As we were going through our school day yesterday, my son asked me "Mom, were you...right now...were you in labor with Vivian?" I paused a minute to recall what the day before Vivian's birth looked like as I hadn't really thought about it.
The kids always like talking about their birth stories and the days leading up to the event. Everyone likes to hear of the packing the hospital bags, or prepping the nursery stories for each specific child.
Vivian's preparation was a bit different, sadly, as I recalled now retelling it to the kids.
You see, the year of her birth we had launced a 3 Million dollar gene therapy in February, with our foundation the sole funder of the initial funding. I can remember taking out extra insurance policies on myself, encase something happened, like a car crash, and not wanting any of the debt to fall to anyone unknowingly.
I was also enrolled full time at Clemson in their biochemistry program. The summer before the fall semester I had just started a student led inititive with the help of one of my professors in a bioengineering lab. Our goal was to create an at-home meter, first of its kind, to measure glycine, the molecule that had been so hard to tame in my son's body.
We knew there was a 25% chance Vivian could have NKH, like Drake. Every time I felt her move in my stomach I was reminded of that fate.
And as long as I could keep her in my tummy,
I could protect her.
My body was filtering her little enzymes and chemistry for her.
I think feeling her move, and knowing what may be coming is why I pushed so hard....
Resting was hard.
Watching Drake seize every day,
knowing nothing was coming unless we found it....
knowing she could be sick...
It was a tough season....
a season I think I am still healing from.
Just months before her birth, in addition to all the other pieces we were pulling, I sat very pregnant and did an interview on one of the local news channels. Eric and I talked of our efforts through the foundation, our son's journey, and our fight to bring change.
Meeting that kind of research budget, from a small foundation, took every hour of every day. No sick days, no time to be tired...you have to push...deadlines to meet, dollars to raise.
You can rest when you find something...after you meet their budgets.
I am so thankful my God doesn't require that standard I put on myself back then . God was watching and waiting to catch me. I was hurting...and He was always there.
Deep down, I was trying to out run the inevitable...if we could find something...something in time for her....she wouldn't have to suffer the terrible fate her brother was living.
The day came where I could hold her no longer, it was time to schedule her induction. My doctor was very adamant that I had pushed it as far as I could, despite my hesitations.
Her birth was falling right about the same time my second semester was starting and we had just gotten the project off the ground with all the paperwork to start the lab for the glycine meter. I knew I had to help push it forward if it was going to have a chance to begin.
The bone breaking reality about a disease that a handful of sick kids have is that without parents fighting it forward, or funding the research....the harsh reality is no one can care.
It sounds harsh, it is harsh, but we are all human.
Human nature is just that. We each have their own tough circumstances and at the end of the day, there is only so much bandwidth a person can dispense. One person, one facility, can't care this big and this deep for long periods of time.
Parents of sick kids just have to find more....
I convinced Eric to drive me to Clemson the day before my induction. I had already started to dilate and he was not comfortable with me driving alone the 2 and a half hour roundtrip by myself.
I waddled around the campus, in the middle of August, 39 weeks pregnant introducing myself to each of my professors, trying to explain my situation, and asking if I could set up some kind of provisional understanding for the first few weeks, due to our situation.
I must have sounded a bit nuts...
I am sure I looked the part.
"Hi, very nice to meet you my name is Tarah. I am a mother to five amazing humans, one of which, as you can see, is about to make her appearance for the first time.
The thing is... her brother, our youngest son, has a rare terminal metabolic disease that we do not know if she yet has.
The disease is so rare that we don't even have proper testing for babies in utero. My husband and I run a foundation, we partner with researchers across the country, as we are fiercely looking for a cure.
That is why I am in your class this semester.
I came back to school to learn about how small molecules and enzymes react in the body to try to help find something.
If my daughter is healthy tomorrow, I may only miss a week of your in person class.
But if my daughter is sick....
I may have to attend your class via zoom from her PICU room for the first 4 weeks. This is when she will be the most critical and I have to be there with her. I have to help her doctors as most have never seen a child with NKH, much less cared for them...and her brother has taught us so much.
The first few weeks are the most critical....some children do not live through them.
I will complete all the work required....I really need to learn the material so I can try to help her....
I am sorry to have to ask for provisions...please I don't want to reschedule the class....if you would please allow me to stay....
I will do the work."
They were always so kind...something about the hills of Clemson for sure.
It was late when we left the campus to make our way back home. Although we were tired, I felt like I could rest knowing that at least there was some kind of "plan" in such an uncertain time in the hours leading up to our daughter's birth.
Her pages where already written,
our time was coming to an end...
Soon we would face the day
where her little body would leave the safety of mine...
and she would have to carry the load of this devastating disease
just hours old....
and no medical intervention of value known to man....
because we hadnt't found it yet....
and time had run out...
We welcomed our beautiful, perfectly imperfect, blue eyed, curly brown headed little Vivian via c-section at 11:46 am the following day.
And our story of NKH, 2.0...began just hours later.
