The Wonder

Dear Addie,

Did I ever tell you that you didn’t cry when you were born? It’s true, after only 20 minutes of us arriving at the hospital (and no time for an epidural), there you were in my arms. A beautiful bundle of joy having just had a whirlwind and shocking entrance into this crazy world… and you were silent.

Having felt very much like a veteran to this parenting game with you being our third baby, I wondered.

We brought you home and began settling into life as a party of 5 and it didn’t take long to notice that with you being only days old you didn’t seem to sleep as most newborns did. You’d just lay awake, content, but awake. I wondered.

As a baby, your favorite place to lay was in the middle of our living room floor, not in our arms, or swaddled tight, but alone in an open space. I wondered.

Next would come your lack of language & sleep in your toddler years. I wondered.

You always saw a need to line things up from fruit to toys and your love for twirling in circles for long periods left me to wonder.

Then there was your outbursts in restaurants and stores when you’d hear another baby or child cry (we would jokingly say it was extreme empathy you had for them), but I wondered.

Fast forward to today and all of that early wonder has been replaced by a diagnosis and a ticket to a journey we knew absolutely nothing about except it was sure to be full of that familiar wonder.

A journey that I can now say has taught us more than we ever could have imagined about life and human beings, and even society in general. What appreciating the little things truly means, what joy really looks like, and what love and devotion can conquer. About kindness, empathy, and respect. I can tell you, I without question feel blessed having had this opportunity to experience what I think is the purest, most real form of humanity far away from what humans have developed over time as considered “normal” or “acceptable” behaviorally or socially.

But having said that, to every coin there’s a flip side and this week I got stuck there.

It started with you having a pretty rough day.

I‘d like to say it was just a bad day at school, but as much as I didn’t want to admit it, I saw the downward spiral happening all over again in the days leading up to this.

Before I knew it, I was pouring all my feelings – fear, anxiety, doubt - out to daddy, wiping my face with a kitchen towel while making pasta sauce. I guess you could say that’s a form of multitasking, but I was stuck. Like really stuck down a rabbit hole of unknowns, doubt, sadness, and guilt.

You see Addie, it’s been 10 years. 10 years of not knowing where we are going. 10 years of endless doctor’s appointments, research, therapy, paperwork, insurance, evaluations, waitlists, unsolicited advice & opinions, judgment, worry, and yes, wonder. With every single step, choice, or decision I second guess myself, and then inevitably someone who perhaps hasn’t walked a day in our shoes keeps me guessing even more.

This journey has changed me. I think it’s changed all of us, or maybe, I don’t know if it just showed us all just who we were intended to be? My faith that I fall back on, yet question so much, will lead me there - we are who we are intended to be. Right?!

I know what you’re thinking, perspective mama! Yes, I know perspective is important, life is always about perspective. I hear and say that a lot. Those words are like a skipping record in my head. But that record didn't seem to be playing down where I was. Down in this hole.

Now don’t be mistaken, I truly believe things have gotten better. If you look at the nooks and crannies of our life, yes, some things have improved. But so often with every step forward, there are three to ten steps back and we are right back on that familiar path of grabbing at straws on what to do next.

Will we ever be able to not have headphones within arm’s reach? Will we ever find headphones that actually work might be a better question…

Will Clara and daddy ever be able to sneeze without it putting you and your hypersensitive auditory system into complete sadness and distress?

Will I ever not hold my breath when we go to a public place? My heart races and I tense up at certain sounds and crowded situations now even if you’re not with me as if I don’t know any other way than to be on high alert for everything to fall apart at any second.

Will I ever not avoid certain situations like parks or birthday parties because the “what ifs” totally consume and exhaust me.

Will I ever not be worried about bullies?

What would one day be like without yelling or screaming?

Will a family walk ever be just that, rather than a battle of redirection?

Will I ever not feel sick to my stomach with anxiety about taking our family to the pool?

Will going to the beach ever not be stressful? I long for our family to just have a relaxing experience, no drama anywhere – all of us. We almost always end up settling with a certain amount of commotion or chaos and chalk it up to being "Our norm." "Our norm?" honestly it's exhausting most days.

Is this it? Because I wouldn’t call this comfortable right now.

I guess there’s a lot I still have to come to grips with all this, and if I’m being honest in a naïve way of thinking somewhere along the line, I think we hoped it would’ve gotten better by now, but it seems to only be getting harder and a bit more complicated.

This week wasn’t the greatest for you at school (or home), but I can’t say I didn’t see it coming. I think in some weird way I was ignoring some of the steps back I was seeing from our recent progress because I wasn’t ready to grasp at straws again.

There I was standing in the kitchen, wanting with every fiber of my being to say I could make this better and layout a plan of how to do so, but I couldn’t. I didn’t and don’t know how to do that exactly. You see Addie, I can preach until I’m blue in the face about patience and fluidity you need to have with this disorder and on this journey, but I so desperately want a manual most days. I want the black and white answer of how to create less stress for you how to give you a fulfilling life of calm and happiness. I want something that doesn’t really exist. None of this works that way. There is no manual because it’s not a black and white diagnosis.

The truth is Addie, I don’t have all the answers and there is no manual to fall back on, but there is something I am 100% sure of, you were meant to be ours, and us yours. All of us together. On the good days, the bad days, your silent days, and your loud days, together, one team one dream.

I fell down the rabbit hole this week Ad, but don’t worry I’m gonna dry my eyes and climb out.

We all fall at some point baby girl it’s part of being human, but remember the important part is getting back up.

I love you very much Ad.

Mom