Day 23 post-IVIG
I cried on my way into work yesterday. This is not an unusual occurrence, as my fellow PANDAS and autism moms know. What was unusual is that I was crying tears of happiness. This has not happened in some time.
I cried about tomatoes.
(That Lady Gaga song "The Cure" coming on my XM didn't help. See tear inducing lyrics below. The song is definitely not about mom healing her kid, but it gets me anyway)
We had noticed over the past week that Max's flare was ending and he was gradually improving. I'm afraid I'm biased so I always ask my husband and Max's dad for their input. They're a little more skeptical of treatments than I am so I figure there's less "observer bias." Day 19 post-IVIG I came home from work and asked how Max's day was. My husband told me it was a good day. He took the kids to the park and Max actually walked up an enormous hill, walked some more and then later came home and voluntarily played outside with the neighbors. This is mind blowing. For so long Max has been tired and agoraphobic. We have had to force him to spend 30 minutes outside each day and he spends it sitting on the porch. When we get him to venture off, his phobia of bugs sends him running inside.
The Bear had kept him locked away inside, afraid and drained. Far from sunshine and grass under his feet. From Summer. It took the Summer. But it's not Labor Day yet and the tide is turning in the battle.
That night I tucked Max into his own bed and walked out and turned the hall light off. Did you just hear that?! No begging to sleep on my floor. No stalling and rituals to keep me in the room. And he didn't insist I leave the hall light on. Aside from the fact this meant we all would have uninterrupted sleep that night and be slightly less sleep deprived, it meant he wasn't afraid. He wasn't afraid someone was going to come into our house and kill us in our sleep. He usually is. Sweet dreams.
Day 21 I had a day off work and could spend it with the kids. I decided to have a talk with Max. The night before, my husband had pointed out his food choices have been restricted down to two things. Literally two foods he's willing to eat. All time worst for him. So, now that the flare was clearly over I gave Max the post-flare talk I have developed over the past few months. "Max, you're not flaring anymore and we're going to work on your eating and expanding your comfort zone." He groaned but complied.
I took him grocery shopping with me and we walked every aisle with me asking "Would you eat this?' "Would you eat this?" The foods didn't need to be healthy, they just needed to be different from his two current foods. Was it pretty much nothing but dairy and gluten? (the two things he really shouldn't be eating) Hell yes. But this is a process.
I ventured a bold maneuver that day. A test of the power of IVIG. I was drawing a line in the sand with the Bear and seeing who blinked. I took Max to the produce section (I thought he might burst into flames or melt or something in the presence of actual fruits and vegetables. He's probably consumed a grand total of two servings over the past 8 years. I wish I was joking). I said, "You're picking out fruit."
"What," he gasped, his eyes widened, more in shock than terror.
"You're going to eat two fruits a day from now on," I said, "so you better pick some out you like."
We spent ten minutes in front of the apples trying to find one that was acceptable to him. He wanted Honeycrisp. They didn't have Honeycrisp. So we had to break down the qualities of a Honeycrisp he likes and then inspect the other varieties. I eventually yelled at him to pick one or I was picking it for him and he went with Pink Lady. Excellent choice.
He chose red grapes and then conceded pineapple but only if I agreed to sprinkle sugar on it to cut the tartness. I agreed. If you're too aggressive in this battle, if you trigger his fear, the Bear moves in. I wasn't giving him a foothold.
We went home with a dozen foods Max was happy to eat and a few fruits he was willing to eat. He was excited for lunch and I made him make his own while I worked on teaching his older brother how to make his. (On a side note, the amount of work his legally blind brother with PDD puts into learning just how to open the Styrofoam leftovers container is impressive. I really mean it when I say it's total bull that I have to watch all his classmates getting achievement awards for doing things I know they don't work nearly as hard at and he gets nothing. End of rant).
I had told Max a few days prior that we would bake brownies together since it was my first day off in a while and we needed some quality time. He'd been looking forward to it. By looking forward to it I mean obsessing over it. Asking me over and over and over and over, we're gonna make brownies right? On your day off, we're gonna make brownies. Right? I can't wait to make brownies. Can we make them without chocolate chips? We're making brownies right mommy? No matter what subject I bring up, his response is brownies.
Here's the thing, I needed to make dinner. There wasn't really time to make brownies after all. I braced myself for an atomic meltdown. Tears, utter heartbreak. I decided to take the casual approach. It never works, but hey, you gotta try something.
"Yes Mumses? Is it time to make the brownies now?"
"We're not making the brownies?"
(Keep calm, Spaar. Keep calm. If you act casual he won't get worked up. Keep is cas, keep it cas. Lead off with a positive)
"I thought we could make pork chops instead."
Nothing. No meltdown but no response either, so I continued.
"Ya know how you wanted me to make them the way Dad does? And he sent me instructions. I thought you could help me make them since you like to cook."
(Waiting. Waiting. Praying. And...)
"Okay. Can we make the brownies another day?"
"Of course, buddy."
"I'm excited for the pork chops..." And we discuss the perfect pork chop and make them together.
And we get egg and corn starch on our hands and he doesn't freak out. And I tell him to "plop" a pork chop" onto the corn starch and he takes me literally and it flies everywhere and he doesn't freak out and apologize a million times. We just...cook. Together. It's so damn nice.
The whole time we were cooking, Mies was begging me to go outside and play this new game he'd invented (really he learned it at camp and gave it a new name, but we'll go with it). I told him we could after the pork chops were done. I told him this approximately 5,000 times because he asked me approximately 5,000 times. We finally went out and it was hot and humid. Max doesn't do well with hot and humid. Oh well, I thought, he'll just stay inside and play piano (which means, he will play the exact same song on his keyboard over and over for hours. It's from this gamed called Undertale or something, It's burned into all our brains permanently by now).
But Max followed us out onto the porch. I assumed he was going to put in his obligatory 30 minutes of outside time on the porch as usual. I took a chance and asked him to play with us. He said yes. Sweet lord, he said yes.
We went out and Mies explained the rules of the game. It involved running and trying to be the one who had all four balls and stealing them from each other. We ran and played and laughed. Max ran and played and laughed. He giggled. Like an 11 year old is supposed to. He didn't run away from the bugs. He didn't say he was too hot and tired to play. He didn't complain the whole time and keep asking how many more minutes until he fulfilled his minimum requirements. He was happy and free. He was a kid again.
The Bear was nowhere in sight. Not hiding behind a tree or under the tire swing or in the garden with the beans. We were alone. Me and Mies and Max, laughing and playing. Like it used to be. Eight years ago. The memories you lock away when your child has been sick this long. The ones you try to forget. Maybe it was okay to take them out a little while.
Me and Mies and Max in Erie first year of med school, sledding down the little hill in front of our house. Laughing and playing. Pure joy. I remember thinking, this is amazing, being a mom is amazing. I felt like my heart would burst there in that cold snowy yard in Erie. Cardiac tissue everywhere.
That night I had Max help me get the salads ready for dinner. He offered to cut the tomatoes we'd picked from our garden. He loves to practice cutting. He diced them very nicely and I threw them on the salads and had him put them out. He'd already had his first serving of fruit at lunch without complaint and was now going to eat his second along with a dinner that isn't exactly challenging (pork chops and potato wedges) but which, in all honesty, he usually finds some reason not to like.
And then it happened. The Bear fumbled. Major break in his armor. Our bullets had obviously hit some vital organs. He was fading.
Max said, "These tomatoes look good."
And a choir of angels sang the Hallelujah chorus right there in our bright green kitchen in Verona. Mary rained down rose petals on me. Cardiac tissue everywhere.
He said it casually and went back to setting the table (oh, and did I mention I didn't have to tell him a million times to do it because he actually had something we call an attention span. What?).
My husband said he probably just meant he had cut them nicely, not that they looked tasty. But I knew otherwise. I know my baby. There's observer bias and then there's a mother's instinct. He meant it, really meant it. He wasn't ready to actually eat one, but he was opening himself up. He wasn't anxious, he had an appetite. He was open to eating something that grew from the ground and did not come out of a package coated in sugar or MSG or high fructose corn syrup. He was open to life.
My Max is growing back as we cut away the weeds and briars the Bear has grown around him. He will not be the same Max we lost eight years ago. There are battle scars. And the battle isn't over, not by a longshot. But he will be free to become who he's meant to be without the Bear sabotaging his every move.
And so I cried over tomatoes on my drive into work the next day.
That night, Max was bad again. He ended up sleeping on our bedroom floor. Afraid someone was coming to kill us. My husband groaned. It's hard to sleep with Max in the room because he tics all night long. Throat clearing, snorting, coughing, beep, boop and whatever other new one the Bear has thrown at him. I told him, this is normal. The IVIG is working. Give it time.
I saw a few miracles this week. I drank in his laughter and calm. I basked in the darkness of a hallway that had no Bear lurking in it. I saw a glimpse of what used to be and what is to come. (As it was in the beginning, is now and ever shall be, a world of healing without end).
The Bear is breathing his last breaths. His wounds are infected and overcoming him. Shock is setting in. There is no battlefield surgeon for you, Bear. She is too busy picking tomatoes.
I will be right by your side
If I can't find the cure, I'll
I'll fix you with my love
No matter what you know, I'll
I'll fix you with my love
And if you say you're okay
I'm gonna heal you anyway
Promise I'll always be there
Promise I'll be the cure (be the cure)