Our daughter Hannah was born 11/22/17. She's our fifth baby and a welcome surprise caboose for our family. At 6 days old she was diagnosed with a rare condition called cricopharyngeal achalasia, also known as cricopharyngeal hypertrophy, bar, or narrowing. It is a congenital defect involving the upper esophageal sphincter muscle that is too large and impairs the swallowing process, kind of like a pinch in a hose.

At 8 days old Hannah underwent a procedure to dilate her esophagus and reduce the muscle with Botox injections, but unfortunately, the procedure was unsuccessful. On March 16 she had a myotomy of the muscle, and she is now able to swallow. After 4 months on a feeding tube, she is finally able to eat by mouth.

This is her story that is still being written.

Monday, January 15, 2018

Passing the hat



My parents spent 2 years on a church service mission in Nicaragua, one of the poorest countries in Central America. People live on $2 a day and are lucky to have a house with corrugated metal walls. Their fences are tree lines. Their meal is rice and beans three times a day. Their livelihood might be reselling trinkets. They have almost nothing.

When individuals have a crisis or medical need and experience a financial burden beyond their capacity, they "pass a hat" around a room of friends and family members.  And even though they have very little themselves, they generously contribute what they can into the hat for the beneficiary. And the following week, the hat is passed for another friend or family member in need. While each contribution may be incremental, when pooled together with others, it adds up to a meaningful sum for the person receiving it, and helps to ease their burden.

I am not comparing our situation to the dire poverty of a third world country.  We have infinitely more. We have more food in our fridge and pantry than they have in a year. We have insurance. We have access to the best medical care in the world. We invest in the care of the most helpless of individuals and think about costs after the fact. What a blessing it is to live in such a society. But I do feel impressed to "pass the hat" nonetheless.

I find myself compelled to buy a hamburger for the homeless couple on the corner. I am compelled to donate to a friend's cancer fund. I am compelled to help a neighbor cover funeral costs. I want to contribute to a friend's IVF (in vitro fertilization) or adoption fund, and I donate to humanitarian aid when communities are hit with catastrophe. All worthy and meaningful causes.

So I am reconciling my pride and passing the hat for our own family. Many people have asked me what we need or how they can help us during this crisis. At first I didn't know what we needed. Over the course of the past months, I have learned that it is okay to ask for help.  I have asked people for rides, for meals, to pick up my library books, drop off a gallon of milk, watch my kids, hem a skirt, plan a birthday party, and more. And still people want to help. We are truly grateful for all the help and service we have received. If you want to help further by contributing financially to our family, please consider donating through YouCaring. Every contribution is meaningful to us. Thank you for blessing our family and for being a part of Hannah's story and our lives.

-Chris & Jenny

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