Brevity.
Brevity can teach one a lot. It can sharpen so much of life into laser point focus. Brevity can also challenge. It can challenge faith and family. Brevity brings with it opportunity to grow and change and gain a new level of closeness to the reality of Heaven.
One of the hardest and saddest days of my life, June 20th, 2018 brought that brevity. And all it has to offer, with it.
I remember getting the call from my mom that they didn’t think Jason Asher had much longer, but I’ll be honest, I didn’t believe it. I really believed now that he had outlasted the many doctors negative predictions or advices for his early demise (aka abortion aka murdering him while he was alive inside my sister in laws womb), that now he would be strong enough to survive the possibility of surgery to correct his LUTO condition. I had SO much hope and not a true understanding of how weak and vulnerable his tiny little body actually was in that NICU in New York. But, when I got the second call from my mom saying similar things again and urging me, if I at all thought I could, (since I was also one of the main caregivers to my Mother-in Law in end-stage MSA-P) to try to come and say my goodbyes to my nephew and see my niece in the NICU as we were unsure how her outcome would be as a preemie, as well.
Having a nursing infant and on such short notice, I decided the long trip to the NICU, the visit and trip home I would need to bring him with me. My wonderful sister in law on my husbands side of the family came and cared for my Mother in law and my other 4 kids, along with her own 5. I am forever grateful to her for that sacrifice and love she showed that day and always.
The drive to the hospital was somber and quiet. When we arrived Jesse was asleep and so my dad offered kindly to watch him so that I could go up to the hospital room with my mom to see my brother, his wife and possibly the babies since we knew we wouldn’t be allowed to take my baby into the NICU.
When we saw them it was just no time to be happy or rejoice, even though they had just delivered beautiful twin babies. The fight for their lives overtook any feelings of joy and replaced it with uncertainty and heartache in the journey at hand. The room was honestly full of sadness and uncertainty. Very shortly after my mom and I arrived in the room my brother got a call on their room phone and it was very evident by his tone things were very very bad. He got off the phone and said Jason had been crashing and they tried to revive him several times and he is barely hanging on. The doctor was urging them to go up and see him and make decisions. Even in that moment, I remember thinking we needed/they needed, to fight for him. It still did not sink in to my heart or head just how fragile he was. My sister-in-law was in so much pain physically. I could see it in the way she was hobbling after an emergency twin C section and severe edema issues. I was worried for her physically, but also so broken for her emotionally knowing how devastating it is to be so physically broken and emotionally broken all at once as I recalled my state after losing our own daughter, Joeli.
I watched them gather themselves, fight a bit and try to process what they were going to do. As we got into the elevator, I felt like screaming and crying and escaping. Adding to all of that, I also knew the “rules”. I wouldn’t be allowed in the NICU with Jesse and I was unsure what to do with my own baby in all of it. I honestly felt so sick to my stomach, so sad and so heavy and lost. We tried to communicate everything to my dad and he said Jesse was still fine and wanted us to go. So, we followed them to the NICU and the sights and sounds of that huge ward filled with families, nurses and vulnerable children will forever haunt me. We rounded a section and I saw Jason all hooked up to machines and he looked asleep very soundly. The machine they had him on made me so sick to my stomach. It was called an oscillator and it was essentially, I would learn, the only thing keeping him alive. It was shaking him so immensely fast in hopes to keep him breathing and his heart beating... it sounded to me like a jack hammer. His poor abdomen was sunken in because of his urinary condition and his one foot had not had a chance to fully form because of the low amniotic fluid during pregnancy. But aside from those visible issues, my nephew Jason Asher was the most precious beautiful baby boy I’d ever seen. He had dark brown hair and a strong body built to fight. As I looked at him with all the love that welled up inside of my heart from the very moment my sister in law told me they were expecting and I thought it might be twins, to the many times I spent praying over them in the womb and before hand for the blessing of their lives in the first place, I just started saying, “Hi Jason, Aunt Abi loves you! I love you so so much!” And as soon as I started talking he heard my voice and his beautiful beautiful bright brown eyes and strong little head turned and he looked RIGHT AT ME as if to say “I love you too Aunt Abi thank you for praying for me and being here for me!” I will never ever ever forget that very special moment and those beautiful eyes.
After that, the doctor led us all back into a side room to discuss the situation. She explained that Jason is a fighter but that he is truly fighting for his life right now and that looking ahead there would be many more surgeries ahead if his lungs and body ever develop to be strong enough to survive the surgeries needed to fix his LUTO. She explained that because of the low amniotic fluid throughout the pregnancy his lungs were very underdeveloped and he was only alive right now because of the machine he was on. They would continue doing whatever they could do but they had already revived him a couple times that morning when he crashed and that the more than continued to happen the more brain trauma would also potentially happen. All of it seemed so horrible to even have to process. I hated so much that my brother and sister in law were in this place and I still wanted them to fight for Jason in my heart of hearts. I can look back now and see that this decision was most wise and gentle toward Jason. But I hate it with all my heart that we didn’t get the complete miracle here, though we did see so many miracles along the way I still longed to see him grow up and be theirs to love here! Even now writing all this out, I still long for that. But, as they discussed everything they did decide to take him off of the machines and allow him to pass peacefully.
We eventually met up with my dad and even the waiting area the staff was upset I had the baby with me and I felt so bad about that I was possibly adding any stress or frustration to an already horrendous situation and I just wanted to leave so that it wouldn’t be any issue added. But they both advocated for me and Jesse to be able to stay and be with them as they said goodbye to Jason. There was the head doctor who also advocated to go against hospital procedure and allow for this exception, and though we faced some very angry and pushy staff I understood completely the various reasons why typically this situation would be so unacceptable and add noise and stress and hurt potentially to other families. But for ours, it obviously meant so much to them to have us there and not have me have to go wait alone somewhere during his homegoing. I’m so thankful for that doctor allowing me the very painful opportunity to support and love my family as well as have a chance myself to say my final love to my nephew that day. I was able to sing Jesus loves me to Jason and hold him. And then when he had gone to be with Jesus and Joeli, as we went to leave little baby Jesse reached over to his baby cousins head and stroked it and said, “aww baby” as we left. A moment we will treasure forever and a true testament of the love between cousins and the beauty of how children even babies themselves see the beauty of LIFE!
The drive home was full of tears and emotion and shock and processing. The next few days I spent just in post trauma. I almost had a panic attack in our backyard just hearing a noise similar to the machine that was keeping Jason alive and that was when I knew my brain and body needed tlc. I also knew if I was having trouble processing not even one full day in the NICU that my brother and his wife would be so deeply hurting having to face the NICU day in and day out even after losing Jason and seeing “his spot” re-filled with an empty bassinet and just continuing to support their other baby through her NICU journey. Grief was so hard to walk through also because it was not MY baby so not many people really checked up on me and how I was doing. I was struggling to process my own grief while also staying present for my mother in laws needs and my own kids and family. I had to toughen up and stay strong and not fall apart and that was really really hard when all I really felt capable of doing was laying in bed crying and mourning.
To this day, I also mourn over how my brother and sister-in-law have processed everything by keeping distance from the family. I rarely get to see my niece or spend any time loving on her and I grieve that too. The rare occasions they are around my heart is full and I long for the day when God can fully restore and mend hearts.
There is so much brokenness in this world and I don’t want to share this to add to the brokenness, but to share my own heart and journey through one of the most difficult experiences of my life in hopes to help myself process more—which writing always does, and in hopes to remind someone else facing heartache beyond what they feel they can walk through that it is so vital to anchor your hope not in today or tomorrow, but in God-the Hope of our future! I also want to say, it’s not worth being mad at Him. He is the only reason I’m still standing. His Word and promises are the only sustaining goodness and grace I cling to. I have the promise I will see Jason Ashers beautiful eyes again someday and that he and Joeli Grace are walking in the light of Gods goodness and glory fully healed and fully restored!
“He who testifies to these things says, “Yes, I am coming soon.” Amen. Come, Lord Jesus. The grace of the Lord Jesus be with God’s people. Amen.”
Revelation 22:20-21 NIV
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