Heartache on Christmas

The holidays are hard for multiple people for multiple reasons. Missing family members, comparison sneaks in, seasonal depression.. but the one that isn’t talked about much is the heartache of a special needs parent on Christmas.

When I first found out I was pregnant with Ashtyn I pictured each birthday, holiday, all the milestones. What I pictured vanished once her diagnosis became our reality. A hole started to form in my heart. No first words, steps, cake smashes, opening presents, temper tantrums.

Something so simple happened yesterday that sent sadness shooting into my body. Traveling home, we stopped at a gas station. As I was coming out of the bathroom a little boy and his father were passing the coolers. With all his might and the cutest country accent the little boy said, “oh I sure hope that they have my chocolate milk.” I walked out of the gas station thinking “Oh, how I wish I could walk into gas stations with my little girl holding my hand.”

Christmas shopping is hard, too. Ashtyn officially crossed into the toddler isle a few months ago, which was a whole other tear jerking event. So, shopping for clothes is about it when it comes to presents. We are still in the baby isle for toys, because anything else would just collect dust. Leaving a heartache for more.

I sound like I’m complaining. I’m not. Ashtyn is here. Her third Christmas with us, that is a victory in my book. I’m so in love with my little girl. But sometimes, I still get the visions I had when I was first pregnant – and long for them with every bone in my body.

Having a child with special needs opens your eyes to so much. I wouldn’t trade the lessons I have learned for anything. I savor every moment. I take time to “smell the roses”. I get to be who she is dependent on for a little while longer, and that makes my heart so happy. Every holiday, birthday, and event is a blessing and so so SO cherished.

If you happen to be a special needs parent reading this: I see you. I feel your pain. You are not alone even though it feels like it. You’re doing amazing. If you happen to know a special needs parent- BE PATIENT. It’s a tough time right now. We, special needs parents, walk into every situation with an escape route knowing that sometimes our children can’t handle the hustle and bustle that comes with the holiday season. We aren’t being rude, we are just prepared. We are very aware of the “pity face”. We smile, but something breaks a little every time. We don’t need your pity. We need love and support. Most of all, love our child.

My family loves Christmas. We love what it represents and getting to celebrate with family and friends. We are very thankful for our tiny circle of support. We sincerely hope you have a very merry Christmas and a happy new year!

A n x i e t y

Whew. Talk about being vulnerable. Here we go.

One thing about me that I try to mask is the fact I have crippling anxiety. Like up 24 hours, needs four weighted blankets to fall asleep, sensory overload anxiety.

I’ve had it for as long as I remember. I can distinctly recall praying to the Lord that my house wouldn’t burn down while we were gone. I’d pray that my dad would drive safe so he didn’t get in an accident. I would worry about my siblings getting kidnapped. Just crazy stuff that a 10 year old shouldn’t worry about. I never talked about it. Mom and dad, if you’re reading this, hello. I should have come to you. But my anxiety told me I was too much of a burden anyways.

I’m 25 now, but I remember things from my childhood. Conversations I’ve had with friends and what I said, CRYING in class because my penmanship was ugly, sleepovers I wasn’t invited too, things that I did. They play in my head over and over and give me just as much anxiety now as they did then.

Those past experiences keep me from doing things now. I tried overcoming one of those obstacles the other day- praying out loud over someone. Ya’ll I was shaking. Not in the Holy Ghost either. As soon as I was done, anxiety IMMEDIATELY crept in. “That was the dumbest prayer. Do you even know how to pray. That prayer probably didn’t even help the situation, might have even made it worse. You’re never going to be asked to pray for someone again.” This prayer will stick with me for the rest of forever. Like a movie reel. And that within itself gives me anxiety.

I’ve had panic attacks in the past. Some worse than others. This last one though…. Never again do I want to experience anything like it.. Recently some possible changes were thrown at me. Changes I didn’t expect or want. To be honest, I still don’t. I’m praying that something else works out. These possibilities knocked me into a downward spiral. I cried in front of coworkers, students saw the leftover tear marks, I started questioning my abilities, planning for plan B, C, D, and E if my plan A didn’t work. This attack lasted for DAYS. No exaggeration. I got sick from it, couldn’t get out of bed, cried for hours on end just thinking about it.

I wish anxiety had an off switch. And this is where Christian people say, “There is. His name is Jesus.” Don’t get me wrong here, Jesus is a miracle worker. He can do all things, including taking anxiety away. That just isn’t the case for me, yet. Which is okay. Does it mean I stop praying about it? Nope. I pray over it daily. But because my anxiety isn’t “cured” doesn’t make me less of a Christian. Nor does it mean Jesus loves me less than those who have been freed.

I’ve been on a journey to overcome anxiety. Some days are better than others, some I can’t even get out of bed. I was praying one day and I felt the Lord gave me this message “situations arise. My love is not situational. It is for every situation. My grace is for every situation. My love is for every situation.” Talk about being floored.

I know at times in my walk with The Lord I have made God to be situational. I’ve questioned his goodness in the dark time and I’ve praised Him like never before in the good times – as if in the dark times He wasn’t there and in the good times He became human again and blessed me like never before. The fact of the matter is, is that He is just as good in the bad times as He is in the good. He is good at being God. He does not change. His grace and mercy do not change. His love does not change.

Having a relationship with Jesus is having open access to all that He gives us peace, comfort, security, love. He gives it all to us as a gift. A gift is something we have to receive and open ourselves. Jesus doesn’t force anything upon us, I’m sure at times He wants to. I can just see Him wanting to shout “Hey! Cassidy! Here’s my peace I gave to you forever ago. Look right here!” And throwing it at my face. It’s a lesson we have learn, and probably the most valuable. He doesn’t set us up for failure, He gives us everything we need to thrive.

This lesson is something I’m learning daily. I’ve been studying peace after the whole down with anxiety for days on end shebaccle. And one of my favorite scriptures comes from John 14. The Passion Translation makes it super easy to catch a glimpse of who Jesus is and His heart for us: “I leave the gift of peace with you—my peace. Not the kind of fragile peace given by the world, but my perfect peace. Don’t yield to fear or be troubled in your hearts—instead, be courageous!” We can be courageous because God’s peace isn’t fragile, but perfect.

Changes

I’m not the woman I was five years ago, heck I’m not the same woman I was a month ago. Life has a way of changing people, but the Holy Spirit has a way of changing you even more.

When I started my journey with the Lord I really had no idea what I was doing, I still don’t, but thats besides the point. I grew up in church. My dad was my youth pastor or my pastor for the longest time. I don’t ever remember a time where I didn’t know about the Lord. But it really wasn’t until my sophomore year in college I began my journey to KNOW the Lord.

When I started to dedicate my life to Him, a lot of things started to change. Things came to my mind that I had totally forgotten about, hurt was exposed, scabs were ripped open. It was terrifying to go through- even more so because I was alone. Friendships dropped and I didn’t have family around. I didn’t know where to turn, I didn’t know why this was happening. I thought I had buried it enough, so that they would never see the light of day again.

The truth is, I was hurting. Deeply. With the old, and now with the new. The new loss of friendships, the overbearing sense of loneliness, and the not knowing why. Burrying was not enough, it needed to be healed. I don’t know what flipped or when it flipped, but I knew my heartache was trying to teach me something. I knew my loneliness was so that I could learn to rely on my Heavenly Father. I knew the scabs being opened and the hurt being exposed was so that I could surrender those things and be freed. Freedom that only comes from The Father.

Total surrender is crazy scary. It still is for me. I’m a little bit of a control freak and hate to not have my hands in every aspect of my life. I hate surprises, not the ones from my husband, but the ones where I’m blindsided and hit by a truck, Ashtyn’s diagnosis for example. I think it comes from being moved around my whole life, just when I was getting comfortable it was time to be uprooted. Leaving friends, leaving schools, leaving churches, it was all out of my control and I hated it. I think this is also why I don’t put myself out there as much as I would like. It’s a fear that lives deep inside of me. I’d like to say lived, but that wouldn’t be honest. I still have flaws and damage, but I’m a work in progress.

The Lord loves every part of me, my stubbornness, control freakness, my humor, my questioning and adventurous heart. Every part. Nothing I do or say or think surprises Him, because He KNOWS me. I find that very comforting, He is where I place my roots. He cares about me. He loves me.

I don’t think I would have these revelations without Jesus and His spirit. I’m not one of those people who believes that if I stub my toe the Devil is out to get me or the cliché that everything happens for a reason. But I do believe that The Lord operates in all things. He is always moving, so exposing my past hurts, ripping open wounds, was just another step in His divine operation.

Do I still struggle? As a mom, more than ever. Do the past hurts play in my mind like I have them on replay? Oh yes. Do I have days where I want to shut down and cry? Absolutely. But I now know who I can turn to. I can wrap all the hurt, wounds, and fear up and give it to the Lord. He is a good Father, He heals, He delivers, He restores.

My favorite place to be is in His presence. There is room for you, too.

Change is good. Change is necessary.

I’m Back.

So it has been approximately forever since I have posted on here. Life got so busy, I started a new job, am still looking for a teaching job, this whole Covid stuff happened, and Ashtyn turned one.

Yes, you read that right. Ashtyn is one. Like how cool is God? For real though, He is so stinking cool. Ashtyn turned one on March second and we had her party March 7th. It was such an awesome experience of going crazy trying to make everything perfect. Everything has to reflect here theme, “my first bee-day”. All the black and yellow in the world. The outfit Ashtyn wore had to be the cutest thing in the world- huge thank you to one of my best friends for making her shirt and to Ashtyn’s nurse for making the skirt. We had to take family pictures to mark this tremendous milestone. We had to find the perfect venue. It was just a lot, but we got to do it.

In preparing for Ashtyn to make her arrival, the Lord gave Alex a message, “prepare for your miracle” and directed us to the story of the woman who was told to collect as many jars as she possibly could even though she only had a little oil herself. We read this story and instantly knew that we needed to stand bold in who the Lord says He is, a miracle worker. So we prepped for our miracle. Set all of her clothes up, put the car seat in the car, put the stroller together, and I planned her first five birthdays, so being able to execute her first birthday was nothing but amazing. I think my favorite part was the picture wall we had of Ashtyn, one picture from every month of her life. When looking through the pictures we had of Ashtyn, especially the ones from her first couple of weeks, I was instantly brought to tears, not just because my tiny baby was so big now, but because I remember all the pacing in prayer, I remember Alex anointing my belly, I remember kneeling at the edge of the bed and just sobbing. I remember the days in the NICU, I remember just shutting down when a doctor would try to prepare us for the worst, but most of all, I remember the presence of the Almighty. The same presence that was with us on the day of confirmation of diagnosis, was with us in the hospital room, the surgery room, the waiting room, the hallways, the Ronald McDonald house. Always. He heard every prayer, walked every step with us, held us in the darkest hours. But what hits me in the feels the most, is that He was with Ashtyn, too.

I 100 percent believe that Ashtyn knows who Jesus is, how can she not? Her daddy and I were just joking last night because I broke out my pregnancy pillow and said something like “wow I cannot believe I ever stopped sleeping with this, I don’t know what is different, but I have slept so well with this the last couple of nights.” To which Alex replied “it’s anointed, dear. Do you know how many prayers that thing has absorbed.” We both laughed, but it is true. I still have shirts with anointing oil stains on them. I am pretty sure Ashtyn, for the first couple of months of her life, permanently smelled like olive oil. And since before we even knew about her diagnosis, she was prayed over as worship music was played over my belly every night before bed. Shoot, worship music is still her favorite now! She smiles when we say our prayers; when we have worship music playing, she gets either real excited (especially if mommy gets real into it- Pentecostal roots, sorry not sorry) or calms down when she is upset. Ashtyn knows who her maker is; there is no doubt in my mind.

Jesus does not discriminate. Jesus is not only for the elderly, the young adults, the rich, the poor. He is for me, for you, for Ashtyn. He is for all. He died for all. He loves all.

Goal

My name is Cassidy and I (hopefully) will be co-writing this with my husband. This blog is to raise awareness of two things: Ashtyn’s condition, and who God has been to us throughout this journey.

There is no simple way to describe what Ashtyn has, holoprosencephaly. Which basically means that she only has one lobe of her brain, and missing the rest. Yes, this is life limiting, and yes we are aware that she can be called to be with Jesus at any time.

We know what doctors have said, but we know who our trust lies in. We know who has the final say. We know who controls the days we are on earth. So far we have had two wonderful months with our sweet girl, and as of right now everything looks to be in her favor. Each day is a blessing and we don’t take them for granted.

My hope is that you will tune in and stick with us through this journey. And that you will keep Ashtyn, her doctors, and our family in your prayers. We don’t want sympathy or to put on a show. This will be open, honest, and raw. I believe this blog is something that needs to be done to help us (mostly me) cope with having a very medically fragile child. I hope that as we (again probably mostly me) write about our feelings, frustrations, our daughter, and our God that you will find hope in your own journey.

Cassidy