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!

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.

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!