One day, around 3 years ago, we were a family of three. And then we got a phone call from our social worker and all of the sudden we were a family of five. Twin girls had been born and birth mom wanted to make a plan of adoption. We drove up to the hospital the next morning and met the strongest warriors we’ll ever know, Ava and Cora. 4 lbs and 2 lbs respectively, no prenatal care, a lot of substance use, irregular MRIs, oh and did I mention there were TWO of them? The odds were stacked against them and our social worker was very clear about that. This was going to be hard, he understood if we said no. If you know me you know you can’t take me to a hospital and show me some babies and then expect me to say no. I said ‘I’ve laid eyes on them. They’re mine now.’ So we said yes. Yes we will do life with these girls. Yes, when they are ready we will take them home. Yes, we will be mom and dad and big brother. Yes, we will roll with the punches. And man did those punches come. But these girls are stubborn. And so are we. We were told by plenty of doctors not to worry. Twins are often delayed. Babies with drug exposure are often delayed. Premies are often delayed. In all of those cases and with all of the therapies they were involved with, they would catch up by their first birthday. They didn’t. So we started to look for other answers. It felt like we were already seeing so many specialists, but there were more to add and eventually we found ourselves at the Neurogenetic Clinic at KKI in Baltimore, Maryland. Over two years old and we finally got a diagnosis. TUBB3 This lead to further diagnoses. Cerebral Palsy. Cortical Visual Impairment. Sometimes people ask what all these things mean, what good are diagnoses like these, what can they do for us. I think people want to hear that we have answers, but a proper diagnosis doesn’t necessarily mean answers. It might mean better treatment, the right therapies, or it might help us test the girls in a more effective way but all these acronyms aren’t going to solve any of our problems outright. As parents I can say a diagnosis has given us the language to explain what we’re seeing and experiencing. It has opened conversations with not only doctors and other professionals but with family and friends. It has joined us to this fantastic TUBB3 specific community where we can learn from each other, share our joys, share our sorrows. Camaraderie is a beautiful thing. The girls turned 3 in December. Ava walks with a posterior walker. Cora has just started to crawl. Both girls are learning to speak with communication boards though for the most part they just request to watch Bluey. They love their family, they laugh at their brother (he is an extremely hilarious dancer) and they play with their cousins. They are adored by everyone. They are the celebrities of our local therapeutic rehab. They are a beacon of hope. They teach us new lessons daily. Lessons about determination, grit and courage. And they watch a lot of Bluey. Which brings me to my favorite quote from my favorite episode, Cricket. “But look, as you grow up, you’ll face harder things than a cricket ball and you’ll have two choices: Back away and get out, or step in front and play a pull shot.” -Rusty’s Dad To the girls who face hard things, who never back away, who always (metaphorically) step in front and play a pull shot.
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