‘In the coldest bedside manner, he said, ‘It is extremely rare and there is no cure. IF she lives, she will stop mentally developing at 2 months old.’ I just stared at him, my body slowly over heating.’

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“I believe in our lifetime we all have one big thing: One thing that defines us, one thing that changes who we are, one thing that alters our entire existence. My one big thing is Harlow.

Courtesy of Katie Scott

Our life with Harlow in just 2 years has taught me more than I ever could have dreamed of in an entire lifetime. Harlow Jean Scott was born on October 22, 2016 . She was born with an extremely rare condition called Lissencephaly. It only effects 1 in 11 million babies. She also has Microcephaly, Hydrocephalus, and Epilepsy. She is also partially blind. So what that all means is she has an underdeveloped and undersized smooth brain that has fluid in ventricles that it shouldn’t and has seizures. Lot to take in, huh? We call her our little unicorn because she is magical and is here to prove everyone wrong. We don’t know what is in store for her… no one does… but it’s a journey we are on and cheering for her every step of the way.

Courtesy of Katie Scott

We found out something was wrong with Harlow at our 20-week ultrasound scans. Now, I believe everything happens for a reason. I feel the reason they weren’t able to diagnose Harlow correctly while I was pregnant was to keep her and me safe, because if I had known the actual truth at that moment, not given months to prepare my mind or to accept the possible fate of my daughter and myself, it would have been different. My decisions wouldn’t have changed, but there’s only so much you can mentally handle as a human. We had been told we should terminate the pregnancy about 4 times. We knew there was a reason she was given to us. We also weren’t going to give up on her. Whatever we would have to face, we were going to face it head on. I will give you a glimpse into Harlow’s life from day one.

Courtesy of Katie Scott

She didn’t want to come out, so we had to kick her out at 42 weeks, but do you blame her? This world can be brutal. Why leave a nice safe bubble to come in to a cold hard world? Once she was born (56 hours of labor later…) she came out not breathing. It took them 52 seconds to get her to take a breath, and even then, she wasn’t taking breaths fully on her own, they had to help her. They rushed her down to the NICU. I told my husband Bobby not to leave her side. I sat there still numb from the waist down. I had asked everyone to leave the room to give me a moment to myself as I sat there and cried. I was thinking, ‘what am I going to do? How can I possibly do this?’ I thought, ‘what if I never meet her, what if she doesn’t make it?’ I cut that pity party off real quick and called the nurse in to take me to see her. She told me she couldn’t until the epidural wore off. I made it clear either she was taking me, or I was crawling. Safe to say she went and got me a wheelchair.

Courtesy of Katie Scott

I showed up at the NICU doors. Bobby came to get me just in time for the doctor to tell us, in the coldest bedside manner alive, ‘Your daughter has lissencephaly. It is extremely rare and there is no cure. IF she lives, she will stop mentally developing at 2 months old, and if you are lucky, she will live to about 10 years old but with very little quality of life. Here is some paperwork on the diagnosis. Any questions?’ I just stared at him, my body slowly over heating. I could feel the nausea setting in. I could feel the walls closing in on me. I could feel Bobby fuming. I told him get me out of there. I think he needed it just as badly as I did. He rushed me out the door to the elevator and out the front doors. He sat next to me looking at the paperwork. I looked up at the sky and thought, ‘well, here we go.’

Courtesy of Katie Scott

I got severe postpartum psychosis after Harlow was born. I had no time to fall apart because she needed me. I was luckily able to get in an emergency appointment to get it under control, but man, was that scary! It came on so fast. I needed to be there for Harlow, but how could I when I wasn’t even myself? Harlow stayed in the NICU for 2 weeks. She learned to eat ( which they said she wouldn’t), and obviously got her breathing down as well. She showed them not to put labels on her, or tell her what she could or couldn’t do, from day one. Over the next few months Harlow was in and out of the hospital 11 times. The doctors wouldn’t believe me when I said something was wrong. She would arch her back almost completely in half and hardly eat. She was losing so much weight she looked sick. I finally got someone to trust me. Harlow had such bad acid reflux it was burning her esophagus. I don’t blame her for being terrified to eat! They ended up having to put a g-tube in as well as do a fundoplacation. (Wrapping the stomach around the esophagus to keep the acid down).

Courtesy of Katie Scott

Harlow at this point finally had a set schedule of therapy 4 times a week and keeping a day open for her multiple doctor’s appointments. We soon learned that a simple common cold wasn’t simple for us when she was almost on life support because the flu had become so much more than just the flu and landed her in the ICU. She had green fluid coming out of her stomach into her tube. Luckily this has only been once, but unfortunately anytime she gets the flu or a cold she lands herself back in the hospital. I’ve lost count of the times we have stayed in the hospital at this point. We have learned when to leave the house and when not to based on cold and flu seasons. Our biggest struggle that has become more apparent lately is her seizures. She suffers anywhere from 4 to 12 a day. She has 3 different type of seizures currently and we are working on getting them under control. Unfortunately, it’s not an overnight fix. Harlow’s brain is always changing and developing differently, so each time new connections are made, new seizures are a possibility. It breaks my heart that I can’t fix these for her. Of all the struggles we encounter, this is by far the hardest thing I deal with on a daily basis, because there is nothing you can do but sit back and watch. I cuddle her when she has them, but sometimes you have to just let her have them because she’s not in control of her body so she could break a bone if you try to stop her arm or leg from moving.

Courtesy of Katie Scott

Life with Harlow is no simple task but I wouldn’t change it for the world. Harlow has given me more than I deserve. She has touched more lives than I could have ever thought possible. She shows the doctors time and time again she is no lump on a log and continues to fight for herself. She’s on her own game plan and no one’s going to tell her otherwise. The ups and the downs of life with Harlow have taught me perspective like you wouldn’t believe! The things that used to matter don’t and the patience I’ve learned is a Godsend. I never thought of myself as a ‘bad person,’ I just lived my life. I had highs and lows like everyone else but I never felt I ever really fit in anywhere. Not ever really having a place to fit in was hard. Being bullied when I was younger always stuck with me. I never wanted to stand out in case it would happen again, so I went with what was cool and hung out where I was supposed to, dressed how I was supposed to, and so on. I should have been stronger and not let the fear of being bullied affect me so much.

Until Harlow came, I used to tell Bobby this little girl would give me a back bone. Oh, did she give me so much more! She has given me a voice I can stand behind, a chance at a truly full life of happiness and meaning. She made my marriage the best is could possibly be even with the odds stacked against us.

Courtesy of Katie Scott

She filtered all the negative people out of my life and shined on my true friendships. She taught me how not to care what others think of me. She has taught me above all how to be selfless, but to be selfish where it’s needed. I’ve also learned comparison is the devil. We are all human, but comparison will eat you alive. We compare ourselves to one another time and time again. We have to learn to be happy with ourselves and love ourselves not caring what others think or say. If a 2-year-old disabled child who can’t talk can teach me all of this, can you imagine what she is capable of? I fully believe I was born to be Harlows’ mom. She is by far the best thing that has ever happened to me. If you told me right after Harlow was born that I would be saying this I would think you were insane. Now 2 years down the road, 8 months pregnant with a baby brother for Harlow to boss around, it never gets any easier. But I’ve learned to embrace the ‘crazy’ that life throws at me. Life with this beautiful soul…I am one lucky Mama!”

Courtesy of Katie Scott
Courtesy of Katie Scott
Courtesy of Katie Scott

This is an exclusive story to Love What Matters. For permission to use, email Exclusive@LoveWhatMatters.com.

This story was submitted to Love What Matters by Harlow’s mom, Katie Scott, of Corona, California. You can follow Harlow’s journey on InstagramSubmit your own story here, and subscribe to our best stories in our free newsletter here.

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