I’ve heard people say pain is meant to be felt, it’s how we know we’re living. I think sometimes the pain is too much for us to process at the moment, so our body stores it. It doesn’t allow us to comprehend and we find ourselves going through our grief as if we are really not present.
I think that would best describe those first few days leaving Iowa and arriving in Baltimore. Honestly, maybe even those first few months or even this first year.
Reflecting with those who walked through this journey with us a year ago, that pain is still raw. I’m amazed by how I feel. It is there, I feel it, and it hurts. It never went away. I feel that stabbing heartache, the intense pressure in my chest, the burning in my red eyes, the pounding in my head, and the weakness I had in each limb of my body. Each breath I took felt more suffocating than the last. And I honestly had no idea how I would function after leaving Baltimore. The city lights looked like those high-speed Internet commercials, fast and impossible to make out where they were coming from. Food had no taste and I couldn’t tell you what I ate or what clothes were on my body; both I’m sure of happened.
I can feel how I did a year ago, it just not as excruciating as it was during those foggy first few days.
We made the hard decision that Grant would stay home to be with our older son, and I would take Urijah with the support of our long-term care giver, Sam.
The pain I felt at the airport; when I regained my consciousness out of the trauma fog, that Grant was not going any further with us agonizing. I was in a trance focusing on the end goal that I had been for so long, “get Urijah to Kennedy Krieger” that I didn’t even noticed until Sam stopped me and said, “Stop, Grant can’t go any further. He has to say goodbye now.” Right there at the security check point, Grant kissed and hugged me and then bent down with tears in his eyes and embraced Urijah. The pain was too piercing I had to look away. As we walked through the zig-zagged lines, through security, and to our gate my breathing got heavier, and I slipped deeper into a trance of isolation.
The flight was intense at times like we knew it would be. I think I was bit 12 times; Sam 14 and both of our hair pulled an uncountable number. His amount of self-injury, well what was the point of taking data now? We were on our way.
I will never forget that night in the hotel. He was so sweet, so happy, and so “perfect.” I kept thinking, “how can you possibly be leaving him here…what if he doesn’t show any behaviors…”? I held him so tight that night as if it could be my last. I studied his face, ran my fingers through his curls, and made sure I didn’t forget anything about him.
That morning it felt like time stood still. We were to report to the lobby of 707 North Broadway-Kennedy Krieger. Not knowing what to expect we waited that green accented lobby, afraid and apprehensive. Urijah’s team met us in the lobby at noon on Tuesday, September 18. Sam and I went one way with a team and Urijah another and just like our lives would never be the same.
We meet with each interdisciplinary that day and I remember thinking, “Wow. This is like nothing I’ve ever experienced. We are beyond blessed to be here.” I felt I was among some of the best professionals, which was so exciting, and I was thoroughly enjoying our conversations. Then with each close of the door I was brought back to the reality of why we were here and my spirit saddened. Acknowledging that my son was in a locked unit on the floor below and wasn’t coming home with me. Admitting to myself, he would remain there. Getting the best care he could with these amazing people, whom I have had the pleasure of meeting with for the past several hours. But the truth was, I was leaving my seven-year-old son thousands of miles and a three-hour plane trip away, and I was experiencing silent turmoil.
This was all new, and as grateful as I was, it hurt like hell. The numbing kind of hurt, where you are so distress you no longer feel anything. When I left the unit for the first time, my legs were as wobbly as Jell-O. After kissing my son, I knew this would be the first night of many he would not be sleeping with in the comfort of my care. Someone else would be taking care of his bedtime routine. Others would be tucking him in at night and other arms would comfort him when he was scared or wake in the middle of the night. It was then I had to put all my trust and assurance into those at Kennedy Krieger.
I opened those heavy steel doors; which in some way represented how heavy my heart was.
I opened those heavy steel doors; which in some way represented how heavy my heart was. As they slammed shut behind me, I remember the feeling of not being able to breathe. As if the air was being sucked out of me, and I was suffocating as I waited for the elevator doors to open. Completely lost and unsure of everything, I met a poised mom who reassured me. Holding me close, she whispered, “1 and 16, your son is 1 and 16! Your son is going to be okay. Do you know how blessed we are? We’re going to make it.”
The days after were a blur. I’m grateful for those who helped support me and my family. I don’t recall a lot, just deep sadness.
The flight home was lonely and hard. I don’t remember talking much. The pain in my chest and lumps in my throat were powerful. I felt myself slipping into an unexplainable grief as I looked out the window down into the City of Baltimore. “Take care of my baby, Baltimore, take care of him.”
Arriving home to an empty house without him was something I was not truly prepare for. I fell into my husband’s arms and sobbed for what felt like hours. I couldn’t stand to look in the backyard without him here and had to keep the curtains drawn for days.
People would check in on me, text messages came in and the phone would ring. I didn’t know how to answer. This isn’t something that is normal. This isn’t a chapter in the what to expect when raising your child book. It was a process, something that was going to take time. We all needed to heal. It was truly, Heaven in the Mist of Hell.