So when I set out to become a “blogger,” I had this idea that it would serve as a way to tell my spiritual journey. But then I started writing and it became more of a journaling experiment. Which is fine. I’ll just write some of my deepest darkest fears/thoughts/ideas/circumstances and let everyone who stumbles across this blog read them, and judge them. But I do some of that on social media already so I guess the question is, “What’s the difference?”
Well here, I want to be transparent, and a little more professional. More professional than re-posting random stuff I find on FaceBook and then trying to defend my stance. So here goes… The story I’ve been wanting to tell. And all the off-shoots it will take along the way.
My husband and I had a nice life. I was a stay-at-home (SAHM) mom of two young boys and my husband had just accepted a job with a large corporation that gave us the opportunity to move back to my home state of Colorado. I had always wanted to be a SAHM, even though I had a college degree, a good career and was 12 credits shy of my Master’s Degree. I thought it would be a dream to be at home with my children instead of having to put them in daycare. Plus, being a social worker doesn’t leave a whole lot of disposable income left over for daycare.
I have always wanted a large family. Even before we were married I had said 5 kids and Hubby said 2 and then somehow we settled on 3. But after our cross-country move for my husbands’ job, and just 8 months after moving, my husband was fired from his job. We started panicking. I started applying for social worker positions but had been out of the workforce for so long people weren’t interested in my resume. Then Hubby stumbled across a really exciting opportunity. Basically to come in a fix a troubled situation. And boy did he thrive. Crisis averted. So we decided that we could have that last child I had wanted so badly.
We got pregnant almost instantly and my youngest at the time started preschool. It was awesome to see our family growing and achieving and moving up in the world. Then, at 25-weeks and 2 days, I went into labor. I had, up until that point, a perfectly normal and healthy pregnancy. We didn’t opt for any additional genetic testing because it didn’t matter to us what the baby was like. We were just happy. We found out it was going to be another boy and I can admit, I was a little sad. I had REALLY wanted a girl to be the end-cap to our story.
So when I went into labor 15 weeks early, we were completely shocked. Because nobody discusses those possibilities with you when you are having a normal pregnancy. Landry was born weighing 830 grams and was only 13 inches long. His eyes were still sealed shut and he had fine lanugo hair all over his tiny body. Hubby’s wedding ring fit incredibly loosely around Landry’s wrist. He was on a ventilator, tube fed, and it was 5 days before I could even hold him. By day 15 he was so sick that he had to move to a new hospital. Turns out he had a silent colon perforation that included sending him into septic shock and full kidney shutdown. On day 18 of life, his heart stopped 3 times and we were called in by a nurse in an emergency to come say “good-bye” to our sweet baby who we didn’t even know yet.
When we got to the hospital he was barely alive. He was on an oscillating ventilator that basically shakes the babies body constantly in order to keep their lungs open. He was on so many different drugs, one of them morphine, just to keep him alive and out cold so he wouldn’t be “uncomfortable.” The doctors themselves couldn’t even bring themselves to tell us we needed to say goodbye. The charge nurse was the one who told us to call our family and bring our older children in so everyone could meet him in person and say goodbye all at the same time. They gave Hubby and I a room to sleep in so we would be right there when he passed.
We couldn’t make decisions about having him baptized, about having him buried, about who to call. See, we didn’t belong to a church. I grew up believing in evolution and Hubby grew up in a strict Pentecostal family that he no longer felt attached to. Plus, how do you say goodbye to someone you don’t really even know yet?
There were these alarms or sensors of some sort in every room in that hospital that had the same code on it. “PSLM-#####.” I don’t remember the numbers or letters or anything else and I do realize that because we were at Presbyterian/St. Luke’s Hospital that is most likely where the PSLM comes from, but one day, sitting in that room they give to parents whose child is waiting to die, I looked up the Psalm coordinating to the numbers that were on the sensors. That was all that was in that room, just the Book of Psalms, not even a full bible. And in that coordinating Psalm, I found peace. I started to believe that maybe, just maybe, there was something greater than me and Landry and this current life.
A couple weeks later, Landry was doing slightly better but not even close to out of the woods yet, but we were back to living at home and traveling to the hospital everyday to see him. I was taking a shower where I had subsequently begun a daily ritual of praying. Praying for peace, for calm, for a miracle, for help for the doctors, and mostly for strength. Landry had recently had another set back and I was probably just asking for mercy. I heard my dead grandmother, clear as day, like she was standing in the shower with me say, “It will all be ok, Jennifer. I promise it will be ok.”
Meanwhile, my parents had starting taking care of my middle son because his preschool was only half day. They started telling me they were concerned with his physical development. Then the preschool called and wanted to have a meeting because they too were concerned. I took him to the pediatrician and had a physical therapy eval but the thing is, I had real things to worry about. A 3 year old who couldn’t skip or hop wasn’t on the top of my worry list. Even his pediatrician wasn’t worried.
After 3 hospitals, 8+ surgeries, and 199 days in the NICU, Landry was finally released from the hospital. He was on oxygen, legally blind, had a GI system that didn’t work properly so he had a central line that delivered a chemical nutrition straight to his blood stream, he was missing almost all of his cerebellum, had kidney disease, chronic lung disease and weighed only 8lbs. We were instantly thrown into a life of learning how to do sterile line dressing changes, having therapists in our house on a daily basis. Having at least 4 doctor appointments a week (in fact, the first week he was home he had 11 doctor appointments) and having a working relationship with medical care providers that bordered on intimate.
Meanwhile, everyone kept bringing up Declan and their concerns for his development. Almost a year to the day of Landry’s release from the hospital, we found out Declan had the rarest form of muscular dystrophy currently known about. He was diagnosed with Emery-Dreifuss Muscular Dystrophy at the tender age of 3…7 years before most kids with this kind of MD are usually diagnosed. If you know anything about MD it is a hereditary disease and is usually X-linked, meaning I am the one who gave him this disease without having any idea I was a carrier.
Thus began our second medical journey with another of our children. While not as severe as most cases of MD, Declan suffers from weakening muscles, exhaustion, and joint constrictions. He has endured 2 surgeries so far to help release his Achilles Tendon’s. He has a heart condition that will most likely be the cause of his death. He is a fighter and resilient in ways I don’t think I’ll ever be.
And again I was left thinking, what the hell God? Do you even exist?
Then began the crumbling of my marriage. I had found a couple new girlfriends who I completely immersed my self with because I could complain and cry and laugh and make crude jokes and it didn’t feel like they were judging me. And Hubby found solace in another woman. Someone I considered a friend. We did girl things together and family things together with our kids. And the whole time there was another relationship going on I wasn’t even aware of. And let me be completely honest here: If I had a job and had been leaving the house and interacting with other adults, it could have just as easily been me who strayed. I was so lonely. Hubby was so lonely. We didn’t see life the same way anymore. We didn’t talk about our grief or challenges.
We never said to each other (and maybe not even to ourselves) “This isn’t the life I wanted. This isn’t the life I signed up for.” We kept it bottled up inside until finally, one day, Hubby asked if we could see a counselor. And so we did. And a year into counseling, I finally found the evidence of an emotional affair with someone I considered a friend on Hubby’s phone. And again I thought, What in the actual Fuck, GOD?!?!?!?!
That was a turning point for me. See I have always struggled with depression and anxiety. And this revelation sent me over the edge. There were days in the car I would try to hit 100mph to see if I would get caught or think about swerving while I was driving that fast to see if I could die. And I usually had at least one child in the car with me when that happened. I thought about getting in my car and driving away while the kids were at school and never coming home. Being one of those moms people talk about. “How could she just leave like that?” Well, now I know. I know how women can just leave like that. I started seeing a physiatrist on the strong urging of our therapist and when I came home with all these new pills I calculated how many I had and how many it would take for me to die. I had enough, more than enough actually. I’ve thought about turning on my car in the garage but I don’t want my children to be the ones to find me. I’ve thought of slitting my wrists but I don’t have the guts for that. Mostly I just think about driving off a cliff. It sounds like the easiest, can provide different versions of a story for those who don’t want to admit that I would take my own life and fulfills a sick enjoyment I have for that last scene in Thelma and Louise.
Luckily for me, I ran straight into a spiritual awakening instead of a guardrail. I found Father Richard Rohr in his book The Universal Christ and then a corresponding podcast. I found Glennon Doyle who told me I could believe in Black Lives Matter, LGBTQAP+ rights and abortion and still be loved by “God.” I found Jen Hatmaker and Anne Lamott and Nadia Bolz-Weber and Brene Brown who all said the same things.
Then COVID-19 hit and I started a class with Dr. Laurie Santos and started listening to her podcast. And with all the strife and divisiveness in this world, it has truly been a struggle to see God around me and in my life. There are more and more health issues for each kid to deal with. My heart is still trying to heal from our marriage issues. We fight, for each other and our family. But life is still hard. And then I see young black men and other POC dying at the hands of people who have power over them and a president who doesn’t seem to care at all. And it makes me heart sick. How do we find God here? I think Hubby has stopped believing in God altogether which is honestly a little funny considering where we came from in the beginning of our relationship.
Today I was listening to a Happiness Lab podcast and she talked about the fact that we need to stop trying to be “good people.” That all we really should be striving for is good-ish, because ultimately, we are all human and we will eventually make a mistake. We will make mistakes as parents, as daughters, partners, community members. And if we keep an open mind and a growth mindset and we strive to be good-ish, then maybe, just maybe we can live in peace.
I know that sometimes I wish I hadn’t become a mother. I know that I have pretty regularly said “this isn’t the life i wanted,” and I know that I have had thoughts of running away from my life. And those thoughts aren’t going anywhere anytime soon. But if I keep trying to be good-ish, I hope that I am able to set an example for my children of what a good-ish human should look like. Someone who wants to understand more than be understood. Someone who wants to grow more than they want to be right. Someone who loves more than they hate.