K-Bye!
“I’m ready! I’m ready!”
This was one of Robert’s favorite SpongeBob SquarePants quotes. He was almost always ready to watch any television show or movie that included his imaginary friend who adorned his bedroom wall. Robert was also ready when the time came for him to leave this planet and be free of the struggles and confinements his disability delivered to his life.
He was ready, but was I ready? How could I be? For eighteen years, I had cuddled him, fed him, bathed him and loved him more than my own life. How was I going to prepare for him to say to me, “I’m ready!”
I will tell you how I did it — in the best ways I knew how. This was only my experience. You may have your own things to add on your journey. If so, I hope you will share them with us this year in our In Our Arms Community Facebook group. Undoubtably, there will be some similarities, but the fine details are uniquely our own. I want to describe, in detail, how we managed in Robert’s final few weeks because some of you have asked me to share this part of my story. There may be more of you who are curious, but not able to process this information right now. I believe it is important, though, for you to read as much as you can handle. Put it away if it is too much.
Robert had a way of letting you know when he needed your undivided attention. Like most children, when I would find myself preoccupied with a task that did not involve him, he would immediately let me know, especially when I was on the telephone. His very clear language could be heard not only in my ear, but in the ear of the person on the other end of the phone line, as well.
“Mom! Mom! Mom!” he would loudly shout in rapid succession.
My close friends were familiar with hearing these words, and they knew that our phone conversation would be ending very quickly. They really got the message when he would start yelling “Bye,” which he often did when his mother’s time on the phone had gone too long. Most of the time, Robert did not have an urgent need in those moments. He just wanted me to pay attention to him. That’s not uncommon in most children, but in Robert it was an adamant, unrelenting cry! Over the years, I grew to understand variations in the volume and intensity of his voice. His loud repetitious calling of my name usually meant that his iPad, speech device or television had glitched, and he needed me to fix it RIGHT NOW!
Years ago, when I heard another young boy in our church service speak his mom’s name during a quiet moment of reflection by our congregation, I remembered Robert’s second way of speaking my name. It’s called “echolalia,” sometimes also called “stimming” Echolalia is the repetition of words and sounds that have been heard, sometimes immediately in response to a stimulus or sometimes after a delay. Stimming also includes repetitive movements as a self-stimulation behavior to calm or express oneself. While stimming behaviors are found to some degree in all people, they are found especially in those with autism or other neurodevelopmental conditions.
Autism was one of the many medical complexities in Robert’s life. He responded differently than most people to things like noises. I believe it was his way of coping, though that is only my mom’s best guess. His response was usually a soft, mumbled calling of my name. It would repeat frequently, and there was really nothing I could do to stop that speech pattern. Robert had no control over that verbalization. It was a neurological manifestation beyond my control. Often, however, we received looks of judgment when his repetitive speech continued past some stranger’s comfort level. (That is a totally different blog post!) We just tried to stay close to him, to comfort him, until it ended.
The third type of Robert’s speech that captivated my attention usually meant that he had a major seizure and, as he came out of it, he just needed me to hold him closely. He would cuddle up. We both cuddled up and, if he could, he would doze off to sleep.
But in the three weeks prior to February 6th, there was very little language coming from Robert’s lips. His body had weakened over the 10 days he was in the hospital, seizing, but there had been no clear explanation as to why he needed to be admitted. He was just doing some things that were not normal for his mitochondrial progression. So, when it was clear that he wasn’t getting any better as an inpatient at the hospital, we took him home to live as an inpatient in our medical home. Mind you, he had already been on a palliative care medical plan for more than eight years, so being discharged from any hospital stay to return home to our care was very familiar to us.
Several of his siblings were able be with Robert during this final hospital stay, and that was an unexpected blessing for all of us. We were eager to get him home, though, and have him close again. The big, fabulous balloons and gifts that were delivered to his hospital bedside came home with us. A few bouquets of flowers were even delivered at our doorstep to brighten my day. Some friends realized what I needed more than I did. (Have I told you how much flowers bring me joy? Ok, yes, that has been well documented!)
He did not call my name in any understandable way in those last few weeks, but he began to moan in tones that told our family and in-home nurses that he was not doing well. In previous years, his doctors had told us that, because of his neurological condition, he probably would never register pain levels like we did. But something had changed. He had never moaned like that. He was feeling something that was deep, and it registered in his deep voice. We stayed very close to him.
I resumed teaching my voice students in our music room every day once he was discharged from the hospital, but we canceled all in-home therapy services and paused his educational plan. Even though Robert had very capable, loving nurses, I spent every hour in between teaching my students just holding him in his medical bed. I didn’t leave the house. Food was delivered or picked up as was our norm after each hospitalization. I desperately tried to hope that he might bounce back. But deep down, I knew better.
I shared with his neurologist and a few close girlfriends that as we brought him home this time, I knew he was just different.
“I’m ready! I’m ready!”
Those words rang in my heart as I fixed my gaze on his every movement. Robert was ready, and I was getting there, but only silently. I would not let those thoughts flow casually from my lips. It was not time, yet.
I will wait to share the events of February 6th with you soon. For now, please know that there was grace for the moment. I could not predict when he would say, “Bye, mom.” But when the time came, I know I had been prepared.
In 2015, Robert could not say, “Mom! Mom! Mom!” with the intensity previously used. He made it clear, however, on each day when I held him that he was grateful that I was next to him in his bed. His gentle smile and outstretched arms welcomed me back into his domain after each voice student departed. His excellent nurses welcomed me in and out of his room, and we shared his medical care together. They knew. Oh, how I know they longed to tell me. They tried, but I wasn’t ready.
But we all knew. Robert was ready.
That’s all I can give you today. This has been a rough post to write. I hope it is not too hard to read. I do not know how to support you as you walk your path, but I will continue to speak with one honest voice about the hills and valleys my family faced in our LifeUnexpected. Stay tuned, my friend.
Listening Library: His Strength Is Perfect (CeCe Winans)
“Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” (Psalm 23:4 NIV)
His Strength Is Perfect
His strength is perfect
So perfect
I can do all things through Christ who gives me strength But sometimes I wonder what he can do through me No great success to show No glory of my own Yet in my weakness he is there to let me know His strength is perfect when our strength is gone He'll carry us when we can't carry on Raised in his power the weak become strong His strength is perfect His strength is perfect We can only know the power that he holds When we truly see how deep our weakness goes His strength in us begins When ours comes to an end He hears our humble cry and proves again
His strength is perfect when our strength is gone
He'll carry us when we can't carry on
Raised in his power the weak become strong
His strength is perfect
His strength is perfect when our strength is gone He'll carry us when we can't carry on Raised in his power the weak become strong His strength is perfect
His strength is perfect
Raised in his power the weak become strong His strength is perfect His strength is perfect
Composers: Steven Curtis Chapman and Jerry Salley
© Copyright 1988 Sparrow Song (BMI)/Greg Nelson Music (BMI)
(both admin. by EMI CMG Publishing)/Careers BMG Music (BMI)/Multisongs (SESAC)
(both admin. by Brentwood_Benson Music Publishing Inc.)
