Friday, February 15, 2013

The Big 4

This is the first year Collin picked his video song. He picked it by loving it above all other songs.

Happy Birthday, Big C.

Thursday, February 14, 2013

My Funny Valentine

Four years ago today, I was waddling through Target, holding hands with Kyle, glad that I had finished our taxes early, grumpy that I felt so tired and crampy, excited to get serious about putting our nursery together, and totally clueless as to how my life was getting ready to change. I think about that version of me from time to time and wonder at how much she didn't know.

Four years ago today, I knew next to nothing about the special needs community or individual disabilities. I was quick to judge temper tantrums as poor parenting rather than behavior disorders or sensory overload. I had never seen a seizure or a feeding tube or a bipap machine or a pulse oximeter. I thought there was nothing much sadder than a child in a wheelchair.

Four years ago today, I didn't know much about fighting. I thought I had a fighting spirit and I had read a lot about fighting for righteous causes, but I didn't really know what I (with a lot of help) was capable of in terms of endurance or fierceness or dogged perseverance.

Four years ago today, I knew very little about miracles. I thought they were complete healings or impressive spectacles, not split seconds of eye contact or wobbly moments of supported standing.

Four years ago today, I had no idea about whole categories of love.

Four years ago today, I didn't know Collin.

Happy Valentine's Day to me.

Tuesday, February 12, 2013

On Weariness

I haven't been posting much. Yes, it's partially from busy-ness, but we're always busy and that hasn't stopped me in the past. It's partially because we have all been sick and/or wrestling with some other physical malady (tooth pain, sinus pain, arm pain) back-to-back since before the holidays, but we've been through much more intense seasons of sickness before.

The truth is that I'm weary.

It's not the kind of thing that's really fun to talk about. It can be uncomfortable. It certainly doesn't make me look good. I don't want to make my friends and family worried that I'm headed back toward darkness. Besides all this, there's the fear of making people feel sorry for me. A friend posted a link to this article this week, which was a kind of balm to my soul, and the writer explains it well:

Too often parents [of children with special needs] assume they can’t share struggles. No, struggles are bad, because people may think we don’t love our children. If we complain, people may look at our kids and only see disability, instead of the million other wonderful things that make them who they are. So we carry on, stuff down the difficult parts of parenting kids with special needs, and attempt to be what others assume are the best parents for our kids.

An ironic addition to this reluctance to share difficulties is a nagging feeling that maybe they're not really so difficult. That I'm making a bigger deal out of our struggles than I should.

Right now, for example, there is no one particular thing. Nothing acute. Collin is getting over a respiratory virus again. I'm tired of winter. I have slept through the night once in the past 3-4 months. We're starting doctor-appointment-season. Collin is getting harder to physically maneuver. But even added together, these things don't account for this more-than-exhaustion tiredness I'm wrestling the weight of.

I was discussing it briefly with a friend over email and she gave me my first glimpse into the root and nature of this thing I haven't been able to name:

Please take care of yourself... I know you understand these things [realistic planning, time for renewal], but I also know that the practice is difficult, especially when you are caring for someone who needs so much from you every day.

There it was: the tension I've been feeling without realizing it. It's the difference between knowing what to do for myself and the logistical ability to do it given Collin's needs. It's wanting to enjoy being the mother of a four-year-old boy, but having to constantly analyze his signals, reassess his progress, and speculate as to what might be better/best for him. It's trying to be in the moment while knowing that I will be working through these same issues indefinitely.

Place these tensions in the social sphere, and you get a whole new layer of complication and difficulty. Another friend and I are reading through a book on grace and goodness together and discussing it over email. I shared about how scary it feels to invite people into our home or life because our situation is so foreign to many people and I fear their response to it. Her insight was so pointed and beautiful:

Think about it. The hardest thing you've ever gone through and the hardest thing you face probably on a daily basis is on full display for every stranger who passes Collin on the street - much less anyone you invite into your home. . . no one wants to talk about or share the most difficult thing in their life with everyone they meet - even if it is also the best thing in their life, even if they are the most well-adjusted person on the planet. I can't imagine what that must be like.

So the other aspect of this exhausting tension is the fact that it is always visible. It's a kind of forced vulnerability. And it's permanent.

What to do with all of this? My instinct is always to come up with a plan: if I rest x-many hours a week and take x-many vacation days and get involved in x-y-z play/support groups, then I will be able to bear it all with grace. If only. Even I know that this is not something I can just fix. Any grace I get will be a gift and not of my own doing.

I actually got some great advice when my sister sent me an excerpt from one of our favorite health blogs. She and I have been talking a lot about the sleep deprivation piece of all of this, but I felt like the overall message really applied to this weariness issue.

It’s important to not lose sleep over losing sleep. In other words, being the parent of a young kid sometimes means you’re simply going to miss out on sleep on a regular basis. You can’t always change that, so you have to accept it. And accepting it is a crucial step toward ameliorating the negative effects. Lack of sleep will still be exerting negative health effects. . . but stressing out about it will only compound the problem. If you can eliminate that added unnecessary stress, you’re going to be healthier in the long run. This is what makes humans so uniquely susceptible to bad health – we stress and worry and fret over the initial health malady, thereby making it even worse.

My takeaway: this is just how things are right now. I'm not worried about it or even sad. But I'm not pretending that it's not real, either. I love Collin and I love being his mom, but I'm weary. I accept that. And just that acceptance makes it feel less wearisome. It helps me to see that even though the situation is permanent (as much as anything in this life is permanent) and the vulnerability is permanent, the weariness is not.

Collin the Croup.
This is his get-up on sick days.