The Essentials: Part 2

Collin chasing his cousin, backpack in tow.

Collin chasing his cousin, backpack in tow.

Collin has a backpack. It is red and black with wide straps and lots of compartments. He carries it on the back of his wheelchair; or, if we're going somewhere without the wheelchair, on the back of one of his parents. 

The contents are nothing like what I imagined my six year-old packing up and lugging around. 

The backpack carries our second tier essentials - items that are half a step away from being nonnegotiable.

- Noise canceling headphones. Collin's uncle picked these out as a Christmas gift one year and they are one of our best and most-used tools. Because he can slip into sensory overload depending on the size/acoustics/vibe of a public place, these provide the perfect way for Collin to continue enjoying himself in a place that would otherwise bother him. And he looks really good in them.

- Extras. Extra g-tube. Extra syringe and extension. Extra gauze.

- Venting syringe. Everybody burps. Even people whose esophagus has been turned into a one-way valve via Nissen wrap. Collin burps by hooking a short extension with a smallish syringe minus its plunger to his g-tube and letting the air out. Just opening the tube port doesn't work because it is also a one way valve. Let too much air accumulate in that tummy, and you have a problem on your hands.

- Pullups and wipes. Collin is potty trained, but accidents do happen.

- iPad. Our portal to all things good. The iPad is a life saver in so many situations. It is the workhorse of our daily life. It is in use probably ten hours a day, whether for videos, audiobooks, music, vision exercises, or hand use practice. Paired with the noise canceling headphones, it can fix virtually any problem.

- Food and meds. Because of Collin's diet, we can't pick up food for him while we're out. So we need to know how long we will be gone - or more specifically, how many mealtimes that will span - and bring that many jars of precisely calculated and measured food, along with accompanying supplements.

- Norwex cloth. Collin's drooling (or 'drizzling', as his cousin calls it) has gotten SO MUCH BETTER over recent years, but some positions still make it hard to control. These cloths are super absorbent and anti-microbial, which is good considering how rarely I remember to put them in the laundry.

- Some normal things. Lotion. Glasses cleaner and case. A deer or duck call. (What?! You don't carry animal noisemakers in your bag?!)

When we were little, my sister and cousins and I always packed bags for our adventures. Toys, books, snacks, a picnic blanket that could double as a cape or a tent in a pinch. There is part of me that aches at how different Collin's bag is from ours. 

But there is another, steadily growing part of me that sees that Collin's backpack IS packed for adventure. Because of what's in that bag, we can go to the park, to restaurants, to the zoo and the orchestra. Because of that bag of items, we are free to venture out our door and into the world.

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.