The house is quieter than its been in over 2 weeks.
Adahlia has gone to her first day at her new school — and I don’t have to be at the clinic until 12:30 pm.
I feel so grateful that she’s at this school. My only hope is that she can stay at it for her entire elementary and middle school experience. There is some concern that because of needing to miss so many school days, she’ll miss too many experiential lesson days. And be asked to leave the charter school for regular public school.
Like many folks who send their kids to charter or private schools, we’ve worked hard to get her into this one. The wait lists for preschool, kindergarten and 1st grade are huge — each one can be in the triple digits. (1st grade still has a wait-list of 45 students.)
How did I get her in?
Super fast typing fingers. 🙂 When the day and time came for online open-enrollment, I kept hitting “refresh” for the page. As soon as the form was active, I flash-entered our information.
I was so fast, apparently, that I beat dozens of other hopeful parents. Which I don’t feel bad about in the slightest, despite the fact that this school kind of operates on the West Point principle.
When we started at West Point, we got the same speech that I imagine they give every year. Something about how hundreds of people apply for one spot, ten folks receive a nomination, and of those ten, only one gets admitted. Then, the speaker continues to describe how our numbers will dwindle: “One out of every four of you won’t graduate.”
Next, West Point takes the opportunity to guilt us into staying. “You took a nomination from nine other highly qualified candidates,” someone with a lot of medals on his breast booms across the room. “If you quit, you robbed those candidates of their opportunity.”
Which is kinda screwed up. After all, those nine didn’t make it on their own merit — they lost that race. Too bad. A driven, healthy, and hard-working 18-year-old has many more opportunities ahead. Perhaps they weren’t meant to go to West Point. And who is to say that they wouldn’t have quit or gotten kicked out once the going got rough?
But, that’s USMA for you.
Anyway, this kind of reminds me of that experience. We took an opportunity for our daughter that she might not be able to fully use. This school doesn’t allow children to start at the upper grades. You have to start in preschool, K, or lower elementary because apparently its difficult to teach a child to be self-directed after a certain point. (The current educational model teaches children to need direction from an authority or system, and to think of performance as a way to earn external rewards.)
And I get it. I know a lot of adults like that. Certain personalities, if you tell them they don’t have to do something, will choose to do nothing. Many folks (again, not myself) won’t listen to their inner compass and will “fall in line” if you threaten to take something away or promise a reward. Developing that inner compass and a love of learning and achievement simply for the joy of the process is what the school attempts to foster.
She may not finish. Anything could happen with her.
Quite honestly, like those nine random folks who didn’t “get” to go to West Point because I did, there are other children without a life-threatening condition who may have been able to finish what she might not.
But, you know what? I don’t care.
She also might go into remission and live to be 97 years old.
And there’s more than a handful of kids who start at that school and end up needling more of a traditional educational approach.
She got this chance. I won it for her. And she deserves to take it.
In fact, it’s actually super-awesome that she gets this opportunity. The school is perfect for her in many ways. I’m SO glad she is there.
Why?
As a self-directed, self-paced learning environment, the children aren’t all required to do things at the same time as each other.
She’ll be able to eat when she needs.
She’ll be able to rest when she needs.
She’ll be able to explore subjects to the depth that she is intrigued — not be forced to close up her workbook and move on to a new subject. She can work as slowly or as quickly as she wants, depending on her mental energy for the day.
In those ways, it is absolutely perfect for someone with her condition.
But there are days when they give “group lessons” — like guideposts — and the children need to be there so that they can receive the lesson and then do the work on their own, at their own pace. And that’s when missing 1-2 days per month may become an issue.
Right now, actually, with the steroid trial, she misses 4-5 days per month.
Four days for laboratory testing.
A fifth day for a transfusion if necessary.
I didn’t update last week because we received confusing and bad news: Adahlia had stopped making baby red blood cells. (Either that, or something had started again destroying them). Her hemaglobin had dropped and she needed a blood transfusion.
The steroids were no longer working — no longer being protective. (That’s the theory of how they work — they bind to baby RBCs and allow them to mature.)
For someone who knows me, it may seem odd to you that we were so happy that the steroids were working. And so sad to hear that they weren’t anymore. What with all the side effects and complications.
But the steroids provided hope that there is at least another way to treat her condition.
Not having that option is pretty scary.
I really wish it were different.
It doesn’t make sense: She had no response to them after one week. She had a BIG response to them after two weeks. At three weeks — that response was not just decreased, but absolutely gone. The hematologist I met with on Friday couldn’t answer my questions about her laboratory results. I asked what multiple lab values meant to him — lab values that were out of range. He shrugged. He said he didn’t know.
“She might just not be a responder. Some children just don’t respond.”
I couldn’t believe it.
“She HAD responded — why did she stop?”
I kept pointing to the out-of-range laboratory results.
“Isn’t there something in the values that make you think of a missing co-enzyme, a co-factor that could be deficient… some part of the pathway that we’re overlooking? In the past, folate and B12 have always brought the elevated values back into range, but neither is “working” anymore. Why? Do you have any ideas?”
He said the values weren’t so far out of range as to mean anything to him.
Wow. Thanks for being so helpful. (Clearly, you weren’t educated in a self-directed system, were you?)
Adahlia is still beautiful, still strong, and still vibrant. The high doses of steroids are starting to take a toll on her body — but she is managing extremely well.
She remains that bravest and most beautiful and fun soul I have ever met.
I want everything for her.
But what I can give her is constrained by forces outside my control.
A mom on our special, closed DBA support group posted in response to another DBA mom’s breakdown. She told her (paraphrased):
“The uncertainty is terrifying. But our children need us to be strong. We cannot be present with them if we exhaust ourselves worrying about what’s happening to them.”
I was struck with admiration. Such true and inspiring words! I swear, some of the moms I’ve met on this journey are just the most phenomenal people.
Meanwhile, I’ve been following another DBA mom friend whose daughter has received a bone marrow transplant from her brother. The mom started a Facebook page and has been chronicling their journey day-by-day, from hospital and laboratory preparations counting down to transplant (including days of chemotherapy to prepare the bone marrow to receive donor cells) to nearly 30-days of in-patient recovery post-transplant. We are all relieved that her daughter is doing well — a few scares, but now doing well, even doing better than could have been expected.
Over and over, again and again, my fellow DBA mothers amaze and inspire me with their honesty, bravery, strength, and heart.
I volunteered for West Point and military service.
I would have never EVER asked to be a part of this group.
But I am honored to be in it nonetheless.
…
Everything changes.
With blood transfusions, we try to “freeze” the natural process that would result in our child’s death. We try to stop time by buying it in one month chunks.
With steroid treatment, we hit the accelerator. We try to blast through the obstacle to red blood cells, like stunt car drivers, pushing our child’s body to its limit to try to produce them. Of course, we can’t keep the foot on the accelerator forever. The car will eventually run out of gas.
It’s hard to live in frozen time. It’s surreal to not be able to move your life forward because you’re holding your breath, unsure of what is about to happen next to the person you care most about in the world.
Because the world keeps turning. Nothing else (and no one else) is waiting. Not our workplace, not our bill collectors, not even our extended family members — are with us in this suspended animation.
Honestly, I have no idea how 6 years have gone by. It’s amazing what has slipped away while I’ve been solely dedicated to trying to restore her.
Eventually, many of us feel the need to “go” for it. Steroids. Bone marrow transplant. Anything for a chance at a more normal, joyful life of opportunity. A chance to stretch up — and if we are strong and brave enough — to grab the brass ring. A life without the lurking shadow of death over our children — the yellow-pale skin, the blue shadows under the eyes, the heart-wrenching complaints of pain and exhaustion.
The excursions ended early. The ones never planned. The ones cancelled two days before they were to begin.
No one can blame us (strangely, some people still do) for our choices.
No one wants this responsibility.
In our darkest hours, those of us with children on this path have come to realize some hard truths:
There isn’t some medical doctor or procedure or pill that can save them.
There isn’t some miracle-bestower we can bargain with or lay prostrate to.
When our children go into remission, it is the stroke of God, and incredibly good fortune, and a ton of dedication and work.
But, we can’t “make” it happen.
We do our VERY best. We make herculean efforts, over and over again.
In the end, however, I’m not so sure that effort, skill, or devotion is what it comes down to. There are larger forces at play. A mystery beyond current comprehension and will.
So, we buy a bit of time to try to figure things out.
And say “GO!” when the time feels right.