I Can't Imagine

This past weekend we had the opportunity to connect with a number of other PIGN families across the world (OK, mostly the US this time, but we had Northern Ireland represented as well). It's always so uplifting to spend time with our community, sharing successes, updates and questions. 

I did shared that in recent weeks I had commented to Dave that I don't think it's a coincidence that 4 of us PIGN moms have been diagnosed with cancer in the past 2 years. I made the comment that these kids are killing us, joking but not completely. And another mom chimed in with her story about her autoimmune disorders that began after her first child with PIGN, echoing that the chronic stress takes a toll on our bodies. After listening to the recording, one of our Italian moms said it so well, "I agree with you that we give life to our children by taking life away from ourselves." 

This community gives us a chance to talk about the blessings, and the challenges, of our lives. Each child with PIGN is writing their own story, so each set of challenges look a bit different. I often hear of the hospitalizations, the failure to thrive and the medical marvels required to keep our more medically fragile children alive and wonder how on earth their parents do it. I see our single parents managing this all on their own and am in awe because even with strong support in each other, Dave and I still struggle. Yet I hear the mom who's lost a child to this disorder and who's nearly lost her other daughter 4 times this year say, "I can't imagine!" when she considers how hard it is to parent Teddy because he's so active, mobile and can get himself into so much trouble. 

Trouble? This kid? All. The. Time.

If you're wondering where I'm going with this, I think it's the realization that each of our journeys is ridiculously, insanely hard. It requires constant giving, constant sacrifice by all members of the family. It requires life looking so much different than we ever thought. It means that the simple things aren't simple. (Heck, trying to stop by a bowling alley to say hi to friends yesterday involved almost barging into a pool game and stealing their balls multiple times (but getting a kind high five in the process) and inviting ourselves to sit down and attempt to steal another woman's newly delivered pizza.) It doesn't matter how much or little speech our children have. It doesn't matter how many seizures they have. It's all hard. One version of hard isn't worse or better than another.

Yet, in the grand scheme of things, we'll always take this hard because it beats the alternative. We know the alternative is not having our children on this planet. We've mourned with those families who've experienced that loss, and we know they'd give anything for one more sleepless night, one more day (even if spent in the hospital) or one more panicked moment of "temporarily misplacing" their child when they elope. 

The things that are normal for our family are not normal for society. But we've built a community and have found wonderful humans in our community who accept us as we are, whether that's for the brief moments we interact or by becoming a part of our tribe. And community helps us handle the things that no one can imagine that are reality.