Let me be perfectly frank: I thought for months that I could give up this blog and never miss it. After the New York Times disaster, the cruel emails and comments, the question of guilt versus innocence, the accusation that I am, as a mother, somehow in part to blame for the controversy that surrounds Shaken Baby Syndrome, I was done. It’s not that I felt the other side had won, it’s not that I believe for a second that the people who dismiss Shaken Baby Syndrome have any credibility, but my blog had suddenly been transformed from a haven of love and support to a means to spread hatred and ignorance. I have two toddlers, Noah who is now two and a half, and Avry who is nearly one and a half. I decided I didn’t want to blog. I wanted to live, put my public self on the shelf for a bit, look for joy in the crevices of everyday life.
And boy, did I find it. I continue to find joy everywhere, with the quietest babble, the goofiest grin, the snuggles that force me to close my eyes because it hurts so good. In the last four months since I’ve posted a blog, Noah has continued to be seizure free. August will be the one year mark. Now, not only is he seizure free, but we have finally weaned him of all anti-seizure medications. I always knew the seizures and drugs were stealing bits and pieces of Noah from us, one head drop at a time, but only after many months of seizure freedom have we been given the chance to really see our little boy. Though still tremendously behind developmentally, Noah’s quirky personality is beginning to shine.
He sits on my lap and looks into my eyes, fluttering his own eyes, dark lashes curled into oblivion. He cracks a smile, sticks out his tongue, and then reaches to touch my own mouth, looking to discover something new. “Mouth,” I say, kissing his fingers. He giggles shyly, as though I’m a girl with pigtails that he has a crush on.
Noah tosses his head back and forth as we ride in the car and listen to The Indigo Girls loudly. There’s something about those chiming voices that he loves. I turn the music down. “More music?” I ask, looking to Noah through the rear-view mirror as I’m stopped at a light. He signs “more” by crashing his two fists together. He squeals when the music fills the car again.
We spend almost every day outside, taking walks in the Radio Flyer wagon, playing at playgrounds, or just running barefoot in our own grassy backyard. Avry, a spontaneously combustible personality, sprints from one flower pot to the next, plucking marigolds out of the dirt and tossing them onto the ground. He laughs, exposing his white teeth, each separated by a perfect, narrow gap. “No,” I say in my best mean mommy voice (which never works) and he runs across the yard. Noah, awkwardly skinny and heavy-footed, follows him. Avry laughs as Noah tackles him and sits on him. Later that afternoon they’ll fight over who gets to hold the sprinkler; Noah will laugh at how Avry crashes into the dirt face-first after going down our tall, red slide; and they’ll suck the water out of the keto-friendly popsicles I’ve made, little fingers tightly gripping the green plastic handles.
We’ve come so far this little family. We’ve sat in courtrooms and in intensive care units. We still shuffle Noah back and forth to five therapies a week. We see other toddlers speak in complete sentences and we sometimes cry – because that’s always going to be hard, being cognizant of what might have been. And while somewhere a panel of Judges with the Virginia Supreme Court is reviewing Trudy’s third petition for appeal, we are playing in the dirt, kissing our babies’ feet, finding joy in the nooks and crannies of a life that once seemed bleak, but that now feels immeasurably full of possibilities.
HI, I have been following your story from the beginning and I am deeply grieved to report that some of my dearest friends are struggling with their own child/grandchild who was shaken by their babysitter yesterday and is in the hospital in Dallas. The babysitter is currently in jail and if you have any advice for my sweet friends, I would love to pass it on to them especially in these very early days of their fight for their 3 month old son!
Hugs to all of you! Please know that we in this electronic void continue to pray and cheer for you all on this crooked road to recovery. I will not voice the adjectives for the naysayers, but given my gene pool, the language will be colorful!
That being said, I think you two are amazing parents!!!
Noah’s progress is phenomenal…prayers continue…
As you can tell by my delayed response; I hadn’t checked your blog for an update in quite some time. I was religious about checking it daily… then weekly… then even monthly; but, it had fallen short with posts. However, not one.single.day goes by that I don’t think about Noah. I have been reading your blog since the very beginning. I have shared your story with many. Prayed for you and your family. It breaks my heart to think that your blog became a place for negativity; rather than what you sought out to accomplish… a safe haven for your words. Please know you have a lot of people on your side; whom look forward to posts such as this one. I am so happy you found the words to ‘Measure your Joy’ and share with all of us. I won’t wait so long to check back again, in hopes for yet another update. (((Hugs)))
Erin, thank you for posting an update. My youngest two children are the same ages as your boys and I love reading about how they’re doing and interacting. Maybe Noah is behind a bit developmentally but when you chronical how they interact, it doesn’t sound any different than my Gracie and Jack. I love to hear good news and how prayers have been answered so pleae keep blogging- even only occasionally. I still pray for your sweet family every day. We aren’t far from each other. I only hope to run into you at Wegman’s one day.
I have really missed reading your blog. I do not care what anyone has to say about your situation as far as the negativity goes. You and your husband are both wonderful parents. You are both full of life, love, joy, hope, compasion etc., etc. You are doing such a great job with your boys. Enjoy every minute of their lives as they grow up way to fast. My oldest girl will be ten and my twins will be six this year. Time sure is flying by. God Bless you and your family and hugs to all of you.
I have followed your blog for a long time. Let me start out by saying that I think it is sad how mean people can be. What happened is not your fault. It makes me happy to see how much you are enjoying your babies! Keep loving on them! I can tell just by reading your blog what a wonderful mother you are! I will keep praying!
jenn
I have missed your posts and this one is so eloquent and poetic and beautiful…I can see vividly everything you describe. You are a captivating writer! I am overjoyed that Noah has made such remarkable progress and that he has a wonderful little brother to share his life with!
Thank you so much for updating your blog. I feel like in some remote way I have gone through this with you. I have cried and laughed and had my heart torn apart right along with you and your family. I have prayed for Noah for so long and now to see that he is almost a year without seizures is nothing short of a miracle. Those that doubt the power of the Lord need only look at where your family has come from. Be blessed and no matter what anyone says about you or your family, you are wonderful people and doing a great job!!!
Erin,
A lady in my office heard of your story on a radio station not long after Noah got shaken and she came to work and told us about little Noah. My office has been following Noah’s Road ever since. We have prayed for your family and for little Noah so much. Noah is a month or so older than my daughter and I, like some of the other posts, have thought about you so many times. We have kept up with Noah through your blog and we LOVE reading about his progress! We check your blog religiously and when one of us realizes you have made a new post, we yell “There is an update on Noah!” and we stop what we are doing and go read it. That is what happened today….the other lady checked today and saw that there was an update and we just wanted you to know that your blog does help people. Even though we do not know your family and Noah, we have cried from our desks and our hearts have ached for all that you have been through. Thankfully I have a wonderful babysitter for my daughter and have never worried about her being taken care of while I am at work but I have suffered loss….I have miscarried twice, once at 17 weeks pregnant and then just recently at 14 weeks pregnant. The “what ifs” will always be and I can understand where you too will always have them and when I read your blog I can’t imagine what you are going through everyday. Put your arms around Noah and Avry and just love, love, love them as I know you will and always do! And just know that there are people all over that read your blog and pray for Noah and his family every day! You and Noah are an inspiration to so many people!
Erin,
We are delighted to hear of Noah’s progress. Like you, our son was shaken at day care and we also noticed a positive change when our son was taken off the meds.
We would love to speak with you and your husband offline if you one evening after our kids are all asleep. I hope we can connect. i think we have a lot to share to help our families. Please email me if possible through my login and we will call you from there!
I would like to say thank you for continuing to post. It reminds us that there are success stories and that we all need to be thankful for what we have. You are a strong woman.
Soooo happy for you! I still pray for you every night! I teach special needs children and am aware of your very special child. Thanks for sharing! I was worried! May god bring you peace and understandin
Erin,
It so gladdens my heart to see this wonderful post about the boys after such a long period of absence! I would keep checking back to see if you had any updates and then worry that things had taken a turn for the worse and your bog wasn’t allowing comments either. My son is the exact same age as lil Noah and I think of you and your family so very often, hoping and praying that everything will work out for you guys and that Noah will grow to be a healthy, beautiful child. So happy to know that Noah’s seizure free now. God bless him.