Just Brave Enough

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 bes...

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 am...

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,...

No one gets to tell you that you’re fine. You’ve fought hard. You’ve overcome a lot. No one gets to dismiss that for you. You’re not fine. You're not fine because you're struggling and that's okay. Every day is hard and there is some kind of battle to face. It's okay to not be okay. If you want to not be a fighter today, that's your choice. Don't let anyone tell you otherwise. Cry, scream, vent, carry on. Do what you have to do to get through the day. Find someone that allows you to do that. You need it. You can always try again tomorrow. You do not have to put on a fake smile and pretend everything is perfect. You know why? Because it's not. It's not perfect because life isn't fair. Are there ways that you am more fortunate than others? Of course, that's the case with anyone. There are also some things that just aren't right. You will have to fight harder or never get them at all and that  is what you get to be angry about. Am I lucky to...

I have heard a lot of things similar to “Be grateful that he’s not mobile yet. You’re in for it then!” or “You think you’re tired now? Wait until he’s running around! You’ll want to turn back time!” You know what? After all this past (almost) year has held, I will chase him up mountains if I have to. I will figure out how to swim across across oceans so that he can investigate the fish closer. If he wants to fly across the sky, I will build him a plane.  Watching him learn and grow and start to explore, I see the look in his eyes. I watch his pupils grow and the glimmer that comes across them. I can see the wonder and the hope build, but then it turns to frustration. The glimmer fades and it turns to tears because his mind wants to goes, but he physically can’t. My heart shatters, but I don’t cry. I do what I can to reach to help him reach his goals and make a huge deal over what others would see as nothing at all. After all, I’m his mother and that’s my job. Mommy makes the h...

*The following may be sensitive material to anyone who has had their own NICU experience. Read at your own discretion.* While it's an amazing feeling to have a NICU graduate, the experience is not over once those glass doors close behind you for the last time. I honestly thought that I would feel total relief and comfort when I scooped up my son, buckled him in his car seat, and headed home, but that wasn't the case. Aside from what I would describe as "new parent anxiety" after bringing an infant home for the first time, I felt something more. I was panicked and scared to live a life where my baby wasn't hooked up to machines and monitors and without nurses on call, but when it was quiet, I suffered. I still struggle every single day. It started the day we had brought Flynn home from the hospital. Shortly after we arrived home, it was time for him to eat. I prepped the bottle, but he wouldn't take it no matter how warm it was or how we held him. I called t...

My son is the light of my life. I love opening my eyes to his smile every morning and rocking him to sleep at night. He is so pure and innocent, yet so strong. As a new mom, he has taught me every single thing that I know. He reassures me and comforts me. He makes me feel each day that I have done something right, but I wish that I could shelter him from every bad thing that he will come to know. Over time, I have learned that even babies aren't safe from labels. Luckily, Flynn is too little to realize this right now and I can protect him in every way that I can. Being born prematurely is absolutely nothing to be ashamed of, especially because these babies defy all odds to simply survive. I have been surprised, though, by how some people can be so insensitive and unaccommodating. Flynn and I love to go out and about. He gets excited to see new places and people and be with his friends, even if it means going to the doctor's office (again). On days where we are stuck inside,...

If I had to describe my life in one word it would be privileged . Not in the sense where I was born holding a silver spoon or that I didn't have to work for how far I've come, but I have been very blessed with all that I have gotten. I would even go as far to say that some things have come easily and that my path in life was seemingly paved. Regardless of how things fall into place for someone, I think that it's safe to say that everyone has a life plan, with both long-term and short-term goals. In my case, it appeared as though my map was drawn in permanent marker instead of pencil. At least it was, until someone took a giant magic eraser and sent me into a tailspin and wreaked total havoc on my Pinterest boards. I had my wedding planned at five years old. In 1997, we unfortunately lost the beautiful Princess Diana. I was a bit too young to completely understand, but what I did see was footage from her wedding to Prince Charles play over and over again on my television d...

In the days that followed Flynn's birthday, I was overjoyed that I finally had the family I'd always wanted. The baby that I hoped and wished I would be blessed with was here and though he was early and we were unsure of what the future would bring, he was ours and we were so lucky to have him. Though I was once again home without my baby after my second hospital stay, I was extremely lucky to be alive and well enough to hold him again even though that meant traveling back and forth to see him. The time spent apart from my baby were the longest hours of my life. I was constantly calling and thinking about him. I sat there for as long as I physically could and whenever I could get a ride back and forth. In spite of the separation and exhaustion, I was happy. I thought it would be that simple: we had our son and I was happy. I was wrong. I wasn't prepared for the never-ending guilt that I would experience. It started in the days before Flynn was born and I still have i...

My hospital stay ended up being eight days - two before having the baby and the six after. I didn't necessarily want to go home and leave my baby, but I did miss my bed. I wasn't really able to eat much because, even though I was on a regular diet, I had to keep my blood pressure under control. If my levels went too high, I wasn't able to see the baby because it put too much stress on my body.  Though I didn't have any symptoms throughout my pregnancy, I was diagnosed with very severe preeclampsia. The medical definition is high blood pressure, often with high protein levels and fluid retention. If it’s not treated, the organs will begin to fail and both the mother and baby are put in danger. Because my case got so severe, so quickly, Flynn had to be delivered as soon as possible. There are situations where the blood pressure can be kept down with medication and the baby can be brought to term, but mine was not one of them. I learned that when you deliver a bab...

As a the mom of a preemie, there are a lot of things that you "lose." The first of which is getting to tell your birth story because not only do you most likely not want to relive it over and over, people generally don't ask either. I'm not sure what is worse, the feeling of guilt because you don't want to talk about your own baby's birth or the fact that no one wants to hear it. Well, I'm ready to tell mine: For some reason, the second I found out that I was pregnant, I feared that I was going to have to take the twenty-eight week glucose test and that I was going to develop gestational diabetes. Why? I honestly don't know. In my head, however, this was the worst thing that could happen and it was going to happen to me. For about twenty-two weeks, I lived with this fear and expressed it to many people who probably  thought that I was insane. My glucose test was scheduled months in advance for the day after Valentine's Day. Yes, the girl whose ...