Dear friends near and far, prayer warriors, and cheerleaders of my fighting angel from across oceans and around the globe, I have news. And it’s BIG.
I wish you could see me as I type this. Aside from sitting in my typical Indian-style position, I am nearly shaking. I have been thinking about this blog and have been wanting to write this blog for so long, but I am a believer in Murphy’s Law. My son was shaken a year and a half ago, so since then it’s been hard to believe that our family could have any sort of fortune – aside of course, from still having Noah, which has been a great, great gift from God. I see that, and in the Shaken Baby community we’re the lucky ones, but in others’ eyes we’re the people you think, “Thank goodness we’re not them!” We’ve been battling vision issues and severe developmental delays, but all that time I’ve thought how easy life could be if we didn’t have the seizures. We have accepted our fate and our life, but watching Noah’s head drop dozens of times a day, watching him doped up on drugs, being helpless day in and day out, has been a nightmare.
On August 2nd Noah started the ketogenic diet. This diet is like no other. It is 90% fat and low carb. We weigh every gram of food that Noah eats. (For some perspective, he gets about 36 grams of fat per meal, 4 grams of protein, and 4 grams of carb.) So, there’s no more restaurants, no more cookies or cupcakes, no more tossing leftovers on his tray and letting him go at it.
But guess what? 17 days into the diet and NO MORE SEIZURES! Noah has now been seizure-free for 36 and a half days. For 36 days I have been able to write ZERO.
Here comes the panic. The need to knock on wood, cross fingers and toes, or better yet, hit my knees and pray that they never come back. I am part of a wonderful community of parents who suffer just as we do, parents whose children have various forms of epilepsy, and I have learned from them that this seizure freedom could be short-lived. It might be gone tomorrow.
In the meantime, while there is no celebrating with champagne or toasting with wine, we in the Whitmer house are as overjoyed as we’ve been in a long time. A long, long time. We take this joy and we keep it inside. I let it motivate me towards cooking two hours almost every night, preparing a couple days’ worth of meals for Noah. This joy gives me unending patience while Noah tosses my food onto the floor because he’s going through a – yay! – toddler phase. Mike is down on the floor playing with the boys and smiling. I haven’t seen his face brighten like that since just before Noah was shaken.
And Noah. Dear, precious Noah. He is reinventing life, exploring his world for the first time. He can focus now and is playing with his toys longer. He is throwing everything in sight, loving to hear the different sounds a remote, or a toy, a ball, or a cell phone – yikes! – makes as it hits our wooden floor. He is jabbering as he eats or spits out the food I’ve made for him. He’s hugging his brother and kissing him on the forehead. He mostly ignores Mike and me now – too busy for the lovey parents, too much to do in his little world, and so little time when the lights are turned out at 6 PM every night! He is magic. And all because of this magic diet.
It’s not coincidental, I think, that a local church held a prayer service for Noah within a day or two of Noah going seizure free. Nor is it a fluke that after a year, countless sad blogs by me, and thousands of prayer warriors from around the world reading my posts and praying for Noah, that we have more hope than ever for a future. I am humbled. I am thankful. Please keep the prayers and well-wishes coming, and let’s see where Noah will take us on this journey. Sheesh, it’s been a rollercoaster. But we’re smiling, at least for now, as we go up hill!







