The goal was to publish an update Tuesday night… then Wednesday night… which in a nutshell is the primary feature of what I’m calling the “abnormal normal” schedule into which we’re falling of late. Anastasia, quite understandably, takes up so much of our time that there is precious little for other things like writing update blog posts. Or staying current at all times with things like dishes, laundry, the older kids’ homeschooling, announcements from Microsoft and Google’s annual developers’ conference this past week (okay, that last one was only noticed by dad). Unfortunately it also means that some of the kids have been a bit deprived of dad and mom time as well and it’s reflected a bit in their behavior and this is a failing on which I need to make a point of addressing not just tonight and this weekend but consistently. Please pray for me on this point.
In more general terms Anastasia is showing her strength as a fighter even though that has been primarily manifesting as “fighting to breathe.” Another feature of the new abnormal normal is her need for oxygen assistance to breathe. Pretty much all day, every day, for the past several days Anastasia has needed between 2 and 3 liters of oxygen. At this point I don’t know if she will ever be able to breathe without her Darth Vader machine (oxygen concentrator); to make sure she continues to receive oxygen even if the power goes out (like it does, at times, from summer storms) dad bought an uninterrupted power supply — http://a.co/8GGPyUJ — which should keep the oxygen concentrator running for at least a few hours with the power out… more than enough time to be ready to switch her over to bottled oxygen if the power stays out for an extended period of time.
In addition to needing oxygen assistance, Anastasia has been showing signs of more labored breathing more frequently than before. If you speak respiratory therapist the term is “retraction” and it’s not the way she’s supposed to be breathing. I’m sure I could research this and give a concise summary but, in practice, when she starts breathing this way I default to the role of asking mom what I can do to be of assistance. In reality there’s little we can do beyond changing her position or cupping the oxygen over mouth and nose to help her breathe correctly when she starts retracting. And there’s also the seizures too. They are still present as a background feature; the good news is that since her prescription was altered due to her increasing mass she’s had fewer cases where it has been necessary to administer the rescue drug and that makes US breathe easier.
As we’ve shared Anastasia’s story these past 35 days some of you have shared it with others and in the process we have been introduced to a couple in Pennsylvania who had a baby with symptoms that are almost an exact match to what Anastasia has currently. Getting to meet them — via the magic of internet video chat — and learn more about their daughter, how they had to medically intervene, and what to expect between now and when Anastasia is called to heaven has been a huge help. I know we’re not alone and in every update I’m exhausting my vocabulary and phraseology to express my gratitude to everyone who has helped in the myriad ways they have and continue to do but having the chance to talk with a couple who has walked this exact same path, who can share lessons learned, medical techniques used, how they dealt with the prolonged uncertainty of knowing their baby would die young but exceeded the learned doctors’ most optimistic projections on how long that would be… talking with someone who has walked this exact path and being told “you’re on track, you’re doing it right, just keep going” is massively reassuring.
Which is not to diminish the help everyone else has been giving! We wouldn’t be able to be “doing it right” so far if not for the generous help everyone has given us. I’ve been pondering the thought that God never gives us a Cross that we cannot carry; something coming into stark relief during this trial is that being forced into a position where we have to ask for help is, in many ways, a far heavier burden than the ones we can simply carry by ourselves. Having to slay our pride and rely on others is such a hard thing to do and the refusal to do this in society leads to so many evils, not the least of which are the crimes of abortion and assisted suicide, both of which, it seems to me, to involve a refusal to ask for help from others in the face of a burden we know we cannot carry on our own. I pray that nobody in my family ever develops the kind of stubborn pride which could lead to so many evils, so much suffering in the long run…
And when not pondering such topics I’ve been thinking thoughts — and uttering prayers! — of gratitude for everyone who is and has been helping us. The other thing that’s been apparent to us for a while is that we will never be able to repay the debt of gratitude we owe to all of you and implore God to return to you many-fold the kindness and help you’ve shown us!
Embracing the abnormal normal — and Anastasia — while we can,
Daddy and Mommy
PS: And while an update with only words would still be an update, it would be an inferior one!
One eye open (and slightly rolled back which is typical when she has a seizure)
There’s never a bad time to snuggle with mommy!
The Polka-dot Princess peacefully posing
Sleepy mommy — and baby
Littlest big brother and Anastasia — and Sugar Bear too!
Grinning brother and Anastasia
Big Sister — who has been a big helper! — and Anastasia
Biggest Brother and Anastasia
