I decided to do natural childbirth when I was pregnant with my first child back in 2004. It seemed like a no-brainer at the time. Epidurals led to more interventions in labor including c-sections. There was research out at the time showing that the use of epidurals in combination with pitocin in labor might be triggering genes for autism in newborns. Women had been giving birth naturally for hundreds of thousands of years so surely I could too. I read up on the Bradley method and devoured all of midwife Ina May Gaskin’s books. My son’s father and I attended all the classes and developed our birth plan which we shared with our L&D nurses as soon as we arrived at the hospital.
My nurses were less than supportive, offering me an epidural every time they came in to ask me to rate my pain on a scale of zero to ten (I have since then had two more babies with absolutely wonderful nurses, so please don’t take this as a generalization). My obstetrician had instructed the nurses to start me on pitocin over the phone. He was driving home from his call shift early and decided to go with the nurse’s exam instead of coming in himself. I was already in labor but my water had broken several hours earlier and they wanted to reduce my risk of infection by getting my baby out as soon as possible.
I’d wanted to avoid pitocin but there wasn’t much I could say, especially since the ordering physician wasn’t even there. Cross that one off the birth plan. My son’s father and I decided to make the best of it. I wasn’t allowed out of bed because they said intermittent fetal monitoring wasn’t allowed since I was on pitocin (although they did allow me to do intermittent monitoring with the labor of my second child when I was using midwives, so either it was my OB’s policy or a lie of some sort). I moved position within bed as much as I could to promote my son’s descent into my pelvis. Every time I did, Nurse Ratchet would come in all in a huff and readjust my belt monitors gruffly.
And so it went. I delivered my beautiful son naturally and a bit angrily that night shortly before midnight. He came after just three rounds of pushing with the umbilical cord wrapped around his neck three times. There was an ER resident there and I think she might have been the one to actually deliver him, but I wasn’t all that concerned with the details at the time. The hands catching him counted as a detail. They laid his wet little body on my chest and I looked down at him and thought how small he was, and how much a stranger. I’d been talking to him and bonding with him so strongly over the past 9 months in my belly, and now here he was. He didn’t look like the cherubim of a baby I’d imagined him to be all those months. It was a little disorienting. Like talking to someone over email for nine months and then meeting them in person.
I quickly got over these feelings, though, and looked at what a beautiful, perfect little person my son was. We couldn’t believe how complete and detailed he was: he had little fingernails! Little eyebrows! He was so amazing. I loved him so much, in a way I’d never loved before.
We took him home shortly after. He checked out well by the pediatricians at the hospital and then by our pediatrician in the office. He was losing a bit too much weight because he didn’t breastfeed real well, but otherwise things were fine. Then came the moment that divided Before from After. The moment our lives changed forever.
It was Sunday June 13th. My baby was five days old. I was in the nursery when the phone rang. I left the baby with his dad and went to answer it. I expected it to be my mom calling to check up on us. It wasn’t. It was my son’s pediatrician. My stomach sunk. My heart began to beat a little heavier in my chest. Doctors do not call on Sunday afternoons with good news. They do not pull themselves from after-church lunches and pick-up basketball games with their teenaged sons to call and check how your newborn is doing. They only call when it’s bad.
He began asking if my baby was throwing up, had diarrhea, was overly fussy, and a whole lot of other questions. I told him no to all of them. My son was fine. Not the best nurser in the world, but fine. He told me that they’d drawn some blood at the hospital that they do on all the babies to screen for certain conditions and my son’s had shown he had something called galactosemia. Galacto-what-ia? He gave me a brief rundown. It was a metabolic disorder where eating certain things, like dairy, hurt him. I needed to stop breastfeeding immediately and put him on soy formula. But what about the benefits of breastfeeding, I asked him. He said I absolutely needed to stop feeding my son milk now. I could pump the breast milk and freeze it for now until all the confirmatory tests came back. I was to take him to see the medical genetics physician first thing in the morning. A specialist seeing us first thing in the morning on less than a day’s notice? This could not be good. This had to be very bad.
When we went to see the specialist the next day, they caught something on their exam the other doctors hadn’t. My son had a small head. It had nothing to do with the galactosemia. This was another medical problem altogether. Over the next year months he received more diagnoses. All of them seemingly unrelated. His first developmental delay manifested itself at twelve months. The autism diagnosis didn’t come until he was four. We didn’t know the extent of the visual issues (he is legally blind) for sure until he was five.
I’m not sure which of his many diagnoses was the toughest to find out about. You would think it might be the first one, or the one that would most affect his life, the most disabling one. But I think the hardest ones were the ones that came just after those first two we found out about that day at medical genetics. It seemed like every time I took him to the doctor, he got a new diagnosis. All these doctors talking about all these things wrong with my baby. Couldn’t they see he was perfect? It was an unrelenting, seemingly never ending process. It wore me down.
After the shock and the drama of the initial diagnosis came the day-to-day work of raising a special needs child. Doctor appointments, regular blood work, therapy sessions (physical therapy, occupational therapy, speech therapy, vision therapy….), IEP meetings, finding adaptive material, figuring out how to get him toys that clearly say they’re for much younger kids on the box without upsetting him. And then there’s the emotional work of coming up with new dreams, reigning in the worry of potential challenges yet to come, and accepting and embracing your unexpected life (over and over again).
I have handled these challenges with grace at times, and other times, not so much. But I have weathered the storm thus far, ten years in, and I can tell you there are certain things I went through before it all began that have helped me through the bad times and helped me to enjoy the good times even more. One of those experiences was his entry into this world pain medicine free.
One of the things I learned heading into my natural labor was to think of the contractions as ocean waves. I shouldn’t resist them, shouldn’t tense up and fight them. I should relax my body and let them wash over me. Easier said than done. I know there are those who’d disagree, but for me, contractions are damn painful. I know intellectually it’s the body’s way of opening up the cervix so your baby can come out, but it feels like I’m in a vice grip. Relaxing and accepting the worst pain of your life is not necessarily a natural response. What can make it even harder, is laboring in an environment where people are constantly offering you pain medications and telling you you’re better off with them. One analogy people offer is that if you were shot, you’d use pain medication, so why go through pain for childbirth when there are readily available pain medications? My thought on that one has always been: because getting shot and bringing a baby into the world are really just so similar? No major differences there at all.
Natural childbirth prepared me for the journey of special needs parenting in several ways. Listed in no particular order:
1.It Made Me a Little Fearless
Natural childbirth was the hardest thing I’d ever done up to that point in my life. It was physically and psychologically demanding. I was more tired than I’d ever been afterward. They say that’s why they call it labor, because it’s hard work. Corny but true. Our culture isn’t supportive of natural childbirth and an awful lot of OB’s aren’t either. Just making the decision to do it can require some fearlessness in itself. Having to stick with that decision with people resisting it while you’re laboring, being stretched to your physical and psychological limits, is pretty hardcore (I say this as a doctor whose watched laboring women do this, not as a toot-my-own-horn statement). You need to be a little fearless when you’re rasing a special needs child too. The fear of your unknown future, of doctors you must stand up to at times. You have to set the fear aside for you child, so you do.
2.It Helped Me to Learn to Accept
Coming to terms with your child having special needs is a grieving process, and one that doesn’t stop after the initial stages you go through with diagnosis pass. You continue to grieve as the years go on, with all the day-to-day challenges of each new stage of your child’s development (and your own). What is essential in this process is acceptance. You have to accept your situation before you can begin to process it and do what needs to be done to make the best life for your child and the rest of your family. Fighting it is as useless as fighting labor pains. The best thing to do is force yourself to relax and accept it. I know forcing yourself to relax sounds counter-intuitive, but faced with the pain of those contractions, I learned how to do it pretty quickly.
3.It Showed Me I Could Do Anything When it was for My Child
I remember clearly holding my week old newborn son as I sat in the nursery glider and crying, begging God not to take him from me. At that point, my son’s doctors thought he might have a chromosomal disorder but they wouldn’t say which one. I began looking up chromosomal disorders on the internet (I wasn’t a doctor yet so I took to Google) and found several of them that carried an average life expectancy of two or three years. I was terrified he might die young, so I bargained with God. If you let him live, God, I will do anything. I will walk through hell for him. I will go through the pain of childbirth for eternity, if you will just spare him. And I meant it. Since then, when I go through something difficult, something really difficult, something I feel like I simply cannot do because it seems genuinely impossible, I think of that moment. I think of that promise. It’s ten years later and he’s still here. I owe him my all, even the impossible at times. Knowing I got through something as hard as labor for him, and that I was willing to do it again, keeps me motivated.
4.It Showed Me Sometimes We Have to Fight for our Children
Special needs parenting, especially of kids with autism, involves a lot of fighting. You head into it naïve. You think everyone must want what’s right for a special needs kid. You think, even if they don’t, they’ll follow the laws set up to protect the rights of people with disabilities. You’re wrong. Very wrong. You quickly find out one of the main jobs you have as an advocate for your child is putting on your armor and going into battle for him. I once fought a certain insurance company for two years to get them to comply with the law in Pennsylvania that requires them to pay for the formula of infants with galactosemia. They had an attorney blocking me. I didn’t get them to pay for it until my attorney sister got the Governor’s office involved. The fights with the school districts are fairly universal. My son (unfortunately) has moved a lot in his ten years. He’s been in five different school districts and not-a-one gave him the accommodations he needed without me fighting them for it. Fighting the OB’s and nurses and court of public opinion in order to bring him into this world as safely as possible with a natural birth got me ready for that. I was fighting for him right from the start. Before the start really.
5. It Showed Me What Love Could DoIn the end, the most important thing I took from natural childbirth was seeing just how deep my love for my son was, even before I’d met him. It hurt, yes, but only for a time. From that hurt came the entry into the world of one of the most amazing human beings ever to live (in my opinion, anyway). We risk a lot when we decide to bring a child into this world of ours. Miscarriage, infertility, stillbirth, crash c-sections. And the risk, of course, of having a child with special needs. If we face it all with love, though, we see this is the stuff of life. We’re so afraid of pain in our society, both physical and emotional, we do desperate things to avoid it. We abort babies whose genetic testing doesn’t yield perfect results. We schedule labor inductions and pre-order our epidural to make labor convenient and pain and stress free. We wait to have children until we are in the perfect financial and professional situation. We delude ourselves into thinking we have control over things that, ultimately, we don’t. We attempt to escape this pain we fear so much, but in doing so, we become less human. We weren’t put here to live the easiest life possible. We were put here, quite simply, to love one another. When you are the parent of a special needs child, you are given the gift of being reminded of this truth on a daily basis. I got a head start when I found that love in the pains of labor.
Natural childbirth is intense and so is life, if you do it right. I have to believe an experience that half the world has been having since the beginning of time must have value to it, despite what our society says. I don’t believe we’re meant to spend our lives hiding from things that seem hard. That includes parenting special kids. And I don’t believe you’ll ever know the intensity of love and joy I have known if you don’t do the same. Don’t sell yourself short. Life is waiting for you.
