Blythe's Miracle 14 Months Post Diagnosis
I don’t prescribe to the premise that marriage should always be 50/50. Sometimes Blake comes home to a wife that’s lost her cool with the kids more times than appropriate and he lets me vent a little, raise my voice in an enthusiastic re-telling of my fight with a 4-year old, and kindly suggests I slip out to go for a run. That’s carrying more weight than his share. And when he’s feeling particularly stressed, I keep those same re-telling’s to myself (actually I call my mom and vent to her instead), I try to get the kids outside, make dinner, clean the kitchen, and bathe the kids. And give him uninterrupted time to talk it out until he’s recharged with good energy.
Likewise, I don’t believe parenting should be equally divided among all our kids either. Sometimes one child needs more attention than the other. And their needs and time commitments are constantly changing.
When Blythe was born, Crosley needed potty training, and discipline, consistency, and near constant attention. Blythe slept through the night and most of the day too. She pooped and nursed so regularly that I could care for her on autopilot. In fact, I have little memory of Blythe in her first 6 months because Cros required so much attention.
Crosley was used to having more than her fair share of our time, but that all changed last year when Blythe was diagnosed with a disease only treated by diet. We spent months learning about Glycogen Storage Disease, nutrition labels, and practically becoming crash-course dieticians. I’ve spent hours talking to medical experts and others living with the disease.
The education was a steep learning curve, but that was nothing compared to the emotional toll. I’ve caught Blythe sneaking food behind the bed. We’ve listened to her beg for food when she’d already eaten more than her diet allows. And we’ve sat in the guilt of putting her to bed to realize an hour later we forgot to give her a bedtime snack.
Then there was the very public fit when Crosley took a cupcake away from her at a birthday party. The time her heart broke when she caught us eating ice cream at the lake. And that one time I sat in the car crying because the sugar-free soft-serve at Yogurtland had sorbitol in it. Half the tears attributed to my self-centered frustration that I even know what sorbitol is.
This last year hasn’t been easy. And it certainly hasn’t been 50/50 with our girls. It hasn’t even been 40/60. Blythe has required so much attention, education, restraint, and prayer that when I finally felt good about her diet, guilt set in over the fact that mine and Crosley’s diets had reduced to eating unhealthy processed foods because I didn’t have it in me to focus on our nutrition too.
But I’m not going to waste any more time beating myself up over it. We’re all trying our best with what we’ve got. We’re constantly striving to be better. Reevaluating. Correcting. And refining. And trusting, and risking, and leaning on our village, but also paying it forward and back by being there for them when they need it too.
It finally feels like we’re in the groove with Blythe’s diet. She’s a good little eater, we trust her when she says she’s hungry (usually), and she’s thriving. Crosley’s a good little girl too and I’ve been so proud of how she’s become a vocal advocate for her sister’s diet.
And then something miraculous happened. And actually we’re still in shock over it. At Blythe’s semi-annual check-up in September, she had her annual ultrasound, followed by an appointment with her metabolic doctor and nutritionist. It was a long day. And when the doctor walked in, she looked excited. She said she looked at Blythe’s scan three times and then called to make sure the scan was correct because it showed that the liver was A NORMAL SIZE!
I cannot begin to explain how incredible this is! And what’s more, three markers we follow that have been far out of range (triglycerides, ALT and AST) have reduced substantially! Two are barely over the ideal limit and one is actually within the normal range. Her bloodwork looks almost the same as a child without GSD! We’d heard this was a possibility, but that it was a longshot. But God is good and He hears our prayers.
This doesn’t change Blythe’s diet or her condition (there’s currently no cure for Glycogen Storage Disease IXb), but it means she’s on track and healthy and gives us validity that we’re feeding her correctly.
From the bottom of my heart I want to thank everyone that continues to pray for our sweet Blythe. God continues to do amazing things in her body and our lives and he can do it for you too!
Ask and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. Matthew 7:7-8