Part 2

Forgive me in delaying Sloane’s story. I’ve realized so much of this is still so raw along with the fear and anxiety because of what we walked through with her and continue to walk through. Let me be VERY clear we are the lucky ones because there are many others that aren’t here to write a story as beautiful as ours. I tell the story because it’s painful, raw, full of fear, full of emotions, and in truth it’s real life. As I’ve gotten older I’ve realized everyone has a story worth hearing, but many of us don’t bother in finding out. Instead we are so wrapped up in our own lives we don’t even notice the person next to us who is struggling with addiction, who’s child is sick, or their spouse lost a job that they desperately needed. Instead we focus on our own problems never seeking out how to help a friend in need. I’ve also learned that sometime lending an ear, hand, or shoulder, makes our very own pain or struggle seem so much less painful. Why is that, maybe because we allow the focus not to be on us for once. Through Sloane’s story I’m pulling back the VERY layers that left me crippled in fear for years. Without facing them, walking through it, or understanding that purpose comes through our pain I wouldn’t be writing these words. So without further ado and I do hope I am much better this month in continuing our medically complex journey but if life gets in the way and I find myself enjoying the moments I’m going to do that to. Enjoy the moments because life is fleeting and when I’m hopefully old and grey I can look back and remember all the smiles, despite the anxiety, remember the laughter that filled my house despite the worry of the next scan, and say I pushed past all of that and I enjoyed the everyday moments that make up a lifetime of memories.

Waking up the day after our initial scan was a blur. I remember thinking everything that happened the pervious day was a terrible nightmare. A nightmare that I realized I couldn’t escape. Looking back it was like living in someone else’s reality. As much as I wanted to stay in bed and process what happened, life keeps moving. Graham needed to get to school, we both had work because we had bills to pay, and we had NO idea what was next so we needed to work while we could. I was working from home a little bit by that point and knew going into an office wasn’t going to work in fear of having an emotional breakdown while on a conference call. I also couldn’t be alone in my house with my thoughts, so I went to my parents. They lived 10 minutes away at the time and I knew I needed to be with someone.

So I packed Graham up for school, my work bag, and headed over to my parents to work. I seriously worked like nothing was happening, in between calls/meetings I would sob to my parents trying to understand what was happening. I think we were all in shock. We left the doctors office without knowing much. Of course we started googling and we honestly didn’t know what we wanted her diagnose to be. At first I was hopeful it was just a mis-diagnosis but as I started to replay the words and search on the internet what it could possible be - we were still at a loss. We knew we were waiting to hear from the MFM doctor when my MRI would be in hopes that it would tell us more. We also went in to to see my doctor and started to talk through what this could be.

There were sooo many conversations that led up to us leaving Charlotte but the jist of it was - no doctor in Charlotte knew what they were dealing with. After looking at the scans, my doctors said we would try and do a c-section and meet with a brain surgeon here. He made one comment that stuck with us and probably helped direct our path. In the midst of our googling, we found children hospitals all over, Philly, Cincinnati, Boston, and Duke. He said don’t bother with the small ones if you’re going to leave - you either “GO BIG OR GO HOME”. That was it. As much as we wanted to stay in Charlotte to be close to our home, we left it up to God to decide our path and this is what’s crazy. He confirmed everything that we were thinking in one phone call. In between the googling, trying to decide what to do next, scheduling a c-section in Charlotte, meeting with a brain surgeon here in hopes they knew what they were doing. We started to read about Exit Procedures, we mentioned it to my doctor and he never heard of it. There were 3-4 hospitals that did this and it was known to save the unborn’s baby’s lives. I won’t go into the details but here’s a link about the procedure. https://www.chop.edu/treatments/ex-utero-intrapartum-treatment-exit-procedure

In between all the talks with my doctor, our parents, and now waiting on the MRI results we decided that if we needed to go elsewhere we would. As terrible as it would be to leave Graham we felt we needed to give Sloane every opportunity to survive. That was the first part. I had my MRI on a Monday and on Tuesday morning at 8 am the MFM doctor called me with an update. I can’t remember if she confirmed the mass on Sloane’s head was a teratoma but she said I’m sending your scans to the Children’s Hospital of Philadelphia to see if they can help because no one in Charlotte has dealt successfully with what we are seeing. I hung up the phone and figured ok, let’s see what happens. I’m not joking, at 8:17 am (17 minutes later) the Fetal Center for Medicine from Philadelphia called my cell phone and said “We just received your scans and you need to get on a plane to Philly today, we can help”. First I was in shock I received a call so fast, second I wasn’t in the mindset to leave so I pushed back and asked for a later appointment saying we have a two year old who needs to be taken care of and the women on the other end was insistent……She said you are in risk of going into labor and if you go into labor your child won’t survive. I hung up the phone, called Jay and told him we had to go, called my mom and told her what happened and while we were on the phone she booked us two flights to Philly that afternoon. We coordinated everything we could in the shortest amount of time and headed to the airport around 3 pm. All we knew was that we had 8 hours of appointments the next day. In between the crying, packing a bag for three days, calling my boss, saying goodbye to Graham and the worry I think I was going through the motions. I just kept praying for whatever was on her head to be gone by the time we showed up. That whatever it was it would be ok. I literally ran to the doctors to get a note that I could fly and he asked me, why were we leaving since it was such a drastic change from trying to make it work in Charlotte. I said at this point when CHOP gave us hope, we had no choice but to hear them out. We owed it to Sloane, to our future family, and to our sanity to at least go somewhere that could tell us something more than, “we will try”. I had no idea when I boarded that plane I wouldn’t return to Charlotte for almost three months.

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 :-)

How do you see?

I see a beautiful curly hair superhero that has had to fight from the beginning. I see a spirit of tenacity that pushes through any no that is said her way. I see a joy that is uncontainable. I see scars that each tell a beautiful story of healing. Some see my version, others ask questions before seeing this, some stare and never see what I see, and some are just plain mean and never care to learn anymore. This is probably one of the hardest aspects of Sloane diagnosis for me to fight through; looking different. Of course it’s only physical and so many people have said, “oh who cares, she’s healthy, or its doesn’t matter what you look like”. Yes of course I know all of that, but I also know society tends to judges first and asks questions second. As her mother I want to protect her from the ones that don’t even allow her words to be heard and write her off solely by how she looks. When I see this happen it maddens me that we can continue to live in a world that is so consumed with outward appearances vs the characteristics that define us. I am guilty of it. Of course I care what I look like, I may not be a fashion blogger, but I can get caught up in what society sees and work harder on out my outward appearance rather than my heart. I want and need to be better especially since I’ve seen a whole new aspect of this in our own lives.

If you haven’t seen the movie Wonder, you have to see it! It’s such a wonderful reflection of our lives and embracing looking different. Quick summary: the older sister is extremely overprotective of Augie who is the little boy with Treacher Collins syndrome. The dad is the rock and the mom is the heart of family and stands firm in advocating for her son while he encounters new challenges in middle school. While Sloane does not have the same genetic disorder that Augie had she has a physical disability. She is missing cranial nerve #7 so only half of her face works. It’s similar to Bell’s palsy. She has half a smile, her right eye is slower to blink than her left, and the tumor destroyed all of her neck muscles. This is just what you can outwardly see. Thank God it’s only that, but I was bullied in middle school and I didn’t have any scars, disabilities, or anything that could be seen besides being extremely pale. I remember feeling so terrible about myself by what was said and it was non-stop. I’m sure most of us were bullied in some capacity but we all know how cruel the world can be based on how we look and now with social media kids see and hear it all the time even in the safety net of their own home they still hear the echoes of unkind words.  I wish it was different. I do think it is getting better but I want it faster and on a greater impact where kids aren’t committing suicide because of being bullied. I want kindness shown on greater levels because we all have our own imperfections and my job is to protect my kids but also build them up to overcome these challenges when they do happen. Maybe this will be the platform to start small within our own community, who knows, but I want change faster for our children’s sake because at the age of four Sloane already sees the stares and hears the questions; what’s wrong with her, why does she have “crazy eyes”. Why does she have to wear eye patches, and now the hearing aid. It breaks my heart BUT as Sloane’s mother I have to teach her that confidence comes from the inside, from being brave, and from being kind. We want her to be confident and to realize looks come and go but your integrity, kindness, and love for others is what will define you. We work on this with our daily affirmations, communicating our feelings if we are sad or happy, and little things such as wearing a cape and mask that make her feel confident. It’s a constant juggle act to ensure confident children who aren’t entitled and who show kindness in a world that needs it. I mean I find myself tired just thinking about it but it’s our job as parents to ensure we send them off into the world well equipped.

This past spring we encountered something I knew was coming but not in the way I ever pictured it in my head, isn’t that always the case? Graham started in a new baseball league surrounded by kids that never met him, Sloane, or knew anything about our family. We aren’t recluses, but we do typically hang out with the same people, family, and see the same kids from both of their schools so a whole new group of kids came with lots of questions and stares. During the beginning of the season Sloane couldn’t contain her excitement for cheering Graham on. She would run up to the dug out and try to get his attention while cheering him on. It was so sweet watching her while Graham was trying to play cool and focus on the game until out of nowhere two little boys started yelling at Graham “what’s wrong with your sister, what’s wrong with her crazy eyes, she looks so weird, what’s wrong with her!!” Graham’s focused obviously changed and just looked at the boys and didn’t say one word. I think he was in shock. I was in shock. Look, as a parent navigating this new unknown I’ve learned to welcome questions and I know kids are curious! I mean I’m curious when I see something unfamiliar, but never have I ever started yelling things like that. Thankfully, Sloane didn’t care one bit and put on her super hero mask and walked away but Graham cared. I saw it in his eyes. I think in that moment he realized he was part of a story that he wasn’t sure he wanted to be apart of. So instead of speaking out, he sat silently trying to understand what this meant for him. I was left holding back my own tears while watching him process his feelings trying to decide if I should jump over the fence and fix it. Instead I knew that wouldn’t fix it and it wasn’t the place to do so, instead I just watched and let him start processing.

I didn’t address anything at the baseball field. I knew it wasn’t the time or place. I knew I would talk with Jay and had therapy the next day so I could specifically ask how in the world do you navigate these emotions with kids since I can barely navigate them myself. My therapist is amazing and said you need to validate their feelings because that’s what we all want and tell them it’s ok to feel like this. Then you give them the tools to address it so they can build the confidence to talk about. So I prepared myself for whatever was going to happen next and realized this was just part of our journey.

I knew going into this conversation I couldn’t make it a big deal. I tend to jump from 0-100 so I had to keep calm and just have a normal conversation without allowing my own emotions to get in the way. Graham and I typically have our heart to hearts right before bed so I knew that would be the perfect time. I asked him casually why he didn’t stick up for Sloane yesterday at his game when all the kids were making fun of her. He was silent for a few second and out came words that I wasn’t expecting from a six year old.  “Sloane was born with a brain tumor and it’s creepy, what if my friends think I have a brain tumor because I’m her brother and then they think I’m weird and creepy like her.” With those words I knew all he wanted was acceptance because he’s six and isn’t that what we all want? Instantly I felt shocked and saddened for Sloane but in the same moment felt an abundance of love for my first child who made me a mom. I knew his pain. I remember feeling the shame of having a child with a tumor. The shame of feeling like it was my fault, feeling that I was different now because my path wasn’t the same as others. I understood every ounce of his pain and I told him that. I said “oh buddy I know exactly how you feel, I felt the same way when I learned about her tumor and it’s ok to feel like that, but we can’t let it be how we see her because she isn’t creepy or weird” and then we had a back and forth conversation about Sloane. I said we know she looks a little different but isn’t she the funniest girl? He responded yes. Isn’t she super smart? He responded yes. Isn’t she a miracle? He responded yes again. Isn’t she doing everything the doctors said she wouldn’t do? Yes again. See, she’s just like us but looks a little different, right?  Yes! With each yes he became more confident. Then we talked about how it’s ok if he’s not ready to stick up for her because I knew one day he would be ready. I ended it by saying that we NEVER want Sloane to feel bad about looking different because it’s not about what’s on the outside that define us. We all have different color eyes, hair, skin tones, some have big noses, some have little noses but it’s not what’s on the outside because that not how God sees us. He sees us for what’s in our hearts so we need to build her up where she feels safest and that’s our house. We finished our talk and I walked into my room and felt defeated. Defeated because his thoughts were my thoughts at one point and my six year old was feeling emotions that I wasn’t prepared to address for myself, let alone guide a six year old through. I would rather protect him from feeling different because of Sloane but I’m starting to realize this is part of HIS story too. This story will make him become who he is meant to be. We have to encourage those feelings to be discussed and it’s ok to be sad or upset when it’s not the way you expected it but without processing and talking through it how can we ever get to the other side?

A few days later Graham was back at the baseball field and another little boy came up to Graham and myself and asked in a much kinder way this time what was wrong with Sloane. As I started to answer, Graham jumped in and goes on a five minute monologue starting from the VERY beginning. He tells the whole story of Sloane being born with a brain tumor with bits of, she’s a miracle and she does everything the doctors said she wouldn’t and she’s just like us!! After he stopped the little boy just looked up at me and said, so she was born like that? Graham with proud eyes and confident as ever knowing he just overcame his fear responded yes! Poor thing, he probably could have just said that she was born like that, but what I witnessed was him starting to become comfortable enough to talk about his sister looking different. I held back my tears and told him how proud I was of him. Watching him in that moment I realized he is learning empathy that I wish more of us knew. I know at points he still struggles with her “difference.” Just the other day he asked if “she had to get a hearing aid”. Why couldn’t we just pray for her so she didn’t have to be different anymore. I had the same conversation with him again and encouraged the prayer but also told him it’s what is needed and it’s ok to be look different. We all look different and that’s how we were created. Why I was chosen to walk this path, I have no idea because I have to fight the fears and it’s a constant battle of my mind and heart but one that I’m learning to embrace. If you haven’t seen the movie Wonder I promise you’ll laugh and cry and it’s such an incredible story of showing kindness and overcoming adversity in a world that is different. I think as human beings we need to show kindness more. This summer I read the most amazing book, Everybody Always. It’s about showing love and kindness in the simplest ways. How showing love can change someone. This book opened my eyes to so many everyday opportunities that are in front of us and we walk past them because we’re too busy or those people creep us out, or maybe they don’t think the same way I think. You know what I say. Who cares! Be kind, smile at them, and show kindness because everyone is fighting a battle; you just don’t know what it is. Here’s a wonderful link to books on kindness by another blogger. I think I’ve bought almost all of them for Christmas presents because of the messages in them. http://happyyouhappyfamily.com/books-about-kindness/

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