CPN | One

One

I can’t stop thinking about cake. Or, rather, alternatives to cake. My sweet son will turn one this month, and we are preparing for his first birthday celebration. We are thrilled to reach this milestone, though I have no idea what to feed him as we sing him ‘Happy Birthday,’ as he does not yet eat solids. Our boy was diagnosed with mitochondrial disease at four months old, though he exhibited symptoms from birth, including difficulty latching and sustaining energy for eating.

Mealtime is a complex endeavor in our household. As I write this, he is asleep in his high chair. His feeding pump is connected to his NG tube, providing him his formula. If we can get four ounces in him over an hour without prompting a throw up, I will be ecstatic. Prior to starting the pump, I gave him some of the 12 doses of medication he takes each day to keep his body chemistry regulated. Once the pump was running, I got a few bites of pureed carrots in him before he fell asleep, to help what we anticipate will be a very long and complex transition to solids. I will do some version of this routine again in a few hours, all the while thinking about our upcoming appointment with the surgery team at our local Children’s hospital to discuss placing a G-tube.

The past year has been filled with both subtle and shearing realizations about the true complexity of our son’s disease. The stay in the NICU due to low blood sugar. The phone call at six days old telling us his newborn screening was abnormal. The traumatic weeklong hospitalization when he was two weeks old, followed by two other in-patient hospitalizations, ceaseless clinic visits, and innumerable blood draws from his scalp. The harrowing undercurrent of meaning in terms like ‘early intervention’ and ‘full potential.’ Accumulating diagnoses including metabolic acidosis, hypotonia, infantile spasms, visual impairment, and developmental delays.

I loathe the term ‘failure to thrive,’ though that’s on the list as well. Nobody in our family is failing – everybody—including our son, his daddy and me, and his incredible grandparents—works so diligently to make our time together happy, safe, and full of love.

Despite the challenges of the past year, our son has brought unmitigated joy to our home. He is tender, brave, and silly. He has an eyelash that is so long it curls in on itself and rests on his cheek. His blue eyes remind me of the Puget Sound. I am so grateful for the patience and perspective he has brought to my life, and that his upcoming first birthday celebration truly feels like one. We may not have the ‘normal’ experience of a cake with a candle and a baby with a fist-full of sugar, but we have become used to embracing our own version of normal. For our son, it may just mean skipping the birthday cake altogether and going straight for a spoonful of frosting. Because that’s what our lives have become – getting right to the good stuff every chance we get. Now that’s something to celebrate and be thankful for.

 

 

Liz Morris loves exploring complex questions. Her professional experiences in project management, librarianship, and community development prepared her well for her favorite role as mom to Colson. Colson, impacted by mitochondrial disease since birth, inspired Liz to face the complicated aspects of his life through writing and advocacy. Liz serves as a family advisor at Seattle Children’s Hospital, and is a volunteer ambassador for the United Mitochondrial Disease Foundation. She is committed to helping families find the information they need to help them live well in the face of life-limiting illness. You can find Liz on Instagram @mrsliz.morris