Wish I could...

On Saturday night my three oldest children and my nephew who is only 7 months older than Sonzee had a much anticipated, by all, camping sleepover in a tent in my parents' backyard.  The kids planned this sleepover weeks ago, my father has been eager for it to happen (probably) literally forever, and no one was more excited that Shabbat ended then all of these participants.  I loaded the 4 kids into the car filled with backpacks, stuffed animals, pillows, books, games, and an overabundance of energy and excitement.  I had a quick detour with our middle daughter so the initial drop off occurred and we returned about an hour and a half later.  Despite returning twice, neither drop off included Sonzee, she was at home seizing in her room.

During my second return I popped in for a bit to steal some dinner, grab a smores, and take some adorable pictures, but didn't want to take away the kids parent-free, way too much candy, junk food, and Gatorade, typical grandparent spoiling grand event that was occurring, so I left shortly after I arrived.  I returned home to two little people tucked into their beds, and within 30 minutes Sonzee's pulse oximeter began ringing.  I am partially relieved she is back to these atrocious seizures because when it begins to ring it is a guaranteed seizure when it alerts, there are no false alarms, and no wondering if we might have missed one.  6 minutes and 5 seconds later she was finished, I tucked her back under the covers, I disconnected her from her tube feeding because the pump was ringing they were finished, I checked her central line, made sure her TPN/Lipids were not leaking and everything was secured, gave her a kiss and walked out of her room.

After I got ready for bed I opened this mindless candy crush meets decorating game on my phone that I play religiously at night before I fall asleep.  I stared at the start screen frozen as if I forgot how to press the green play button staring back at me.  My mind unable to turn off, was unable to forget the fact that Sonzee should have been tucked into the tent in my parents' backyard with her siblings and her currently same-aged cousin.  I cannot tell you how often I forget her cousin and her are the same age for 5 months and 5 days every year.   I cannot tell you how often I forget that Sonzee is a school year away from Kindergarten, the same grade her middle sister is graduating from in just a few weeks.  Of all the things I constantly forget about her, I wish I could forget that her age puts her perfectly alternating with her cousins and that she should be at their school having recess with her older and younger cousin.  I wish I could forget that she should be having a 1:1 sleepover with her bubbie and pop-pop when they are in town, that she should be having play dates with her cousins and annoying her sisters when they have friends over.  What I really wish is that I could forget everything that she should be doing if she had only had a functional CDKL5 gene.

Sacrifice

Last night our middle daughter was calling for Sam at bedtime because she was waiting for him to read her a book.  I was getting Sonzee's TPN supplies put away, giving her meds, and getting her ready for bed.  I let our daughter know he would be there in a minute.  During the time she was waiting, the other two elders called for him as well.  It doesn't make me angry that this has become the norm, it just is how it is.  But the moment flashed a memory in my mind of a time, that seems to be from a completely different life, but was just a few years ago.

There used to be a time that bedtime took hours because each child chose a minimum of 2 books and both Sam and I took turns going from bedroom to bedroom.  There was tickle time, laughter, talking, and books.  There was "Emmmmaaaa" being called and I was the one who cuddled next to each of them and endured the 2-hour long ordeal.  Sam and I joked about the length of time it took but also felt it was so ridiculous....I think about it now and cock my head to the side as the word perspective flashes brightly in my mind.

Since February 11, 2015, bedtime routine has never been the same.  Children certainly adapt to the situations they are presented, but it comes at a cost, and the price in this situation was their ability to rely on my presence.  In the beginning, it was hard on all of us, then at some point during all the hospitalizations, it became their norm, but for me, remains a constant heartache.  Each night when they ask for that extra kiss from Sam, for him to read the book, or for him to come back in, it is a reminder of all the nights I haven't (and won't) be there, and for the sacrifices that come living the medically complex life.