Forging new friendships is scary and hard y’all. I never noticed that when I was growing up, I mean not until junior high anyways, when all of a sudden I wasn’t cool and my grade school friends no longer wanted to talk to me. It seems if you are a “typical” kid in grade school you just sort of naturally make friends. You are all learning the same things, hanging out with the same people, going to the same activities and that seems to make for instant friendships. But it doesn’t necessarily work this way when you are a special needs kid or, for that matter, a special needs mama.
Since the day Zoe came home from the hospital at 3 months old, we’ve had to do things a bit different than “normal” families. Playdates are tough to come by when you have a kid that can’t be around germs, has no physical stamina, and is accompanied by a gazillion tubes. We were just trying to survive. There was actually a point when Zoe was about a year old that her occupational therapist asked me what age appropriate learning toys we had for Zoe and I just looked at her blankly because I literally had NO IDEA what an age appropriate toy was. Our lives were so medically focused, all I did was keep my kid alive, fed, and medicated while I snuggled her close and googled cutting-edge medical research. She was FRAIL. In fact, had Jason and I not been up for a challenge, she probably still belonged in the NICU. She was on oxygen 24/7, was fed through a nasogastric (NG) tube, and had to take a series of meds every four hours — she was basically the girl in the bubble. We weren’t allowed to take her out of the house except for doctor appointments and no one could visit unless they were in perfect health and scrubbed their hands before they touched her. When the winter months finally passed and we weren’t on lockdown anymore and germ-phobia had subsided a bit, we were allowed to venture out. A Target trip was the first thing on my agenda. You’ve never seen someone disinfect that cart like I did that day! Oh, the looks we got — Zoe with her blotchy red skin and purple lips due to all the medications and her Pulmonary Hypertension, me with a medical bag, a can of Lysol wipes, and a look on my face that said “touch my kid and you die!” There we encountered a woman that literally argued with me about what was wrong with my child and what I needed to do to help her. After we survived that adventure, it occurred to me that maybe what Zoe and I needed was some actual peer interaction. So I took her to the library for baby story time. I was hoping to meet some new moms and introduce her to some future playmates. I bravely walked in with my precious little miss and all her medical accessories. I sat down and pretended like that was totally normal. I snuggled Zoe and, since we were on a feeding schedule, tried to tube feed her without drawing attention to myself or her. The librarian and most of the parents there were so kind and greeted us warmly… and then there were those two moms. They sat in the middle of the group and watched their kids and tried to avoid looking at Zoe and I. They talked endlessly about how hard it was to find a babysitter and how they hadn’t had a date night in over a week and how if it wasn’t for coffee time with their girlfriends, they wouldn’t be able to make it- for real! I wanted to smack them. I hadn’t been able to shower or pee with the door closed in months. Date night? What the hell was that? I would need a level 4 NICU nurse to babysit my kid. It was surreal. It wasn’t that I expected them to know exactly what we were dealing with, but they were SO oblivious it was kind of mind-blowing. Obviously those women were NOT going to be my new BFFs.
Because Zoe was allowed to be around so few children her first few years of life, was developmentally delayed, and was basically nonverbal, she had no consistent peers to interact with other than her cousins and the few other kids in her birth to three therapy sessions we went to once a week. While 11 of those cousins lived near enough to us that we saw them often, only one of them became, and still is, her soul mate – Eva – my sister’s feisty spitfire daughter who just happens to be close(ish) in age to Zoe. They are both only kids and they have always loved each other to pieces. Eva has been Zoe’s consistent her whole life. From PICU visits to weekend slumber parties and family vacations, they have always had a special bond and Eva has always helped Zoe with whatever she physically or verbally needed. Well, except for that one trip my sister, Naomi, and I took to the Oregon coast with the girls when Zoe was about a year and half old and Eva was two. Between my pukey kid (can anyone say acid reflux from continuous tube feeds?) and Eva being a fussy toddler who had to stop to pee every 30 minutes, it was a long road trip. (Side note, I don’t mean to brag or anything, but can you catch vomit in a bottle backwards over your shoulder while driving and staring straight ahead? I can, or I should say, I could. Thank God, I’m out of practice with that now). The girls didn’t agree on much that week; Barney vs. Dora is a perfectly legit argument when you are 1 and 2. But my sis and I had a great girls time and even got in a few blustery beach walks. Anyway, by age 3, Eva was holding Zoe’s hand and helping her walk around the zoo while twirling their rainbow umbrellas and rocking matching t-shirts. At 4 Zoe was going to Eva’s theatre performances and cheering her on. When Eva was 5 she was carrying Zoe’s oxygen tank on her back while walking on the beach. At 6 she would translate Zoe’s gestures and vaguely wordish sounds to something another child could understand. She would defend Zoe and make sure nothing and no one could hurt her. She was Zoe’s protector and best buddy. Zoe depended on Eva to be her voice and physical strength when in a group activity. She let Eva make decisions for her because she trusted her implicitly and wholly. Nowadays, our house might as well be a karaoke bar when the two of them are together, Katy Perry and Taylor Swift blare from the stereo while they dance and sing the night away.
Eva is the person that makes Zoe tick. When she’s tired and sad, Zoe grabs the pictures of Eva off the fridge and holds them in her hands and falls asleep with them by her pillow. When asked what she wants to do on the weekend, “playdate with Eva” is the immediate reply. They send each other emoji-laden texts to make sure they rock matching outfits when they hang out. Eva provides the perfect balance of pushing Zoe to do more than she is necessarily comfortable with but then holds her hand while doing it and congratulates her like crazy when she accomplishes it. If you look at the two of them side by side, they look like total opposites and you would think that there are years between them. Zoe is tiny, bird like, awkwardly flexible, shy around strangers and usually pretty chill. Eva is tall, strong, loud (in the best possible way), emotional, outgoing, and dramatic. They are two halves of a whole. But they also surprise you sometimes. Zoe can outlast Eva when it comes to rocking out at a dance party or lasting through the finale of a Katy Perry concert. They have always been BFFs but the last couple years they added a “Sisters” and “Cousins” part to the equation, or BSCFF (Best Sisters Cousins Friends Forever) and it is oh so appropriate. Why? Because the older and stronger and more opinionated Zoe gets, the more they play and fight and laugh like sisters! When she was more fragile and less vocal Zoe used to let Eva do all the talking and deciding for her. But now, she has an opinion and when they don’t agree, Zoe argues back and it’s kind of my favorite thing ever. I mean, not that I ever bossed my sister around….
Given Zoe’s close and safe relationship with Eva, I was terrified when Zoe started developmental preschool that other kids wouldn’t understand her and protect her like Eva did. Zoe had been under my supervision at every outing, every birth to three moment, every child interaction. As I stood in that preschool classroom I looked around in panic. Kids were running, jumping, talking, singing, interacting, and she couldn’t do ANY of those things. At 3 she had just recently started walking, but was still shaky and hesitant. She was saying some vague word-type sounds that Jason and I understood, and she played with us, but her social skills with other kids were zero. She relied entirely on an adult (or Eva) to help her navigate the big bad world. When the teacher came over to check in with us after observing a class. She asked us what we thought and I burst into tears (see, I actually do cry sometimes!) I replied, “Zoe can’t do any of those things and how is she to make friends and keep up?” I thought the kids would all tease her and ask a million questions and she wouldn’t have the words to explain. Instead these kids all listened attentively while I explained what all the medical things were (or as much as you can to 4-year-olds) and then they all went back to playing and circle time. They, like Eva, didn’t see a difference between themselves and Zoe. Within a week of starting school the kids were helping move her oxygen cannula around when it got caught on something. They might have struggled with including her, but they were kind and saw no differences.
To be honest, Zoe STRUGGLED with peer friendships at school the first several years. She spoke in a way other kids didn’t understand, she played young for her actual age, and she missed big chunks of school for medical reasons. Her therapists and paras were her best school friends, they knew how to communicate with her. In first grade I took her to her first classmate birthday party, I watched helplessly as the other kids played together, but weren’t able to successfully include her and it broke my heart. That year, Jason and I made the decision to hold Zoe back a year and have her redo first grade. We knew she needed to get into a more age appropriate peer group for her to succeed both socially and scholastically. While not the toughest decision we have ever made, it certainly ranks in the top five. The next school year however was a freaking game changer. Zoe, for the first time ever, was an equal peer. She had friends and conversation and spent more time with those peers than her paras. This year, in second grade, I took her to a birthday party and watched her play with friends with a huge smile on my face. I am so proud of her and the friends she has made in the last year and a half. They happily pushed her around on the ice rink and held hands with her while they did it. They conversed and laughed and played and included her in all of it. I was a happy mama.
I’m learning as I grow older that making and maintaining friendships as an adult is sometimes seemingly impossibly hard. Between work, family, and medical routines, finding time to cultivate my friendships has become sparse. I’m also finding that lonely can sneak up on you and you never see it coming. Since Zoe was born almost 10 years ago, I have gone on only one girlfriends weekend in which kids and significant others were not included. I’m pretty sure that is not a good thing. I am so grateful for the friends I have made over the years in all the places I have lived. I am grateful they squeeze in lunches with me when I happen to be in their town for work. I am also sad every day that I don’t live closer to most of them and that I don’t get to see them very often, if at all, and have the heart to heart conversations we used to before we were the mamas we are now. I am beyond grateful for my sister, my ultimate BFF, who is always there for me. For all the crap I give her about her uber-organization and dusting obsession, we really do get each other better than anyone. I am also eternally grateful for my tribe of special needs mamas- the women I didn’t know before I had Zoe. These women are in the trenches with me and know what it is like to give your all fighting for your child’s needs, often at the expense of your own needs, until that day you find yourself at the brink of lost and lonely and needing someone to fight for you. They know the mind-numbing uncertainty, the relentless medical routines, and the awe-inspiring moments of miracles you never thought you would see, the pride you feel when your kiddo accomplished something you had been told would never happen, the tears of joy when your kiddo gets her first invite to a peer’s birthday party, the gratitude of a hug and a Starbucks giftcard while on week number four in the hospital. They know what it is like to not know who YOU are anymore because so much of you wound up in your child’s survival and there is not much time for anything else. Since Zoe was born, my philosophy has been “I’m fine, Zoe is the one that needs the helps. I will be ok.” But maybe that’s not the whole truth. Maybe I need some BFF time too.
How is it that I can fight so hard to help Zoe make friends, but ignore the fact that I need them too? While being a good mom and a good wife is important, I also need to remember that I wholly existed before I was either of those things. I need to draw back on the group of women who helped shape who I am today; they are important touchstones in my life. This is my pledge to my tribe, old and new, and my commitment to myself to devote more time to my friendships and recognize the power and importance of them. To Naomi, Tamra, Laurina, Jennica, Sara, Temre, Cynthia, Christa, Rose, Michele, Olga, and all you other fabulous ladies too many to mention, thank you so much for being there for me. And can we please get together soon? I miss you all and need your beautiful friendship in my life.
P.S. I need a girl’s trip! Who’s in and where are we going? Not joking!