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.