Blog

Unringing the Bell

Sometimes it would be amazing to unhear or unsee something.  A chance at a do-over is the stuff of great novels and daydreams.  We all want to take something back and start over.  Sometimes it's impossible.  Sometimes you can use the point where it all fell apart as a launch pad for something new and deeper. The devastation I felt when my husband left me was traumatic but there is value in it.  I have learned so much about myself and I have found true joy in who I am.  There was a cost but I didn't expect the payout to touch so many various areas of my life in such a ginormous and beautiful way.

In 2012 I was hospitalized with my last surrogate pregnancy for about a month.  At 25 weeks gestation, a regular check up with the neonatologist showed that my cervix started funneling and the twins were trying to come out. Well, more like my body wanted to force an eviction. I've always been blessed with fairly easy pregnancies and contractions I couldn't feel until I was about ready to push. Why else would I be willing to be pregnant 6 times? I was planning a pedicure and Target trip that day but I was told to head straight to the emergency room. I couldn't stop at home for my laptop or Kindle or even extra panties.  I was in a hospital bed from week 25 until week 29 when they were born.  They eventually left the hospital and then the country.  During that time I was on complete and total bedrest, and allowed to take one 5-minute timed shower while sitting.  The rest of the time I was stuck having nurses give me bed baths, and I spent a week in the trendelenburg position.  This means my bed was tilted so I was laying upside down at a 45 degree angle to keep gravity from doing what is natural.  I will always feel like I could have done things a little differently to keep them in longer and give them a stronger start in life.  I can see most would imagine I did enough, but believing there is always more to do and that I could do a better job is just who I am. I deal with it.  You should too.

This time of being forced away from my family reset things for me.  It gave me a do over. I realized that motherhood was a gift I was squandering in superficial ideals of what I should do and what I should be while my kids suffered my short temper because I couldn't possibly do it all and be happy about it at the same time.  I came home and things changed.  I decided I would be the mother my children deserved, rather than the mother I wanted to be. I started putting their needs ahead of mine and the desire to whine about it settled into a version of peace for me.  I stopped feeling defeated because I felt what it was like to not be able to sleep with my kids near me and steal random hugs whenever I felt son sick and needed a refill.  I never imagined it as preparation for shared custody.  I saw it as patience when I needed it and compassion when they did.

In 2005, my oldest was 4 years old and nonverbal.  His pediatrician with too many letters behind her name told me he would talk when he was ready.  At the time I was a teacher's aide at an elementary school and had a friendship with a speech therapist.  She suggested I ask the school district for an assessment.  His assessment was the same day as his first IEP.  I took him for the appointment and the team asked me to come back in a few hours and bring the whole family.

A few hours later I was there with the ex and our two boys.  They psychologist played with our kids on the floor while the rest of the team explained what autism is and that it was in our home.  They explained the characteristics to us and I right away made the connection that they were describing everything Kid2 does as well.  From the floor, the psychologist told us that in her professional opinion, Kid2 was also on the spectrum and his characteristics were more severe than Kid1.  Kid2 was still 2 years old and an official diagnosis wouldn't come until later. Autism spectrum disorders can often look like normal toddler behavior and while it may seem like everyone has autism through some sort of connection, they really don't like to hand out labels unless they have to.

My emotions were swiftly all over the place.  Before I left that meeting, I had cycled through the stages of grief (denial, anger, bargaining, depression) and I was at acceptance. Every thought and action for the next few years became, "But how do I help my boys?" I had to field the questions from family, making them feel better about what it was like for me to raise special needs kids because somehow the stigma affected them even though I was the one dealing with meltdowns and being a bad mother in the eyes of everyone around me.  It was a long time before I allowed myself to mourn the loss of expectations that were born with my kids and died in that meeting.  I would deny myself the freedom to revisit those stages and emotions because it wasn't productive.  I would instead go through a moment of sensory integration messes like poopy painting on the walls and floor and beg others to envy me in snark and frustration, not realizing that there really are women that would give anything for the work I faced in place of the grief they felt.

There are fewer expectations and more pleasant surprises. I was told my middle son would never even say, "Mom." I smile when he has long conversations about Nintendo or tells me how loved he feels.

My boys are still autistic.  That doesn't go away or fade into the background.  It's in our face with meltdowns from time to time. We do our part to make others autism aware, it just doesn't look like stickers and ribbons.  I'm usually good at knowing where their limits are but I constantly remind them that they need to communicate their needs.  I don't mind cutting a day short, but I mind knowing they pushed through a day of torture because they felt my needs were more important than theirs. I will always run the risk of a total melt down with violence if I try to change routines too drastically without plenty of warning and coaching along the way. The difference is they have learned ways to regulate how they feel and they have learned how they are expected to behave in society.  It's not a perfect formula but it's one we have all learned to work with.  At the same time, I am at peace with the idea that they prefer to be home at all times because it's a routine they can predict.  It's structure they crave and when they are calm, we all have peace.  That is until Kid3 has a meltdown. He doesn't understand he's not capable of competing with what his brothers have already done before he was born and the part of me he is poking with a stick has long since been broken and looks at him with pity and amusement.

Would I ever unring this bell?  Probably not.  Of course I'm Mom and would love to protect my children from every moment of suffering.  The reality is they are often blessedly oblivious to most social slights. I'm the one that sees more than I should and I may or may not have wanted to cut a kid because of it.

There are things about being a special needs mom I would never give up.  I'm an advocate.  I know how to fight for my kids.  I have.  I've won.  Fighting Like a Girl and Pulling Punches is all about what my kids have taught me. It has made me grow in patience and empathy.  I'm the person that won't judge the mom with the crying child in a grocery store because I know that child is probably hungry, tired, uncomfortable and bored. I know that parent has been doing all they can think of to do for their children while doing what they need to do in order to take care of themselves and be the parents they want to be.  We all try to do what we think is best for our kids.   Being an autism mom has made me an optimist.  I will always look out for the best in a bad situation and find the silver lining because that is a necessity in the life we get to live.  We have to stay positive because it's not just our joy on the line, but that of the children we are blessed with.  Their peace and sense of self comes from me.  I'm responsible for the inner voice that I've helped shape from their infancy. I'm responsible for their ability to navigate the world outside of our home and the thickness of skin that protects them from discrimination and aggression.

As for Kid1, he has the ability to see the world with a fresh perspective that takes each part separately and examines it carefully before putting it all back together.  He has a gift for art that is detailed because one of his superpower characteristics is to fixate on one thing to the point of mastery.  He amazes me with how he sees things and the specific diction with which he describes things.  One of his loves is my mashed potatoes.  He's always called them "smashed potatoes" because that is what I'm doing when I make them.  (Not much in my kitchen came out of a box until recent months.)

Kid2 is completely guileless.  While he would love to lie, he's often incapable of it. He has an open appreciation for affection.  He understands the value of a great big hug and snuggles that hold you up and together. He loves video games and will research and obsess over them. He's passionate.  He will have moments of joy and laughter and moments of rage.  The only times he is apathetic is when he is experiencing a sensory overload and needs to reset with hugs, and a calming routine. Or when he's being affectionate.

I've heard some lines about special needs parents being chosen.  I call BS on that.  The learning curve has been sharp for all of us, and we haven't quit or died trying, so we're doing okay.  But we're far from the saintly.  We know how to live on call every moment and know that an emergency is seconds away at any given time.  We've been judged for our parenting and had our instincts go against professional opinions and we've been right. Given true respite where someone we trust has our kids, we can let loose and party harder than the average parent.  We know how to accept a break when it's offered and we trust the person that has our kids.  At the same time, not everyone is trusted with our kids.  We're not magical or unicorns, but we learn to choose our battles and let the small stuff slide.  The big stuff will be a bigger battle than you could imagine trying to bargain for.

Right now this first draft is being written with 9 year old Kid3 having a tantrum because I won't allow him to eat Funyuns in my bed.  It's been about an hour of crying, throwing things and slamming doors.  It's part of his fallout when transitions between houses gets to him.  I'm at peace and ignoring him, except when he calms himself enough to talk clearly.  I respond calmly and talk to him at his level while speaking slightly lower than he does until he has begun to calm his voice.  I wouldn't unring this bell.

Hating Motherhood While Being In Love with Mothering Children

I can't tell you what kind of a mother I wanted to be because before I met my husband I didn't want to be one. My high school years included my parents and their journey as foster parents. I saw kids in foster care with more trauma in their lives than I have the right to imagine. Witnessing so much pain coming out as anger, hate and tantrums was really strong birth control. I saw that having kids wasn't all dress up and play time. I saw enough to know I wanted no part in that. It added to a messy soup of my trauma from the sudden (to me) destruction of my family. I saw my parents not talk for years and still live together and I couldn't understand what would change our functional dysfunction into not working and why my Mom would divorce my Dad. I get it now. As much as I love my Dad, and I do, I couldn't imagine ever feeling I wanted a husband like the one he modeled. I can see that same pattern in my own marriage now. I can see where I adopted my Dad's stoic indifference as my Mom railed out her frustrations and I would take my anger out on dishes and silence. I think of the ouroboros snake rather than irony. Irony alludes to humor and I see none when I look at my kids. A few hours ago I could hear my middle son rehearsing a made up conversation with his Dad and trying to make sense of what he has to work with now that most of his memories are impossible to see in the current changes in our family. Healing is a lot to ask for and I'm looking at it as an adjustment we'll all make. When I was pregnant with my firstborn, I was in a liminal space that was so beautiful I didn't want to see what was before it or what would come after it. I generally felt fine and infrequent bouts of morning sickness were distractions of novelty. I enjoyed the changes in my body and I remember we laughed as we explored the faint stretch marks that trailed across my belly as we marked week by week of his pregnancy. Even when I was bedridden toward the end and he wasn't growing steadily enough, I was in my own haven of life bearing. I was busy counting his taps and tapping him back. September 11th hit our nation in an attempt to strike fear in every home, and I was so focused on my husband's safety in downtown Los Angeles, that I didn't think far enough into the world to see that I would be sharing my child with it 15 days after the towers fell. It was a terrifying few weeks but early on I made a choice to not live in fear. A life of fear is hardly a life worth living.

Once he was born, I had to reconcile who I was with who I thought I should be. When I met my husband I was hanging out at pool halls, drinking with the guys and smoking 3 packs of cigarettes a day with a few cigars now and then. I was decidedly everything a mother shouldn't be. It took a while to discover there were a few things I could enjoy and things I wanted to let go of, but mainly I learned I couldn't blame my kids for my choice to have them, or hold them responsible for my choice to give up a few things for them. Joint custody has given me the space to be the mom they deserve when they're here, and the free spirit I crave to be can stay out of the house as often as I have been.

I remember his first birthday rolling around and I had the perfect outfit chosen for his party. I had no idea he was autistic then and how strong his sensory integration dysfunction was. I had a bad habit of taking him out of the tub and getting him dressed and then going back to drain the bathwater. It was after he was dressed that he climbed back into the water. I was so frustrated and angry and my upset only upset him into vomiting on himself. I already had my mother in law calling because we were running late and I was overwhelmed because he was climbing in the tub when I was telling her we were on our way.

I had our second child and his behaviors were almost the same as his big brother's. The differences were mild enough that I thought it was a personality variance. They were born 18 months apart and it wasn't until the older one was 4 that I asked for an assessment with the school district. We had an assessment and IEP on the same day and that afternoon we learned what autism is and that both of our sons had it. I remember right after the diagnosis I was at Kaiser and still pushing two kids in a double stroller. I was in a pediatrician's office and the boys were sick and being themselves. The doctor looked at me and said, "you poor woman. We have medication for this. You don't have to live like this." I sobbed into my hands at that moment while she stood uncomfortably, but quietly, affording me a rare moment to fall apart. After researching options I would later decide that the risks outweighed the benefits and I chose to medicate myself before medicating my kids unless they got to a point where they felt they were overwhelmed. Typically they're happy in their world, and it's others that are perplexed by their behavior.

With my youngest son's pregnancy I had the well meaning and quite invasive questions about my judgement in choosing to have a third child when we already had two with autism. It was during his pregnancy that I realized having children is a complete act of faith. With the stresses of a new child on a tight one parent income, I didn't always see the support I needed and I had to dig deep. I was very weak at times, even asking my OB doctor about late term abortions, which I had never believed in before. I realized having children is an act of faith in your partner and your commitment to a long lasting relationship that would see your children into adulthood. It's a physical expression of faith in a world that includes teachers, babysitters, family and friends that will all see and at times be alone with your child and it's faith that your child will live in safety with a protection that you can not see. It's faith that what has happened the first two times won't happen again and the blessings will outweigh the sacrifices. It's faith that I will be faithful in raising boys who will become men that will contribute to the world in a meaningful way and that my relationship with them will nurture men who will want to be the fathers and husbands their family deserves, rather than the one they might want to be as I find it a task of intention to push past my selfishness as a parent. I hope to one day nurture a servant's heart (as I'm still looking for it) and a spirit of generosity in them (that one I see when they ask if we can feed homeless people when we stop for fast food). I admit that the extended family, as a whole, only sighed in relief when the youngest was tested and found to not be on the spectrum. At that point our oldest offered to teach him how to be autistic. The baby has been hospitalized twice in his young life. The first time was for a near drowning. I didn't realize our firstborn had filled the tub to play with his toy Lego boat while he was home alone with their Dad or that the baby could climb into the tub at 8 months. My then nonverbal middle son (about 4 years old) saved his brother's life. The second hospitalization happened when he fell off the top bunk of their bunk bed. He was hospitalized for a few days for that concussion. I expect he will do great things in life. You don't survive trauma like that without having an indelible mark of destiny on your future.

My sons were born in 2001, 2003, and 2006. The following years saw surrogate journeys end in 2008, 2010 and 2012. I really loved being pregnant. Being a surrogate had more than monetary benefits. I was able to just enjoy the life growing inside of me. I went to my appointments with a cheering section that was there to celebrate and worry with me. Through my agency I was able to meet people I never would have encountered otherwise. I learned enough about fertility to understand the gift I had been given with irregular cycles and miracles on my side. After the first surrogate birth while my legs were still up in the air and I was in the glow of joy coming from the parents I had just gifted, I already knew I wanted to do it again. The last pregnancy was high risk. Being born is difficult enough. Usually we're all happy to see a wrinkled invalid that looks like it spent a few days being beaten up by a uterus. With each pregnancy, my body just seemed to know exactly how to shift and grow to accommodate the newest child. With the twins, my body had been through it five times before and decided it was at the right dimensions to start labor at 29 weeks. I was hospitalized to keep them in. I won't insult anyone's intelligence. There were extremely miserable moments. I held it together for the most part but it was difficult. It made me appreciate my kids when I couldn't see them every single day and just be with them. I felt like my choice to be a surrogate removed my freedom to complain. The agency and my couple were great about helping my husband at home, but I was so lonely during that time. I had this fear that I had to do everything perfectly or risk killing someone else's babies. That is a huge burden and in my hormone flooded state, I couldn't see how unreasonable I was being to myself. When they were born I would visit daily, then every few days to bring breast milk. When they left the hospital I felt relief and nausea. As amazing as my journeys were, I wasn't interested in another surrogacy and the agency wasn't interested in another high risk pregnancy.

In October 2014 my birth control pills gave me pulmonary embolisms. There's plenty of warnings in the fine print that comes with every pill pack. There's something about the level of hormones that triggers blood clot formation. I felt extreme cramps in my legs one night after walking a few miles that day. Later I had mild chest pain. It wasn't a big deal, except I typically didn't feel my chest, let alone pain from breathing. The doctor checking on me wasn't that concerned at first. He started with blood work that looked a little curious and followed up with an MRI. When he had the scan results he changed his posture and attitude from one that made it clear I was a hypochondriac to one where he sat down next to me and started looking me in the eye. I got it. It was serious. They couldn't release me or death would be their liability. I didn't really get how bad it was until the nurse hooked me up to the heart monitors and walked alongside me as I was rolled through the hospital to the cardiac intensive care unit. The nurses couldn't believe how casually I accepted the fact that sudden movements could dislodge a clot and I could have a heart attack or stroke. She was quite serious when she asked me to move slowly and freaked out when I wasn't moving slowly enough. I was hospitalized for a few days and on blood thinners for months and if I ever get pregnant, I would have to be on blood thinners and then reverse the medication for childbirth to prevent bleeding out. At the same time I can never go on birth control pills again. Hormones. When I start dating, there are many reasons a random test drive wouldn't be worth it. I still don't believe in abortion.

Believe it or not I'm more relaxed as a mom than I deserve to be. I wasn't at first. I've left kid parties early and never again spoken to mothers whose children treated mine badly. I've hovered in playgrounds as a barrier between my kids and anyone that would look at mine differently. It's not just playgrounds. There was one day at an In and Out in Laughlin a few years back when my son was being himself. A woman commented about his behavior and I apologized. After she watched us for a while she approached our table to apologize because she didn't know "there was something wrong with him." Clearly she missed the part where there was nothing wrong with his hearing. She left and I then had to apologize to my son for the ignorance of others. Now I will often try to let them sort out their own fights until I feel they absolutely need me involved. At least with each other. With strangers I'm still a fierce Momma Bear and I will cut you. Tonight kid1 had kid2 in a choke hold and kid3 was crying from kid2 punching him in the stomach. That required the Momster. Otherwise I listen until it can no longer be ignored. Usually if no one is dead, dying or has broken bones I'm good. I get cautious when I hear crying but it's that specific tone of crying that says there is pain or fear. That cry doesn't change from infancy. Mom radar is fine tuned for it and we have an ability to ignore most other noises, being hyper-aware when it becomes too quiet for innocent shenanigans.

We've had several conversations about all sorts of things. I write to find peace but I'm also a blabber. Usually this happens when we're in the car. They can't run away. I control the radio and there's no eye contact. We've talked about autism and what it means to our family. We've talked about divorce. We've talked about depression and suicide. We've discussed homosexuality. They know they'll always be loved and accepted no matter who they love. And yes, I talked to them about wet dreams and changing bodies, and individually I've had to talk to one about masturbation. This conversation happened in a closed bedroom. The first wet dream conversation was about 4 years ago. My oldest was 10. I wanted them to know it's a normal part of growing up. They don't have to say a word, just put soiled laundry where it goes and don't be afraid. I suppose moms with daughters have to have the period talk so their kids don't think they're dying. Lately my son's masturbation has been a problem because of his transparency. He's not great at hiding it and I'm not sure he even tries to. I told him private time with private parts should be private. I didn't want to body shame him when he's already othered from his contemporaries. I also suggested lotion might curtail injuries. It's not comfortable, but I know he has no problem talking to me and he felt relief after the conversation was over because in the end, it wasn't that bad.

I forget to take something out for dinner on many nights. Two to three loads of laundry a day will keep me from falling behind, but it doesn't save me from that special sweater that needs me to stay up a couple of hours on a Sunday night because they need it for school Monday morning. I do what I can without losing my calm and some things require them to compromise because I won't. Housework is not my friend when there are a million other things I need to do but on weekends when they're with me and I have nothing to do but listen to their sounds, it's relaxing to get a good scrubbing in. I realize they will talk like sailors if they think I can't hear them and my police patrols won't teach them to be the kind of adults I hope to raise. Homework frustrates me because I want to just give the answers. That was part of why teaching wasn't my calling.

I'm a mom. I'm a daughter and sister too. At the end of the day, I'm still trying to figure out who I am, but I know that the woman in the mirror is gorgeous and loved by the woman looking at her.