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Hannah and Harper's Wheelchair Journey

Having Twins

Twins are ALL THE FEELS. Fear, anxiety, sleeplessness. But they are also unexplainable, beautiful and unique. My experience may look different from others. This is Harper and Hannah. They are quite literally my little porcelain dolls. They have a rare condition called STXBP1. They are one of THREE sets in the world with the condition. They are non verbal and ride in cute pink wheelchairs. When I saw those two little gummy bears on the screen, NOTHING could have prepared me for this. But now, they are represented by a modeling agency. They represent their community of disability and I could not be more proud. You will never be "ready" for twins. You will never "have it down." It's a constant learning experience and to be quite honest I don't think I'd have it any other way. Being a twin Mom is having a borderline superpower. It will take a long time for you to see the amazingness in it all, but it's there.

Not all days are easy

Some days' struggles far exceed what we ever expected. Some days we have to FIGHT to get out of bed, PUSH ourselves to take charge of the day, and hate every second of it. Most people don't post anything via social media on those days in fear that it makes them look weak and boring. I used to live by distraction. If I can keep busy if I can walk 4 miles, if I can just keep doing my best day in and day out... the day will be worth something. People see that on social media and I am flooded with messages like, "How do you do it?" "Wow, superwoman!" Truth is I have no idea how I'm doing it. Some days, like today, I take two naps. People look at that as boring, lazy, and unproductive. I now see it as taking an opportunity. Some days, and they are very rare, I charge through this day with unfaltering speed. I've learned to get comfortable with weak and boring. I have had to learn the process of slowing down, so I don't crash. And accepting the downtime, so my brain can process. The processing of this journey is never ending. There will never be a day where I look at a stage or task and say, yes... we are done with that. The ability to constantly be willing to be an advocate, dedicate your life to someone else's care, and run yourself into the ground with a smile on your face, is an ART. Physically, it's exhausting. Mentally, it's a whole other ball game. Point is: take a second nap. Be boring. Seize the day for your own mental health. It doesn't make you weak. It makes you grow.

Please stop growing

These moments are jagged little pills to swallow. The thing about being a parent of special needs child is we are normally do not have time to process the next big milestone. We are so busy getting through real time milestones to acknowledge the next. Your child's growth is often magical. Something amazing to watch. But when you have a child with a disability it can be painful. With the twins, the bigger they get the less control they have over their body due to lack of muscle. Spine issues are setting in and out seems as if their prognosis is worsening. How do I say STOP GROWING, PLEASE. I put my heart out to all parents of children with disabilities who are struggling to watch their friends' children go through milestones. We are happy that your children became potty trained, took their first step and doing all the things we thought our children would do. We are just finally processing that. Keep pushing, they are worth it.

That New Year, New Me

Let's be real about New Year, New Me. It was invented by social media. No, really. While social media is an excellent tool for igniting the happy endorphins in our brains, it's not real. The truth is we cannot magically transform into better people overnight. In fact, January 1st is considered National Hangover Day. The last time I experienced a hangover, you better believe I wasn't celebrating it. With the champagne gone, the "texts from last night" and the raging headache, how is it we can possibly turn into a new version of ourselves? I'm grateful to wake up sober, able to cook pancakes for my children, and smile when my son says, "I love you, Mommy." Some people call that "boring," I call it healthy. I'll be real, my 2021 was... eventful. I won't say it sucked (even though it did) I will try my damndest to look at my downfalls as a lesson. Life threw fastballs I wouldn't have ever seen coming. They pelted me in the face, hard. Some changes were self-inflicted while others I couldn't stop from coming. I lost friends, family, sanity, and mostly time. To pick one single event within the year to focus on is not healthy. I have to take a step back, acknowledge every emotional moment and, much like a child putting its finger in a light socket, never do it again. We speak of New Year's Resolutions as if they are this magic spell Harry Potter whipped up for us. Engorgio!!!! We work for better bodies and all things material and mostly our external layers. This year, I proudly get to say I am going to start working on managing my inner layers. Personal Development, knowing my limits, respecting my body as a temple and never accepting less than I deserve. Being grateful for every moment. I am going to continue to advocate for my twins. Someone finally talked me into throwing them into the modeling industry, so I am going to give them an opportunity to advocate for disability and that makes me so very proud. I am going to keep supporting my son with his passion to learn, play soccer, and live life to the fullest. He is just like me, which could be terrifying, but he is a better version of myself and I couldn't be more proud of his resiliency this year. Me? I'm going to make my mental health my FIRST PRIORITY. Because without healing my internal layers, my children can't have their mother. My hope for 2022 is an overall greater understanding and acceptance of mental health issues. It can't be ignored, for some, it's crucial to live. Slowly but surely I will make 2022 better than 2021. I will heal my internal layers and find joy. I will indulge in things that make me happy and slowly back away from things that no longer serve me. I will strive for a healthier body but if that doesn't happen, that's OK. The thing I most look forward to in the coming 12 months is to be kind, show mercy, and always strive for a little bit more joy. Edith Wharton said, "There are two ways of spreading light: to be the candle or the mirror that reflects it.” In 2022, I intend on being both.

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Hannah and Harper

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Hannah and Harper's Wheelchair Journey

Twins are ALL THE FEELS. Fear, anxiety, sleeplessness. But they are also unexplainable, beautiful and unique. My experience may look differe