By Joyce: This month we celebrate National Down Syndrome Awareness. Each year since Sarah and I began blogging, we have participated in an open forum called 31 for 21. The purpose is to share 31 days of our world, our story, our life, living with Trisomy 21.
Over this past year, I have received several emails and a few phone calls that question whether we, in the Down syndrome community, try to gloss over real life. It has been suggested that we purposely do this to hide the real footage. So this year, I have decided to do something different and openly reveal a personal journey we have been on.
My writings started as a manuscript for a magazine article, followed by a request to work it into a book. After much thought, I have concluded that is not the direction I currently wish to go, rather I want to share it here in this open forum. Our life is no different than others. It is filled with the good, the bad, and the sometimes ugly. My hope is by sharing, others too may learn from our trials and triumphs.
Getting to Forgiveness
Chapter One : The Phone Call
By: Joyce Ely
When Sarah and I began this electronic journal, I was not sure what to expect. We started off slowly, and soon we were receiving a few hundred hits a day. And along with the visits, were comments. Lots and lots of wonderfully supportive, kind, soul reaching feedback. It was just what I needed at that time. It seemed we had found a niche few were writing about, being a real life teenager who just happens to have Down syndrome. Our posts were largely related to the simple, every day journey of Sarah’s life.
After just a few months, I was being asked for one topic over and over again…tell us your birth story. It seemed that many in the world of Down syndrome liked to share and read how the first few weeks had gone after the diagnosis of Trisomy 21 was received. For me, that was looking a good way back, nearly twenty years at the time. The truth is, I had never written about our birth story. There were even parts that I had never shared before. With anyone. But the one thing I had learned from our blogging thus far is our story was making a difference to others, and as a social worker that felt important to me.
So I sat down and started writing. I decided to post things in real time, the best I could at least. I quickly found that once I started to let the details flow to the keyboard, my emotions followed close behind. Painful memories that I had buried deep, down inside were resurfacing as I wrote. I cried. I sobbed in fact. Just as I had twenty years before. The difference of course, was the fact that I was now looking back. I could see the future, for a good chunk of it had already happened.
There were parts of the story that were more painful than others, yet I could not put them aside. For I know that every family has bumps in the road, as the complete acceptance of a child with Down syndrome does not usually come instantly. I tried to adequately portray those feelings. I worked for weeks on the series. And then on August 7, two days before Sarah’s birth, I started posting them. Each time a new post went live, I would read it from the blog, just as our followers were. Sometimes I cried. Sometimes I smiled. Sometimes I cringed, wishing I had done something a little differently back then. Sometimes I was proud of my own strength.
When we got to the post a few days post birth, when my in-laws met Sarah for the first time, I shared a part of our journey that I felt was important. I wanted other families to know that we all have moments when we are caught off guard. When someone is not going to respond the way you would wish, but I suggested that you not give up on that person, rather give them another chance. I then posted a picture that I thought demonstrated in the most beautiful way possible, the turn around that can occur. I was so pleased that I was able to share our story twenty years post birth with a happy ending.
Never in my mind was the thought that I was hurting someone. That was certainly not my intent. But that is what occurred. A few weeks after the series ran, my husband and I received nasty, threatening phone calls. Hurtful accusations were made to both of us. Our love for each other was questioned. Even our marriage was put to task.
I was in shock. I’ve learned though that shock is a useful tool, as it allows the body to go into a numbing phase, thus permitting a certain detachment from the immediate situation. It buys the mind time. Time to absorb. Time to think. Time to refocus.
The fact gathering features on the phone provided me with this: the call lasted for forty seven minutes. Why did I allow this call to continue for two thousand eight hundred twenty seconds? Because my dominant ear was listening as it had for the past twenty six years from this side of the family, nearly fifty from the other. The non-dominant ear however, was listening with a new found set of tools.
I had already learned that nothing destroys self-worth, self-acceptance and self-love faster than denying what you feel. Without feelings, we would not know where we are in life. Nor would we know what areas we need to work on. I was learning to honor my feelings and let go of that which wanted to drag me down. I was learning that in order to live with peace and harmony, I had to relieve myself from the negative energy swirling about.
So as I sat in my chair processing what I had heard in this phone call, I knew in my head this person's reaction to the blogpost written in a series about Sarah's birth story, was not appropriate for an issue that had happened twenty years ago. I probably pushed a button into this person's childhood that was unresolved. Perhaps an issue that was a source of pain for her. Still, my heart was breaking in a million pieces.
But the fact was, I also knew that by her opening up this subject matter, I needed to go back and reprocess. Way back. To the very beginning. Not just the day Sarah arrived, but the beginning of our time together. In this call, my love for my husband was questioned. The person who had called me firmly believed I would not have written the blogpost if I did. So I started to question it myself. Maybe, I did not love him like I thought I did. Maybe I was hanging on to something that did not exist. Maybe, it was time to let go.
As I packed, I gathered more clothes than I usually do. In order for me to leave though, I had to pack Sarah’s bags too. I had become her court appointed legal guardian on her eighteenth birthday. Therefore, if I left without her, I would be abandoning my duties that I take very seriously. As I loaded our bags into the car, she of course wanted to know where we were going. I told her we were heading to Columbus, where we had a place to stay. She was comfortable with that explanation, as she and I often enjoyed long weekends there.
As I drove down the highway, I pondered over and over in my mind where this all was heading. Why was this happening? Especially now after all these years. I prayed like I never had before for the answer. I begged and pleaded for a sign. Something, anything, for me to hold onto.
On Saturday, the Ohio State Buckeyes were playing. I had brought our season tickets just in case we decided to go. It was a sunny morning, but not too hot. Sarah assured me she felt good. So we dressed in our matching scarlet shirts, she grabbed her favorite apple juice and goldfish for a snack, and I loaded her wheelchair into the car.
As we arrived at the stadium, I was fully aware that she was still very weak. Several months of hospitalization due to severe respiratory distress and persistant pneumonia takes a toll on the body. She was bone thin. Her lips were dry and cracked from the oxygen she required. I noticed too she still protected her left arm, which held an IV line for so long, by holding it in an awkward, frozen straight position.
I have not been to many games, so they are still thrilling for me. But there was something about this day that was even more special. Everywhere we looked there were white uniforms. The opposing team on this early season game was the Navy. I’ve always held a special place in my heart for our armed forces. Sarah and I had been making care packages for years to send to those serving. It was a very moving sight to see so many together in one place.
We made our way to our seats before the crowd came in and were greeted by two very friendly stadium ushers. I guessed they both were in their mid 60’s, possibly older. I admired their zest for continuing in this role. The one gentleman offered to take our picture. The other wanted to move out of the way, so as to not be in it. I wasn’t sure why at the time, but I encouraged him to stay next to us.
Soon the infamous Ohio State Marching Band could be heard coming down the ramp. I always get goosebumps as they enter the field. Then Sarah’s favorite part, the raising of the American flag. Our seats this year were directly in front of the pole which made it all the more thrilling for her. She had a smile from ear to ear she was so excited to be here. I could not help but get a dry lump in my throat realizing that I was sitting next to my daughter, born with Down syndrome, at an Ohio State football game. This was not our first, but each time I am reminded that never when she was born would I, nor could I, have imagined this scenario.
Sarah stood right up for the singing of the National Anthem. Then a trio of planes did a fly over. Good gracious are they loud, so Sarah put her fingers in her ears. I felt Sarah’s body hit mine, yet did not think anything about it, as the shoulder to shoulder crowd was still standing for the first play of the game. I glanced over in her direction as the ball was being carried down the field. I immediately recognized the look of what we refer to as "an episode." She was all of a sudden pasty white. Her eyeballs were rolling back into their sockets and the whites of her eyes were turning gray. Within a flash of a second, her body was going limp and then she collapsed into my arms.
I hurriedly pulled her toward the aisle where I was met by both the ushers that had first greeted us when we walked in. The one instantly took her under one arm, while I kept myself positioned under her other. The second usher reached for his walkie talkie to call for medical assistance. That was my queue to transition from my role as mother to first responder. I asked him to please not call just yet, but to help me get her to her wheelchair which I had locked under a nearby stairwell. As I began to administer her emergency medications that I always carry with me, the usher who had stayed in the picture (my only regret is not getting his name) began to talk to me.
His soothing voice seemed almost familiar. He was praising my calm demeanor and the way I was so prepared for this situation. He was encouraging to Sarah also. He got down on his knee to talk to her at eye level. As her color was returning to her face and she slowly took long deep breaths into her puffer of Albuterol, I started to tell him about her past. I described her open heart surgery followed by many months of complications in the ICU. I told him about the day I found her in her crib blue, only to find her again a month or so later in the same situation. I described the day we made the difficult decision to allow a permanent trach to be inserted into her airway. And how it had been closed seven years later, which is why I did not want him to call for help. I described emergency protocols that may suggest intubation which could be reason to need a permanent tracheotomy again.
I told him of the day just seven months prior, when I had left a job that I loved, to take care of Sarah after the doctors suggested it was time to bring in hospice care. I somewhat joked about how I had traded in strategic plans and budgets for syringes and saline solution. I sarcastically stated I had replaced my brief case with a red bio hazard box. I told him that my husband and I along with her doctor, had made the decision to allow Sarah to live her final days free of medical personnel and hospital rooms. And so far, we were accomplishing that wish.
I will never forget this next moment. He reached over and put his arm around my shoulder. As he squeezed me tight, in a near whisper of a voice he said, “I’ve never witnessed a miracle with my own eyes until today. God has blessed you and will continue to do so.” With a smile on his face he continued, “Sarah’s time on earth is not done yet. Go home Joyce.”
As I listened to his words, I was also assessing Sarah. She was beginning to look better, so I said we would and that we also had better medications there. I thanked him for his help and started to push her down the corridor under the huge Ohio Stadium to exit the gate closest to our car. As we walked, we passed another group of young adults dressed in their Navy dress whites. They so sweetly greeted Sarah, so I asked them if I could take their photo.
As I was putting the camera away, the significance hit me. My eyes welled with tears as I recalled the picture I had at home of my grandfather in his Navy uniform. The ushers voice, it sounded just like his. He also used the same encouraging words my grandfather had when he was alive. He had always been my greatest supporter. When all others were quick to scold me, to judge me, to criticize me, it was my grandfather who showered me with kindness and unconditional acceptance.
As I continued to walk, a flood of memories came back to me. I recalled as a young girl how I would overhear him talking in his hardware store to the men who would drop in to see him. He seemed to be the go to guy in town when others were having difficulties with life. For many, he served as their Chief in the all volunteer fire department in Sidney, New York. For some, he was a fellow business owner. For others, he was simply a friend.
I distinctly remember how he would frequently end a conversation with, “Go home,” followed by a first name. As I grew older, I realized he wasn’t just telling them to go back to where they lived, he was telling them to go home to be present with their wife and children. He was urging them to go work things out.
Now, I understood. The usher in the red cap wasn’t telling me to go hide in our weekend condo in Columbus, he was telling me to go home to my husband and two sons in Cleveland. As I pondered that thought, I became curious how he knew my name. I was quite certain I had never once told him my name…
…To Be Continued