I had my topic for February’s post all laid out and then February actually happened, completely consuming me for weeks, and now I have two topics to write about. The cool thing is they happened to intersect in a very unexpected way and therefore lend themselves to a single post somewhat nicely. I’ll do my best to make the connection here.
In late January, I went back to school. Call me crazy (you wouldn’t be alone, I do it all the time), but the opportunity fell into my lap, or smacked me in the face really, and I couldn’t say no. Getting my Masters degree in social work has been a personal and professional goal of mine for many years so I’d be a fool to pass up the chance to join this cohort, designed specifically for the folks living in our rural part of the country. And so I didn’t pass it up. I pulled my cloak of insanity in a little tighter and jumped. So far, I’m content with my decision.
I love the field of social work big time, to put it in simple terms. It’s a vast field, with a million different ways to connect with people, hopefully making a positive difference when you do. I adore it. But while I was getting my undergraduate degree, I had a very different path in mind, imaging myself working with drug-addicted mothers or the homeless population or victims of domestic violence. I hadn’t really made up my mind yet, but I knew I’d find something. Then Maya was born and everything changed. My life changed in ways I’d never imagined, hadn’t given a second thought to before, and truly wasn’t prepared for. I was spinning for a time; unsure of what the hell I was doing, looking for answers to questions I didn’t even know I had, wishing I understood more about my new life. I was lost and I was alone with my feelings. More than anything, I felt very, very alone.
Looking back, with the clarity that comes with time, I understand more about what I wish I’d had. First and foremost, I wish I knew other parents that were in a similar boat. I didn’t know a single soul that had a child with disabilities. I was aware that they existed, but they didn’t exist in my world. I didn’t feel that anyone understood what the heck I was talking about as I went through that painful time of processing my emotions. Not to say that there weren’t people who tried and I in no way mean to diminish their efforts (there are several individuals who always come to mind for me when I think of that time and I will be forever grateful to them for their patience and presence), but I knew that behind their nodding heads and comforting words, they just didn’t know. I needed someone to know. I also wish that I’d had parents to bounce ideas off of and someone to discuss doctors with, especially since so many of us have to travel 150 miles to see our docs and specialists, living in the medically-underserved area that we do. And really, I just wish I’d had somewhere to be with Maya, where we felt comfortable, where she wasn’t stared at, where I didn’t have to constantly “explain” her, where her differences would blend in better, instead of setting her apart. These days, I know Maya stands out and I do everything in my power to hold her up, to let her shine as brightly as I know she does, but we didn’t come out of the gate in that space. I had to come to it in my own time and I know that every parent gets there at a different rate. Every time someone told me that I should relieve my sense of isolation by going to a playgroup, I wanted to scream. A playgroup with a bunch of typical kids and their unknowing parents was the last place on earth I wanted to be. Of course, I’ve been part of a very typical playgroup for the last year and a half and I love those mothers and children dearly, but I just wasn’t ready in the beginning. I wish there had been a “safe” space for the two of us. I know it would have been good for us both.
So I’ve decided that if the community I craved doesn’t exist, I’ll just have to create it. If I felt this way as a parent, I can only imagine there must be other parents with the same needs. Right? I can’t be that different. So I’ve set out on this path. I will earn my degree and get back out into my community and rebuild those professional connections that were lost when I left my job and I will do this thing! The social worker in me can’t be quieted. It’s kind of a problem.
A few weeks before I started school again, I was at Target, which is certainly a place I see the inside of way too often, and while my items were being scanned, I looked up and saw a man walking past me with his daughter. She caught my eye immediately. She reminded me of Maya. While the details between the two girls were somewhat different, there was still enough of a similarity that I was overcome with the urge to connect with her. I couldn’t stop staring, though I tried to not come across as a total creep. As luck would have it, the man turned around and started walking back in my direction. I saw that the girl was chewing on a necklace of sorts and I was curious about it, but mainly I felt an overwhelming need to talk with this family. He was about to pass me by again and I frantically finished up my transaction and called out to him, “Sir! Can I ask you a question?” He looked up at me, a somewhat bewildered look on his face, and mumbled something along the lines of, “Um, okay.” I pushed my cart over to him and inquired about the necklace, knowing it was my best chance at starting a conversation with him, all the while watching this girl as she held onto her father’s hand. I was scared. I was scared of being turned away, of being told I was intruding, of causing harm when I meant none. But my fear of missing an opportunity to connect with a local family with a child similar to mine outweighed all of those and so I pressed on. He stumbled on his words again, clearly unsure of how to answer my question about the necklace. He told me with that familiar dismissive wave of his hand, “Well she has disabilities and she’s always chewing on her hand so we thought we’d try this instead.” I looked at him and said, “Yes, I have a daughter like her at home.” I’m not sure he believed me and he continued looking at me with that guarded look on his face. He didn’t have an answer for me regarding the brand of the necklace and instead asked his wife, who was by then walking over to where we stood after paying for her own items. She looked back and forth between the two of us, that same bewildered look on her face, wondering why this stranger was talking to her husband and daughter. She recovered quicker than her husband and she managed to tell me, in a somewhat exhausted voice, a bit about the teething necklace and while she talked, I knelt down to interact with the girl. I loved her. Without knowing an actual thing about her, my heart grew to include her. A piece of her gentle, inquisitive, beautiful soul took root in me and I loved her. Right there in the lobby of my local Target. She looked in my cart, curious about Julia, who was with with me that day. She ran her hand along the side of it, coming up to me while I kneeled down to be on her level, and she came in for the briefest of hugs. I melted. I wanted to scoop her up, but I’m sure her parents would have definitely cried foul at that. And so, after no more than five minutes, we parted ways, leaving me with a seriously crazy mix of emotions. I knew that that family was exactly the reason why I was going back to school, why I wanted to build bridges between the special needs families in my town. I found myself tearing up as I got in my car, thinking about the way that both of them responded to me approaching them. They were somewhat shocked. They didn’t really know what my angle was or if I my intentions were good. They were used to being invisible, like so many of us are when we are out in public with our children. When people don’t know how to process what they see, they just don’t see you at all. I know all about having an invisible child. It is painful. In the wildest dreams my brain contains, I dream of a time when none of our children are invisible and parents are able to openly talk about the loves of their lives, in the same way that all the other parents are free to do. This is my hope.
I thought about that family for weeks. Really. Every single day. I wondered where they were and if I could have done something more to connect with them. I kicked myself for not ordering the cards I’d been meaning to get, the ones with my contact information on them so that I could potentially set up play dates for Maya. I told several people about my experience with the girl and her family. I wanted to share the wonder of it with someone. Of course, it didn’t really translate to anyone else. They nodded and smiled and indulged me as they often do when I’m off in Thea Lala Land, going on and on about love and connections and the universe. I am surrounded by very indulgent people…
The weeks passed. Graduate school started. I was busy. Life is like that. Then Maya got sick. She came down with a hell of a cold and it was rough, though it appeared to be the same terrible cold the rest of the family had just gotten over. After four days of coughing and a high fever, I took her in, just to make sure nothing was going on that I couldn’t see, because she had largely quit eating and drinking altogether at that point and she hadn’t slept in days. And something was most definitely going on. My baby couldn’t breathe. She was immediately admitted to the hospital for pneumonia and I was terrified. I live under a constant cloud of fear for Maya’s health, knowing things in the deep recesses of my brain that I’d rather not know. I absolutely loathe when any of those fears are confirmed on even the slightest level. My husband was out of town for the evening and I’d left my other two girls at home for what I assumed would be a quick trip to the doctor’s office, so I was on my own with Maya as we were wheeled to the Pediatric Intensive Care Unit (PICU).
Big sisters bring the biggest smiles
When the time came for Maya’s IV to be inserted, things did not go smoothly. They couldn’t find any suitable veins and an ultrasound machine had to brought in. For a child who doesn’t like to be touched except on her own terms, there was a heck of a lot of touching going on. She was not happy. It took three nurses and myself to hold her down while the fifth person tried to insert the IV. It took forever. Seriously. And the whole time Maya is thrashing with Hulk-like strength. I was heartbroken and I was sweaty. We all were. Eventually the IV was placed, she was taped up and things settled down for a minute. The shift change happened, as we’d arrived at 6 PM and it was now 7:00. The new nurses trickled in and introduced themselves. The charge nurse walked in and started attending to various beeping and dripping and flashing things. Then he came over to the bed to meet Maya. He watched her closely, looking at her face with a strange softness on his own. He told me, his eyes never leaving hers, “She reminds me of my daughter.” I was startled. No one has ever said that to me. Ever. Maya’s one of a kind. She does not look like any other children I know. It just seemed like the weirdest thing to say in relation to Maya. I asked him, “Oh, does she have craniosynostosis?” I figured that had to be the connection. “No, she doesn’t. I don’t know. She just reminds me of my daughter.” Then he looked down at her IV and realized it had gone very wrong. Her arm was bulging with fluids that were being delivered under her skin instead of into her vein. “This needs to come out right now.” My heart sank. He hadn’t witnessed the scene from 45 minutes before. And so it began again. This time, with new faces surrounding her, she was wrapped like a burrito, which meant that it only took three of us to hold her down. She was exhausted, but still had so much power. Jeremy was calm, cool and collected while he searched for a good vein. He blew the first one. I don’t hold it against him. Like I said, Maya could have lifted a car off a baby at that point. Then he met with success. We were done. Again. Third time’s the charm, right? After everyone left, I saw him looking at Maya again and this time, as I watched him watching her, I knew. Jeremy was the dad from Target. I didn’t say anything because I would have hated to be wrong, but I knew it anyway. He told me that his own daughter had genetic abnormalities and that she didn’t speak. He said that he was going to explain everything to Maya because that’s what he does with his girl. And he did. He included Maya in everything he did from that point on. I felt a sense of deep peace wash over me, knowing Maya was in the best hands she could be in, given the circumstances. It couldn’t have been a better match. Because he got Maya. She wasn’t invisible to him. He knew the depth she possessed. He knew the challenges she faced daily. He knew the strength she had. He knew that she loves and is deeply loved in return. He told me that he’d show me a picture of his daughter when he got the chance, which came maybe half an hour later. He brought his phone over to me, his face glowing with a pride I know all too well, and I was shown a picture of that sweet slice of perfection from Target. I said to him, “I met you. That one day in Target. I met your little girl.” He didn’t answer at first, but then he said, “You asked about the necklace,” remembering it now. I told him that I’d thought about his family every day since then and wondered how they were doing. He kind of laughed and said, “Well, we’re here.” Right then the head honcho doc came in and the conversation was interrupted. We never got a chance to talk again during the four days that Maya was in the PICU, but I felt as calm as one can feel with a child in the hospital. I knew she was being taken care of by the very best. She was discharged on a Friday afternoon and was able to spend the weekend recuperating with us at home. She still hasn’t bounced all the way back and is currently sick in bed with a nasty cold so things still have a ways to go before I can say we’re back to normal. I miss my sweet girl. I want her to be well. We just celebrated her fourth birthday quietly at home, all plans of a party scrapped during our days in the PICU. I’m hoping that with the coming of spring she’ll benefit from the sunshine and fresh air and that my Maya will be returned to me.
Maya at four
As hard as this month has been, it’s also held so much admiration and wonder. I am constantly meeting good people, beautiful people, helpful and amazing people. I can only hope that as I move forward on this path, my choices continue to be validated and that I am able to keep my eyes open for opportunities to connect. This is my dream after all, a cause I feel an immense amount of passion for. I imagine a community of connected parents and of children that benefit from those connections, friendships that blossom, peace that’s made. I’m so excited to get started and I can’t wait to see who else I meet along the way.