Gabby's Gift

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Gabby and Lilly stayed in the NICU until their due date on St.Patrick's Day. It was a looooong few months of calling into the hospital multiple times a day and journaling every number and detail. I went as often as I could, stayed with them for as many hours as allowed, to change them, feed them, bathe them, anything that made me feel more like their mother but I also had a toddler at home.

When the girls came home they came with many added responsibilities. Gabby was on oxygen at all times which also meant a nighttime alarm (you think most new parents don’t sleep, try being afraid you won’t hear her system go off), they were also each on a few medications to help their growth and to keep them healthy and safe. They had to eat every two hours and didn’t eat much at a stretch. It was exhausting to say the least, keeping in mind my son was also going through an especially rebellious stage of getting up in the middle of the night and causing havoc in the house.

Things finally started to settle at around the 6-9 month mark. We were coming into a routine. Medications had been weaned and the oxygen was all gone. We were having family BBQ’s, I was dressing them in coordinating outfits and their brother loved to show them off anywhere he could. Life had come to a bit of a calm.

Fast forward to December 12, 2009. Gabriella hadn’t been eating normal for a week or so, she would take a bottle and a bit of her baby food but always in small doses more often throughout the day, she was crankier than normal as well. So, being a mom of three, I didn’t panic but with her bowel movements being so irregular (sorry for the TMI) it was time to go to the doctor just to be sure. She was on the table for about five minutes when the doctor told me they were sending us to Albany Med. I had no idea what this meant, they didn’t explain a thing, just sent me on my way with two babies and a toddler in tow...alone. We got to Albany Med and went straight to ultrasound. Within 15 minutes my world came crashing in on me and I was a puddle on the floor. My baby, not even a year old, was at stage 4 liver cancer. How could this be?! How could I not have noticed?! Why did I not pay attention to the signs?! What was next…?

We were immediately admitted to the hospital where my parents and their father met me. My mom, thank god, took notes on everything said which was so important. I was hearing it but only half of it was really being registered. The next few hours were such a whirlwind because her numbers were such a mess and she needed blood transfusions and medications and fluids. I felt like I was floating above the room staring in, wanting nothing but silence and to hold my baby so tight that the danger would dissipate for her little frail body. She had already fought her fight as a preemie and made it here, this seemed so unfair.

For the next month and a half she stayed in that hospital, through Christmas and her birthday, she wasn’t allowed to see her siblings for fear of germs (try that with twins) and I was trying my hardest to be a decent mother to all three. I say decent because trying to be a “good” mother at this point was impossible. I couldn’t split myself into pieces. Logan and Lilly spent much of their time with their Aunt Leslie and my mother as their father didn’t have it in him. I lived at the hospital, literally, the entire time she was there, day in and day out. Family visited, I got to see my kids in the Ronald McDonald Lounge and on occasion during Gabby’s heavier nap times I would drive back to see them and spend some time having dinner together or reading a book. But my other kids suffered that is no doubt.

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I wrapped presents on the floor of the hospital for Christmas and brought them back and forth to the car in a wheelchair. I wore a santa hat and my silliest Christmas jammies for much of the month of December around the PICU wing. I was trying anything to lighten the mood. I left Christmas morning to see my other two wake up to Santa’s gifts, Gabby was still sleeping and seeing as she was only 1 I knew she wouldn’t know the date. I then went to my parents for a bit to see my family and the exhaustion kicked in. I fell asleep among the unwrapping on the couch and no one dared wake me because they knew I needed sleep but this was Gabby’s first Christmas and birthday too and I missed it. I drove back at midnight that night and can honestly say that is something that will always weigh on me, I missed her only birthday on this earth.

Gabby soldiered through chemo for three more months after that before they picked a date to perform the tumor removal surgery. I can honestly say on her road with cancer I always had confidence. She came down with a fever three days before her scheduled surgery ...and it stayed booked. I should have called it off, put my foot down and not thought about the fact that we all just wanted it to be out for her, wanted her pain to end and wanted this disease out of her body. She woke up the morning of the surgery happy as ever, which was a rarity because she wasn’t allowed to eat for 12 hours before surgery and typically she was incredibly miserable because of this (this was her third surgery since we started). She was laughing and carrying on, snuggling and kissing on me, it was a glorious morning.

Her surgery lasted 12 hours…...I couldn’t speak to anyone, couldn’t read or work on a crossword. I just stared at different spots around the room all day. By hour 8 or 9 a doctor came out and said they had lost her heartbeat, she had died, but they were able to revive her back and continued working. Just like that, she died but we got her to come back so on we go. From that point on I was a wreck, to say the least. I was cursing God and praying to him in the same breath, I was thinking of her growing into a troublesome teenager and saying I would never be mad at her if she was just able to stay with me, I did the obvious and told God to take me instead. I was helpless and growing hopeless.

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By 9 P.M she was out of surgery and finally heading to the intensive care unit. I took a deep breath of relief and allowed someone to grab me some food. I went up to her room and just stared at her for what seemed like forever but in reality was maybe 20 minutes. I went out to eat my first bite of food for the day and the nurses came rushing at me. She had gone into cardiac arrest again and they felt I should come in. By the time I got there there were half a dozen people gathered around her bed pushing on her chest and yelling directions at one another, I was frozen in the corner screaming and sobbing to save my baby, falling to the ground. That sound of a flat line on the monitor will haunt my mind until the day I take my last breath.

The doctors called the time and I ran screaming out of the room, uncontrollable and sobbing to the point of being sick. I had nothing in me, no sound was coming out just constant sobs and dry heaving. I gathered myself to stop screaming, there were plenty of other children in this intensive care unit and I walked into her room. She was just starting to grow cold and lose that beautiful pink coloring. I crawled into her bed and laid there for what felt like only minutes but was in reality almost an hour, until my family came in and told me it was time to go.

That drive home is so vivid in my mind, I was missing something, I was empty, I felt everything and nothing. I was so lost and had so little sense of anything around me. We got home at midnight and much of my family was there. I registered no one. I sat on the couch in the fetal position silently staring off. I didn’t want to talk, or explain, or make plans. I just wanted to melt into this couch until this nightmare stopped being my reality.

The next morning, aka a few hours later, I awoke and realized it was all real. It was not a bad dream. I couldn't pretend that it was. I immediately ran to the bathroom and my body could do nothing but vomit and sob and curl myself around the base of the toilet. It was all real. I lost my daughter. I wouldn’t see her grow up with her siblings. I wouldn’t be there to care for her, change her diapers, feed her new things, take her to her first day of school, her first dance, hold her after her first heartache or see her cross the stage for graduation.

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I can honestly tell you if it wasn’t for having two more kids to raise, I don’t think I would have made it through that time. Everyone that finds out about my girls and our story tells me how strong I am, how they don’t know how I did it ...but I wasn’t given a choice. I could not let my two other kids suffer because I felt such an emptiness in a part of my heart that was always only meant for her.

I didn’t see my other two kids until the next day. We walked into the house and gave them hugs that could have crushed them, I couldn’t let go, especially to Lilly. I watched that bond for over a year and to know she would never live that out with her sister was soul crushing.

My sweet boy immediately knew something was wrong, he knew the routine. My whole family was there as was I. He was used to Gabriella not being home because she had spent so much time in the previous months hospitalized or separated from them because he was in school and carried germs. He took no more than two minutes after gathering hugs to ask where his sister was. He knew if I was home even for a moment to see him that I would have had one of the people in the room with her. He knew I would never leave her there alone and he would expect it no other way because he was protective of his sisters since the day they were born.

I had to ignore his inquiries for a little while because I had not thought of that, I was never given instructions on how to lose a child, how to explain it to their siblings. Later that night I sat down with him and explained, the best you can to a four year old, that his sister had passed away. He was so upset, we slept together for at least a week while I held him and tried my best to explain.

Lilliana barely slept for at least a year. She and Gabby slept together up until Gabby got sick, holding hands every night and snuggling. That was their comfort space. Lilly still slept okay when Gabby got sick and went into the hospital but somehow her instincts kicked in when Gabby passed and she knew. She could not sleep, she seemed to have bad dreams every night and was overly restless.

That first year was just one big blur of going through the motions. I took Logan to school, cared for Lilly, cooked, cleaned, grocery shopped, all the usual things a stay at home mother does with the added panic attacks I was getting once a week. Every car ride, lasting more than ten minutes, I would experience the entire hospital scene played over in my head. I tried listening to the radio louder, starting a conversation with Logan, anything to keep me out of my own head. By year two it all soaked in harder. This was my life now, nothing had changed in a year and nothing was going to. So strange to think my mind would at some point wake up or they would call and tell me there was a mistake, that after I left the hospital they revived her. Any rational person knows that isn’t something that would happen in reality.

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Gabby remained a constant topic in our house and does to this day. She never stopped being a part of our lives or our family. I often do just say I have three kids although I never said I would because when you say four and they count three heads they ask, I explain and people become uncomfortable.

Piper was born almost four years after Gabby and three after she had passed away and yet she knows plenty of her sister. She went to her first grade class and told them all about her….that was a discussion the teacher brought up as most kids don’t experience death until they are older because they are sheltered. My kids weren’t given that luxury, my older two have been to three immediate family funerals within the first 8 years of their lives.

I cry a few times a year uncontrollably, it is almost on a routine of sorts, I don’t need counseling, it is just a part of my new normal. I cry for the girl I will never get to watch her become. I cry for decisions I know now that I should have made differently. I cry because Lilly will never get to fulfill that once in a lifetime twin bond with Gabby. You never stop loving a child you have lost. You never stop being sad for that immense loss, and you just grow to accept the new normal.

Gabby taught me life is fragile, that even through the tears and the pain you can smile. She taught me that even at your weakest you have strength. It is amazing what a small child not yet able to walk can teach you as an adult.