Sometimes I look at my life like I'm a stranger, observing. As if my mind floats above my head and into the room's air watching what transpires. My body, vacated of my mind, sits still seeing what occurs but without reaction. My most recent example of this was at Elliott's cardiology check in a few weeks ago. The doctor comes in after Elliott's X-ray and we begin small talk. We chat about the headlines made over VIP hospital staff that recently departed and the even more VIP replacement staff coming on board. I remember being overcome by nausea while chuckling at a particularly funny comment. It was as if I had forgotten where I was and my subconscious quickly reminded me with a chemical reaction only Pepto-Bismol could cure. It was then, that my mind floated to the ceiling to perch on a hanging fluorescent light; watching the rest of the scene, like a movie.    

The doctor says we are still on about the same timeline for Elliott's heart surgery (yes, despite my prayers to God asking for a miracle - heart surgery is still necessary) and he wants to see us back in 5 months for an echo-cardiogram and EKG. Armed with the results from those tests, we will begin discussing surgery dates. I stare blankly and nod, robotically, as he continues speaking about valves, chambers, blood velocity and lung pressures. I hear and understand what he is saying - but remain blank. My mind, up above, taking it all in and giving me no guidance on how to react. Brad asks questions, I ask questions, and the doctor leaves. My mind rejoins my skull. I take a big breath in and realize that this is my life. It's not a movie I'm watching, it's a movie where I play a starring role. I didn't audition, I was cast off the street.   

We walk to the check out desk and I start counting on my fingers 5 months from now. Made an appointment for December and then begin counting out several months after that to make an educated guess on when Elliott's heart surgery may occur. She will be around 2.5 years old. 

As we head towards the car, I force myself to play pretend. To forget that my child will have heart surgery and just think about the traffic instead. Think about what we should eat for dinner, or what I will wear to work the next day. It's so much easier to push this dark cloud out of my mind and play make believe until the day comes when I can't pretend anymore. This is how I get through the days. Pretend this movie I'm in, is a movie I'm watching. This is my fabricated easy button. 

Elliott has 6 therapies a week. Six. 2 speech, 2 occupational and 2 physical. Her schedule is no joke. It is busy and it is difficult. She rarely gets time to just be a baby and play casually. Every milestone is effort. Everything is with purpose for development and learning. Everything is hard. 

I watch Elliott cry during her therapies. Mostly during physical therapy as it is the most challenging and unforgiving - for her and for me. She fights her therapist and uses all of her strength to not crawl. I sit, watching her cry, able to do nothing as what is transpiring is actually good for her and her therapists love her tremendously as they work diligently towards her success. I wish I could explain to a 21 month old the benefits of her crawling. I imagine saying "Ellie girl, you will love crawling. You can explore the whole house and get whatever toy you want whenever you want it!" She would reply "Ohhh, I see, that is why you are pushing me so hard. So that I can learn how to crawl and explore for myself. This isn't punishment, this is for my own benefit! Thanks Mama." 

Of course I can't say this to her, there is no reasoning with a 21 month old. Really, there is no reasoning with a kid for many years. Early on, I could not participate in her therapies. Sitting idly by as her tear producing eyes stared into mine begging for relief. Relief that I could not give. I would leave the room, pretend to be working and hide my own tear producing eyes from being seen. 

I wonder what other parent's milestone experiences are like. Their baby probably saw a toy he/she wanted across the room, and at that very moment decided to go get it using their hands and knees as a vehicle. The instinct, followed by the action, came naturally and quickly to that baby. One of the common characteristics of Down syndrome is hypotonia, having low tone in one's muscles. It means that Elliott has to work her muscles harder and with more repetitions for everything she has to learn, and WILL learn. Sitting up, scooting, crawling, standing, pulling up, walking, talking - everything - all harder for her than for someone with 46 chromosomes. 

I often remember how easy life was about 5 years ago. No real responsibility. Sure, I needed to go to work and do my job. Sure, I needed to maintain socially acceptable levels of hygiene. Sure, I needed to clean my home sporadically. But no real responsibility. No real, hardness.

Today, I look for any possible way to simplify my life. To make all the responsibility more manageable. Even small things such as moving objects closer to where they will be used and making duplicate sets of items we use regularly. This all may seem like minor organization tactics but it's done with the sole purpose of helping me survive. Helping me make certain Elliott gets all that she needs and more during these critical development years and making sure I don't lose my sanity, or ability to be a good mom to her. I've certainly come close to losing both of these at some point or another so all these tactics I enlist are necessary. One of my strongest go-to's has been a mantra I say to myself multiple times a day:

It won't always be this hard.

It just won't. One day, when I least expect it, I won't feel like I'm treading water. 

I am so grateful for this little girl despite my wish for an easy button. Day by day she breaks away a piece of my heart and replaces it with a better piece. A piece more worthy of being there. She is working to teach me things I've never quite grasped before; patience being at the forefront of her lessons. Waiting patiently for accomplishments and then celebrating them exuberantly when they arrive. Waiting patiently for an eventual surgery that the very thought of destroys me every day, over and over again, but also makes me vigorously pray and hope for the best outcome possible. 

People will tell me "I don't know how you guys do it." They are baffled by how we keep up with everything that Elliott deserves. Frankly, I'm baffled too. Most days, I swipe the "clean" laundry off my bed and onto the floor as my face, covered in 2 day old make up, smashes into the pillow; having no idea how we accomplished all that we did in the past 12 hours. Perhaps the fact that I no longer wash my face or clothes has something to do with it? There is no magic potion, there is no easy button - we just do what we have to do. But doesn't everyone? Don't you all do whatever needs to be done to ensure your kids/family/friends/neighbors/the people you love are taken care of? Yes. Yes, you do. As you should. 

Some people deal with varying degrees of responsibility throughout their life and ours just happens to be high right now. I dream of the day when it won't be this hard and I know that day will come. After Elliott's recovered from heart surgery, when her trach comes out, when she is walking, and talking, and eating solely via her mouth. When I walk into her classroom to pick her up after school, she catches a glimpse of me, runs towards me from across the room and says "Mama, guess what I learned today?!" I will hug her harder than I've hugged her before, and say "What did you learn, baby? I want to hear all about it!" as I let her see my {joyful} tear producing eyes above my beaming smile. I will know, with certainty, all that we did for her before this moment and all that we will do for her after it, was and is worth it. Hard or not. 

I long for an easy button. I want to eat ice cream every day, not work out and be a size 4. Ok fine, 8 - I'd be totally cool (scratch that - I'd be ecstatic) with a consistent 8. I can't half ass my job and expect a promotion. I can't ignore Brad and have a fulfilling marriage. I want to put in minimal effort and have maximum return but as we all know by now, that's not how life works. There is no easy button.

But there is another button. 

It's the "I worked hard and will now celebrate my accomplishments exuberantly" button. {Too much text for a button? K, I'll work on that.}  

The constant working hard may seem like such a negative aspect of raising Elliott but, to the contrary, it's a huge positive. Everything she does is a celebration. EVERYTHING. It didn't happen overnight for her, she had to work at it and work hard. She put in effort and pushed herself until she got it. We celebrate all that she accomplishes because just as it's harder for her to do something, it makes everything she does that much more amazing.  

One extra chromosome means extra effort may be required and extra joy will certainly result. 

Until the nexT21,

Aubrey