a million times or heaven forbid drinking a cup of coffee without microwaving it twenty times. For James this may mean a long bike ride in the morning or being able to mow the lawn and edge all in one round or sitting down with a book or eating dinner during the week before 8:30pm. The truth is that most days we work in just enough “us” time to get to bed at a reasonable hour and do it all again. I drink my coffee while I get ready for work and Grayson orders us around to change the show or fix the chocolate to white milk ratio in his cup. I take a long walk after work with both of my kids and walk 1/2 the distance in double the time, reloading snacks and negotiating to use gentle hands. My Bravo shows collect in my DVR and usually get deleted to make room for PJ Masks or Little Einstein’s. And, I rarely drink a coffee without at least 3 stints in the microwave. (Insert writing break to microwave my coffee). And James’ reality is bike rides pulling both kids in the bike trailer while looking back regularly to make sure the boys are not beating each other up in the trailer. If he is lucky he can mow the whole lawn in one day. And then maybe, but rarely, the edging happens before the next mow. Reading books is pretty limited to anything by Eric Carle and Sandra Boynton. And dinner is regularly served after 8pm. We figure out ways to work in the things that are important to us, they just happen a little differently than we may have imagined.

So, the idea of 5 whole days on vacation that are just about us is almost too much to process. So many times over the last month I’ve told people that we are going on a vacation to Mexico and everyone’s first question is “are you brining your kids>” The answer is a firm no, and here is why….

Family Trip: Building lifelong memories with your children. Moments of pure bliss and joy mixed in with moments of complete chaos and disarray. Being away from your house without a schedule or a routine and without all of the stuff you need to get through the day. A period of time in which most members of the family are under slept, over stimulated and exceptionally irritable. Tears (from the kiddos and the mommy) are likely.

Vacation: Truly vacating all of the stress and struggles of day-to-day life. An opportunity to have adult conversations and adult cocktails without worrying about possible middle of the night wake-ups. No schedules. No Routines. No problem! A period of time in which mom and dad can sleep and sleep and sleep. Moments of missing the kiddos, but otherwise completely enjoyable.

Travel to a Family Trip: Strollers, car seats, bags…oh my! More stuff than 2 people can handle while carting 2 little people around the airports. Stimulants, distractions, meltdowns. Kind strangers offering a helpful hand. Judgy strangers making me cry. Juice cups, snacks, activities. A hope and prayer that we all survive. Buckle in folks…it’s going to be a bumpy ride.

Travel to a Vacation: One bag, my own bag. Filled with my stuff and only my stuff. No Strollers, no car seats, no wrangling kiddos while trying to load our gear. Bloody Mary’s in hand within moments of walking into the airport. Smooth sailing.

Sleep on a Family Trip: Sporadic, unpredictable, minimal.

Sleep on a Vacation: Abundant, blissful, without interruption, plentiful.

Outings on Family Trip: Requires bag packing, schedule planning, meal preparations.

Outings on a Vacation: Requires flip flops.

Meals on a Family Trip: If we are brave enough to try this requires all of our normal tricks: coloring books, snacks, iPad, stickers, suckers. Plus and acceptance that inevitably one of us will spend at least 75% of the meal outside exploring with Grayson.

Meals on a Vacation: Requires Hunger.

Cocktails on a Family Trip: Requires rock, paper, scissors to determine who will handle the inevitable middle of the night wake ups. More time is spend refreshing cocktails that melt or spill before being enjoyed. A valiant effort that generally ends with both parents giving up and deciding that the effort may not be worth the prize.

Cocktails on a Vacation: Requires a cup.

Pool Time on a Family Trip: Requires the world’s biggest bag of crap ever! Sun tan lotion (Spray and lotion since Grayson’s preference changes daily), towels, pool toys, goggles, noodles, flip flops, swim diapers, swim suit, cover-ups, snacks, hats, sunglasses, flotation devices. (If you are at the beach add: buckets, shovels, Umbrella shelter, extra towels, and a cooler for juice and snacks). 9 million sun screen applications. Usually done while chasing the kiddo down around the pool looking like a crazy person. And dear lord you are a pool with a required “safety check” every hour. Cuz trying to explain to toddlers who want to swim is the lifeguards extra special way of saying “F-You, oh yeah, and I SO do not have kids yet so I’m giving you judgy looks and have no clue what I am in store for.”

Pool Time on a Vacation: Requires a pool.

Ok, so you probably get the distinction here. Please do not get me wrong….I love my children. They are the absolutely joy of my existence. However, I also know that to be good for them I need to be fresh. I need to give myself an opportunity to recharge my batteries. I need to step outside of the schedule and the monotony of our day-to-day life. And believe me, by the time we are wheels down in Mexico we will have already talked about our kiddos and looked at pictures of them a dozen times. Our hearts are always at home, but sometimes our heads and our bodies need to be in Mexico without them. I’m just saying!

JS

This life, this journey is about knowing when to stop and celebrate amazing things that happen. Sometimes that is as simple as hearing Grayson say “I love you.” Or watching him flush the toilet or wash his hands without verbal cues. Some of the moments we celebrate are moments that are probably pretty “typical” in other homes. Moments like making eye contact when talking or initiating play with a peer or pulling up his own pants after using the restroom. To us, these things are indications that all of the effort and all of the hours are working.

I am amazed by both of my sons every single day. Grayson blows us away with his commitment and follow through. His schedule is more gruesome then I would like to ask of my 4 year old. But he handles is like a champ. He rises to the occasion and he actively seeks out ways to make us proud…to make himself proud. And our son Rowan is just so darn smart. He is so in tune with people. He is gentle and kind and he will always turn your day around. I watch these two in awe every day.

And then there are some days…some moments that we cannot let pass without screaming from the top of our lungs how proud we are as parents. We had one of those moments the other night during a routine bedtime. James was finishing up some dishes in the kitchen while I read a story to Rowan. Grayson was waiting patiently in his room for his bedtime story. He came into Rowan’s room and selected a book. He went down to his room and seconds later we heard him begin to speak. My husband turned off the sink and I stopped reading to Rowan; straining my ears to hear Grayson. And then I heard it…he was reciting a book word for word. I swiftly kissed Rowan and placed him into his bed. And I all but ran down the hallway. I scooped Grayson into my lap. And then the most amazing thing happened. My 4 year old son recited me a goodnight story.

At this time last year Grayson could not speak more than 2 or 3 words in a phrase. And even then he was only repeating common phrases. He could not tell us about his day or his friends. He could not communicate his wants or his needs. Grayson was speaking at half of his age level a year ago. He was significantly delayed. This story just shows how much there is to say about early intervention. Sure, I hate the rigidity of our schedule. Yes, sometimes it makes me tired thinking about all of the hours of speech and therapy we have endured over the past 2 years. Of course there are Saturdays when I just want to lay in bed and watch cartoons with my kiddod rather than prep for 3 hours of therapy. All of those things are true. But do you know what else is true? Last year my son could not even ask me to read him a story. And, on Tuesday night…he read one to me. And that is why we do it. That is why we push. That is why we schedule. That is why we fight. That is why we rise up.

“But I see it in you so we gonna walk it out…AND MOVE MOUNTAINS”!

JS

Since I started writing about our experiences I have been overwhelmed by all of the love and support from family, friends and complete strangers. There are moments on this journey that make us feel completely alone. Even moments when we are surrounded by people we love. And in some of those moments being alone feels safe. And in other moments being alone just feels lonely. And when I write about our experiences I remember that we are not alone. I remember that the reason I started this blog in the first place is to share our experiences. So many people ask us questions about our experience. It still catches me off guard when people reference personal details of our life. I think “wait, how do you know that?” And then I remember that I am putting it out there for the world to read. I am taking moments of our life and turning them into stories about our experiences. These stories detail our fears, our struggles, our memories, our failures, our wins and everything in between. Sometimes I do not know what I am going to write when I sit down. Sometimes a thought lingers in my head all day long and I cannot wait to sit down and write about it. And sometimes something comes to me so quickly and so clearly that I have to pull over on my commute home and write it down in my notes app on my iPhone. You see, these experiences are our authentic life. They may not come in order. They may not come close to saying everything I want to say. But they represent moments in time. Our experiences and our attempts to navigate something that we were not prepared to navigate. I’ve already said here that sometimes this feels like one big failed attempt to get it right. And in the moments when we question ourselves the most, I am learning day by day to give myself permission to be imperfect. To make mistakes. To do it wrong and then learn to do it better.

There is one particular question about this whole thing that no one has asked me, but it is a question that I am myself every single day. I think about our journey and about my decision to share our journey in this public way and I ask myself what Grayson will say about this experience when he is old enough to understand. And here’s my answer…

These are my words. My experiences. My struggles. My fears. My ups. My downs. These are things that we are experiencing as a family. Most blogs are the result of a conversation that I have with my husband or a friend or a family member. That conversation sparks something inside of me that I want to share. And so I sit down with the intention of sharing my story, our story. The only thing I know for sure about writing about our life is that I want it to be our truth. I want it to represent the good and the bad. I do not want to paint a picture of our life that is not filled with joy and happiness. Because we have an abundance of joy and happiness in our lives. But I also do not want to paint a picture that we are just breezing through this experience. We are challenged every single day. We doubt ourselves and second guess ourselves and replay situations that we could have done better. That we should have done better. I think back to that moment we received Grayson’s official diagnosis. I think back to the emptiness. To feeling completely lost. To feeling alone and uncertain and paralyzed by the fear of not knowing how to move forward. And then I remember moving forward one uncertain footstep at a time. I remember moments of complete numbness. And I remember moments of complete clarity. I think about all of the decisions we made putting together Grayson’s treatment and his treatment team. I remember feeling like these decisions were the most important decisions I would ever make for my child. And I remember that scaring the crap out of me. As parents none of us want to make mistakes. I remember telling friends that building Grayson’s treatment plan felt like the most important recipe I would ever put together. I felt the weight of the world as I chose just the right ingredients and just the right quantities. Because this was one recipe that I did not want to get wrong. I put a tremendous amount of pressure on myself. I doubted myself and I worried that I was doing it all wrong.

These feelings, all of these crazy intense feelings, are exactly the reason I am putting our story out there. I want my voice to matter. I want the experiences we are navigating to mean something. I want to see the pain and the struggle become something positive; for us and for Grayson. I want other parents faced with the same things to understand that they are not alone. I want the momma hiding under her covers afraid to face the world to know that I was exactly where she was. I want the parents struggling to pick the right balance between therapy and school, pulled out verses integrated, typical verses untypical to know that there is no perfect recipe. I want to give those parents the permission to do it all wrong. To fail. And then to pick up the pieces and put it together in a way that makes sense for their family. And if putting our experiences out there, our journey down the spectrum, then I know that when the time is right I can explain my choices to Grayson.

I know that our parenting journey will include explaining our choices to Grayson. I know that one day I will sit down with my son and we will find the words to talk to Grayson about his autism. I know that we will have to explain Grayson’s autism to Rowan. We will need to teach both of them about tolerance and acceptance and difference. We will calm Grayson’s fears about being different. We will create a world around him full of love and support. We will make sure that he feels safe and protected. We will help him learn to embrace his autism; the same way my husband and I are learning to embrace it today. And if he is met with intolerance; we will teach him to rise above it.  I think this blog is the first step on our journey to teach Grayson about his autism. I know that Grayson will have a million questions. Many of the questions are probably things that James and I have asked ourselves over the past 15 months. And I want him to ask questions. I want to create a world for my family where we talk about the things we fear. I want us to give words to things that are scary, because sometimes just saying it out loud makes it less scary.

Every single word that I write here is true. But this is my truth. This is about my life as a mother to a son on the spectrum. I do not have autism and I will never understand what it means to live with ASD. I will love my son and support my son and I will fight like hell for my son. But I know that someday, when he is old enough, it will be his decision to live and speak his own truth. I know that his experiences will be different from ours. I know that watching him struggle, watching him in pain is the absolute worst feeling in the world. And as we move through our life together we will surely face struggle. We will surely face pain. But we will push forward. We will never walk away from a bad experience without learning something from it. We will do the wrong thing. We will learn to go back to the beginning and try again. And I know that I will be prepared to help Grayson along his journey. I know that because of this journey that I am on right now. All of these experiences will help me teach Grayson and Rowan to pick up the pieces and move forward.

When I think about all of the millions of ways I will surely embarrass both of my boys during their lifetime; sharing a blog that teaches awareness and acceptance seems like the least of our worries. My job as their mom is to teach them to live an authentic life; and that is exactly what I am doing. One mistake at a time. And so here, in my safe place, I tell you that I am not perfect. I make mistakes. But this blog, sharing these experiences, is not a mistake. And I will teach my sons that sometimes when you have something to say…you should just say it.

JS

The art of “relaxing” is definitely a lost art in the Sylfest house. We learned a long time ago that our hardest times of the day are the moments that are supposed to be the snuggliest and most relaxing. I had this idea of our parenting journey that included the kiddos crawling into bed with us in the morning to watch a cartoon. Or all of us snuggling under a blanket on Friday night with popcorn. And, those are really great visions. And I often hear my friends recount stories about these types of moments and I cannot help but feel a little sad. And a little tired. You see, when we learned that relaxation was not really “our thing” we did what we do with all of the other moments of our life…we scheduled.

Down time is particularly difficult for Grayson. He has a hard time sitting down next to someone without being overstimulated and needing to touch or hit or jump on that person. There is about a 5 minute window right after he wakes up and right before he goes to bed that you may be able to grab a quick snuggle while he drinks his milk. But that moment ends abruptly. Usually partnered with a punch to the arm or an unexpected jump that sends my coffee flying. And from that moment…it is go time. That 5 minutes is the end of our “sitting” time for the day. We do what we know works; we make a schedule. We move from one activing to the next setting clear expectations. Our visual schedules started simple when Grayson was 2 years old, but they have since evolved. We can map out a sequence of up to 5 activities for Grayson that schedule out a block of time. He uses these schedules in therapy. So using them at home helps create consistency. It also makes getting through the days easier.

There are a lot of times that I wish our life was less scheduled. That I long for a “go-with-the flow” day that is adaptable and un-scheduled. There are times when we are invited to something spur of the moment and we wonder about the consequences of saying yes. Occasions when we are invited on an overnight visit and we worry about our schedule and our behavioral plan and how it will adapt with us as we travel. You may be reading this and thinking that we are nuts. That it is crazy to have a schedule so strict. There are moments when I think even the people closest to us question the authenticity of our true need for the schedule. Moments when they question our approach and wonder if it really isn’t more about us than it is Grayson. And in the beginning I used to let those reactions hold me down. I used to let the disappointment of saying “no” wash over me. I let it linger with me and I would feel bad for days. I would myself questions our approach. I would question whether or not we were doing the right things for Grayson, for our family. And in the beginning a lot of times we said “yes” when we knew “’no” was the right answer. And we said “yes” because I hated the feeling of being second guessed. I hated knowing that people thought we were copping out of living life. Life the way they thought we should be living it. Life they assumed could be lived the same way that there’s was.

Along this journey acceptance washes over you in the strangest of moments. I actually remember the day I decided to stop saying “yes” when I wanted to say “no”. I remember how liberating it felt to decide that is was ok to do what we thought was best. Even if it made people question us. Even if it made people second guess our approach. You see, we make the choices we do because only the four of us live this life every day. There are lot of people that get to see pockets of time, moments of our life. But no one sees the whole thing. When I talk about our therapy schedule people always ask how we get it all in during the week. And the truth is that it is not easy. On top of the therapy hours there is a lot of time spent in our house preparing for therapy. Can you imagine what it would be like to have a revolving door of people in your house every day of the week and Saturday? To never have a moment to let the mess pile up or the dishes over flow? To live in a house that is “company ready” at all times? And sure, they tell us to live our life normally and not worry about our house. But if you know me at all you know that this is not an option. So we live in a house that is always ready for visitors.

So we take on each day. And every day is a little bit of the same and a little bit of different. Someone somewhere along the way told me they would love to see a time study of everything we cram into a day. This morning I was home alone with my boys. We were scheduled to have therapy from 9am-12pm and other than that planned to spend the day around home. So I grabbed my iphone and kept a log of our morning together….

• 6:53am Grayson wakes up, walks to hallway, sits down and makes noises trying to wake me up.
• 6:55am I set a 5 minute timer for Grayson to take his pull-up off and go potty.
• 7am Timer goes off, Grayson melts down about going potty.
• 7am-7:05am Grayson throws toys around the house and slams door in an effort not to go potty.
• 7:05am Grayson goes potty.
• 7:06am Grayson melts down about putting underwear on.

*Side Note: Potty training is still pretty new for us and he is handling it like a pro. Mornings are tough for him some days. Today was a tough day.

• 7:08am Grayson drink his milk on the couch will all of his blankets. He still moans when he drinks (aka slams) his milk like he did when he was a baby. It is probably one of my favorite moments of the day. He also still hold his little lovey “ducky”. It is one of very few moments in a day when he is completely relaxed and still.
• 7:09am Mommy makes coffee #1.
• 7:10am Rowan wakes up, I change his diaper and bring him out.
• 7:12am We make a visual schedule for the morning: (1) Watch a show (2) Eat Breakfast (3) Get Dressed, (4) iPad, (5) Therapy with technician.
• 7:13am all 3 of us sit on the couch and Grayson demands “Might Machines” on Netflix.
• 7:14am Grayson hits me on the arm and starts jumping towards me on the couch
• 7:15am I take my coffee and hide out in the kitchen.
• 7:18am Rowan runs into the kitchen demanding pretzels.
• 7:25am potty alarm goes off and Grayson goes potty without incident.
• 7:35am Rowan and Grayson dump every single toy in the playroom onto the floor.
• 7:38am we begin cleaning up every single toy in the playroom. And by “we” I mean “me”.
• 7:42am I begin making breakfast.
• 7:50am potty alarm goes off and Grayson goes potty without incident.
• 7:53am I have been awake for 1 hour and my Fitbit tally is 1,342 steps.
• 8am Rowan and Grayson sit at the breakfast bar and eat breakfast. Rowan demands milk and then throws it. Rowan demands water in his Elsa cup and then throws it. Rowan demands water in his Tinker Bell cup and then actually drinks it.
• 8:05am Mommy makes coffee #2
• 8:10am both boys get down from breakfast having eaten basically nothing.
• 8:12am Grayson takes a 4 minute time out for being too rough with Rowan. He gets down 12 times during the time out.
• 8:15am there is a moment of peace in the palace.
• 8:17am Mommy microwaves her coffee.
• 8:20am Rowan is in 2 minute time out for hitting mommy and yelling “stop it”.
• 8:20am Potty alarm goes off and Grayson attempts to poop in the potty.
• 8:25am Success!
• 8:30am Grayson gets an iPad as a reward for pooping.
• 8:31am Rowan demands an iPad.
• 8:32-8:44am Both boys play independently on their iPad.
• 8:33am Mommy microwaves her coffee.
• 8:45am Potty alarm goes off and Grayson goes potty without incident
• 8:49am Mommy microwaves her coffee.
• 8:50-8:57 Rowan and Grayson sit together on the couch and watch the same iPad screen. This is crazy super ridiculously rare and awesome!
• 8:53am I have been awake for 2 hours and my Fitbit tally is 2,042 steps.
• 9:04am Technician calls to delay 9am session to 10:30. Meanwhile Grayson is pressed against the window awaiting the tech. To distract him we adjust and bundle up to go outside.
• 9:10am Every single toy outside gets dumped into the yard.
• 9:35 Potty alarm goes off but Grayson is sad about going inside. In process he pees his pants. We go inside and change his clothes.
• 9:37am Hot chocolate to warm up from outside.
• 9:39am Make a visual schedule (1) Plah-doh, (2) Snack, (3) Therapy
• 9:43 Mommy makes coffee number 3 while realizing she has eaten nothing but coffee.
• 9:45 -10:15am Play-Doh, this is a long time for us to do an activity.
• 9:53am I have been awake for 3 hours and my Fitbit tally is 3,105
• 9:55am Potty alarm goes off and Grayson goes potty without incident.
• 10:18am Technician arrives.
• 10:20am Grayson does not handle the transition well. Pushes Rowan and he falls down and bumps his head. Gray takes a 4 minute break in his room.
• 10:22am During Grayson’s break he pees in his pants 3 minutes before the next potty alarm. We change clothes again.
• 10:25am Grayson and the Technician go downstairs for session.
• 10:26am Rowan help mommy clean up Play-doh and then chooses a snack and Tangled. He enjoys a few minutes of peace.
• 10:28 Mommy realized she make 3^rd coffee 45 minutes ago and never drank it. Coffee goes in the microwave.
• 10:30 Mommy changes the laundry over.
• 10:32 Mommy cleans the boys bathroom (potty training is gross).
• 10:53 I have been awake for 4 hours and my Fitbit tally is 3,905.
• 11am Shakeology for survival.
• 11:05am Grayson comes up on break.
• 11:10am Grayson pushes Rowan down. After some convincing he says sorry and gives him a kiss.
• 11:15am Potty alarm goes off and Grayson goes potty without incident and then goes back downstairs for more session.
• 11:20am Grammie stops into drop off some things off.
• 11:25am Technician races upstairs with Grayson who is on the verge of a poop.
• 11:30am Poop success! Back downstairs for more session.
• 11:32am Mommy warms her coffee in microwave again.
• 11:53am I have been awake for 5 hours and my Fitbit tally is 5,304.
• 11:59am Mommy warms her coffee in the microwave, again.
• 12pm Visual Schedule for family session: (1) Game, (2) Puzzle, (3) iPad time
• The family session did not go well. Gray was tired and distracted both boys were hitting and unfocused. After a Rowan timeout and then a Grayson time out we decided to call the session early.
• 12:38pm Grayson goes into bed for iPad time before nap (iPad time is a reward for pooping in the potty earlier).
• 12:53pm I have been awake for 6 hours and my Fitbit tally is 6,458.
• 1:08pm Rowan goes down for a nap.
• 1:12pm 21 Day Fix Pilates Fix.
• 1:45pm Shower.
• 2:15pm Mommy sits down to eat a meal and write a blog.

This was actually a really interesting experience. I always joke about how many times a day I microwave my coffee, but holy cow! During the week I drink 1 coffee while I get ready and 1 while I drive to work. I never microwave them one single time. Just one example of different it is trying to do “normal” daily activities surrounded by kiddos.

Our life is crazy and insane and wonderful and exhausting. And some days we do a better job than other days. Some days we get off of track. Somedays things happen. Technicians cancel or come late. It rains after we’ve “scheduled” outside time. The iPad freezes during iPad time. These things happen and they help us teach Grayson, and Rowan, patience and tolerance. They help us remember that even though life is easier with a schedule; there are some moments in life you cannot plan for.

JS

The day I started writing this blog I did something that has become a part of our normal weekend routine. I woke up before 7am on a Saturday and I headed to the grocery store for groceries and donuts. As I made my way to the store I enjoyed a moment alone in my car. I enjoyed the easy silence of the morning. And then I realized that without knowing it I had driven most of the way to the store listening to my kiddo’s CD. So I switched over to the radio and continued my drive. I pulled into the store I realized that I was crying. I stopped for a moment to try to understand what had happened. Why was I crying? And then my brain focused on the words of the song playing on the radio. I quickly downloaded the song and I sat in my car in the grocery store parking lot for another 10 minutes and listened to the song 3 more times. I listened and I cried. And then I took a deep breath, wiped my tears, and headed into the store for groceries. In that moment I had discovered something that has become very precious to me; my fight song. It is the song I turn to on a tough day. It is the song I need when life feels too big. To real. It is the song that reminds me why I am on this journey. Why I was picked to be Grayson’s mommy. It is the song that reminds me that I am doing the best I can and that my best will always be enough; even when I feel like I am falling short.

I want to talk about this song. And about the importance of having something like a fight song to keep me fresh and moving forward. But before I do that I need you to read these words. Maybe even click the link and listen to this song. Because whether you are living with a child on the spectrum, or battling through any number of other difficult situations, I think these words matter.

Rise Up by Andra Day

You're broken down and tired, of living life on a merry go round. 
And you can't find the fighter, but I see it in you so we gonna walk it out. 
And move mountains 
We gonna walk it out 
And move mountains

And I'll rise up. I'll rise like the day. I'll rise up. I'll rise unafraid. 
I'll rise up. And I'll do it a thousand times again. 
And I'll rise up. High like the waves. I'll rise up. In spite of the ache.
 I'll rise up. And I'll do it a thousand times again. For you

When the silence isn't quiet, and it feels like it's getting hard to breathe. 
And I know you feel like dying, but I promise we'll take the world to its feet. 
And move mountains 
We'll take it to its feet 
And move mountains

And I'll rise up. I'll rise like the day. I'll rise up. I'll rise unafraid. 
I'll rise up. And I'll do it a thousand times again. For you

All we need, all we need is hope, and for that we have each other 
And I'll rise up. High like the waves. I'll rise up. In spite of the ache. 
I'll rise up. And I'll do it a thousand times again. For you

Listen here: “Rise Up” by Andra Day

This song speaks to me from the very first words. Because so many days I do feel broken down and tired. Too many days I will myself to find the strength to move forward, to not give up. This week we had a technician in our house from 5-7pm for family therapy. And at the end of a particularly trying meltdown she looked at me and said “I don’t know how you guys are always so calm.” And the thought that ran through my head was “well, it isn’t like I can totally lose my shit while you are in my house.” And the truth is, that sometimes I do want to totally lose my shit. To come completely unhinged. To duck and run for cover. And in those moments I am blessed to have a partner that can see those feelings and those needs wash over me. And so he gives me permission to take a step back and collect my patience. I take a moment long enough to remember that I am mad at the autism and not at my child. That is a gift that my husband and I give each other every day. The gift of allowing each other to have moments of imperfection. Sometimes it is over in an instant. The second I close the door to my room and take a deep exhale I feel ready to go back out and face the melt down. And some days I linger longer. Some days my moment turns into the need to run to the store or go for a walk. And I am not going to apologize for that. Sometimes, I need to get away. And that is the thing that fuels me to come back and do it again. To be better. To rise up. And so when I hear the words “when you are broken down and tired, and living life on a merry go round” I think, oh thank you god I am not alone! Someone else, somewhere else feels this way.

But I think the thing that I most connect with about this song is that it is not really about the writer at all. Sure, she is the one that is going to rise up, but she is doing it because of someone else. Someone else that she loves so deeply and believes in so strongly, that she will walk to the end of the earth to be the strength that person needs to keep moving forward. And this is exactly how I feel about being Grayson’s mommy. And this is exactly how I feel about being Rowan’s mommy. As a parent you realize that so many things that happen in the course of a day have nothing to do with you. We move through each day, through each moment, through each triumph and each struggle with a laser focus. A focus on doing everything in our power to keep our children moving forward. To help teach them what they will need to know to make good decisions for themselves. To give them every resource possible to give them the best chance at being happy. To be healthy. To live a full life. And that is what this song is about. About knowing that it will not be easy. Knowing that the parenthood journey will require us to both push and be pushed. Knowing that we will need to put our own fears aside to be strong for our children. To help teach them to be strong.

If you listen to this song it may mean something different to you. It may not speak to you at all. But it speaks to me. It gives me strength. This is my fight song. And I think at the end of the day we all need a fight song. We need something to propel us forward. To help us find the strength that left our bodies, the hope that left our hearts and the will that left our brains. It helps us find all of those things; and it brings them back to life. I tell you what, I already know that my love for my children can move mountains. Because it already has. Together, my husband and I have risen time and time again to face things that scare the crap out of us. And because we rise up; so will our children.

JS