The next woman in this series to share her experiences is Tara Bennett. I know her in "real" life and she is amazing! You will see that in this post. I am so grateful that I get to know her in this life. You can follow her on her blog!
The pediatrician told my husband and I that our baby girl, Chloe, was “the healthiest baby in the nursery!” She was just perfect. I couldn’t wait to take her home and start enjoying all the fun adventures I had planned. It didn’t work out exactly like that, though. We were told repeatedly she had colic. I didn’t care what they called it, it sure was not fun. The days and nights were filled with lots of screaming and tears. I couldn’t wait to get past her colicky phase. Four months later, however, after much insistence on my part, some tests were done to rule out any major issues. A moment before the doctor came in to tell us what was wrong, I had an experience that I now believe was a ministering of angels letting me know that they did find something seriously wrong and that it would be hard, but it would okay and I wouldn’t be alone. In the midst of what could have been a terrible moment, I had an incredible sense of peace. I am forever grateful for that experience. It gave me comfort when the doctor came in showing us the white spots and abnormalities they had found on Chloe’s brain CT scan. Miraculously, I was calm. I had peace. About a month later, Chloe started having very serious seizures that caused additional, irreversible brain damage, and she was given the diagnosis of cerebral palsy when she was about a year old.
This was not the plan. In fact, to be honest, I had decided I didn’t want a child with special needs when I was about six. My friend had a brother with severe special needs and they never got to do anything fun together, that I saw. Their mom was always busy taking care of her son with special needs. And many times throughout my young life, when I saw families with special needs, I couldn't help but think it did not look fun. And without large doses of fun, what was the point? Well, despite my lifelong opposition to the idea, I had a child with special needs and health issues. It was different than I had thought it would be. It wasn’t just an abstract idea, it was an experience I was having with my beautiful daughter who I cherished and my husband who I loved deeply by my side. So it wasn’t like I thought it might be when I was looking from the outside in. It was hard, but it was beautiful and filled with love.
The first year I was so sleep deprived and just trying to get through that I honestly don’t remember much. But I do remember deciding at some point that even though we were facing some serious challenges, we were going to have some serious fun! And we definitely did. I did everything within my imagination to make Chloe smile and to celebrate every day. I even remember one time saying to her while she was screaming and I didn’t know why, “Chloe, I don’t know what you need. I’ve done everything but stand on my head!” And as I said the words, I knew I had to do it – I had to stand on my head. I don’t remember if it helped or not, hahaha, but I tried! I still and always will believe in living a life of celebration, making little changes in our perspective and activities that make everything special. I learned a lot about this way of living from the book "Celebration! Ten Principles of More Joyous Living." I reached out in my community and via social media, making friends with a lot of other special needs parents. We shared and received insights and inspiration. Many of them remain dear friends and will forever! Whenever difficulties arose, I would muscle through them with a smile on my face until they passed. Nothing was going to make me betray my plan for a life filled with fun, fun, fun! When there was a sickness, surgery, seizure, or hospital stay, I would grin and bear it, barely holding on with white knuckle strength… I could barely wait for it to be over so we could get back to fun activities and giggling.
I’d like to end my story here and tell you we went on celebrating, smiling, and having a hunky dory time for the rest of infinity and letting you know that you too can have a reason to celebrate and have fun no matter what you’re facing!
Well, I’m not here to do that. Quite the opposite, in fact.
I’m going to get very real with you at this point. When Chloe was 5-years- old… after 5 years of smiling no matter what and having fun no matter what, I hit a wall. Some might call it a mental or emotional breakdown. I felt broken beyond repair. I felt worthless and hopeless. I had no desire to celebrate, smile, or get out of bed. Let me tell you what, it was not fun. I look back in gratitude for that time, though. My husband and our families supported me and helped however they could. Once again, I experienced the ministering of angels, but this time I knew their names and felt their loving embraces.
J.K. Rowling has said, “Rock bottom became the solid foundation on which I rebuilt my life.” I can echo her words in regard to this time in my life. I had to rebuild. It was not possible to put the pieces back together, they were too shattered and scattered. Professional counseling and spiritual intervention were required. I learned many lessons during this time and I’d like to share a few with you.
You aren’t always going to be okay and that’s okay. Allow yourself to be at peace if you’re not at peace. Acknowledge the darkness and sit in it for a moment. As Brene Brown teaches, “We can’t selectively numb emotion. Numb the dark and you numb the light… The dark does not destroy the light; it defines it. It’s our fear of the dark that casts our joy into the shadows.” I learned that suppressing or numbing any difficult feelings will ultimately affect any positive feelings, even if you don’t realize it at the time. If you allow yourself to look into the face of your anger, pain, resentment, or whatever negative feeling you might have…get to know it, understand it, allow yourself to feel it, then you can let it pass or seek help from whatever source(s) you choose if it doesn’t pass. This can be scary because it’s hard to admit when we are having a hard time and/or need help. But you know what’s scarier? Not living your truth. Not letting your real self have an authentic experience. Hitting rock bottom. As I have heard Julie Hanks say, “We don’t need to feel better. We need to be better at feeling.” Accepting grief, misery, and whatever negative emotions that come up can lead us to self-discovery and growth, maybe even change if you’re open to it. Change can be scary, but if you’re not changing, if you’re stuck in neutral, you’re not going to get anywhere worth going. The best part about living honestly is that it’s contagious and healing! When you are willing to show up authentically to life, the people around you will dare do the same and you will help each other! This concept is taught beautifully in the lyrics of this song:
Life isn’t about having fun. It’s about having a meaningful experience that allows us to evolve.
For much of my life including the 5 years after Chloe was born, I thought life was about having fun. I thought of parents who had children with special needs and didn’t seem to be having any fun and wondered what was the point. When I was forced to look at my life from a different perspective, I realized I wanted (and needed) to feel happiness and joy even when I wasn’t having fun. This was not a skill I had yet acquired so some work was needed. After addressing some poor thought patterns and developing some healthy coping skills, although my circumstances didn’t change, the way I saw my life changed. The way I lived my life changed. Instead of begrudgingly enduring long nights filled with seizures and crying, hospital stays, and unpleasant medical procedures that incurred enormous medical bills, I started experiencing life in a different way. My heart would fill with joy and heartfelt gratitude that I was getting to spend time with Chloe at night, even if the reason was that she was crying or seizing. I would recognize and appreciate that even though her medical needs impacted us financially, we were blessed with all the things we needed and more. After long nights, I found humble gratitude for the morning, looking forward to draw back the curtains and let the light in on a new day. I had found a beautiful acceptance and that was key. Wishing things were different had caused deep suffering. I don’t recommend that. I recommend that we stop hoping people, places, and circumstances are “ideal” or different and start finding the joy that is waiting for us in the truth of our reality! Tools for learning how to love life exactly as it is are taught by Byron Katie. I especially like the book, "Loving What Is: Four Questions That Can Change Your Life".
Looking back, it is almost funny to me that accepting things the way they were and stop wanting them to change was what brought about the most change. Oh the ironies of life! Through this experience, I was able to learn a profound yet also simple truth that rather than resisting difficulties, we can learn to embrace them. We can learn to let the hard things we face change us for the better…strengthen us (or reveal to us strengths we didn’t know we had), increase our awareness and compassion of the challenges others face, and ultimately, miraculously, bring us more happiness! So
when you are facing something bigger and harder than you thought you could handle, and you start to see that it is changing you, I say…let it! Let it illuminate the true you! The growth might be painful, but you will be grateful for the person you’ll find deep within! I think this is called healing. As Elaine S. Marshall has taught, “Pain changes us, but not in the same way that healing teaches us. Healing can help us to become more sensitive and more awake to life. Healing…invites gifts of humility and faith. It opens our hearts to the profound complexities of truth, beauty, divinity, and grace.”
Please don’t get me wrong. When I say life is not about having fun, I’m not saying that we shouldn’t have fun. I still have LOTS of fun with Chloe!!! I’m just saying that fun isn’t the point. Chloe and I can laugh and do fun things one day, then experience seizures and suffering the next, and now that I have learned to see life differently, I can find great joy in both days. And, of course, I still believe in celebrating life. I also believe it’s important to note that loving what is has to do with events that have already transpired and/or things we cannot change. I still wholeheartedly believe in changing and improving what we can! I’m also big into setting goals for the future. I find great joy in these things! But when circumstances don’t improve like we’d hoped or our goals are deterred by things out of our control, the concept of loving what is allows us to relinquish misery and retain peace and joy with the way things actually are.
You get to choose! Choose joy. Choose love. Choose peace. When I hit rock bottom, I was slowly but surely opened up to a new way of viewing and experiencing life. It included changing the way I understood and engaged in some spiritual practices (such as prayer and scripture study), reinforced the importance and prioritization of daily routines (such as eating healthy, sleeping, and exercising), and implementing quite a few new habits (such as meditation, affirmations, and more). I could spend two weeks talking about all of this (and if you know me in real life, you know that’s really true LOL!)… I will spare you that torture. But I will share one thing that has helped me a great deal. Music has always been a big part of my life, but when I faced this emotional crisis, I decided I needed to be even more selective about the music I listened to, based on how it might affect me emotionally. So I went on a quest to create playlists of music that would be healing or uplifting for certain moods. I resolved to consistently listen to these playlists instead of music that might stir up negative emotions or, worse, make me feel apathetic. I’m sure my playlists will not be to everyone’s taste (I like quirky/folky music and meaningful lyrics), but I wanted to share them anyway. The playlists (linked to Spotify) are called, Choosing Joy, Choosing Love, and Choosing Peace. Even if you don’t like the music I’ve selected, I hope you can at least take away the intent behind it… we can choose to feel joy, love, and peace. We might first feel anger, grief, or other not so pleasant emotions in response to the tremendous trials or everyday annoyances we face, but then we get to choose what we do next. We can choose our thoughts, our perceptions, our habits, our influences, our music, our food, and many, many things. We can’t always choose our circumstances and our circumstances are not always going to be fun, but I have learned that there are a lot of things we can choose. What will you choose?
Read other posts in this series: