Hi, my name is Rebecca but I've gone by Becky most of my life. My husband Scott and I were both born and raised in Las Vegas, Nevada, have been married for 7 1/2 years and have 3 kids aged 5, 3, and 16 months. Before having kids I taught middle school in inner city Las Vegas and I try to use what I know about kids and learning in raising our kids, but in the thick of it, that isn't an easy thing to do. I miss working and feeling like I am contributing to society on a bigger scale, but I am so grateful that I am able to stay at home with my kids. In all the busyness of raising 3 kiddos it is really hard to find time to do things that I love (reading, interior decorating, graphic design) but I try in the moments that I'm not falling over tired.
Miggy: Hi Rebecca and welcome. I'm so grateful to have you here on This Little Miggy today. You have 2 children with 2 very different diagnosis. Let's start with your daughter, can you take me back to the day you knew something wasn't right? Was this during an ultrasound, shortly after birth or sometime later? How long from that first inkling did it take to get a diagnosis and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Rebecca: The first half of my pregnancy was very typical, and I had no concerns going into my 20 week ultrasound. The technician confirmed the gender, and sent me back to a room to wait for my exam with the doctor. My husband came from work for the ultrasound, and since I wasn't told anything by the technician, I told Scott he could head back to work, that he didn't need to stay for the doctor part. The doctor came in and told me that there were some concerns, that her feet were clubbed and she had a choroid plexus cyst in her brain, which together are markers for some serious issues. The fact that I was alone left me in shock. I didn't even cry until I was in the car, calling Scott. I wish the technician had told my husband he might want to stay, as she was standing right there when I told him to leave.
We were sent to a high risk specialist and had the longest week of our lives waiting for the results to come back if our baby's condition was fatal (trisomy 18). That week, I didn't even feel pregnant. I felt empty. Like I didn't want to stay attached. When I got the call that the test had come back negative, I was alone, and I felt her move for the first time in a week, and in my mind I heard her say, "Mommy, I'm still here." It was a sweet confirmation to me that she was ok, even though we knew that things might not be typical. We didn't get her actual diagnosis of Arthrogryposis Multiplex Congenita until 18 weeks later after she was born and in the NICU.
After the diagnosis I had thoughts of would she walk? Would she be able to hold a cup or a pencil? Would people judge her? Look at her funny? Would she be in pain? Do we need to buy a new house that doesn't have steps? Over time, those questions still exist, but I realize now that the answers don't matter so much right now. We just take each day and each question as it comes and cross the bridge when we actually get to it. She has an incredibly strong spirit. She has an infectious smile that lights up any room and she brings so much joy to our lives. That is what matters. Not if we need to have a wheelchair accessible house 5 years from now.