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.

Life Lessons

They say if you parent correctly, your kids are the ones who end up teaching you. Sure, you try to instill life lessons and values into them, but if you pay close enough attention, kids leave YOU with new values and life lessons.

I haven’t been a parent long, but my journey has been different than the normal. I’ve learned things like how to change a g-tube, signs of shunt malfunctions, how to measure head circumference, how to operate feeding pumps. I’ve learned so much about holoprosencephaly, airway malacia, and many other medical terms and technical hoopla.

Ashtyn has taught me so much, more than just her diagnosis and how it affects her. She is only two, but she has taught me what it is like to be a fighter. I remember sitting in her NICU room on a Sunday and telling her the story about David and Goliath. I remember telling her how there is a warrior in all of us, and that out of the three of us (Alex, me and her) she was the bravest. God has specifically chosen this journey for her, and that every obstacle that came up in her road, she had the power and the tools to use to defeat them – no matter how little she was. She was prayed over, cared for, and most of all, she was chosen and called by the Almighty. No weapon, or obstacle would prosper against her.

With every surgery, hospital trip, health scare, she prevailed. I would watch as doctors would come in and try to prepare us for the “worst case scenario”, but Ashtyn would continually prove them wrong. We would watch over her and the monitors as she was breathing over the tube that she was supposedly going to be in for weeks, I remember the day that took it out, just short of a week. With tears in my eyes, Ashtyn fought her way through.

She has taught me to live in the moment. When we were given the news about her prognosis, we were told every single appointment that we should abort, prepare for a funeral, or not get too attached. My heart would start racing, very unkind words forming in my mouth ready to destroy the doctor, but then Ashtyn would kick me, or do something on the monitor that would show her personality- the personality she was “never going to have”. I would treasure every kick, every hic-up session, every roll, and even every midnight bounce on the bladder session while I was pregnant with her. And every day since she has been born, I treasure every laugh, every smile, every midnight party session she throws every once in a while.

She taught me to live this way with the Lord, too. So many times I would catch myself in the hustle of the day forgetting to take a moment and bask in the goodness of the Lord. I would take more time to worship him during my plan time, thank Him for my students, thank him for the opportunity to be a light to these kids. I would bask in His presence when students would come and tell me, “Ms. C, I got saved this weekend” or a parent would share the same news with me.

She has taught me how to love resiliently. I have always heard “love like Jesus” or “be like Jesus”, but Ashtyn has taught me how to actually live it. At first, it was hard. People coming to me and asking ridiculous questions, doctors telling me not to get my hopes up would absolutely drive me to wanting to knock their lights out, but something clicked eventually. These people don’t know and there is a chance that the visits with Ashtyn could be the only opportunity they have to learn about Jesus. I would answer questions, and then tell her testimony. I would smile at the doctors and then quickly remind them of how far her and Jesus have come. I would be positive at her appointments first thing in the morning, offering her testimony at all risen opportunities.

Being Ashtyn’s mom has taught me so much. I can only hope that when she is older, she can look back and see the lessons that Alex and I tried to teach her.

What is it like?

I cannot tell you how many times I get asked this question. “What is your life like being a special needs parent?” people ask if I am some foreign idea or object. I chuckle because there is so much I want to say, but usually just answer with, “it’s hard and amazing all at the same time.” Because that is exactly what it is, the hardest and most amazing journey I have ever been on.

Truth is, there is so much wrapped into it. So much that needs to be unpacked.

Being a special needs parent is:

Constantly having to remember which doctor is who and when the appointments are. If you are a pro, you probably have a planner of some sort. Maybe even some sticky notes with reminders.

Having mini panic attacks when an alarm goes off in the middle of the night and stubbing your toe while running to check on your child.

It’s having to hear over and over and over again what your child probably won’t do, but still grasping on to faith that maybe one day they will.

It is doing anything and everything you can possible to ensure the best quality of life, often times at the expense of your own quality of life.

Being on a first name basis with all doctors offices and the emergency room staff.

It is advocating for your child, because often times their needs are looked over. Their face becomes just another case. Sometimes you have to get down right ugly, but it is worth it, because your child is worth it.

It is answering “no” to every milestone question on the form they give you for check-ups, and fighting back tears as you do so.

You become a parent, nurse, therapist. So many hats. So much stress, but you do it with a smile on your face.

It is having a “go bag” in case of emergency so you can just run out the door and get to the emergency room as fast as you can.

It is being an educator to those around you because there are so many questions.

It is being exhausted, but mustering up the energy to spend as much time with your child as possible.

It is praying fervently.

It is wishing that one day you’ll just wake up and it all be some sort of dream. Wishing that instead of an alarm going off to wake you, it is baby giggles and “moooommmmmmyyyyyyy”.

It is being hopeful that the “firsts” will come around. The first crawl, roll, word, step. And watching as other parents seem to take those things for granted.

It is planning your trips and activities around the need of your child. Is this place wheelchair friendly? Are the activities handicapped accessible? Can my child actually participate, or is it a wasted trip?

It is trying your best to control everything, but then realizing nothing can be controlled.

It is crying in private, and then putting on a brave face.

It is dealing with the stares and then doing everything in your power to not rampage.

For me, it was total surrender to the Father. Taking everything that was ever said about my child’s quality of life, what she may or may not do, how long she will be on this earth, and just laying it at His feet and then allowing myself to crawl onto His lap. Knowing that He is the ultimate physician, and a good good father.

It’s being so dang proud for all the milestones that your child makes, and being okay with the fact that they don’t look like the normal.

It’s wanting to scream to the world how awesome your child is.

It’s your heart bursting every time a laugh comes across their lips.

It’s love growing leaps and bounds every single second of every single day.

It’s extra cuddles at night, dance parties in the afternoons, and worship in the mornings.

Everyday is a brand new adventure.

Everyday is a blessing.

It is the most rewarding thing I have ever had the chance to experience.

What I wish…

I wish that mothers would complain less. Before you keyboard warriors start attacking me, let me explain. I know mothers have it hard, no matter what stage of “motherhood” one may be in, IT IS HARD. I think this stage of my life has been the hardest yet- even without the extra challenges of Ashtyn’s diagnosis. This journey is NO joke.

I just wish I was as “lucky” as the “unlucky” mother who complained that her child talks too much.

I wish I was the mother who was up all night because her daughter wanted to have a midnight tea party.

I wish I could watch my daughter and husband, the best father in the world, play superheroes in the front yard as I prepared lunch.

I wish I could deal with the terrible two attitude that I see complaints about.

Something was taken from me once the doctor told us what our reality would be. Everything that I thought I would experience as a mother vanished. I didn’t know what we were in for, but I vowed to make every moment last. I see these parents who are so fascinated with everything around them EXCEPT their child. I see parents ignoring their children when they ask them to play. I see children who long to be the center of their parents attention, but are often upstaged by some sort of device. I want to shake them and scream “don’t you know how precious this moment is?”

Since being Ashtyn’s mom I have learned many lessons, but the one I will carry with me for the rest of my life is to never take anything for granted. Ever. From the moment I heard her first cry, I thanked the Lord. Her first bottle, I etched into memory. Her first smile is forever engraved in my heart. I take every little milestone and document it somehow because they carry victory. I use them as reminders of how far we have come, as reminders of the miracle working power of Jesus.

So my plea to those who are blessed enough to be parents: BE PRESENT. Do not take even the smallest things for granted. There are parents, like me, who would give their last breath to hear their child call them mommy or daddy. We long for the first roll, crawl, step. We wish for something that may never come.

To my fellow parents who feel like I do. You are strong. You are brave. You are exactly what your child needs. You are not alone.

Dealing with it

I’m just going through it, guys. A whirlwind of emotions. Most of them I don’t like. At all. Most of which I’ve been dealing with since Ashtyn was born. Some that I have been dealing with since before.

The one I deal with the most is anxiousness. I’ve actually dealt with this way before Ashtyn was born, but it multiplied by like 800 when I had her. I was constantly told Ashtyn was going to die. That her most likely cause of death would be failure to remember to breathe. So, I find myself up most of the nights either in her room or staring at the monitor to see if I can see her breathing. I truly believe my anxiety is to blame for some of her hospital visits in her first year of life.

My anxiety after birthing Ashtyn came with a list of other issues. Postpartum depression, and PTSD. I couldn’t believe that I had PTSD. That’s only for people who went through wars or horrific events. I guess being poked for different testing, bad news every visit, being told I would most likely receive a death certificate instead of a birth certificate, and the not knowing WAS traumatizing. Horrific. Terrifying.

Fear. Oh the fear. Fear of sleeping through the night. Fear of not being able to be in the surgery rooms. Fear of not knowing what the future held. Fear of blinking in case something was to happen. Fear of grocery shopping or doing anything without her. Again, just in case anything happened. Crippling fear. I couldn’t do anything without fearing the worst.

The one I’ve been dealing with the most lately is jealousy. Jealous of the moms who have experienced the first roll. The first crawl. The first word. First steps. Jealous of the moms who have experienced things that are so taken for granted. What I would give to see Ashtyn roll or sit up. Jealous of the family who have never had to pack hospital bags for long stays. Jealous of the parents who got to take turns at night feeding the baby, Ashtyn was on continuous feeds. Jealous of the moms who save on gas money because they don’t have to jump to seven different doctors constantly. I never pictured my life like this, and I’m dealing with jealousy of those who have their “picture perfect” life.

I do have good emotions. I have a sense of pride. A pride that I think only comes with being a mom of a child with disabilities. I am so proud to be Ashtyn’s mom. Everytime she does something that doctors or therapists said she will never do, my heart beams with pride.

Humbleness. Like how did Jesus think I was worthy enough to be a living vessel of such a testimony? How could He look past my flaws and find me, out of all people, good enough to be responsible for raising and guiding Ashtyn through this crazy thing called life? It’s a responsibility that I do not take lightly. And one I am so thankful for.

Thankful. Grateful. Blessed. Ashtyn is here! We were told she was going to die. That she would need all of these supports to be able to function. That we should think about organ donation. But she is here, alive, and thriving! And we, Alex and I, get to be such a small part of her testimony.

I write all of this just to say that you are not alone. Life is hard. Certain circumstances make it even harder. Emotions are real and are made to be felt. So if you need to cry, cry. If you need to scream, do it. Don’t bottle it up.

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.

Good Bye 2019, and Thank You!

Wow. I blinked and 2019 is gone. I double blinked and Ashtyn is almost 10 months old! Like what the what?

This year was the hardest year I have personally ever been through. You guys know that scripture that says “The devil comes like a thief in the night?” WELL Satan came morning, noon, night, midnight, crack of dawn; you name it, he was there trying to take away anything that I had left.

We knew about Ashtyn’s diagnosis in 2018, but as her due date kept getting closer the panic attacks, crying in the baby section of every store I went into, the anger at other pregnant moms, and doubt in who God says he is grew and grew. I really didn’t know how I was going to make it.

The great thing about God is, is that he knows how to carry us through the most difficult times. Sometimes it’s a soft cradle like holding a newborn baby and other times it’s hoisting us over his shoulder like we are tantrum throwing toddlers. Then there is what he did to me this year. Ya’ll ever seen the movie “Inside Out?” The part when Joy is dragging Sadness by her leg through the long term memory PERFECTLY depicts how I was handled. Some of you all might think that I sound crazy, and that Jesus is gentle when handling us. Which is true, but let’s not forget the time when he flipped his lid at the disciples for sleeping in the garden while he was praying, sent a fish to swallow Jonah, kept Moses in the desert for 40 years. God knows what we need to get us to where we are headed. I needed to be sad and “lay down” at my Father’s feet. He allowed me to do just that.

This year has been HUGE in discovering more about Christ daily. And he is allowing us to do that through the most precious gift He has ever given to Alex and I (besides his life, of course). We look at our sweet Ashtyn and know that we are looking at the face of God. We see his mightiness through her. His faithfulness is revealed in every milestone she reaches. His miracle working power is written into her story so eloquently, and we are forever grateful. Grateful for each smile, laugh, snore, hospital stay, rough night, growth spurt. All of it.

*Enter my Tye Tribbet singing voice* The Devil thought he had me. Thought my life was over. He thought that I would give up. He thought I had no more, BUT THAT’S WHEN SOMEONE GREATER STEPPED INTO MY SITUATION. MY MORNING HAS NOW BEGUN. HE TURNED IT.

Oh, and my my my how he turned it. I have my sweet love bug here with me despite what everyone said. My biggest lesson that I learned this year is to trust. Trust God. Trust his plan. Trust his process. Trust his timing. He is in control.

Happy New Year! Step into it with confidence in who God says He is!

Part 2

I don’t even know if this is going to actually be readable. I’ve sat down time and time again trying to start this, but just couldn’t. It wasn’t “writer’s block.” It was just that I couldn’t find the words to really express what our life was like when this happened. The emotions I went through, the roller coaster that derailed about 70 times, the not knowing, the emptiness. How does one even begin to reopen that box and put words on a page? Nothing I wrote did any justice to what it was actually like.

Let’s recap: Ultrasound confirmed we were having a girl. Ultrasound came up abnormal. Doctor made appointment with high risk the next day. Alex and Cassidy=broken.

I remember being so angry that I physically became ill. I was shaking, I couldn’t think straight. I texted my dad “start praying for your grandbaby now.” Alex called our pastors and prayer warriors. All of them had about 85 questions each, and we just had to tell them what we knew- that there was fluid on her brain. They immediately began praying that the healing anointing would flow from God and touch our baby girl. Alex anointed my belly and we both just started pleading with God. “Please Lord, please” was all that I could utter. I’m not actually sure what happened the rest of the day, but I know that Alex and I were just silent. Not that we were mad at each other, but because we didn’t have words to say.

Here Alex was watching his wife hurt and knowing his baby was “hurting” as well, and knowing that there was absolutely no words to help ease the pain. Here I was, being the person I am, running every last scenario through my head. Torturing myself on google. Going through our ultrasound pictures and imagining what went wrong. Did I eat something I wasn’t supposed to? Did I do something within the six weeks I didn’t know I was pregnant? Was it something I was being punished for?

Again, we prayed right before we went to sleep, “Lord. please heal our baby. Please let the fluid be gone tomorrow.”

When the next morning came around, Alex again anointed my belly. And we prayed and asked God to be with us in the room. And He was, just not in the way we had hoped. The lady came in, put the warm jelly on my stomach, and started taking many pictures of our sweet blessing. She was nice, talked to us the whole time, just trying to ease the tension in the room. She left, and again. We prayed. We were so devastated with the doctor came in.

“I’m afraid that it’s not good news.” My heart sank. The next words that came out of his mouth could have probably killed me. “It’s just not fluid, your daughter is missing parts of her brain. And she probably won’t survive past the second trimester.” I was gone. Again, my world went black. I came through as the doctor informed me about my “options.” I quickly jumped up and shut him down real fast.

He then said that I should do further testing. Before we left the doctor ordered an amniocentesis, and a conference call with a genetic counselor. Then he left the room.

Alex and I again, just fell silent. Tears were coming out of my eyes without even realizing it. Yes, they were sad tears. And I would be lying if I said there weren’t angry tears, but most of them were cries to God. I wanted so bad to be mad at Him. I wanted to be able to throw a fit and question Him like I had so many times before, but this was different. Yes, I was completely broken, but I was also comforted in knowing that I serve a big God.

No, God didn’t answer our prayers the way WE wanted him to. But we did know that God is a miracle worker and the God of life. So right then and there, Alex and I decided that we were going to pray life and life more abundantly over her like The Word says in John 10:10. The enemy really did come and try to steal, kill and destroy, but he messed with the wrong family. We knew Who our miracle rested in! We weren’t going down without a fight, a fight that we knew was already won!

God gave us this beautiful baby girl for a reason; she was ours. We were going to do whatever we had to do for this precious gift to have a chance at life. It was something we didn’t and still don’t take lightly.

We didn’t know what the future held other than constant monitoring and testing. We didn’t know how to plan for Ashtyn. We knew we were in for a journey, one with many twists and turns. We still didn’t have a confirmation on what just what we were dealing with, so that made it even harder. Many names were spilled out of disorders that it could possibly have been, but it didn’t matter. We loved our sweet baby, and trusted Jesus to do the things only He can do!