I may leave some things out and a few things will be revisited, but know I’m not always a great story teller. So please bear with me as I try to get this out in a somewhat coherent way. Thanks and enjoy.
Lets start at the beginning. The day Savayah was born, everything was rushed. She had barely been in the world a couple of hours and they were discharging us. We were in a military hospital, and for whatever reason, it was time for us to go home. They couldn’t even get her a wheelchair out. We walked so slowly about half a mile to the car, not knowing why we were rushed out or if that was how it was supposed to be. Savayah was new to the world and taking it in. I swear she was born with her eyes open because she didn’t want to miss a single detail. The next day we were back in the hospital because her Bilirubin was a bit high. After that she was having trouble breast feeding, turned out baby girl was tongue tied, and already needed her first surgery, a simple clip underneath her tongue, but we hated putting her in any pain. Also fun fact, nipples can regenerate if cut/chewed off. Savayah was colic, and there was a time maybe 5 days in Bella and I just sat and cried because we were so tired, and scared, and not sure what to do. Then I had to go back to the ship, my paternity leave over. Unfortunately this was also the work up time period before our deployment. Our hours were longer, and we went underway for longer and longer periods of time. Bella barely survived, having to take care of a new baby, with us both not knowing how to handle it or knowing what to do.
Fast forward a little bit, Savayah said her first word before she could crawl. By six months she was saying 3-4 word sentences. She would tell us if she peed or pooed, and said daddy/mommy I love you. She’d even try to trick us at bed time to have us get her up by telling us she pooped. Her doctor couldn’t believe it until we showed him, and followed her even after we moved Bella back home for my deployment. Her favorite movie was Kronk’s New Groove, and I got to see her crawl on her own the first time on video chat. She’s the light of our lives and we would do anything for her. However Savayah regressed. She still only says real words very seldom. She mostly just makes noises, and seems to be unable to control her emotions, yet feels every one very deeply. She was diagnosed with Stage 3 Autism Spectrum Disorder, and ADHD a little after she turned two.
Bella’s illness started getting more and more out of control after I left on deployment. Savayah was about 7 months old when I left, and it was so hard to have to go. Bella wasn’t well before I left, but we had hoped she would be able to make it while I was gone, and that she would have a bit of help from nearby family. I made it about a month on deployment before the ship was contacted by the Red Cross. Requesting my presence because they thought Bella was going to die, and they didn’t know what the cause was, or how to help her. It was a long journey home, and I did my best to care for my family. Savayah was still talking at the time, and was so amazing at everything. Being new to taking care of Bella was a struggle, but we made due best we could. It was maybe a month later Savayah started to regress. We weren’t sure at first, because she was still meeting her milestones, but after a while she started falling behind. At first we thought maybe it was the trauma of me leaving and coming back, or mommy being sick… Unfortunately it happened, and there will be more on that later, but let’s get back to the story.
I came home on emergency leave, that turned into a humanitarian re-assignment. We were constantly at hospitals, doctors appointments, and getting tests done. Anything that could be a remote possibility of being the cause of Bella’s debilitating pain, racing heart, and inability to function. We bought a house since we were hoping she would get better and I’d be able to stay in the Navy, but once the re-evaluation of my assignment came, and she wasn’t able to take care of herself yet, I was discharged. I was unable to deploy or effectively perform my duties, so I became a civilian. I set up a job, and hoped we’d be able to work it out, one way or another. My boss was super understanding of our situation and any time an emergency came up or I wasn’t able to come in, he held my position so when I could work I’d have a place to do it. Money started getting tight as Bella progressed worse and worse, and I was working less and less, until I finally had to give up my job because it had just gotten too bad. From there things just went from bad to worse.
That seems like a good place to stop for the night. There’s plenty more to tell, and most of which still needs to be fully explained, but this is my first time trying to get it all out as it happened, and as it still is. Please keep us in your hearts and prayers, and share our story on as it unfolds. Thank you for reading thus far, and keep an eye out for more coming soon.