First the Pinch

As you apply pressure with the needle, first there's the pinch, then the tug.

The stitches. Each pinch remains a surprise, in its inevitability, in its staccato repetition. With multiples of these filigrees, suddenly these ephemeral wisps bind together with a certainty.

Bo is on the 2nd day of a (hopefully) 7 day course of IV antibiotic treatment for the 1st confirmed line infection since starting Omegaven. He had one before. While I know this is a VERY low rate of infection compared to what the literature suggests, it is no less life-threatening.

So before your freak-out. Remember, we live this every day. The very real and imminent threat, and the very normal. Bo, for better or worse, is acting well and has no obvious signs of illness. No fever, no lethargy, no real change in demeanor. Something was a little off, and we had cultures run. As it turns out, he has MRSA(!). But it is currently vancomycin resistant, and we are hoping that the vanco does the trick.

Last week Bo was in a fashion show with 2 of his surgeon's kids. I stayed home with Ahn, who was napping. But we had not seen Dr. L since Bo's last line breakage over a year ago. And as it happens, Jose was able to chat with Dr. L as another dad at the Chalk the Walk. Then a few days later, we are asking him to allow us to treat a line infection from home, call the infusion company at 4:45pm on the Thursday of a long weekend.

Between his antibiotics and his TPN, he still has a 4 hour window of unconnected time. Which is exactly as long as the kindergarten day lasts. So he will start school on Wednesday. Hopefully he will finish his antibiotics on Thursday.

We were disappointed to learn that labs must be run on Sunday, cutting short any plans to visit my family across the state for the long weekend.

But we will be able to go to a friend's 5th birthday party, visit some friends at their lakehouse, and maybe even go to the local Pow Wow.

Finally!

Kindergarten starts the Wednesday after Labor day. Bo will be in the AM class at the school down the street. There was no fanfare in that announcement from the school district. Just a matter of fact letter stating that we lived too close for bussing.

Send in the clowns.

I started the process for Bo's placement in January. We had 3 meetings, countless emails and several terse phone calls. I consulted a lawyer, other special needs kids' advocates/parents, and sent reference literature.

There will be a 504, and IEP will be written if needed, a nurse will be in the room. We will get an emergency medical supplies kit to have on campus.

We will start going to bed earlier and waking up with more structure. I am still a little dazed.

Send in more clowns.

The Unsettled Indecisiveness of ThisMoment

I keep waiting for things to be settled. For things to be known before I send another post of electrical impulses into the universe forever. A Morse code of pixels and punctuation.

School starts in a few short weeks and we still don't know where Bo is going to school for sure. But really, do we know anything about tomorrow for sure? I want guarantees. I want to be pandered to. I want someone to sooth my anxiety and fear. I'm certain the superintendant is not really qualified for that.

Happy Trails, Laura the Elephant

Turns out that Laura retired, so I didn't have to face the question of whether or not to ride the elephant. Bo enjoyed all the carnival games, and Ahn enjoyed all the sno-cones. The company carnival was a blast and they will be sure to enjoy it even more next year.

My Peace, I Give to You... or at least, my toes

There's a part where the priest quotes, "my peace, I give to you." I am rocking A and singing lullabies when I look down at her leg draped across me, and her toes, parallel to mine. And I realize that my joy at seeing this resonance in the smallest feature  between us, our toes, is not about seeing myself in her (since we really look nothing alike).

It is the comfort of knowing that she can see me in herself. For as long as she has those toes, she will have a part of me. She may never feel the same way about Jesus as I do. She may never know how I feel about my toes (grudgingly appreciative, they are not cute, but are so so important for balance!). She will probably think my ideas on politics and literature a drippy. But she can look down and know KNOW that there is a very literal part of me that she will carry with her until she too returns to dust.

Of all that is seen and unseen (toes, and DNA, in this case).

My toes, I give to you.

We Love a Happy Ending

Bo had his DEXA bone scan and GI clinic today. I didn't go. I know! I was paralyzed with anxiety, even with all my meds, but I refrained from going. And guess what, guys? No one is dead (well, in my family)!

I thought I might be dying of breast cancer, but then I realized that since I only weaned my daughter 6 months ago (don't judge, ok? she was eating solids, and quite a bit, I might add, but was still hanging on; then, suddenly, she was over it!), that milk action was still hanging around.

So Bo is doing great, Ahn is completely boob-independent, I get to sleep through the night (bonus!), and Jose's started playing music again. Yay! I'm not dead. Probably can't do that cash-out refi to finance the anxiety-inducing plumbing thing, but, meh. That's small potatoes. Since I'm not dead, I can continue to work, get paid, and pay all the contractors to keep my house from crumbling into a pile of dust. AND... the weather won't climb above 90 degrees this week!

No drama, friends. That is a glorious thing.

Is it inhumane and colonialist to want to ride the elephant at the company picnic? Don't answer that.

Normal and neighborly

We have made it through these white-hot days. I pray this is the worst of it. The reality of another hospitalization is sobering, to say the least. But we celebrate today, literally, and turn a blind eye to the misfortune evaded, again.

Neighbors comment how fast you and your sister have grown, admonish us to enjoy. Both true. But I cringe, because both infancies were years that I do not cherish, and try not to remember. Days full of mind-crushing fear, exhaustion, anxiety, sleep deprivation, bearing witness to and not having the authority to stop any of the pain or fear you lived through. And waiting, in terror, for your sister, to maybe develop symptoms of the same. For two years. The pain of those excruciating days may be some kind of foreshadowing, the culmination of which I do not look forward to, nor do I cherish. Those days are behind us now, like the sweet springs that feed our lakes.

I only have an appetite to enjoy each moment now. Each hot, sweaty moment. Each long-winded story. Each non-sensical pun. Each punchline-less joke.

How about this? I cherish each beautiful moment of your infancies for the wonderyears we are now enjoying. But I do not long for any of those days. Luckily we can't, and I wouldn't, wish them back.

Our secret: 200 cc of half normal saline to be administered at the hot and sleepy siesta, or earlier, if needed. Lots of air conditioning. A fan at night. And baths.