I was given thirty-five days in July and August 2009 with my son. Each and every single one of those days was a gift. I prayed, hoped, begged, and pleaded that my son would live. He tried so hard; gave such a valiant effort, but even with the surgeries, treatments, and medications he was given, the birth defect was too much.
MJ gave me 36 weeks in utero and then 35 days of gifts. I’ll never forget the thrill when we found out we were going to have twins. I remember being just amazed at every single ultrasound. I’m not sure which of my boys kicked me hard enough to feel first, but every kick thereafter made me smile. Even though only one of my twins is alive today, I am still a mother of twins, which is another very special and unique gift. When I think about all my son gave me, I am amazed.
Aside from simply being his mother, there was not much I was able to do for my son once he was born. Sure, I signed forms for treatments and authorized surgeries. But I could never really do anything. One time each I got to change his diaper, take his temperature, and give him a sponge bath. Those moments I treasure so much. I pumped for him for 35 days, but he never was stable enough to have any of my breast milk. I visited the hospital every day, some days never leaving and spending the night there.
But I remember feeling like I wasn’t really his mom’ that he wasn’t really mine. I was so scared initially. The NICU is a horrifying place when you are first thrust through those doors in a wheelchair hours after a c-section. The hospital he was born at insisted the room stay as dark and as quiet as possible. I couldn’t even give him a kiss because they said it caused too much stimulation for his weakened body. All I could do was place my hand over his hand and whisper to him. When he was transferred the next day to a different hospital, the room still had to be dark and quiet, but he was in an open pod and I could kiss him and touch his face. I wish I would have thought to read him a book or sing him a song. Instead I stood over his isolette and talked to him, held his hands and told him how much I loved him. My mom and I would put his twin brother next to him and take pictures, dreaming of the day as toddler he would proudly exclaim, ‘I’m the one with the scar on my belly!’
That day would never come. Just five weeks after I became a mother my husband and I had to make a decision. The doctors told us he was going to die. There was nothing more they could do. And we knew. We knew by the look of his skin and the swollen body that had become our son. He was turning gray due to lack of oxygen and his system shutting down. The doctors exhausted all options and so many medications in an effort to save him, that when his kidneys shut down, his body swelled to at least twice the size a 35 day old baby should be.
That’s when we decided to hold him and let him die in our arms, surrounded by his parents and twin brother, loved to the end, and even more in death. It was our gift to him. We loved him enough to let him go. Our gift was goodbye.
There was to be no more machines, no more medications, or catheters or chest tubes. Just our son, wrapped in a blanket I would sleep with for years. The doctor would remove his ventilator and for the first time we would see his face without tape or a tube sticking out of his mouth. That moment would amaze me. A few precious minutes later that same doctor would check for a heartbeat and whisper in my ear, ‘MJ’s gone.’ And life would never be the same.
That night I believe the one and only thing we could truly do for him was let him go. We got to choose how he would die. And I am so thankful it was beautiful and peaceful, because I know that for so many it is not. Taking him off of life support on our terms was somehow a more dignified way to die to me. It was the one and only gift I could give my son.
He gave me so much, and what I could give him, I did. Our gift was goodbye.