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When there was an emergency...

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When we dropped Thea off at my mom’s house that November day and left for our day trip, she seemed fine.She was excited to spend the day with her Nana and kissed us goodbye as we left with no complaint.Tyson and I enjoyed our day in LA and as the evening approached, we said good bye to our friends and prepared to make the drive home.As we walked toward our car, my phone rang suddenly.My mom was on the other line letting me know that Thea had been acting strange and tired for the past couple of hours and that she had just thrown up.My heart dropped as I told my mom that she should take Thea to the hospital.Thea can’t fast and throwing up means she hasn’t got any food in her stomach to help her cope with any stress her body is under.

We quickly paid our parking fee and pulled out onto the freeway.We were only an hour away, but this was LA on a Friday and our car was inching along the freeway at 5 miles per hour.I could hear the panic in my mom’s voice as she responded to my instruction…

Coping as a Rare Disease Mom

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When Thea Finished Her Puzzle...

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The Christmas holidays were a wonderful time for our family.Tyson had the whole week off plus a few extra days for the New Year.Time seemed to move more slowly as we played games, ate foods with ridiculous amounts of butter, and stayed in our pajamas until noon.Thea loved all of the decorations and the lights.When we drove at night, Thea would exclaim over the lit trees, the reindeer on roofs, the giant wreaths, and the candy canes.We went for strolls around the block at night enjoying the holiday displays and meeting neighbors for hot chocolate and small talk. On Christmas Day, we woke up and Thea found a baby doll crib under the Christmas tree from Santa.Her eyes grew wide and, without even touching the crib, she ran up the stairs to her room.She dashed to her baby doll and whispered in quiet awe, “Baby!Santa! There’s a bed for you!”She returned to the Christmas tree and the cradle and snuggled her baby into the sweet little bed, overjoyed with her gift.She opened each gift after t…

When Thea had surgery...

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The first time the doctor suggested surgery to straighten Thea’s eyes if patching didn’t work, I dismissed it.I was sure the patching would work, and we would be fine. But despite our efforts, her eye stayed shifted to the side and over time it grew worse.In fact, both eyes had started to wander in opposite directions whenever she wasn't looking straight at us.After three years of patching, the doctor again mentioned surgery.I told her I would need to talk to our Nero-metabolic doctor.I was sure that he would say no to a surgery.She had a rare disease.Anesthesia would be risky.But to my surprise, my Neuro doctor also recommended the surgery.He said it was not just a cosmetic surgery.It could help with her balance, and she may have better vision in the future because of it. I went ahead and scheduled the surgery with misgivings.Tyson was even more uncomfortable.We postponed the surgery and gave ourselves more time to consider the idea. What finally committed me fully to the surger…

When We Were Grateful...

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Last weekend, my friend hosted a bunko party to raise funds for tango2 disease.She spent hours creating the invitations, decorating her house, organizing beautiful plates of snacks, and gathering prizes for the participants.There were purple and green endive leaves and garlicy bread with various dips.There were cups lined up next to bowls with scoops to fill them with pretzels, popcorn, chocolate, honey peanuts, and tiny ginger cookies.Though there were many different circles of friends mixed together, everyone chatted easily and cheered as the dice rolled.The prizes at the end seemed suited exactly to the winner of each one.It was truly the perfect party.Everyone was so pleased with the food, the gifts, and the company.As the night ended, I hugged my friend tightly and I thanked her, but I didn’t have the exact words to tell her how much this meant to me.
On Thursday, I took Thea to her gymnastics class and found out at the front desk that the instructor had hurt her knee.Because Th…