What you don’t see. 

Sometimes I wish the minutes in the day weren’t so calculated. I’m tired. We’re tired. We max out our schedule at all times, but we have to. 

Alyssa is seen by her therapists and teachers seven times per week. Seven. And that is JUST therapy and lessons, that doesn’t include her PCP or her specialists, blood work, or anything in between. My phone rings nonstop, follow up information, making new appointments, rescheduling appointments, nursing lines calling back to answer my questions, coordinating medication and supplies deliveries. Add traveling for speciality care since our city is slowing progressing in the healthcare field. 

Her feeding schedule, set in stone, 10a.m, 2p.m, 7p.m, 11:30p.m. Water flush every hour in between feeds, medication at 7p.m before her feeding starts. Diaper changes every 2 hours so she doesn’t develop any rashes. Putting her in the stander several times a day for an hour each. Everything is scheduled. 24/7. You can barely leave her alone for 5 seconds, you won’t find a play pen in our house that she can sit in and entertain herself. We also try to take Alyssa out to fun events so she doesn’t correlate the car with appointments/ the hospital. 

In between that we are pushed to work, Mark works full time in a stressful environment and I work part time from home. I don’t know how to fit anymore hours into a day, minutes even. When nursing falls through I can barely work at all since every minute is dedicated to teaching, feeding, flushing, changing, carrying, watching, appointments, and everything else on our list. 

Keeping the house clean is beyond me some days, and showering? I’ll get to that at 10p.m when I put her down, that gives me 15 minutes before she starts crying and I just put her in our bed. It’s easier. I can check her tubing and pump, air out her ostomy, and just look at her every hour from the comfort of our bed. There is no real break. 

When people say “you wouldn’t even know something was wrong with her” I just laugh. It’s because we kill ourselves to get her the care and attention she needs to remain clean, healthy, active, and involved. So much goes into our routine. 

I know I rush around, I’m constantly shouting out new dates for appointments or deliveries, what needs to be done, where we need to go. I honestly annoy myself. But I’m trying, and I’m definitely still learning. We are learning as a family, and while some lessons are more difficult than others, it’s our journey together, as cupcakes family. 

Alyssa enjoying some Christmas lights with her daddy. 


What I Love Most 

I love in an extremely reserved manner. Extremely reserved. I don’t truly open up to a lot of people, like most of my peers, due to years worth of lessons. 

But, what I love most is that Alyssa, who has gone through the toughest of times, loves so powerfully and unconditionally. She has no boundaries. When we wake up next together she gives me a dozen hugs and kisses before we even make it out of the bed. And throughout the day, she gives me hundreds more. She loves to love. 

Because of her oral aversion, dentist visits are very difficult and although she may be screaming crying she’ll sit up, laugh, bust a traditional cupcake dance move, give you a thumbs up, and laugh it off. I wish I had her mentality and her strength. A heart so big she won’t ever be jaded, because her happiness permeates a room almost instantly. 

One day at therapy two little kids hugged infront of her and she got so excited that she reached right up to hug me. She gives kisses all day, she even scratches your back if you lean forward in front of her, which is quite possibly the most adorable thing I’ve ever seen. She rubs her daddy’s head if he lays down by her lap. Her heart is so full, she just wants everyone to be happy and approving,  and it’s so refreshing. 

While this life can have its challenges, it’s balanced out by the little things. When it comes to cupcake, unconditional love is a lifestyle, and I’m so happy I was chosen to fit into her arms for a lifetime worth of hugs and kisses.