Dr. D seemed a little distant like he didn't want to say too much, but everyone was all smiles and calm. And I couldn't see through it. Looking back now, the tension and anticipation of letting me in on what they knew about my daughter was obvious. He examined her but really offered no information, just answered some questions. The only real concern I had was that she seemed out of it sometimes. Was she "all there"? I told him how she was sitting on the floor with the boppy around her when she fell face down with her arms pinned back, stuck. But didn't cry for me or get frustrated. Just laid there. Was that "okay"? And I had caught her staring off into space a few times where grabbing her face couldn't even get her to reconnect. Were these seizures? He said that the news Melissa was about to share with me may shed some light on that. I still wasn't too alarmed. They said she was fine a few weeks ago, so even if there was something wrong, it was no big deal, inconsequential.
Then she dropped the bomb. Abby is missing a significant part of her chromosome 20, she said. Pit in my stomach and lump in my throat as I write that even today. She immediately walked me through her cartoon diagram of what the chromosomes should look like and what Abby's look like. I was holding her on my lap and was in learning mode, not freak-out mode. She went on to say that this disorder is spectrum...some cases are severe, some mild. That there isn't a lot of literature on this disorder because it's so rare and the technology to detect it is less than 10 years old. That some common issues with this chromosome deletion are delayed physical development, delayed cognitive development, epilepsy, heart and kidney abnormalities. That they can't gauge how severe her cognitive delays will be until she's closer to school-age. Dr. D was just looking at me, not saying anything. Compassion and sadness in his eyes. I can still feel that. But she was describing the severe cases, the "other" cases. Not my kid. We were given the green light, the assurance that Abby was fine. Just a little behind but not to worry, she'll catch up. So she couldn't be talking about my daughter. I know words came out of my mouth before this question, but I don't remember what they were. "So, I think about my family's future. Daydream. I think about Lucy and Abby walking to school together. Playing soccer together. There's a reason we wanted our girls so close together in age. Could she still lead a 'normal' life. I know 'normal' is a bad word, but you know what I mean. Like what you grow up thinking normal is?". And Melissa smiled. I don't like her smile. "Well, she could go to the same school as Lucy with an IEP and special help. And she could play soccer, just probably not varsity." Lady, I don't really care if she's a varsity soccer star. I just want you to tell me that my daughter will be okay...normal. That she'll grow up like I grew up. That Lucy will have a best friend in her sister. That they will be on the same plane. That my life hasn't just collapsed under me. And then she grabbed Abby's little foot and said "and there's even Olympics for you, Abby". I was confused for a split second. The summer olympics had just begun. So, you're saying she's going to be an ultra competitive rockstar athlete? No, she just looked in my 10 month daughter's eyes and told her that she had the Special Olympics to look forward to. I lost my breath. I wanted to run. This WAS NOT happening to my baby. To me. May sound selfish, but just bein' honest. My heart was breaking.
She said that we were doing everything that she would be telling a parent to start doing...physical therapy, speech/food therapy and an EEG scheduled to rule out epilepsy. So our yesterday was no different than our today. Except that this isn't going to go away when she's 2 or 3 years old, she said. Well, that's different than our yesterday, you idiot. I remember looking up at Dr. D when she was all finished rocking my world. And I cried for the first time. "I don't even know where to go from here. What do we do?" And he said, "have hope. I have hope for her." He was holding her at that point. I'm crying again remembering how good that felt to hear. I want to hug him right now for giving me that moment. He said that the important thing to take away from that day was that she was progressing which is extremely important.
So, that's it. The day that I learned my sweet Abby has a 20p13 chromosome deletion. A disorder so rare it goes by its clinical description rather than a real name. The day that I became a mom of a special needs child. The day that the vision I had for my family broke into pieces. The day Lucy's relationship with her little sister changed to something I've never had, and will most likely never fully understand. But how cool is that? They will have some kind of bond. They already do. Will she ever feel burdened? The day that my idea of 'normal' started to change.
We had to get Abby's blood drawn again downstairs immediately afterward and I was in robot mode. They had smoothly drawn her blood in this lab twice before. Well, this chick sucked. She couldn't find her vein, and I don't know what the heck was going on after the needle was in, but Abby was writhing in pain. Saliva bubbling, face purple red. I was bawling and screaming at the nurse. I've never been so rude to a stranger in my life, but I was mad. Like, crazy mad. And I was praying thanks to God over and over. Thank you, Lord, that my daughter doesn't have something that causes her pain. Seeing your baby in pain is an unbearable cruelty. And I THANK GOD that she doesn't hurt.
Life got hard. Or is it...life got real? My daughter is different, delayed, and I don't know how different or delayed until more time passes. The only thing the long list of neurologists, geneticists and other doctors can tell me is that her future is an unknown. A difficult thing to wrap my head and heart around. She may go to a mainstream school or a special school. I don't know if she'll be able to live independently or what these seizures are doing to her brain. She may get made fun on the playground. But she's not in pain. She's not dying. She's alive. God's breath moves in and out of her every day. And she's the happiest baby I've ever met. Her smile is lights out.
Sometimes guilt rushes through me when I feel like life is hard. Like we've been handed a raw deal. For one, I wouldn't trade my sweet, pure, peaceful, joyful, angel of a baby for anything. Secondly, there are far worse situations. I'm reminded of that when we're at one of her 1 million doctor appointments and I see a child in a wheel chair who has no control over his own body. Or seeing a bald 8 year old girl being wheeled out of radiation awaiting Abby's MRI. Yes, it can be a lot worse. But pain is pain. It's our pain. My pain. And I'm trying to own it so that I can move past it.
Fast forward three months and I feel like I'm getting there. Joy surrounds me like crazy and I spend less time sitting scared in worry and more time in awe of Lucy's contagious laugh and how many times Abby smiles in a day. Man, her cheeks must hurt.
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