Courageous Parents Network is honored to share here, with Brenda’s permission, her eulogy to Sam at his service on October 6, 2018. “I really think it was my love letter to him.”
I’m doing it. I’m telling your story just like I promised you I would. I’d be lying if I said I didn’t practice in the shower every day what I would say about you at this very moment. And now that we’ve actually walked through this door, I struggle to find words that could do you justice.
The doctors told me not to expect you to survive birth. I remember rocking on the chair in your empty nursery room wishing this to be true. A horrific thought a mother should never have. I thought there was no way I’d survive what caring for you would require. They told me you’d be blind, have Cerebral Palsy, never walk or talk. These things all turned out to be true.
I didn’t care, you were perfect to me. I remember that day so clearly in the neurologist’s office as she gave your daddy and me this news. I wanted the floor to open and swallow me up. But as the weeks passed you grew stronger in my belly. Indeed, you would survive. I had 3 weeks to wrap my head around your stroke and rally within myself to pull up my boots and start the battle.
Sam, I’ve never looked back from that day forward. You came into this world crying loudly and no one expected you’d even be breathing. You were tough and strong right from the start. I remember the doctor standing in the doorway of the hospital room on the day we were to take you home. She said, “Just take him home and love him.” And we did just that.
You were my first baby, I was only 23. I knew nothing! I didn’t know babies shouldn’t cry ALL the time. You only wanted to be close to me. To feel my warm body and my heartbeat. I always felt you were uncomfortable in your own skin. Your crying didn’t stop at infancy, unfortunately it lasted until you were 12. For all those years, I had every test run and took you to the best specialists, and no one could figure out your crying. Until one day…you just stopped and never did it again. No explanation for it. But we were grateful that it ended for you and for us.
Everywhere I took you, people would comment on what a beautiful boy you were. I know I’m biased, but you really were. You had the best skin and hair…man that beautiful hair. You started reaching into people’s hearts even as a baby and you never stopped touching them. Somehow after you were born, we started to see strained family relationships heal and people change their perspectives on life. You taught us all what was important and what was not.
In the early years, your daddy and I worked with you tirelessly. We even took you to a brain institute in Philadelphia. They sent us home with an intensive therapy regimen to do with you 8 hours a day, 7 days a week. Half a year went by and you had no improvement. I once calculated that you and I sat together in the rocking chair 30 hours a week. It was my only way to comfort you. The years of in-home therapy & nursing, respite care as well as inpatient institutional stays followed. I grew jealous of sharing my baby with so many people. It was hard Sam, very hard. I needed help. I know you knew that too.
As the years went by, you grew and changed and new challenges presented themselves. It was becoming apparent that there would be no cure for your ailments. We started to shift your care from cure to comfort. Much to my surprise, not every medical professional supported this. They thought they could fix you. Your comfort was the most important thing I wanted for you. I worked tirelessly to find the right care providers and professionals to support this. I was weary of hospitals, machines and needles and I know you were too. I wanted you home, with us, where you belonged. One by one, I started to make the circle of interventions and outside care smaller. You were my responsibility and I took that very seriously. I never expected you to be anyone else’s. Caring for you was easy for me. I didn’t mind at all. It was all the other things that surrounded your care that broke me. The red tape, paperwork and constant mistakes I had to correct from carelessness on the part of others. It broke me. I’m glad it broke me, I’m stronger for it. You gave me my voice Sam. I was quiet and shy before. I would have gone to the moon for you if that’s what it would take. I learned how to speak my mind intelligently to get exactly what I needed for you.
The past 2 years I could see us both getting tired. I would say to your daddy, “My soul feels tired.” I watched your body morph and weaken. I knew the time was growing short. I ramped up my efforts to secure your comfort even more. Your dignity and cares were always my highest priority. Anything less was not acceptable to me. So I cared for your body with the utmost respect. I cared for your soul by telling you how much I loved you. I wasn’t about to change any of that.
I’m sitting in your room Sam. It’s starting to look more empty. The blanket that was covering you and the pillow you drew your last breath on are still on your bed. Your little brother loves to climb up there and play. He loved you so. I wrote a note to myself hours before you left us. It said, “I am not afraid.” Sam, I was not. I promised you that I saw you into this world and I would see you out. I was very selfish about that wish and I fought very hard to not share it with anyone. As if you knew when the time was right, you took your last breath only moments after your brothers had fallen asleep. I heard something change with your breathing and I came in to see. The monitor on your finger wasn’t reading anymore. I looked at your face and you took one more breath, just for me. The most amazing gift I’ve ever been given. Your daddy and I surrounded you with love. I had played this scene out in my mind so many times, I didn’t know what motherly primal behavior would actually come out. I cried, I screamed and then I stopped and took care of your body one last time. I wondered if I would hold onto you and not let them take you. I did not. The moment you breathed your last breath, I knew my work was done. I loved you truly and deeply every day of your life and I told you that. There was nothing more to tell. The loving happened when you were living, as it should. I have no regrets. It was time for you to fly. I opened the window in your room just as I said I would. You flew Sam, you flew! The body that trapped you no longer remains. Free as a bird, my boy, free as a bird.
Moments after you passed there was a sense of relief in our household. We had all been holding our breath for a long time. I had so much guilt over feeling this way. Thoughts of plans that have been put on hold, family vacations and opportunities that were not available to us, now became possible. My Sam had to die for us to be free. As only daddy would do, he read my mind and knew I would feel this way. He said, “Let this be Sam’s one last gift to us…freedom.” The words healed me instantly. I will not look back. So we will fly too Sam. It was time.
A few days after you passed, daddy and I were looking at your baby book. I read a line that said, “The first time I felt you move was September 27th, 2002.” I gasped! You left us on September 27th, 2018. Sam, you completed your circle of life beautifully, flawlessly and completely.
I am learning to embrace the pain as well as the joy. Some people only want to remember the good times…not me. It was all part of the story. The depth of the pain equals the depth of the joy. Your smile and laugh lit up our world. There was nothing better.
I will always speak your name. I will tell your story and you will continue to change people’s perspectives and lives. There are things I have no words for, only feelings. These are for me, just me. After all you were mine. . . all mine.
The music you hear playing today at Sam’s memorial I played for him the last 3 days of his life. The shirt I’m wearing says, “Be courageous”, he taught me that. My necklace symbolizes the perfect circle that completed his life.