Hello, Darling

Ok, you know what happens to me after the delivery of my first baby, Darling, but prior to that - just the decision to have kids was something to consider. 

Honestly, I had always thought of adopting - plenty of kids in need, right? However, my husband was insistent on having biological kids and with the lifestyle we lead (lots of rescues, a pit bull dog, some hospice animals who had gone unvaccinated for a while, etc), we were basically going to be shot down for a foster to adopt type situation from the research I had done. 

When considering having our own biological kids, my last seizure had been about 10 years behind me. I'm also unaware of the gene mutation factor and still under the impression that my seizures were vaccine-related ... a vaccine my sister didn't have and she didn't have seizures. A vaccine her daughter, my niece, also didn't have either and she didn't have seizures. (Hindsight: sister likely doesn't have the gene mutation, so of course her kids wouldn't either) 

So, just avoid the vaccine for my kiddos, right? 

And that's what we did with Darling - we avoided the one particular vaccine I had had my first seizure after ... even though multiple doctors blew off my concerns or told us the vaccine used now is different (it is, the particular form I had was I believe completely discontinued because it did have neurological/ epileptic side effects). One doctor even argued with me, completely put me down/ my concerns were moot to him and he was the head of this particular practice we were going to, so we switched practices altogether. 

We picked up our handful of hard records (that we had to pay for?) and took our gorgeous, sweet, full term Darling to the practice my sister had used with my niece and who had been more than understanding with them of the concerns with that particular vaccine given the family history (me). 

All was well until Darling was 11 months old and seized in her sleep. As soon as the deep-sleep state I had been in evaporated away, I knew exactly what was happening to the little baby laying next to me (safely co-sleeping was easier for breastfeeding). 

From my journal (edited 04/28/2021 to add) for her:

"We went to bed and you had just a runny nose. You were restless and cried every time I tried to put you in your crib, so around 1:30am I gave up and we just left you in bed with us. You were warm, but you tend to always feel warm (and hate blankets on you), so I stripped you down to your diaper and we all finally slept... until around 3:15am when I woke up to you moving. I thought you were just fidgety, but it took a split second to realize you were seizing. Your eyes were open, your body was jerking and you were making this terrible noise I've heard people describe me making when they've seen me seize."

From my journal: 

"There are no words for how terrifying that was - even with me rationalizing that it was just from a fever and knowing what was going on. All I could do was literally sit there and try to will her to wake up while {husband} was on the phone with 911. It felt like forever, but she started to come out of it just as EMTs got there...

The doctor we saw {in the ER} was super reassuring and informative. He said this is common. We did everything as we should - she barely even had a fever. He also said this type {of seizure} is like a shiver with a fever for an adult - it's just the way their little bodies can react. I mean, she went to bed with just a runny nose - no fever. That was the scariest part: I didn't even have this on my radar."

And so began what would be Darling's experiences with epilepsy.

Heartbroken is an understatement.