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Lessons From My First Year in 'Holland' With My Daughter With Down Syndrome

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One year ago this morning, I embarked on one of the greatest adventures of my life. I made sure I had snacks, extra clothes, some shower supplies, my camera, my phone charger, some makeup, slippers, my best friend, a brave face and the greatest of anticipation.

We dropped off London and Nash with Grammy and Papa and told them we would be back soon. Their excitement was easily met and matched by our own. They couldn’t wait. After all, they had been planning for this adventure too. We had studied what to expect; we learned the culture, the sights, the terminology. We learned the best kept secrets of the trip ahead; we felt we were ready. We had our maps, we had each other, we felt prepared. Our first big trip together was about to begin.

We were off to Holland.

One thing was missing. Our tour guide.

One year ago at 11:53 A.M. I met our incredibly beautiful, strong, motivated, eye opening, life changing, tour guide. My daughter, Rauri.

The beauty of Holland was, and is, unlike anything I’ve ever seen before. Understanding the importance of the scenic route was one of the first and greatest lessons Rauri taught us as a family. But frankly, it is also often overlooked by others. Rauri has taught me that I will often be given things in life I desperately need — I just may not always be the first to know it. And that’s OK.

Rauri has made me a better person. She has been a constant, daily, reminder of my belief that we are not in charge, and whoever is knows us far better than we know ourselves. There are so many blessings in coming to believe that we are dealt exactly the cards we need. They may not always be a favorable hand, but when played right, I believe you have the potential to win every  time.

I believe Rauri is teaching her siblings that there is so much more to life. She has taught them to find greatness in all people, no matter their ability, their presentation, their diagnosis, or their creed. She is a driving force behind the incredible young people they are becoming. I wish more adults would follow their lead on how to treat a person with special needs.

We have been blessed beyond belief by the souvenirs we have collected on our trip. We have met some locals, the most outstanding parents we’ve ever met. We may not have packed the same belongings, but we’ve acquired the same tools — each other. One of my most prized possessions is the family we have gained. It is something I have made an oath to always thank Rauri for. Without this family, the roadblocks, construction and turbulence we have experienced would not have been navigated as smoothly. I am eternally grateful.

Upon opening my map, I learned that it may take longer to reach our destinations, and they may not be as they appear in our guidebooks. The toll may be different, the menu may be hard to read at times, and the hours may sometimes be different. I’ve found there can be indescribable beauty; sometimes you just have to search harder for it. The late night hours would become some of my most treasured times, and the experience would be impossible to describe to someone who has not traveled there themselves. I am a sliver of the lucky few who are so damn lucky to have this experience. And I am richer and wiser because of it.

I have cherished scrapbooks in my head of our trip thus far. Snapshots of monumental moments, champagne toasts, rare and behind-the-scenes footage. First times rolling over, a first babbled word, a first smile, all things months in the making. First times sitting, and the moments of improvement after hospitalizations, a response to treatment, a milestone met in therapy, a glimpse of success after hours and hours and days and days of hard work. I have so much pride for this little person, her undying strength, and her willingness to love everyone who crosses her path.

If these were all things I was able to take away from a year of travel, imagine the possibilities of a lifetime of adventure.

Rauri, every day as your mom is an adventure. I promise to always take time to stop and smell the tulips and admire the beauty of their fields, adorned with windmills. You are my breath of fresh air, the sweet breeze at my cheek, the push at my back, the sun in my sky and my very reason to explore. I love you like your siblings love you, loudly and unending.

Thank you for allowing me to embark on an adventure so valuable. Thank you for showing us all that there is more to life when you open your eyes wider. Thank you for always being you, and for pushing me to be the best version of your mama. Happy first birthday, sweet girl.

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Originally published: November 14, 2016
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