Vulnerability

For two and a half weeks I’ve sat staring at the computer screen wondering why I’m allowing myself to be vulnerable. Being vulnerable is weird and uncomfortable and WHO WANTS TO BE THAT weird awkward person? Surely not me, but maybe, just maybe, by me being weird and awkward others might find it helpful when they are going through similar situations. I know when we were going through the thick of things with Sloane more often than not I wished to hear the words “I understand what you’re going through.” I know every situation is different but when you’re broken, you feel like you have to put on a happy face and smile when in reality you feel like you can barely function and want to scream from the rooftops. I have no idea how I’m not drinking myself to sleep or taking Vicodin to numb my fears of what tomorrow holds. I wish I could use emojis while writing, but that might make things more weird because I would insert the girl with her hand up over and over again saying that was ME, that was ME.

I know I’ve swept a lot of my feelings under the rug in order to “act normal” when inside I was grieving so many losses; I was grieving the loss of having a healthy child, grieving the loss of having a daughter that looked like me, grieving the loss of having “normal” maternity leave where I binged watched Mad Men like I did with Graham, while my only outing was going to Starbucks drive through for my Venti Soy Latte that had God only knows how many grams of sugar in it, but, since I wasn’t sleeping who cared about that! I grieved the loss of the ability to be a family of four all together and taking walks around the neighborhood. Instead, my reality was three months away from my husband and two year old while I lived in Philadelphia. My reality was watching my newborn struggle to get better hoping and praying that we could all be in the same state soon. I wanted to grieve my expectations - and I think it’s important for me to say expectations. I was disappointed in unmet expectations that I put on myself. Looking back I realize they were expectations but still you’re allowed to grieve what you thought you lost. I don’t think I ever processed and worked though those feelings which in turn created a vicious cycle of disappointment and hurt because I constantly allowed myself to hope the situation would inexplicably change back to what I expected and it never did so again I would be disappointed. I think if I started to process and recognize these emotions early on I wouldn’t have felt the constant disappointment when my expectations were not met by my reality. Instead I spun a vicious circle and allowed myself to get wrapped up in a “woe is me” mentality and didn’t allow myself to see the joy in the moments. I eventually did, but I wish I could have done it sooner.

While I was struggling internally, I smiled and said I was fine, we are fine, and Sloane is fine. I didn’t want to look different and call attention to how different we really were. At home, we had 24 hours of nursing because Sloane had a trach that needed to be suctioned, she had a feeding tube because she couldn’t swallow food safely, and had three therapies a week that came to the house on top of all the other appointments we had to take her to. I think because of what our daily life looked life I pushed those feelings under the rug and prayed and hoped for the best while ignoring our reality. When I finally allowed myself to acknowledge that THIS SUCKS and I began to process what we are going through, only then did the healing start.

All of us go through different heartaches, depression, mental illness, job losses, and so many life altering events but we don’t talk about it. Why? Why is there is a stigma against talking and being real? Maybe we feel like no one else is going through similar situations because our connection with others has become manicured versions of reality, carefully curated with the perfect filter. We feel like we are the only ones with imperfect lives and that sometimes makes us only feel worse. So to all the moms out there that are struggling because your toddler won’t eat, I see you. To all the medically complex moms that are so frustrated with finding solid home care, I see you. To all my girlfriends that are waiting for the perfect man, I see you. I know this might not help but it helped me. This is a season, sometimes long, sometimes short, but I told Graham THIS today on our way to school. If we aren’t comfortable being uncomfortable in our season of losing, our season of tantrums, our season of changing diapers, or whatever your trial is, then we won’t see the joy that is supposed to come from those HARD MOMENTS. So be vulnerable, be real, and recognize there is freedom in being who you are called to be.

If you have some time listen to one of my favs, Brene’ Brown and her TedTalk on the Power of Vulnerability it might just change your life :-)

PTSD

Parenting with PTSD. I think the easiest way to explain this is having that feeling like you’re constantly looking over your shoulder anticipating something bad is about to happen. So you’re never truly focused on what’s in front of you because you’re constantly turning, waiting, and anticipating those fears all while missing steps in front of you. Not focused behind and not focused in front.

Hopeful for a discharge soon.

I never even remotely considered that I might have PTSD until Jay’s cousin explained it to me last Thanksgiving. Almost four years ago I watched Sloane slip into two cardiac arrests after bringing her home from a three week hospital stay. The doctors let us go home because we promised to bring her back the next day to discuss a tracheostomy. We never made it to that appointment. We already spent Christmas and New Years in the hospital so we were thrilled to go home on January 1 with the reassurance from our doctors that we had what we needed at home to care for her. When we brought her home she was on heavy amounts of oxygen and looked pretty bad but we figured we just needed to make it work a few more days to figure out what course of action to take next. Little did we know her tiny body was so tired. She was tired of doctors and nurses trying to figure out what was wrong for three weeks to no avail. She was tired of trying to breath past the tumor in her airway that no one knew was there. While we were worried, we were so excited to be together with Graham. We had to split Christmas day between the hospital and my parents house and that was heartbreaking in itself. I remember slamming the door of my parents house trying to hold back tears of anger, I didn’t want to leave our two year old but I had to. Jay spent Christmas Eve with Sloane and I needed to relieve him so he could spend the day with Graham and get some rest. I was so ANGRY that I had to leave but I had no choice. I couldn’t give up on my daughter and husband. So to say we were happy to be home all together would be an understatement.

The one present I got to see Graham open on Christmas morning

As soon as the three of us got back to my parents house we set Sloane up on the floor with her oxygen tank and started the madness of opening gifts with everyone which is a HUGE event to our family. After unwrapping gifts, eating, and talking we all went to bed pretty exhausted. Jay and I were planning on taking turns sleeping in Sloane’s room to ensure she was breathing and was safe. Jay took the first shift and was catching up on highlights from the Buckeyes game when her alarm started to go crazy. He ran into Sloane’s room and picked her up: she was losing color, almost a grayish-blue, her skin was clammy, and her little body was lifeless. Her heart rate and oxygen numbers were dangerously low and dropping. He ran to get me and he quickly put her on the floor. I guess survival instinct kicked in and I immediately started CPR compressions while my mom prayed, Jay dialed 911, and my dad paced the hallway praying. As I counted 30 chest compressions along with two breaths there were thousands of thoughts flying. I was watching her numbers drop into the teens, wondering how God could let her die after everything we’ve already been through, that this moment could be the last that I spend with my daughter and this is NOT how I want to remember it. I remember staring into her eyes pleading with God to keep her brain whole if she did live. I remember all of these thoughts racing back and forth but yet I was still focused on what I had to do. With every compression Sloane just stared at me; our eyes were locked the entire time. I remember hearing my mom’s voice over Sloane, “You will not die, you will not die, and praying life over her lifeless body.” I know with every word that she declared it was an answer to prayer. To this day I have absolutely no idea how long this lasted because I’ve rarely talked about it or allowed myself to process the event. I don’t think I wanted to allow myself to remember because the pain and fear of losing her was too much for me to remember. I’ll save the rest of the story for later but watching your child slip away is something no parent should ever have to witness. It breaks you in half and brings you to your knees.

Christmas Day 2014 in the PICU

I know for myself, I avoided processing the trauma of administering CPR to my 4 month old for three years. It was easier to ignore these feelings rather than process them because of the hurt and fear. I think we can tend to do this in all aspects of our life. It’s easy to say tomorrow, I’ll do it tomorrow rather than do the hard stuff today. Whether that’s changing our diet, working out, communicating our feelings, or facing your fears head on. All it took for me was one person explaining that I experienced a trauma and “it’s ok not to be ok.” I replayed that conversation over and over and started to dissect how trauma was affecting my everyday life. I realized I was parenting Sloane totally different than I parent Graham. I was making my decisions out of heightened anxiety and fear of losing her again because I almost did. This goes back to my helicopter post. I had to acknowledge it was affecting me and the simple act of acknowledgment was what I needed to face this head on because I didn’t want my kids to be in therapy due to my heightened anxiety or fear of losing them. I wasn’t allowing joy to enter any situation because I was FREAKING out ALL THE TIME. Sometimes I still do but it’s a thousand times better. My therapist explained this so well the other day; when you experience a trauma your brain doesn’t allow you to let your guard down so you’re always on edge. So I decided I had no choice but to work through it.

Parenting little humans in general is already so hard, but throw on medical complications, illness, sickness, or anything else that causes trauma or stress it can potentially throw one into a realm of heightened awareness that probably isn’t good for anyone’s parenting ability. PTSD doesn’t allow us to feel the joy in the moments what we should be savoring. Instead it steals that and takes us down a path of “what ifs.” I know for me, what helped was acknowledging and processing the event itself and the feelings connected to the event and realizing it’s ok to ask for help. Therapy has helped, listening to podcasts has helped, and prayer has helped. I think with a combination of everything it allowed me to start the process of walking towards a new journey of hope without the burdens or anxieties of the what if’s that tend to weigh us down when all we’ve focused on is the trauma. It’s ok to not be ok because when you recognize that, that’t the first step in moving forward.

Waiting to go home