Skip to main content

Posts

The One With the Stages

I wish that, at this point, I was excited to plan Flynn’s second birthday party. I wish that I was buried in choices for theme, menu, and party favors. After all, that is my realm. In our world - the world of having a child with special needs, however, a child ages out of early intervention at three. Turning two is the starting line for preparation to enter the school district, timelines, countless life-altering decisions, and paperwork. I am dreading two for everything aside from the typical reasons. I am ready to embrace the "terrible" twos, but I need to catch my breath before venturing into this unplanned, isolating, seemingly uncharted territory.

Before becoming Flynn's mom, I thought I had prepared myself in every way that I could aside from caring for an actual child. I read all of the books, articles, and blogs, joined groups, and took classes. Does that actually make you a better parent? I don't believe so. I'm not even sure that it really prepares you. …
Recent posts

The One With the Wrap-Up

It is often asked "How many weeks was he?" or "How much did he weigh?" when the topic of my son being premature arises. These answers have become routine, the words flow out of my mouth before my brain can even formulate a sentence; it's almost a reflex. The truth is, however, having a preemie and enduring a NICU stay is anything but routine. That is why we need NICU Awareness Month.

I've seen what a two-pound baby looks like. I've seen translucent skin, tinted blue, peering out beneath tangled wires and tubes. I've seen a life stop breathing and a chest rise and fall with the help of a machine. I've seen eyes fused shut. I've seen hands the size of my fingertips, a head that fits in my palm, and a bottom that sits on three of my fingers. I've seen countless needles and heel pricks. I've seen an unbelievably small body under bright lights. I've seen an incubator shrouded with medical professionals day after day, planning the best…

The One With NICU Awareness Month

As a parent, I’m different. Whether I want to be or not, it’s true.

Being at a hospital or doctor’s office makes me queasy, which is unfortunate because I spend a lot of time there nowadays. The stark whiteness and fluorescent lights, the clinking of metal tools and equipment, the vast spaces and uncomfortable quiet, and the unsettling feeling of receiving bad news.  The hospital is where I found out that my whole world was going to be turned upside down and then saw things that I wish I could unsee, but are burned into my brain. Doctor’s offices became an extension of those memories and a reminder of the journey behind us and all of the struggles we had the potential to face.

I can’t use hand sanitizer because the smell takes me back to a place that I don’t want to revisit. I can hear the sound of the dispenser in my head - the automatic whirring of the machine on the wall as the motion sensor recognized my hands beneath it - a noise that became all too familiar to me. The extra prec…

The One With the Breakdown

The other day, I lost my patience. I shouldn't have and I'm not proud of it. There really is no excuse for it, but I reached my breaking point and it all came pouring out in the form of a scream, throwing a plate full of food in the sink and a puddle of tears. I've been beating myself up about it ever since it happened.

As a mom, there is a lot of pressure to do everything and to do it well without losing the smile on your face. As the mother of a little one who has even greater needs, that pressure intensifies because the more that a child requires, the bigger the smile must be, the bar for perfection raises, and the patience that goes along with it increases. We are constantly walking on a very thin tightrope. At the end of the day, our babies are doing their very best (even on bad days) and they need our love and support always, but getting to the end of the day as happy beings can sometimes take more work.

My son is a happy, energetic, spunky, funny, playful, and amazi…

The One With The Questioning

There’s something that I want to talk about. It’s something that is constantly on my mind, but has been affecting me more recently than in the past few months. Some days, it’s crippling but I carry on because, well, what else is there to do besides live the day to day? I’m a parent who is depended on.

I know that I am trying my absolute best, but I don’t feel like I’m a good mother. 

This has nothing to do with a lack of love in my heart. I love my son more than words can describe. I would do anything for him, regardless of my own well-being. I cherish every snuggle, sloppy kiss, and sweet giggle and I breathe through the tantrums and tough moments knowing that they’ll pass. I understand him, even though he can’t speak, and I think he knows that mama is his home. While I know all of these things to be true, my doubts of my capabilities as a mom don’t falter.

For the past six months, Flynn has been receiving early intervention services. We started him out with just physical therapy to a…

The One With The Good News

Today, I went to the doctor, which is unfortunately not an uncommon occurrence for me (or my son, for that matter). I had yet another follow-up with my neurosurgeon, who had always managed to crush all of my hopes and dreams with more bad news, more prescriptions, and more appointments.

Today, I walked in the office, sat in the lobby, and patiently waited for my name to be called. This week, it’s been a year since my ICU stay. I’ve “successfully” reached 365 self-injected blood thinners to the stomach, consecutive countless pills taken morning and before bed, and days full of headaches with no end in sight. I’m officially one year post-stroke and I’ve carried a hematoma and several blood clots with me every step of the way.

Today, my name was called and I walked back into the same room that I’ve entered what feels like a million times before. The same exam room where I’ve viewed hopeless brain scans showing worse results or no improvement from the one before. Even with memory loss, I …

The One With The Fear

We are coming up on Flynn's first birthday. Unlike some parents, I am not sad that he's getting older. I'm actually excited for him to be growing and learning and turning one, even though time has flown by. What I am anxious about is recalling the events of one year ago. I am afraid to relive the day my baby was born.

I’m sure I’m not alone in saying this. I’m positive that there are other mothers out there that experience this feeling, namely parents of babies that were born prematurely or under traumatic circumstances. I see the dates pass by and, in my head, I’m recreating what exactly went wrong and how. It’s like watching a horrific accident unfold, but I can’t stop it. I know that I can’t be the only one, yet I feel so isolated. Who wishes that they could just forget something that should have been so magical?

The day that my child was born was not the happiest day of my life, it was the scariest and most traumatizing. It’s a day that I try not to think about and hav…