All in Our Family

Merry Christmas 2016

Our Christmas cards are in the mail. It is the first year in decades that I did not write, print, fold, and send along an annual Christmas letter. I have had an affection for Christmas letters since I was in Jr. High School. I think I wrote my parents' at least once. I would have bundled up against the Ohio cold and walked to my grandfather's real estate office where I typed the letter from my mother's handwritten notes. I likely used all of Mrs. Sawvey's, my grandfather's secretary, correction squares fixing my mistakes. I diligently read every letter our family received back then, keeping many of them long after Christmas. I still do. Annual Christmas letters have waned in popularity since I was in Jr. High. We get fewer and fewer every year as our culture moves online. Similarly, we are taking baby steps away from those square correction tape days. Last year I sent a paper version of our letter with our cards, but posted it online for those who know us only through following Nathaniel's journey here. I dropped the printed letter completely this year. But the goal is the same regardless of the delivery - to reconnect, to share our highlights and joys, to wish you a Merry Christmas.

Happy Fourth Birthday Nathaniel

Nathaniel turns four tomorrow. Since it falls on Thanksgiving Day this year, we gathered family and friends a couple weekends ago to celebrate. This birthday carries some significance - the first that Nathaniel can eat cake. I decided on a Very Hungry Caterpillar theme to commemorate and had a lot of fun making with the preparations, especially making the cake decorations out of fondant. Nathaniel blew out his candles and then signed "awesome." Yes, Nathaniel everything about this milestone is awesome. Happy Birthday!

Camping with a Tracheostomy

When I googled "camping with a tracheostomy" last week, I mostly found short lists of summer camps that accept medically complex children. A few forums suggested using an RV for traveling and camping experiences with a trach kiddo. We rented a large RV in 2008 and took five children to the Devil's Tower, Badlands, Mount Rushmore, Yellowstone, and the Grand Tetons. I can easily imagine how convenient it would be to "RV camp" with Nathaniel. Except we do not own an RV; we own a tent.

What Nathaniel's Grandfathers Taught Me About G-Tube Feeding

Rich's father lived with us when Nathaniel came home in August, 2013. He was ninety-two years old at the time and required assistance with meals. My days were punctuated by preparing, serving, and keeping Grandpa company while he ate breakfast, lunch, dinner. Our family talked at length about how a new baby with intense medical needs would intersect with the responsibilities we were carrying at the time for Grandpa. Grandpa participated in some of those discussions. He firmly encouraged us to move forward with fostering and eventually adopting Nathaniel. He expressed a trust not in our ability to manage the additional demands, but in God's ability to help all of us adapt and make room for a little one who needed a family. "I can make myself a peanut butter and jelly sandwich when I need to," I remembering Grandpa offering.

Nathaniel qualified for private duty nursing support, and I was immediately faced with the question of how to use that help. Do I leave Nathaniel in his bedroom with the nurse for the hours I spend in the kitchen and with Grandpa? Or do I include Nathaniel in those times and try to merge his medical care and staff intimately into family life? His brief stay at the pediatric rehabilitation hospital influenced the decision strongly. The morning of Nathaniel's discharged, I met a Craigslist seller on my way to the hospital and bought a used high chair. Three hours later, Nathaniel was within cane's reach of Grandpa at the table. Grandpa and Nathaniel spent mealtime side by side for close to year. Our day nurse at the time, Danielle, attended to Nathaniel while I prepared Grandpa's meal. Danielle and I slowing altered Nathaniel's g-tube schedule to match Grandpa's meal schedule. Daily at breakfast and lunch, she would warm her packed food and the four of us, plus any older boys who where home at the time, would gather around the table.