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I'm coping better now than I was over the weekend, but it comes and goes. In general, I'm not feeling joy as easily as I normally would be. I guess that's the veil of grief hanging over me, despite my attempts at doing "normal" things and the fact that I'm not bawling my eyes out so much anymore. Thinking forward to the funeral still brings tears though. It looks like it will be early next week, and hopefully my sister and her kids and husband will be coming back to the mainland within the next few days. Being with my family is what I want right now, but we've had to wait as plans get made.
In the meantime, I thought I'd share more about Sarai's story. How did this all come to pass, and why? I wish I had all of the answers, and I sure hope we are able to get some answers with time, but for now I can at least share a bit more about her condition to spread awareness of it.
Sarai was born with a rare genetic disorder that affects the connective tissue in the body, called Marfan Syndrome. It is a dominant genetic disorder, such that a parent typically has to have it to pass it on to the child. However, that is what occurs in 3 of 4 cases. In the other quarter of cases, it is caused by a spontaneous genetic mutation. In Sarai's case, she was that rare 1 in 4 spontaneous mutation scenario. My sister and her husband were tested and neither carried the gene. Also, in Sarai's case, because it was apparent at birth, she was diagnosed with neonatal Marfan. This form of Marfan is often more severe and Sarai certainly had no shortage of complications as a result of having neonatal Marfan. She had very long fingers, hands, feet, and toes...the symptom that alerted doctors to test her for Marfan. People with Marfan usually are very tall, long, and/or lanky from the way the connective tissue is affected. However, some people with Marfan have more severe complications, with the most serious being an enlarged aortic valve of the heart. Sarai also had this, yet since it was caught so early she was able to be treated with medication to slow the growth of this valve. Otherwise, the concern is that if it ruptures, it could be fatal. Nonetheless, this was under control with medication and regular heart monitoring, and then when she became an adult she would have needed a surgery to replace this valve. Beyond these complications, Sarai had a few more that are also somewhat common with Marfan: severe scoliosis, glaucoma and cataracts. All of these may have required surgeries at some point in her life. In the meantime, they were just getting ready to start treating her scoliosis by casting her back every few months to help it grow more straight.
That is why she was in the hospital on those two fateful days in May. On the first day, she was being put under sedation to do the back cast procedure. She had been sedated before for various things, but this time she coded as soon as she went under. The medical team there intubated her, so she was on oxygen, and did CPR for 30 minutes to get her back. But she came back!! The next day, they slowly took her off of oxygen, did a few tests to check her brain and heart, and everything looked as good as it had before the procedure where she coded. Our hopes were up, although we were nervous about her being sedated in the future given all of the surgeries and procedures she had ahead of her. However, that evening the doctor indicated she was in pain from the chest compressions the day before and suggested she get some morphine. And it was then, when she was given morphine, that she passed away.
Jumping forward a few months, we are still awaiting the results of the medical examination to see if we can get any answers as to what exactly happened. The report was supposed to be ready in 12 weeks, yet now it's over 17 weeks later. They say it's because she was an infant that they are taking more time to do a thorough investigation, as well as because she had Marfan they are enlisting experts in her condition to assist with the review of the her records and tests. Yet, this is really taxing on my sister and our family to have to wait so long for answers. I certainly hope we get some answers when the time finally comes for that investigation to be complete!
In the meantime, we've laid our sweet girl to rest. It was a nice gathering of our close family the last week of May. It was uncomfortable and confusing for Evan during the visitation because everyone was crying and to him he was looking at a beautiful sleeping baby in the casket. She was certainly beautiful. The funeral home had done a very nice job with her. It was very sad for me to get to meet her like that, but I'm glad I was able to touch her cute cheeks and briefly hold her hand. My sister and her husband were so strong throughout it all, and even gave her eulogy to share her story with everyone in attendance. My sister has also taken to do positive things (random acts of kindness) in Sarai's name to help spread "Smiles From Sarai" and Marfan awareness. It's such a positive to come out of such a tragedy, and I admire her courage that she has shown in doing this.
In fact, when Sarai's first birthday came around last month, my sister did an amazing thing to celebrate the otherwise sad occasion. She asked for gifts (and thanks to social media we got them from far and wide) that she will now be donating to families in need, to help spread more Smiles from Sarai. So not only is she getting to help others in Sarai's name, she still got to enjoy the excitement of packages as they arrived during a time that would have otherwise been gloomy. In fact, she told me how she was having some bad days, but when packages would arrive they would help cheer her up. It was truly people from all over sending her love and helping her spread kindness for Sarai.
I look forward to helping her spread more Smiles from Sarai, so that all of us will remember this sweet girl and her legacy can continue to bring happiness to people as she did when she was here with us on Earth.
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