Notes from a Rare Disease Mom

Once a parent from our support group posted about her day.   It was full of battling with her insurance company, driving to therapies, and a daughter who wasn’t feeling well.   “Does this get any better?”   She asked in frustration.   Her question stayed with me for days afterward because I could picture exactly how her day was going.   I am very familiar with days like that.   I wanted to reassure her but when I tried to envision a time when life would be easier, my experience with life so far told a different story.   Sometimes my life gets easier and sometimes it gets harder, a lot harder.   There was a time when I thought college was hard, and now I look back at those carefree college years with envy...   I don’t think there is ever a life free of difficulty, but I also don’t think the bad days last forever.   Some days gratitude and joy come easy and some days they just don’t.   I was talking to another mom at Th...

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...

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...

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.      Tango2 bunco party! On Thursd...

Thea was home sick with a fever when I first learned about Sammy’s death.   I was making pumpkin pancakes hoping that extra carbs might give Thea a boost as her body fought the latest sickness going around.   I picked up my phone when it beeped and saw a text from my sister-in-law that said “OMG Sammy!   What happened?”   I ran to check our Facebook group with a growing sense of dread.   I scanned the posts until I found the announcement that Sammy had passed away in the night.   I was in shock.   Sammy was the first tango2 child that we found in the world.   He brought so much joy and hope to our family.   How could he be gone?   In a flash, I feel small and alone.   Our children are sick and there is nothing I can do about it.   I can’t stop it from happening.    Sammy Another tango2 mom and I message back and forth throughout the morning.   Her thoughts and texts bring me some comfort.   I...