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.

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/

The beginning

July 16th, 2014 was the day that my heart shattered in a million pieces.  The feelings of helplessness and despair left me wondering if I would ever be put back together again.  Everyone has dates they remember; their wedding, their children's birthday, or worse the day they lost a child.  Unfortunately living in this reality we have too many dates marked in our memories for negative reasons.  While I will never understand the why, I have chosen to stop asking and enjoy the present.  Oddly enough, July 16th passed this year and it didn’t stop me in my tracks as it has in past years.  When I made it through that date I think back and smile. I smile because of how far we’ve come, I smile because there have been more joyful moments that have replaced those sad moments. I believe life is made up of these and what we chose to do with them is left up to us. So while I’ll never forget this day, I also realize that it was the beginning of us starting to understand and embrace our new future.  It gave us a glimpse of how strong Sloane is and how she was meant to be here all along.  

When I woke up on July 16 2014, I had no idea that we were walking into a day of unknowns.  I remember being anxious but not necessarily in a bad way.  I was anxious for answers and was honestly hoping to have a quick response by the end of the day.  My pregnancy with Sloane was for the most part normal. I had two scares in my first trimester and I thought for sure I was miscarrying but every time I went to my doctor they found a heartbeat and said we were fine.  It was early in my pregnancy, I think around 8-10 weeks, when the doctor confirmed I had placenta previa.  That just meant they would watch me closely but nothing overly concerning and nothing was wrong with the baby. Just lighter workouts and if it didn't go away by my third trimester which most do, they would do a c-section.  Due to Placenta Previa, I needed additional ultrasounds to determine if my placenta was moving and sure enough between 22-24 weeks it did.  All these extra scans showed the baby was perfect, the placenta previa was no longer a concern and we were left with a false sense of security.  After 24 weeks I started to gain a tremendous amount of weight but in full transparency I was eating a ton of ice cream with sprinkles everyday.  Also, everyone tells you that you carry girls differently than boys so I swept it under the rug.  Let me put into perspective how much weight I gained; every person I ran into would wish me luck and ask when the baby was due, assuming it was days/weeks away.  Sadly I was still two months away.  

After starting to get physically uncomfortable with all the weight gain, I knew I had some questions for my doctor at my next appointment.  Thankfully Jay was able to be there with me.   In hindsight we should have known something was off but we were working parents of a toddler and frankly I thought I was being a baby.  When we saw my doctor later that day I was in tears explaining the pain I was in.  He measured me and I was measuring at 42 weeks. I was only 32 weeks along.  Either the baby was bigger or I was retaining fluid which could mean a problem.  He ordered an ultrasound immediately. We weren’t prepared for what the next four hours had in store for us. Not one clue.  Also let me say this, so many people have asked how we didn't know sooner.  I think not knowing was the beginning of the many blessings we experienced through this whole ordeal.  I really believe if we were to have found out any earlier that something was wrong, the torture of “what if's” would have been worse for me to handle.   It also allowed us to be parents to a two year old who needed us which, in hindsight, I'm truly grateful for.  We enjoyed vacations and time with him without the anxiety and worry of what was to come.  While we have plenty of that now, we are better prepared for it and have learned how to adapt.      

We walked into the ultrasound room and our tech started to do our scan. Pure silence is always a bad sign. For 15 minutes she did all sorts of measurements and then walked out of the room without saying a word. In that moment I knew something was seriously wrong. I remember sitting in shock wondering what I did to deserve this and just sobbing without knowing what was wrong. My doctor walked in and I love this man because he was as gracious as can be in that moment. He simply said “there is a growth on the baby’s head/brain. It wasn’t there 6 weeks ago but it’s there now." We asked what it was and he had no idea but he made an appointment with another doctor who specialized in Maternal Fetal Medicine and he walked us over to be seen in hopes of learning more.  Thankfully we only had to wait 10 minutes and they brought us back.  A new tech started another ultrasound and mentioned a couple of possibilities. She said the only thing I’ve ever seen is a teratoma but was hesitant to diagnose that definitively since they are extremely rate. 

Now a new doctor walks in and starts going over everything. At this point I’m totally numb and freaking out. We called my parents to pick up Graham.  Jay and I are sitting in silence wondering what the heck is happening and trying to decipher what the doctor is saying. She starts off saying it’s either a teratoma or encephalocele - neither is good.  Then I'll NEVER forget her words right after: "You have the option to terminate your pregnancy, she probably isn’t going to make it."

I can't remember if I had tears at that point or was in absolute shock of the news.  In four hours we learned that Sloane had something on her head, no one knew what it was, she probably wasn't going to make it, and we were given the option to terminate our BABY at 32 weeks while she was still kicking/dancing and letting us know not to give up on her.   This girl has had a fight in her body since the moment we knew about her.   When the doctor asked me those words I knew it was bad. We decided to do an amniocentesis to do further genetic testing in addition to what we already had done and then they drained two gallons of fluid to make me more comfortable. By doing that I knew it could have sent me into pre-term labor but at that point my first though was, at least we would know what we are dealing with since no one knew.  

After the amnio, second ultrasound, and the question to terminate, we left with more questions, tears, and all the fears of “what if's.”  What was next, who was taking on our case, and where in the world do we go from here?   

My parents had Graham at our house. My best friend dropped off dinner and hugged me while I just cried and cried. After everyone left our house and we put our two year old to sleep I remember distinctly closing the door to Sloane’s nursery that I worked so hard on and wondered if I would ever bring her home to see it. That night I sobbed for hours wondering what was next and asking the question why. Why me? Why did this have to happen. It was probably the worst day of my life, feeling so out of control and with no ability to protect my unborn daughter.  Honestly when I look back on those moments they were so RAW and full of hopelessness.  Little did I know this is where the story begins. Waiting, waiting, and more waiting with lots of unknowns. Isn’t that how life is 99% of the time? I believe it’s how you handle your situation in the waiting moments that end up creating the next steps. In the beginning of all of this I asked WHY so much.  I think everyone does when faced with an extremely difficult time.  Through this,  I've learned that we aren't meant to know why.  I think if we did, it would overwhelm us so much so that we wouldn't press forward into the next part of journey.  

Helicopter parenting at it's finest

Y’all, let me first apologize in advance if we have a play date anywhere where my children could potentially get hurt because I’m a self admitted helicopter parent. Maybe it was giving CPR to Sloane three years ago or maybe it’s just who I am, but I audibly gasp when Sloane bikes, swings, runs, dodges branches, or pretty much does anything that could hurt her. I say this with laughter but let me paint you a picture and then you can decide if my behavior is totally normal or if I'm a little crazy. 

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SO excited for Disney World!!! 

Last October we took the kids to Disney World with Jay's parents. Of course we had our fast passes booked for Space Mountain because that’s what you’re supposed to do when you go to Disney World.  Jay, Jay's dad, Graham, and myself headed to the ride while Jay's mom took Sloane to the smaller roller coasters.   We made it through the line fairly quickly and Graham and myself ended up in the first car together, separated by the seats, arms distance apart.  The car takes off and, for those that don't know Space Mountain, it's a roller coaster in pitch black and you have no idea what turn is next.  Clearly, I didn't remember this ride from my childhood and in this moment, I'm thinking, Dear Heaven save us now!!! So I do the only thing that any mom would do, I LITERALLY reach over the shoulder rests and hold Graham down by the shoulders as tight as I possible can, SCREAMING it's ok buddy it's ok, I have you!!  First, did I really think I could hold his body in the car if the straps or bar were loose?  Second, he was measured for the ride and there have been millions of children his size that have been perfectly fine.  In my madness, I'm scaring the bejesus out of him even more. As the ride pulls up to the station the poor child gets off shaking and in tears from the absolute horror that just happened.  Walking out I don't know who left the ride more scarred, me due to the vision of his small body flying through the air or him because his mom was screaming at the top of her lungs clutching him trying to control a ROLLER COASTER.  Meanwhile my husband was more perplexed at what happened then ever before.  While walking to meet the rest of our family and replaying what in the world just transpired, I started to wonder what happened to the girl who used to LOVE roller coasters.  Life happened, fear took over, and it was slowly destroying everything in my wake.  My fear of the "what if's" traumatized my five year old at Disney world!!  If that isn’t a come to Jesus moment I don’t know what is.

After this spectacle, I tried to process how I was parenting my children and I started to realize I wasn't empowering them to be brave, instead I was making them scared because I was scared.  I wasn't allowing them to fail when I was protecting their every move in hopes of preventing pain.  I wasn't allowing them to learn through failure, through brokenness, through sadness, through character building moments,  that those are the moments that end up defining us.  It's hard to write these words knowing that for the first few years of Sloane's life we were surviving and not thriving.  Of course we had no choice, but what I don't want is to create timid children afraid to tackle hard things in life.  Fearful of failure, fearful of having their hearts broken, and fearful of life because of my own anxieties and fears of the unknown and that's when I decided to make a choice, a daily choice to not let fear rule my life. 

Through processing all of this and intentional efforts, and I say intentional because is NOT normal for me not to want to protect my kids.  It doesn't feel right when I let them fall and scrape their knees because I'm their mom and my job is to keep them safe.  However, it it's also my job to help them get back up again when they fall.  If I don't empower them to do so, who will? So, while I still gasp, I let them fall, I let them fail, and I let Sloane stand up to other kids and proudly state why she has to wear an eye patch for 8 hours a day or why her eyes look funny when all I want to do is jump in and protect her.   As I continue to push forward in these unnatural feelings, guess what I'm starting to witness, they are gaining confidence in who they are and it makes my heart soar greater than any fear could.  

It’s so hard as parents not to protect them because we can. We have every right to do so, but we also have the responsibility to send our kids back out into the world empowered to overcome the challenges they will inevitably face.  So ask yourself, how are you empowering your children, are you letting them fall down, and letting them learn how to pick themselves back up again.  We HAVE to work at this DAILY in our house.  We TALK , we communicate about mistakes, and pushing through and I'm honest with Graham that life is hard.  Maybe too honest at times but he's also seen hard times from the age of 2.  As much as we wanted to protect him, we couldn't.  His sister lived in a hospital for almost 5 months, and when she came home we were living with my parents and Sloane had nurses and her nanny and two broken parents trying to figure out how to survive this new normal.  It wasn't easy.  I still look back and can't believe that was my life, BUT without that road, we wouldn't be where we are today.  My goal is to share a little bit of our story over the next couple of weeks/months.  Let's be honest Sloane's story is CRAZY and LONG and it will be chapters upon chapters but it's a page turner and it's taught me more valuable lessons in these four years than I would have ever learned anywhere else.  

One final thought because I can't end my helicopter parenting rant without the best part.  On our last day at Disney Graham decided he wanted to ride Space Mountain to overcome his fear.  So the three of us headed over to the 2 hour wait and got in line to support him.  I was also feeling guilty and secretly was hoping to redeem myself.  While we were standing in line I decided to check our fast passes just to see if there was anything for Space Mountain.  I still smile to myself when it plays out in my head.  TWO FAST PASSES opened up for the exact time we were waiting in line.   Jay jumped at the chance to take him and the two of them hopped over the railing and off they went.  As I watched them both walk away I knew this was God's way of showing me to let him go, he was going to be fine AND my fear couldn't rule over my child's ability to want to overcome a fear that I misplaced the day before.  10 minutes later Graham walked out with the biggest smile on his face knowing he overcame the biggest roller coaster of his life without one tear or one crazy mom holding him back.  Sometimes all it takes is intentionality of letting go even when all we want to do is hold on tight.     

On the resource tabs I have some AMAZING kid books that we read to our kids about failure, rising above challenges, and learning from your mistakes.  Graham and Sloane both love them and we do too.  xoxo

Beauty out of Ashes

He makes beauty out of ashes – have you ever sat around to think about what that actually means?  I have, and I know first hand out of our own pain and struggles; there is joy that might not have been found without walking THROUGH it.   I’ve contemplated this space, blog, or whatever you want to call it for a VERY long time. Back in January one of  my best friends told me I should start a blog and run a ½ marathon.  She told me I needed to set goals for myself.  I distinctly remember laughing and saying I hate running and I have nothing to say.  For some reason I’m now doing both.  At points while typing I've asked myself why, but then realized why not.  It may be hard and scary but you know what's worse.  REGRET.  So here I am attempting to be vulnerable and real about raising a medically complex child and walking this unknown path all while still trying to manage being a good wife, present mom, daughter, sister, friend, employee etc.. and let me be honest it’s HARD and lonely at times. 

More often than not, I have wished there was a road map for our journey, wishing, hoping, and praying for answers.  Four year ago when our lives were turned upside down I remember Googling some of Sloane’s conditions and there wasn’t much to read and the doctors couldn't tell us anything definitive about her future.  Instead we live in 6-month increments, with appointments and therapies in-between MRIs believing everything is stable.  What I’ve started to realize in the midst of these waiting periods, maybe it’s better this way.  I don’t want a diagnosis defining our future of what she can and can’t do.  I want to push her forward to be the best she can be.  I remember telling the doctors that she can do everything everyone else does until she shows us differently.  Guess what, so far she does everything.  We were told she wouldn’t hear out of her right ear.   When I whisper in her ear that is sutured shut and tell her she’s a superhero, she repeats back to me what I've said.  When the doctors told us she wouldn’t be an athlete because of the tumor on her cerebellum, she is starting her first soccer season this fall.   It's incredible to see a child overcome the supposed limits of a diagnosis.  So I say all of that to say this - I hope this will be a space of hope and lots of laugher and learning together how to navigate the everyday challenges or raising medically complex kids but doing it gracefully and with JOY.