The straw that made the camel realize he couldn't carry the load alone

Am I the only one who feels consistently overwhelmed? I don't think I am, but I feel like I'm the only one who is looking this ugly and disheveled and completely crazy while feeling overwhelmed. I see everyone else talking about all the things they have to do, and all the emotions they are juggling, and I wonder how you all manage to do it while looking so pretty and put together. Everyone else seems mildly hurried, while I feel like I've died only to be brought back to life in the back of the ambulance and then dropped off at my kids school play, with a soccer fee check (that I hope doesn't bounce) in hand and dinner left in the oven probably burning my house down. What are your secrets to this you guys?! I want to join the living again!

At church on Sunday it was fast and testimony meeting. For those of you who think I'm speaking a different language, in the LDS church one Sunday a month, usually the first sunday, is set aside for the purpose of fasting. Members of the church go without food and water for 2 consecutive meals, and then contribute the money that would have been spent on those meals to those in need. You can find more info at lds.org.  During one of the meetings at our church services that day, the pulpit is open to individuals to get up and share a testimony of some concept or principal of the gospel that they know to be true. There is no set program, just an open microphone at the front of a large group of people with open hearts. 

This last Sunday was testimony meeting. A member of our bishopric stood and began by sharing a few words about how everyone struggles and if we feel like someone isn't struggling, we just aren't seeing the whole picture. His comment got me really thinking about what I was feeling. I felt that familiar pounding in my chest, and the same "I don't even know what I'd say if I went up there" phrase running through my head. I went up anyway.

 I shared my testimony of the plan of salvation, and how nothing is lost in the eyes of Our Savior. I am a cynic at heart and it's so easy for me to look at those around me and think,  they have it so easy, and I have all of these challenges I can barely handle. If I had to face one more thing, I'd break. I have suffered so much hurt. And I have. I've experienced everything from teenage pregnancy and a subsequent very messy and mean custody battle, to divorce and dealing with the effects of someones addiction, to financial stress and living with my parents for years, just to name a few. Our lives have in no way been easy, but I firmly testified then, and again now, that I know that the gospel of Jesus Christ is not an insurance plan against pain, but a beautiful resource to deal with that pain. This life was never meant to be painless, but the promises we were made are eternally beautiful. 

I always joke that I picture myself up in Heaven standing around in a big auction style group and someone reading off the situations and challenges needing to be faced here on earth with the crowd silent as I look around waiting for someone to volunteer.  So me, with too much spiritual pride, probably because I felt invincible in the presence of Heavenly Father, volunteered for all these things that I didn't fully understand the weight of- things I didn't realize would be as hard as they are.  And as I struggle with these things now, what feels like so far from my Father in Heaven, I feel like things are unfair.  But I know that I chose, or at least agreed to, these challenges in Heaven. That I knew the reward and accepted the risk. As I think of these challenges, and the weight they hold, I want them to just be lifted from me, to vanish and be as if they were never here. But I realize that isn't how it works. The stumbling block isn't always just removed. So instead of praying for removal, I've started praying to feel closer to my Savior, to regain some of that spiritual pride I felt when I agreed to take on these tasks. I know and can tell you with more faith than I can express, that when we see our Savior again, and feel his embrace, none of us will be thinking we were jilted in this life. 

I write this and can't help but smirk. I had no idea why I felt I needed to declare these things publicly in the moment, but as I look back on the week it all makes sense. I needed that boost of encouragement going into this week. I needed to hear the comfort of my own words and feel confident in my knowledge that it is all possible. Heavenly Father was reminding me what I know before handing me one more task.

On Tuesday, while Tim was out of town, we found out Hayden has a heart condition. He had complained of chest pain here and there during the cross country season, so we scheduled a cardiology appointment for him. We still don't have many answers, but this is what we do know. 

We know it's serious but we don't know how serious. His coronary artery is dilated 3 times what it should be and they don't know why. We are waiting to hear from the hospital to schedule us to come in and do more tests, including an angiogram.  We know he's on activity restrictions and we know he's crushed. He made the competitive soccer team, something he worked so hard for, and he can't play until further notice. We know, pending a miracle, that the artery is permanently damaged, but not to what extent. The sonogram only showed us what is going on from an outside view, not from an inside view. The tests we are waiting for will tell us more. We know that this will be something he will deal with for the rest of his life, just not to what extent. He could require heart surgery now, or in 10 years, or 20 years, but this is something that he's having to learn to deal with as his "new normal". Our fingers are crossed for the best case scenario that he can continue with his daily activities and we can see the cardiologist every year to check up on it, until it creates more of a problem. We know that the doctors we have are competent, and will be lead to the right answers when we need them. 

And finally, we know that Hayden has a loving Father in Heaven who cares for him in a way that we cannot fully comprehend. We know that Hayden is on his mind, that he is not forgotten, or lost. We know that our walls are continually before him, and that he has graven us upon his palms. We know that this life is not fair, or easy, but that in the end, in his arms, none of us will feel it is unjust. 

Keep our cute boy in yours prayers this week, and I promise to update you as we find out more. xo

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. 

Magic in the Mundane

I think we live in a world of fast paced magic. It's so easy to see the highlight reels of lives around us and compare our mundane day to day to them. To scan pinterest and see all the things you didn't do to make your kids day exciting and fun and pretty. watching other people so glamorously find their magic in motherhood, wondering why we can't find it ourselves. We see the park days, the National whatever holiday celebrations, the travel to exotic locations, the picturesque holiday scenarios. And I think it leaves so many people feeling like they need to create magic everyday, or they've failed. I think the real beauty in motherhood is in the mundane. Anyone can play gorgeous photo reel for a day, do the Disneyland dad thing. And it's beautiful, it really is, but it's not necessarily a measure of success. We are so quick to overlook our own strengths. It takes love and strength just to wake up everyday and push past the feeling of repetition. To accomplish things we never see on instagram or other social media feeds. The heaping loads of laundry, endless supply of dishes, the daily grind of work, feeding unruly toddlers, or getting screaming kids dressed. Doing the things that never seem to get done. The things that don't make glamorous or intriguing photos. The little things that our families couldn't function without us doing. I think the beauty is in the sacrifice. And it's hard to capture that in a picture. as I take a step back this morning while feeding Jos, I realize I may not be the most fun or celebratory mom, but I love my kids fiercely, and my feet hit the ground every morning with the sole intention of meeting their needs the best I can. And I think that is beautiful.

Hello, is it me you're looking for?

It's been a while, right? I had such high hopes for my blog, as a way to keep an online journal and find my own little corner of the Internet to share, connect and process. But, as always, life seems to have gotten in the way.

 As I started the blog I also started an Etsy shop where I made wooden color block charm bracelets to help offset some of the financial stress of treatment and therapy while Tim was in school. Some where along the way, the shop took off and I kind of lost my vision of sharing our story in the flood of trying to keep our heads above water financially. From time to time I think about it and wonder if, and where I should go with the blog from here. We've had so many beautiful and uplifting experiences with Josephine lately, as well as a few hard experiences, and as I share them with friends and family I find myself contemplating and reflecting on this page. With the encouragement of a friend,  I've decided to once again share our experiences and perspective on autism and our family's trials and triumphs.

One of the things I think I felt pressure about was making everything feel smooth, and chronological, to make sense to anyone reading. I've decided to just toss that idea out the window, and just share what I feel, when I feel it, as it feels necessary to share. As we've continued on this journey, I've come to realize that our perspective on autism is rather unique, and I really want to share it. So thanks for sticking with us.

xoxo wyatte

The heartache of loss

The year mark for Josie's unofficial autism diagnosis came and went, and we found ourselves too busy to really even realize it. With a move, and new job and school, we had too much to focus on in the present. But as our lives slow down, I find myself lying awake at night and rehashing that whole terrible week. Not necessarily because of the autism diagnosis, but because 3 days after the diagnosis, in the midst of being overwhelmed and scared and unsure, we lost our unborn baby. I miscarried at 10 weeks, a mere 72 hours after already feeling like life had been turned upside down. 

I write with caution and reverence, as I know I am not alone in this experience. Miscarriage can be such a taboo topic, something we don't speak of out of fear of offending or making uncomfortable. But recently I have felt like I need to express our heartache in miscarriage.  Here I am, over a year later, and it's again rising to the surface ready to see the light of day. 

We had a surprise pregnancy when Jos was one. I remember looking at that plastic stick with its blue line, and crying. Thinking, I'm not ready. We would have our 3rd child about 3 months before Josie's 2nd birthday. How would I do it? Eventually, excitement edged out fear, and we began to happily envision our life as a family of 5. 

When we got Josie's initial diagnosis I was overwhelmed. Scared of the unknown, and not sure how to process it. Things already felt so fragile. 

We sat in the emergency waiting room for hours. 7 to be exact. It was a harsh way to add insult to injury. To have to experience such a deep and personal fear in the midst of chaos and drunken commotion. It pained me to watch person after person go in to see the doctors before me, making me feel like no one cared about the fate of my child. I understand there was little they could do, and they just needed to confirm the source of the bleeding, but to see everyone so lackadaisical about something that I felt such urgency about made me feel hopeless. We left with unconfirmed results. When I saw my doctor, she told me that we had miscarried.    

That night I cried. Probably the hardest and most genuine tears I've ever shed. They came fast and hard, and I didn't try to hold them back. It was the kind of ugly cry that you know you will feel embarrassed about later, but in the moment you feel like you have no choice but to let your body do what it needs to. The kind of cry that the bible describes as weeping and wailing, and gnashing of teeth. There was all of that. 

The next day is what I have been replaying in those late night moments when I am not quite asleep, but relaxed enough to gently slip into it. It's not the intense moments after initially finding out, but the day after. When I was expected to go on with life as normal. When I was expected to pull up my boot straps and get back to life as I knew it. But the problem was, life wasn't as I knew it. What I knew was two healthy children, and excitement for a child on the way. The picture I had held dear, of our life as a family of 5 was instantaneously ripped from me. 

I recall walking around my house in my pajamas still feeling sick and sore. The lighting seemed off, more grey than it should. I even checked the fixtures to see if the bulbs needed changing but they were fine. Everything physically looked muted, dark. There was a quiet that hung in the air, hauntingly thick, like if I just waited for the right moment I could reach out and grasp it. The walls seemed too thick, and the ceiling felt too high. I could feel my head pounding, translating the sound of my heart beat. It frustrated me. It felt like a reminder of mortality, and the body that I felt had just betrayed me. I wanted that baby. I wanted to raise and nurture that child into adulthood and see that child succeed. That child was a member of our family and my body decided to discontinue my pregnancy, without even asking. I have never before felt so disconnected from myself. Like my body was its own living, maniacal, decision making thing, and I was merely at its mercy. 

As I sat on the couch, I watched as Josie aimlessly wandered the house with that familiar dazed look in her eyes. She looked a lot less engaged in those days, and it pierced my soul as I contemplated my perceived miserable life. I literally felt as though I could never be happy again. Like there was only so much happiness allotted to us in our lifetimes, and because of the loss of our baby, and the loss of the life we had envisioned for Josie, ours would permanently be maimed. We could only attain a certain level of happiness in our lifetime, and it was significantly diminished because of our loss. Like the best grade we could get was a D, and the rest of our lives would have to be perfection to even attain that. My brain tried to tell my heart it would would get through things, that it was speaking irrationally, but my hearts screams just drowned out any consoling thoughts in my head. 

I can remember my body feeling heavy, my hair feeling unusually matted. My body felt like it was in a haze, and I remember desperately wishing that haze would envelop my mind so I didn't have to feel this much pain. As I sat immersed in despair and self pity, I noticed a square of light had reached its arm through my window and settled on the wood floor a few feet from me. I felt angry. Enraged that the sun would dare shine on a day like today. Expecting that because of my loss the whole world should be experiencing life at half mast. But it didn't. It was life as usual outside my doors, and I think that's what scared me the most.  The feeling that no one was phased, or even aware of my loss. The fear that if I could join the world, that I would too be unphased and unaware of my loss- as though there were only two options. That functioning would be disrespecting the child that I had lost. Wondering how I could accept a life where that child wouldn't exist and find a balance between mourning and normal. My heart had been melon balled and I knew the flimsy shell that was left wouldn't survive the outside world. I felt shame- so much shame. Shame for announcing to everyone that we were pregnant so early. Like after having two children I should know better. I found myself fearing the reaction of others and dreading having to see their expressions when they heard. The world seemed infinitely too large, and far too small all at once. 

I don't know when I finally got off the couch, or what compelled me to do so. But piece by piece, I accepted little bits of light back in. Some days I allowed lots of pieces of light in, and others just one or two. It's true that when we have children, our love is multiplied, not divided. And there will forever be a small corner of my heart for that child we never met that will remain empty. The other chambers may swell with joy, and mask that hole for a bit, but it will never fill it completely. It will always be a space for me to visit to be alone and feel the bittersweet sting of mortality. 

I don't know exactly why I've been replaying these days in my mind. Perhaps the contemplation of expanding our family in the future has me reliving my darkest days as a form of self preservation. Maybe it's an alarm system integrated in my subconscious telling me, "don't do it- you could get hurt again." Or perhaps  I just never processed it like I should have. But what I do know is that in a lot of ways, living in constant perceived fear is worse than heartache. Heartache will soon ease, but fear is an insatiable monster that will continue to grow until nothing is left. Yes, when we go to have another child, we could experience another miscarriage, and have a 20% chance of having another child with autism. But I know that there is a plan for my life. That even though I may not understand all of the pain and hardship this life holds, that I know that they can be overcome. That joy will always trump sorrow, faith will always fight fear, and light will always overcome the darkness. There is so much joy to be had in this life, and a Father in Heaven who loves us immeasurably, and has given us a way to succeed through our trials.

Down the Rabbit Hole

The question I get most frequently from people is, "How did you know Josie had autism so early?" It can be summed up in all of 2 words- MOTHERS INTUITION. Ok, that's an overstatement, but really, without following my gut, we would still be thinking Josie was "stubborn, bossy, and independent".

From the time Josie was about 9 months, I had feelings here and there that her behavior was different than most 9 month olds. Nothing over the top, just a feeling. She excelled greatly in terms of motor skills. She crawled and could pull herself up to things at only 5 months. But small things here and there never sat right with me. She wouldn't focus her attention on anything I attempted to engage her in. She never responded to her name. When my Dad would try to play with her, he would get right up in her face and she'd turn her head as if to say, "don't look at me." She would sit through an entire movie, literally, an entire movie, credits and all. What 9 month old does that? My 9 year old wouldn't sit through credits! So small things, here and there.

Part of me always knew. But admitting it was the hard part. I remember joking with my husband one day, saying "she's not interested in making meaningful relationships." I mean, come on Wyatte! You knew! When my husband seriously questioned me about it, I said, "no, she's fine. She snuggles and makes eye contact, it's just on her terms." And we left it. But I felt slightly sick inside each time I tried, desperately, to get her to play with me and she preferred to get every grain of sand out from the crack in the cement at our park. If I admitted there was something different about Josie, everything would change. I felt like Neo in the matrix when Morpheus says, "After this, there is no turning back. You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes." Sorry for the uber nerdy reference, but that is exactly how I felt. Each day I chose the blue pill. To shove it down and wake up like everything was fine. What would happen if I chose to see things for what they really were? How would life be affected? What responsibility would that place on me, when I already felt like I struggled with motherhood as it was? Admitting something was wrong was a game changer, and I felt like I was barely hanging on in the game I was currently playing.

After Jos' first birthday was when I really noticed signs I couldn't ignore. At her 1 year check up she was saying about 8-10 words. Things like mom, dad, bra bra (brother) cat, dog, hi, etc. Around 13 months I realized she wasn't saying any words anymore. In fact, she wasn't communicating with us at all. She was babbling again, but no expressive words were coming out. I realized we were playing a guess and check game with her to be able to meet her needs. I stay at home with her all day, so when she would cry I'd say, "she hasn't eaten in a while, I bet she's hungy" or "it's around nap time, she probably wants a bottle". She also wouldn't follow any simple commands such as, "go get your ball." She wouldn't even acknowledge that we had asked her to do anything. But since she had always been so loving and cuddly, again, we thought, 'oh she's fine! She's just stubborn and independent.'

About 2 weeks later I noticed she was putting her finger in her ear and moving it around. We had her ears checked many times, and they always said her ears were perfect. She began doing this repetitive motion so fiercely that her ears began to bleed. Her tiny finger nail would cut the skin in her ear and they would bleed profusely. I realized she was either experiencing hearing loss, or it was autism. I called the doctor immediately and he saw us the next day.

As I voiced my concerns, he confirmed them. He referred us to audiology, neurology, and Alta. Alta is a company in California that helps assist families with children that have special needs. Alta coordinates care and planning for families with autism, including initiating the process for diagnosis. He told me we were going to hit it hard and be aggressive. That we were going to figure out what was and wasn't going on, and that if in the end it was autism, that we are better off knowing now because early intervention is the best course of action. He told me that he wanted to hug me for facing my concerns and not burying my head in the sand. I wanted to cry.

I left the office in a fog. I climbed in my car and called my best friend, blubbering about how she can't have autism, I can't handle anymore stress. Do you know the time and work needed to care for a child with autism? Blah, blah, blah. And my friend, like any best friend would do, told me to knock it off. That if Josie has autism its because I'm strong enough to handle it, and that I will handle it because that is my only option. Josie is still my Josie, she just needs some extra attention to help her learn certain skills.  

And she was right. We aren't out of this all the way, we may never be. But we are safely on the other side of a diagnosis. And let me tell you, life gets better when you take the red pill. I'm not wondering why she isn't like other children anymore, I'm enjoying what makes her unique. We aren't trying to grasp at straws for what makes her normal. We are celebrating her strengths and supporting her weakness'. Autism was a game changer for me, but I realized all along it was the game I should have been playing. I felt behind in the motherhood game because I was applying the wrong rules. I truly have felt like our diagnosis has been freedom rather than bondage. It's freed us up to let Josie be who Josie is, without feeling pressure to conform to the "norm".

If you are concerned about your child, I recommend taking a test called the M-CHAT on autismspeaks.com. I have a link to it in the buttons at the right. It will help you decipher if you should seek help for you child. Only you and your pediatrician can make the right call for you, but I always recommend seeing a pediatrician about your concerns. Either they will put your concerns to rest, or they will help you get your child get the early intervention your child needs. It's never too soon.

I Know Why The Caged Bird Sings

To begin with, I'd like to thank you for even following along on this crazy journey with us. It has, to date, been a true roller coaster. Extreme highs followed by some pretty low lows leading back to gratitude and contentment. But that is to be expected in any course of life, especially when it deals with ones child.

I want to explain the title of the blog a bit before I dive into anything else. It may seem self explanatory to some, but I want to share what it means to me. The Maya Angelou title, 'I Know Why the Caged Bird Sings' was assigned to me in my high school English literature class back in 10th grade. The poetic title has always stuck with me, more than any of the words from the pages. The title in itself was a beautiful lesson to my sophomoric self. I always interpreted it as a story of triumph in the face of what should have been heartache. And I've tried to carry that lesson with me through my adult life, and find my song through the bars of my life's cage.

This took on new meaning when I began to suspect Josie had autism. People view autism as a disorder that imprisons you. They view a sweet, happy, and social child, locked inside the bars of a disorder that causes them to have a flat, emotionless affect, making them incapable of showing love. People view autism as a burden, a heavy, crippling, burden. And while there may be grains of truth to that viewpoint, I am committed to applying the lesson I learned in 10th grade.

Our sweet girl may have challenges we cannot personally understand. And those challenges may cause us to live a different life that most. But there is still a song to sing. There is still music to find, and JOY to be had in this diagnosis. And everyday I'm pushing myself to look closely and find the JOY in this diagnosis instead of the ever apparent and easy to pick out challenges. Because everything good is worth working for. And one day, my sweet Josie bird will sing a beautiful and well deserving song, all on her own.