It didn’t occur to me because she was not yet two years old and the baby. However, it was inevitable, and I didn’t see it coming…
On a rare moms night out with new mom friends, I had already mentally coached myself to be a good listener and to not bore anyone with what was really going on in my life.
One of the moms happened to also be a special special mom with lots of parallel experiences to ours. Oh! How she is dear to me. We can be vulnerable without pity, and she holds space for us both to be as raw as we need to be. It’s the purest dose of empathy I have known. I love her. And it was through a chat with her that night where I gained foresight to make some decisions.
About pictures.
Huh?
Yep. Pictures.
Like I said, Natalie was still little at the time, and no one minded holding her like the precious baby she is. We had, at that point, taken some sweet family pictures that I treasure. But she was going to insist on growing, I suppose.
My friend’s special special was (is) a few years ahead of Natalie, so she was looking at things through her lens of more time on this journey. We were chatting in the home of our hostess and admiring her family photos scattered throughout the bookshelves. My friend was having a moment I got to witness. Perhaps of processing some grief; certainly of enlightenment for me.
Our babies were no longer going to be babies. They weren’t going to be able to sit in the bluebonnets with their siblings the way our friends’ kids were. We might not get to coordinate certain outfits or pick certain locations to document this year’s smiles and growth. There may not even be smiles on command. The pictures we were going to be taking would look different. Full of obvious limits and perhaps full of many of the pieces of medical devices that make their lives work.
And that felt really. really. not. fair.
That was a limitation that hadn’t yet surfaced in my little family bubble. When you’re sleep deprived and only dealing with the urgent, there’s not a lot of time for reflection, planning, or feeling too deeply. It may prevent you from jumping into action at the next fire that needs to be put out. So in that moment, away from my house and family, there was just enough room to have the epiphany slap me across the face. It felt like something precious was stolen.
There is a set of silly family pics that flashed in my mind. Each one of my sisters and I have a photo peeking up from the side of the bathtub. It’s adorable. I love those. One year, we made a special gift for my mom with all of them together. There is even a parody picture in my parents house. It’s hilarious and cute. My oldest daughter has a picture in this style now also. Arguably, it’s even more adorable than the previous generation.
Natalie won’t have one like that.
I realized all that as my friend and I chatted. A rush of anger and sadness and jealousy quietly stormed inside. I tried to hold back violent sobs in the middle of a delightful social gathering.
But as my friend does, she reminded me that all the difficult things we hold - the things that no one could possibly understand - are not the ONLY things we get to hold. We get a massive amount of joy and wonder not everyone is privy to as well.
She said something next that my memory recalls: “I just put up the damn pictures anyway.”
The ones from the phone. Put up the damn pictures anyway. Print them off on nice paper and frame them. The weird and wacky and completely other kinds of pictures. We take pictures anyway, don’t we? Wouldn’t you? With syringes and monitors and oxygen in the shot.
Those. Frame those, display those. Love and cherish those very real and joyful moments where you DO catch a rare smile. Or a meme-worthy side eye. Or a long-awaited milestone. And the ones where everyone gets to be in the picture - those, too! Even if mom stayed up all night unexpectedly and is wearing no makeup, and the sister is in awkwardly mismatched clothes, and the lighting is terrible. Those are the ones. “Just put up the damn pictures anyway.”
Don’t get me wrong, professional photo shoots are gorgeous, and if you let me, I will gawk at yours all day. That whole world has also come a long way from the Olan Mills photo shoots of the 1990’s church directory. They can be fun and candid and capture all beauty and personality in a family.
The thing that gets me in all the feels is having options taken away or massively altered because of a medically sensitive person in the family. Why do they have to be without just because they’re different? Even though the world has come a long way in making amazing accommodations, I think the mama bear in me is just going to rage at the slightest perceived injustice against a differently-abled person based on my (relatively new) personal experience. It still feels pretty raw sometimes. You might just have to forgive that mama (me!) because processing this always seems to be just beyond capacity.
That night chatting with my friend was pivotal, but I didn't get to really put all this into practice until later...
It was family picture time! In November, but still very likely to be hot in Texas. I was supposed to be like any other mom on the block: trying to round up coordinating outfits and prepare for this year's holiday photo. I was really stressing myself out trying to pack Natalie's stroller for the quarter mile stroll up to the site in our neighborhood without sweating too much in the process.
I remember arguing with Paul about what we really needed to take because we weren't going to be gone long. But she needed so much, and I was in the throws of understanding that she needed all the meds, monitors, and gear all the time, no exceptions. She was maybe two or three months in to needing oxygen around the clock, too. Was that going to have to be a part of the Christmas card this year too?
The part I remember vividly - the part I try to have compassion for now, even though it was ridiculous at the time - was me trying to explain what I wanted to this young photographer (who had no clue and didn't see me coming in hot with my special special and all our gear). How I didn't want the oxygen tank in the picture and that right before he took a picture, to wait for me to scurry in place. But to go fast! Because I needed to have the cannula back on her in less than a minute.
That poor baby. She was forced to have so much patience with me. As was the photographer and my other daughter and everyone else. It would be the last picture taken without medical paraphernalia intertwined. Even though it was just out of the shot.
I still grieve at times on what we can't do. At all or yet. And even though I want to wrap a bow on this thought and encourage you with a note of resolve, I'm not going to promise anything like that, either.
But you do get to determine your own mindset about it.
The new question becomes, for me at least, is how do I make her experience just as fun and special and whole as the experience anyone else gets to have? That helps curb the temptation to rage against what we don’t have.
I GET to focus on what we do have and look for ways to make it part of her best life. That is now the special special privilege we have to enjoy.
