"Yes, actually, we all have big heads. I had the biggest hat measurement on drill team in high school, which is saying a lot since I'm only 5'4". My husband has a big head, and I think part of why I needed a c-section with my first was because of the size of her head." I defensively respond.
"Ok, well, she might just have a big head. We'll keep an eye on it."
I reassure myself that a big head is a sign of a big brain, and my 6 month old baby is a genius.
|Photo Credit: Yana's Photos|
That was a few months ago. Fast forward to Wednesday of last week, with a less than ideal colored bowel movement in my baby's diaper. I don't freak out, I don't panic. I remain calm, but I think that a black stool is a sign of internal bleeding. I place the stinky stool in a Ziploc bag, toss it in my purse, and go to the doctor's office with my 3 year old holding my hand and my 8.5 month old on my hip. I acknowledge this is a new low, lugging my child's shit around in a sandwich bag in my purse.
Tests are run, I'm reassured, it's just the beets and blueberries she's been eating. But, while we're here, I ask the pediatrician, "Quick question, does her head look normal to you? I know we said a couple months ago we'd keep an eye on it. It seems to me like the bottom of her head is bulging more so than it used to. I just want to be sure everything's fine." My concern is more of an after-thought. The professional runs her hands over her head and inquisitively looks at my baby's head from different angles.
"You know, this is more alarming to me than the concern about the poop. I think we need to get her in with a craniofacial specialist just to be sure her skull is forming properly. I'll get you a referral, go ahead and call to make the appointment today."
Surprisingly, I'm still calm. I call the specialist, and tell them my most convenient time for an appointment, which is in a few weeks, when my oldest is in school and I'm off work. I check it off my list, and go on about my day.
I am an operating room nurse, and the surgeon I work for has experience in craniofacial surgery. I nonchalantly discuss my day yesterday (with the black poop and the specialist referral) when all of my co-workers are catching up about past weekend and upcoming weekend plans. My boss asks me more questions about my baby's head. In between cases, he shows me some textbooks he has in his office about something called "scaphocephaly." He tries not to worry me, but urges me to move up my baby's appointment. I get on Google and look up "scaphocephaly" and "sagital craniosynostosis."
I now understand that my baby's brain is growing abnormally, it has been for the past 9 months and I'm WAY past due on this diagnosis, she might be brain damaged, might have congenital heart defects later in life, and most definitely will require an ear to ear incision during her upcoming neurosurgery. I call and have her appointment moved up to Monday morning. Until then, I'm waiting, and waiting makes me anxious.
It's now the weekend before our Monday appointment, and I stumble upon the #scaphocephaly on Instagram. That leads me to mom-blogs who have bravely paved the path before me. Will my blog content change now? Will I go from blogging about spirituality, feminism, motherhood, and the merge of those topics, to blogging about special needs? Reading their words, I fall apart. I realize that Everleigh definitely has this condition, and I deep down knew it all along. She was born with a bigger forehead than Lilah (I always just thought she inherited my fivehead). I hold her and caress her head and feel the prominent bulge in the back and kiss all over her, assuring her and myself that she will be loved, that we will get through this and at the end of this, we will be her supportive, strong, loving foundation. I anxiously await for George to come home so he can be the "parent" while I morph into the "person" who has stuffed her fears deep down while role-playing "Mom."
Sidenote, the "Mom Mask" sucks. The "Mom Mask" is the costume I feel I need to put on to show my kids that everything is okay. If I'm okay, they're okay. I should know better. I should know that they're still young enough to be intuitive and know I'm faking it. But I feel an obligation to be strong, even if it's fake, and then I feel self-judgment about being a fraud with my kids. Self-judgment sucks. As an additional sidenote to this sidenote, can we all agree that the world is far too judgmental, and most of us already judge ourselves enough? Don't tell me what I should or shouldn't do, don't try to change me, I ALREADY KNOW MY FLAWS, thank you very much.
George comes home, I put Everleigh in his arms, and say "I'm going to be sick." I dramatically run outside, and hyperventilate. I put my bare feet on the dirt, my arms around my legs, and my head between my knees. "Breathe" is what I tell myself. The scary visions of this upcoming surgery, the fear of the unknown, the dread of Monday when the specialist confirms my fears, all of it comes rushing in like a huge wave and I'm a weak amateur who just wanted to be in the sand. How the hell did I get in this ocean with the waves? I want to watch people surf, and feel bad for those who fall down, and encourage those who stay up, but I want to be in the sand, on a towel, with a cocktail. The parenting metaphor persists. I want to be a mom of two healthy kids. When I hear of tragic tales, scary illnesses and diseases, my heart physically aches for those parents. I feel too much as it is. This doesn't happen to me, this happens to other parents, and when it does, my heart breaks for them. I hold them in Light, I send prayers their way, I donate to their KickStarter pages. If they are close enough, I'll bring over lasagna. But I'm not the parent of the child with a condition. I'm the observer. The sympathetic observer. I'll toss out a life preserver from time to time, but I'm not the one who is drowning. I'm not the one riding the wave.
I flashback to when Lilah Grace was exactly this age and she had a 9 minute long seizure. As we awaited a diagnosis in the hospital, I was in this same purgatory. The waiting. The waiting that makes me anxious. "What chronic condition are we about to uncover?" I thought about Epilepsy, Type One Diabetes, Infantile Seizures. My mind was racing. I was scared. I was so scared. When the news came back she had the flu, and it was a one-time febrile seizure from a fever, I was beyond relieved. I just knew we wouldn't be that lucky again. I just knew it was our turn, that life is random, and we just can't keep getting lucky.
I felt as though I received the diagnosis early, and my job was to mentally + emotionally prepare for the official diagnosis Monday morning. To do that, I needed to face my fear head on. G did the girls' bedtime routine, and I filled the bathtub with Stress Away oil and Epsom salt. I turned out the lights. It was pitch black. I put on the song that I dedicated to myself from God three years ago, on repeat. I imagined a Mother God singing the words to me:
"...I will show you, you're so much better than you know. When you're lost, and you're alone, and you can't get back again, I will find you, Darlin', and I'll bring you Home....And if you want to cry, I am here to dry your eyes. And in no time, you'll be fine. You think I'd leave your side, Baby? You know Me better than that...."
After my panic attack, bath, and crawling into bed, I told G, "Thanks for being strong for me tonight. I'll be strong Monday, and you can be the one panicking. I know we both can't panic at the same time, and I got all my panic out, so now I'll be the strong one. I am certain she has this condition, and this news will be hard to hear, and I'd like to you to be there when it comes out of his mouth." He took a half day off work, and we met at the specialist's office in Dallas.
Fast forward to today. This morning.
In the waiting room, I was surprisingly calm. I really did get most of my fear out the couple nights before. I went to the restroom, and before I came back in, I stared at the doctor's name and credentials outside the door. I wondered how many times we would be coming back here. How many follow-ups, how many check-ups.
I envisioned our oldest being a big sister to a little sister with special needs. She's already such a nurturer; she refers to herself as the "Mama Wolf" and to Evy as her "cublet." Yes, Lilah will be great at this. Her role will be protective and caring, and she will excel at that. George will be great, too. He has Type One diabetes, so he knows what it's like to live life with a condition that requires extra effort. He will be a great resource for our daughter. How will I be?
I thought about my life as a story, and myself as the protagonist. If I were reading a book about this, I would appreciate the mother in this story to be solid. Rock solid. Strong. Loving. Unwavering. Loyal. I would be all of those things. Everleigh wouldn't even know she was "different" until somebody one day in the real world brought it to her attention, and when they did, I would cut them up into pieces and end them. Obviously. I could do this.
Then, I realized, I was making this about me. ALL of this, I was making about me. I was the protagonist? No. She is the protagonist. I'm a supporting role. My role is not the main character in this journey; she is the lead. This is her journey, I believe she chose to live this life, and I was merely the vessel to bring her to this plane. My role wouldn't be anything other than loving and supporting her; taking her to necessary appointments, and finding the most qualified professionals to help her with her journey. Supporting role. I found this oddly comforting. I could do this.
"Everleigh?" the doctor called us from the waiting room before we were done with the paperwork. Why was the doctor pulling us back, and not a nurse? He introduced us to two visiting surgeons from two different countries and asked if they could join us. Deep breath. "Of course!" I reply with a smile. Strong. Confident. Loving. I am in the supportive, yet strong and loving, role now.
Thankfully, he doesn't beat around the bush. He doesn't waste much time. He tells us we won't be needing his help; that she definitely does not have scaphocephaly. He knows because "X,Y, and Z." I wish I could remember those reasons, but after I heard the good news, I tuned out. I was crying. I was relieved. My fears that I'd completely convinced myself were absolutely true, were not. I had been that annoying, high-strung mom who spent too much time online, and worked herself up. We walked out of the office, with big smiles on our faces. The lady taking our co-payment smiled and told us, "I'm happy for your good news."
In the elevator on our way out of the building, we both cried. But this time, not out of relief. We were crying for the parents who do not receive the "good news." For the parents who are forced to be strong in the face of danger, fear, and the unknown. Why??? How did we get so lucky again? And why do those other parents not have the same luck? Isn't it all just luck? This Universe is so random. I don't believe we are "blessed," or that God spared us. How insensitive of a belief, because that insinuates that those who get bad news are handed it by God, that they some how deserve it. What?? No. That doesn't feel right. After feeling the deep sadness, fear, and panic for days, knowing there is not a "relief" for some, just an adjustment to the "new normal" is painful. I feel guilty for receiving good news. I feel spared, fortunate, lucky, and grateful, but if I were in the other position, I know I'd resent the parent who received good news a little bit. It's just not fair.
We went to get coffee in a little cafe in a garden after the appointment to decompress. G left to return to work, and Evy and I stayed back and visited with our waitress for a long time. I told her a super brief version of this story; that we had an appointment with a specialist today, and were very scared prior, but received excellent news. We were celebrating, but I felt a little guilty, because I know how many people don't receive the good news. She then told me how her sister lost her 2 1/2 year old to an uncommon brain condition diagnosed at birth, and how they set up a non-profit organization that distributes medical products to people in need. I silently felt the tears fall down my cheeks. She told me not to cry, that she would start crying, and then, alone in this cafe, we both found ourselves bonding and loving and living. Her sister was exactly the person I was talking about. The warrior who receives bad news, and rather than getting a relief, has to learn to adjust to a new normal.
It was during this exchange I felt a renewed sense of something Higher and Bigger than me. I've been dabbling in doubt + cynicism with my spirituality lately. My connection with our waitress drew me in closer to The One. I took my time leaving the cafe, taking in the art on the walls, and the plants in the nursery. I buckled our baby safely in my car, and drove to pick up my oldest from school. I listened to my audiobook on the commute. Life was back to normal.
Life isn't fair. Life is hard, and it's filled with good news and bad news, and we don't know when we will be on the receiving end of either of those. What I'm learning is to be prepared for the bad news, to rejoice with the good, and to realize that at any moment, it could change. Nothing is promised, nothing is guaranteed, and it is absolutely terrifying to let that sink in. I think the waiting period, the time of not knowing, is awful. The mind races for something to hold on to, and it self-judges. Assuming the worst is giving up hope, and negative. Assuming the best is naive and aloof. There is no "right" way to wait for news. This is a universal truth applicable to far more than child-rearing.
I'm learning, and loving, and sometimes I'm really strong, and sometimes I'm scared shitless. Well, except for the questionable one in the Ziploc bag in my purse.