Not Ashamed

Last week, I mentioned my death match with postpartum depression. Many of you have come alongside us more recently, so I dug up this post from Collin the Champ way back in 2009 and am sharing it with you today as written:

Many of you know quite a bit about the trials Kyle, Collin and I have endured since February, but few know the extent of the darkness we have walked through together. Between Collin's first stay in the hospital and his diagnosis of Infantile Spasms, our family faced a devastation of a different nature. I have been finding lately that it is difficult to write truly and accurately about Collin's journey and the things we are learning through it without referencing this time. So, consider it referenced.

When Collin finally came home from Children's Hospital in March, Kyle and I had very little knowledge and no medical support for helping us adapt to the feeding tube and Nissen wrap. We were only told by a well-meaning but misguided nurse to avoid 'gagging' (what we now call 'retching') at all costs, because it could break the Nissen wrap; this, in Collin's case, would mean aspiration and potentially pneumonia or death. So when, 10 days after we brought him home, Collin started to retch violently while he was in my arms, spewing milk through his feeding tube and up into the air while his face turned purple, my brain broke.

I don't mean to make light of the situation, I only mean to speak the truth. After the strain of a month in the hospital, fearing for my child's life and enduring countless tests, procedures, and surgeries, witnessing this much-feared event snapped something in my brain. I immediately started shaking and felt that I was going to throw up. I had to give Collin to Kyle and leave the room. By that night, we had determined that we should go to the emergency room, at which point we were admitted for a hellish three-day stay that determined nothing. By the third day, I was not eating, drinking, or sleeping at all. I could not stand to touch Collin and could barely look at him, yet I would not leave the room. I remember lying on the cot next to his bed planning my steps across the hall to the nurses' station to ask how I could get admitted to the hospital as soon as possible. At least there they would hook me up to an IV.

Luckily, Kyle got the name of a psychiatrist who specialized in postpartum issues and, by some miracle, got me an appointment for 2 hours later. When the minutes finally dragged by and I shuffled, hunched and shaking, out to the car and into her office, I learned that I was experiencing Acute Stress Disorder. This, she assured me, was a normal reaction to intolerable circumstances, and I would get better.

I wish I could say that that was the turning point - that knowing what was wrong helped me overcome my crippling fear and bewildering sadness. Instead, after a brief high following the appointment, I plummeted into a deep, dark postpartum depression. There are no words to describe the alternating numbness, terror, and despair I wrestled with during those days and weeks. I was consumed by irrational fears and thoughts. I woke up every morning positive that Kyle was dead. I had to talk myself into going downstairs, because I felt certain I would find something wrong with Collin when I got there. I thought I was going to die. And worse, I thought I would never be the same again.

My mom saved us by coming to live with us, because most of the time I could not even bear to be in the same room with Collin, much less care for him. I spent my time in the back room by myself watching nature shows over and over because anything with people caused too much anxiety and sadness, yet I had to have something on to keep me from losing the shred of control I was clinging to. By this time, I could barely even speak, for reasons I can't quite explain. My legs shook when I tried to walk, my throat closed when I put food in my mouth, and my body felt like I was constantly bracing myself for the next terrible thing. Yet, at the same time, I couldn't bring myself to care about the next terrible thing, because it all seemed pointless and hopeless. I won't even go into the implications all of this held for self-image and self-worth. I didn't feel like a bad mother - I didn't feel like a mother at all.

But slowly, bit by bit, and with the help of loved ones, I started to throw everything I had at this consuming monster. I got on some medication. I found a killer therapist. I got chiropractic treatment. I started to read books on postpartum depression. I wrote things on cards - scriptures, true and/or encouraging statements - and carried them with me everywhere I went because I couldn't see the truth on my own and needed to remind myself constantly of what it was. I kept a book in which every morning I wrote the things I would do to help myself get better and every evening I wrote my successes for the day. At the beginning, my goals were to drink water and go outside the front door for five minutes. My therapist taught me to celebrate every small victory, and I remember how excited everyone was the first time I ate a half turkey sandwich and how proud I was the first time I walked all the way to the corner. I like to look at the page when my main success for the day was: 'I smiled.'

Gradually, I started to sit in the same room with Collin for part of the day. I held him sometimes. The picture above is of one of the first times I held him - I couldn't stand to hold him in my arms, but I could handle having him in my lap. Then I started changing diapers. Then doing tube feeds. Then playing. Then cuddling. My mom started to go home on the weekends and Kyle and I slowly learned how to be parents in the midst of everything. Finally, we put together an exit strategy for my mom. I remember the day she pulled away for the last time. I stood at the front door, holding Collin tightly and making him wave and crying from happiness and sadness. It felt so strange to go back inside just the two of us.

I had been caring for Collin on my own for about three weeks when we got the Infantile Spasm diagnosis.

As I'm sure you can imagine, I thought twice about sharing all of this. But I didn't think about it more than twice, because I am not ashamed of it. I am thankful for the friends and family who pulled me through. I am more adoring and appreciative of my son than I thought possible. I am proud of myself for the lengths I went to for healing. But I'm not ashamed.

The Rest of the Diagnosis Story

At one point during Collin's lengthy bedtime routine Saturday, Kyle clipped the top of the lava lamp with a pillow. "Phew Collin!" he said as it teetered back into place, "That was almost catastrophic!"

And in that moment I realized that my post on dealing with diagnosis wasn't quite right, with its our-diagnosis-is-a-tool and lah-tee-dah. The things I wrote were true, they just weren't complete.

Because that wasn't our first diagnosis.

I can see myself, clear as day, in the wicker chair from the bedroom of our old house, this same laptop on my knees, watching videos of other babies doing the same, strange jack-knife move my own four-month-old baby was doing five, ten, twenty times in a row throughout the day.

If your baby is doing this, the kind, pitying description explained, calmly pack your things and go to the nearest children's hospital.

Infantile spasms, it said. A catastrophic seizure disorder.

It was a Sunday. Kyle's first Father's Day. It was shortly after my mom had moved back home, a sign that I had really survived my death match with postpartum despression. The three of us were lounging in our pajamas and I was planning on making blueberry pancakes - one of the first normal things I had dared to dream up since Collin was born. It was like I had relaxed enough to take a deep breath, but what I drew in was two lungs full of fear.

Because there's no other way to describe it. Terror. Horror. As I read in the online support groups that day about parents ordering hospital beds for their children. As I saw the looks on the faces of the technicians during Collin's EEG. As we were escorted to the emergency room straight from the incomplete EEG and told we would be staying.

Though we cried off and on for days after Collin's Infantile Spasms diagnosis, we didn't really feel the despair until later. We were too hopped up on fear to have room in our blood for good old grief. I had trouble eating. We didn't sleep well for a long time. I could feel a dark force descending on me and through it swirled unfamiliar machines and equipment and injections and medications. I braced myself for the storm, but felt sure I would be swept away.

I had no way of knowing that the contents of that storm cloud would eventually condensate and fall out of the sky over my head, that the soil of my life would soak them up. They wouldn't litter my landscape - they would be used to form it. And even though that landscape looked like an uninhabited and inhospitable place to me at that time, I couldn't have known that I would learn to be genuinely happy there. 

That Sunday was the first time I remember Kyle saying our mantra: Collin is the same today as he was yesterday. It wasn't a particularly rosy sentiment, so I was surprised at how comforting it was. The comfort came not from being easy, but from being true. I hadn't lost my ideal son. I had been loving the wrong version of him all along. My version, not his. Now I had a chance to look back and see his first months through different eyes; in a very real sense, to see what I had been missing. 

But not even these insights could penetrate the fear of those early days after the first diagnosis. It was consuming. I felt lost in it and couldn't catch a glimpse of anything through it. If only I had known there was a me somewhere out in the future who would write something like this. That she would be healthy and grateful and cheering me on.

So now, on those days that are so much harder than all the others, I imagine a me I don't know, years away, thinking and reading things I can't imagine right now, looking back on me with compassion and pride.