I freaked out this morning in a severe and irrational manner. I have never been much of a worrier nor a very anxious person, but my fears have been in full force today.
The other day we were in Starbucks and Jessie tripped and fell three times—one time banging her nose on the edge of an end table. This last week there have been several times when she awoke from her sleep uncharacteristically screaming for no apparent reason. Furthermore, she’s been more fussy and tired, but not showing any signs of a cold or flu.
These were the three initial symptoms Jud had at the onset of Krabbe disease; stumbling, screaming in his sleep, and behavioral challenges that were not typical of our boy. Furthermore, my little lady is now 27 months old and is getting very near the age when Judson had his onset of Krabbe symptoms (29 months old).
As I was interacting with Jessie after breakfast this morning, and she seemed particularly out of sorts, I lost it. I started bawling and was practically ready to jump in the car with her and drive all the way to Los Angeles to have her blood drawn for more testing.
It is as though I am desperate for proof that my precious little girl isn’t going to be plagued by the same wretched fate of my Judson. My beautiful boy was just as vibrant, healthy, and whole as Jessie at this age, but little did we know he was on the brink of dying.
When Jessie’s blood went to the specialized lab in July 2007, there were two different tests that confirmed she does not have this wretched disease. The most definitive test indicated that my gene mutation for Krabbe was not present in Jessie’s sequencing, which would make it impossible for her to be afflicted by the disease. Therefore, unless the blood they tested was not actually our Jessie Girl’s blood, then the results are definite—Jessie does not have Krabbe disease!
So, why is the certainty of the doctors evading my fear-stricken heart?
In talking with Drake and my mom, they both expressed that they too, have similar fears for our Ladybug; I realized that we are all dealing with an awful, but natural by-product of our journey. Because we are intimately acquainted with this hideous disease, and we experienced its destruction, we are bound to be afraid that it will touch our beloved Jessie Girl, just as it did our Jud Bud. Our past journey precludes the ability for any words from a doctor to completely obliterate our worries.
Jessie’s life feels fragile to me right now, more fragile than usual; whether founded or not, I am terrified of losing my daughter too.