"Wake me up when September ends"...
I always liked this title. Green Day had it right.
September is a rough month for us, and every year it seems to come around faster and faster.
Today my Jillian would be 22. She was born after a LONG 4 days of labor. She came barreling into the world at 4# and 17" long, club foot, bent fingers and an extra 18th chromosome. We were told " If she actually survives delivery, you probably want to just keep her in your room with you because she probably wont survive the night. " You see, we had an ultrasound that detected she was abnormally small and club foot, so 2 months before she was born they sent us to a specialist for an in depth ultrasound, just to make sure they knew what was going on. They weren't sure what exactly it was, although they had a good idea. They gave me an amniocentesis, and within a week had our devastating results. Trisomy-18. I remember sitting in the neonatologists office with my husband and my parents and getting the results. I was just stunned. I remember crying and hugging my dad who was at a loss for words. Emotional outbursts weren't his strong suit and it was difficult for him to see me like this and it was difficult for himself to feel some sort of way too.
In the 6 weeks leading up to her birth, we had prepared ourselves as much as we could, learning everything we could about Trisomy-18. one extra 18th chromosome in her cells that absolutely wreaked havoc on her entire body. We read story after story of people who had gone through the same thing. Baby lived 1 day. Baby lived 2 hours. Baby didnt survive delivery. But there were the few and far between bright spots of child lived 5 years, or child is still alive at 8. they had severe limitations and couldn't walk or talk, many were blind or deaf or had cleft palates. Some had seizures. Some had feeding tubes. BUT THEY WERE ALIVE and their parents loved them!
She survived delivery and she survived the night. They didnt mince words with us and they didnt keep her needlessly in the hospital. There was a do not resuscitate for her, and we had made plans of what to do in case stillborn or death after delivery. So we got to take her home and enjoy what time we had with her.
She was gorgeous. She had dark hair, and the smoothest most delicious skin (she was kind of tan!) and amazing violet eyes. She was probably blind and deaf, and even preemie clothes swallowed her whole. She refused to sleep in the cradle, her place of choice was between me and Charles in our bed. She would coo happily and almost smile at us. If she was in the bassinette or cradle she would just fuss and act all offended.
To the doctors surprise she had a small sucking reflex and was able to eat from a bottle with bigger holes cut into the nipple, so I would pump and mix a little formula with it to supplement calories. I thought "It's a miracle! We are one of lucky ones! We might get one of those babies that defy all of the odds and do well!"
She did well for about 10 days. Then last 4 days of her life were my own personal hell. Charles worked for a bank in Cincinnati that didnt give a shit his daughter was dying and expected him to be at work. After all they had graciously given him 3 days paternity leave and she seemed to be doing well, so no need for him to not come back to work, right? (Im looking at YOU Star Bank) I was at home by myself with her, and then it started. She started having seizures and would quit breathing for what seemed like an eternity. She would turn bright purple, then blue and I didn't know if that was going to be it or not. Then she would relax, all color would return and she would be fine for another few hours. As the end got closer she would have more frequent and longer seizures and quit eating as well. I carried her around everywhere, refusing to put her down in case it was the last time. I was so scared of her dying on me I even prayed that it wouldn't go down like that. I didn't think I could handle it emotionally. I would call charles in hysterics and he would have to find a way to come home, (bearing a look and lecture from his manager).
2 weeks after her birth she passed away. It was about 1am on September 18th, Charles had gotten up to feed her. She didn't have a seizure, she just looked at him and almost smiled and shut her eyes and went to sleep calmly and died in his arms. No locking up, no turning purple, nothing devastating or traumatic. Just peaceful.
I remember Charles waking me up saying, "Sarah I think Jillian just died". A hole was torn out of my heart that day and has never fully recovered. Every September 4th we have a family day. I refuse to work on that day. Boys never went to school on that day, and we spend time together as a family. Every September 4th the gloom descends for the day and we cry, we look at pictures, we go out to lunch or do something fun.
It gets easier, but September still sucks.
Every year I think "What would Jillian be doing this year". A few years ago it was sweet 16 and drivers license and dating. Then it was graduating High School, then college. Then it would have been graduating college or returning from a mission. This year it's marriage and maybe starting a family of her own. This is the 22nd time I have asked myself that question and the answers get harder and harder. I am sad for all the mortal milestones she missed, and I am still sad for me for all the mortal milestones I didnt get to help her through. I am sad her brothers never knew her, and I still grieve for my loss 22 years later.
Grief isnt something that just goes away. It is always with you in some way or another. SO every year when September rolls around I just want to throw the covers over my head , stay in bed and eat a gallon of ice cream.
wake me up when September ends...
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