Rest in Peace, Sweet Nicholas

Nicholas Alan Gustafson

May 20, 2008-February 28, 2015

Forever 6 years-old

6 years, 9 months, 1 week, and 4 days was the amount of time we were given to love our sweet Nicholas here on Earth. Our boy joined the saints and angels in heaven nearly one month ago and we were absolutely heartbroken to say goodbye to him so suddenly. 

What seemed to be a typical Saturday in the Gustafson household, suddenly turned from completely normal into the most heartbreaking day of our lives. It was Saturday, February 28th and I was at Our Lady of Lourdes Parish that morning for the Rite of Election with Bishop Elizondo presiding to welcome all of the people of the southern deanery who will be baptized into the Catholic Church at Easter. Jeff was home with Nicholas and Ella and he got the children up and ready for the day. When I arrived home around 1:00 p.m. I was happy to see Nicholas out of his room and on the living room sofa with his dad and sister. Nicholas had not been feeling one hundred percent for several days prior. He did not have any firm signs of illness, and his pulse was within normal range as were his oxygen saturations, but he had been asking to rest in his room more than usual and wanted to be on his bi-pap ventilator on and off throughout the day to help him with his breathing. However, all day Friday and Saturday he was off his vent, out of his bedroom, and with our family in the living room. He wasn't complaining of anything, so we assumed whatever was ailing him had cleared up. 

I picked up some lunch for Jeff, Ella, and I that day on my way home from church and we sat down to eat in the dining room. Nicholas was lying on the sofa watching a movie and interacting with the three of us while we ate. He said to me several times during lunch, "I love you, Mom. You're so pretty." This was something he said to me quite often in the months prior to his death. It warmed my heart like nothing else could and I absolutely adored being the most special woman in our sweet boy's life. After lunch, I went over and sat with my face facing Nicholas' on the sofa and I told him how much I loved him, and how special he was to me. I ruffled his hair, kissed his nose and forehead, and rubbed his arm. He smiled his most brilliant smile, his adorable toothless grin, and beamed with joy at these few minutes of love exchanged between us. 

Jeff went in the garage to work on a mechanic job for a friend, and I spent the majority of the afternoon cleaning out our drawers and closets of clothes we no longer needed. I also cleaned the main bathroom and did some loads of laundry. Some pre-spring cleaning, if you will. I checked in on Nicholas and Ella in the living room every ten minutes or so to be sure they had what they needed. They spent the afternoon watching cartoons and playing together. 

Around 6:00 p.m. that evening, Nicholas called for me and asked for me to carry him to his bedroom. He said he was tired and wanted to lie in his bed. This was very typical for Nicholas. He would ask to go to his bedroom between 6:00-7:00 every evening and we would start his respiratory treatments. I laid him on his bed and he could hear the music playing on my cell phone as I usually listen to music as I clean, so he asked me to dance with him. I happily obliged and moved his arms and legs to beat of the song. I stopped after a couple minutes, letting him know that I needed to go start dinner, but he said, "Dance with me one more time. Please, Mom?" So I did. I moved his arms and legs again and he had the biggest smile on his face. He loved to watch me dance and asked me to dance for him often. I told him I would be back in a few minutes, I just wanted to get dinner started, so I asked him if he wanted to watch a movie on his iPad. He said he did, so I selected Open Season 3 on Netflix. When it began to play, he had watched it recently, so it started halfway through the movie. I asked if he would like me to start it from the beginning, and he replied, "No, Mom. That's okay." I asked him if he was sure because he always liked to start a movie from the beginning, even if he had just watched some of it that morning, and he told me again that it was okay, that he was fine with watching it where it was. 

So I left him to start dinner, which I had done hundreds of times before. As I was wiping down the kitchen stove, I was struck with a thought, "What if dancing with Nicholas was the last thing I ever do with him?" I quickly pushed it aside as these thoughts seem to come and go when raising a child with a terminal diagnosis and I didn't think much about it. I put some chicken and cous cous on the stove to re-heat, stopped by the laundry room briefly to fold a few towels, and sent Ella outside to hang out with her dad in the garage for a bit before dinner was ready. All of this took about seven or eight minutes and then I went back into Nicholas' bedroom. Nothing could have prepared me for what I saw.

There was our son lying on his bed, exactly how I had left him, except his skin was pale white and his lips had turned blue. I immediately went into life-saving mode: grabbed his ambu bag, switched on his cough assist, suction, oxygen concentrator, and bi-pap vent, and spent a few minutes trying to resuscitate him. I had done this dozens of times before, but my heart knew immediately that this situation was very different than any previous. I ran to the garage to get Jeff, but he had left to test drive the van he was fixing with Ella. I grabbed my phone and dialled 9-1-1 and was frantically screaming at the operator to send help as quickly as possible. I gave our address and then set the phone down so I could use both hands to continue to work on Nicholas. I coughed him, suctioned him, gave him CPR and supplemental oxygen, over and over and over again, crying the whole time and pleading, "Please breathe, buddy! Please breathe." I knew he had already died in the minutes I was away from him, but my heart was holding on to hope that he might start to breathe again. I pleaded with God to please allow our son to take just one breath, to come back to us, as I was totally unprepared to let him go. I felt for his pulse and couldn't locate one. I kept working on him for the next five minutes or so until the emergency responders arrived. Upon their arrival, I explained his diagnosis and what I had been doing since I found him unresponsive and they took over. I was ushered out of his room and one the responders asked if we had a DNR form for him. I was in a state of shock so I couldn't remember if we had one or not and I started to rifle through the numerous files in our file cabinet where we keep Nicholas' medical records. 

At that point, our neighbor and close friend, Leslie, came over. Leslie came over every single time she saw emergency response at our house. She would take Ella to her home if Nicholas was transported to the hospital, as usually I would ride in the ambulance with Nicholas and Jeff would follow behind with his things. This night was different, however. I completely lost it when I saw Leslie and explained that I thought Nicholas had died. She held me close as we both sobbed for what seemed like eternity. One of the emergency response team members again asked for the DNR and suggested I phone my husband. Leslie helped me find my phone and I called Jeff twice and he picked up the second time. The only words I could say were, "I think Nicholas died. Please come home." He was audibly upset and got home within a few minutes. Leslie took Ella to her house and Jeff and I held each other supporting one another on our feet as we cried uncontrollably. We could not locate a DNR form, so the paramedics worked on Nicholas until they had tried everything they could possibly do to save his life. After about twenty minutes, they asked if we wanted to have him transported to the Emergency Room. We declined knowing that would not do any good, as our son was gone. 

The emergency responders started to pack up their gear and whispered their condolences. One paramedic, bless his heart, told me that there were no signs of suffering, and that it was as if Nicholas had just closed his eyes and gone to sleep as his heart slowly stopped beating. To this day, I take such comfort in knowing that our son did not suffer in his last moments. Jeff and I entered Nicholas' room and were overcome with emotion. We sobbed as we told Nicholas how much we loved him, what a perfect son he was, and how cool he was (as that was what he loved to hear from us, he always wanted to be as cool as he thought his daddy was). We thanked him for gracing our lives with his and promised we would never, ever forget him and all the lessons of love, peace, and kindness he had taught us over the years. We thanked him for loving his little sister and giving her an amazing example of how to live her life in perfect love and charity. We stroked his hair, kissed his face, held his hands, all the while wishing it would never end. 

A trauma team was called on our behalf and two angels in human form were sent to us that evening to help us in the decisions we needed to make. Our parish priest also come over that night to give Nicholas a final blessing and to pray a rosary with us. We then were asked to make a decision about which funeral home to use so that they could collect Nicholas' body that night, and because I was in shock, I couldn't remember which one it was, so I knew I needed to phone my mom and ask for her help. I hated to call her as it was my dad's birthday that day, and my parents were out of town celebrating in Walla Walla, WA. I couldn't reach her at first, so I left a voicemail, and I sent her a text message as well. Within a few minutes she phoned me back, told me which funeral home our family had used for both of my grandfather's funerals and was extremely shocked and grief-stricken to hear of Nicholas' sudden death. 

The next hour seems like a dream now. We called the funeral home to arrange pick-up for Nicholas' body and spent every minute until their arrival with Nicholas. Most of that time was spent crying in total shock and disbelief that he had really died, and the rest of the time, we would blurt out anything and everything we wanted him to know about how much we loved him, how much we would miss him, and how amazing he made the last six years of our lives. 

When Nick from Straub's Funeral Home arrived, my heart felt heavier than it had in all my life. I knew my son, who had been by my side on a daily basis for over six years, now had to go. It was awful. It was absolutely devastating. At one point, I asked Jeff if they could come back in the morning, because I just wanted more time with him. Jeff explained that Nicholas was already gone, only his body remained, and that it was time to say goodbye. We dressed him in cozy clothes, chose his favorite pillow and blanket to accompany him, and a couple stuffed animals that he loved to keep him company. Jeff gently picked him up off his bed and carried him one final time to the gurney wheeled inside our entryway. He laid Nicholas on the gurney, positioned him comfortably with his blanket and pillow, and we both kissed our sweet boy goodbye, knowing that would be the last time we would ever see our child again. The funeral home director left the body bag unzipped so we could watch our son leave our home forever. 

We finished talking to the two trauma team members, then Jeff went to get Ella from Leslie's house. We wanted her to stay there until Nicholas' body had gone as we did not want her to remember her brother that way. Because she's only four years-old, we weren't sure if it would be traumatic for her to see Nicholas' lifeless body, and we didn't want that to be her final memory of him. Jeff brought her home, already sleeping, and laid her in bed. We tucked her in, kissed her goodnight, and spent the rest of the evening on the living room sofa crying and recounting the evening's events. Jeff felt guilty that he had not been home when I needed him, but I reassured him it was a blessing as I was glad Ella was with him and not here to witness me losing my mind and trying to bring our son back to life. I felt guilty that I had left Nicholas alone for a few minutes, and Jeff reassured me that I had nothing to worry about, that we had done that nearly every single night of Nicholas' life, and there was nothing I could have done to stop the inevitable. Thank God for my husband. Honestly, the second guessing, the "what ifs," the guilt of it all can really overwhelm a person, but my amazing husband held my hand, cried with me and brought me more peace and comfort in the hours after Nicholas' death than he ever had before. I would be completely lost without him and his unwavering love for our family. 

Now, in the three weeks that have passed since Nicholas' death, I am still in a state of shock that we no longer have our son here with us. I wake up each morning only to remember that he is gone, and sorrow fills my heart. Our house feels too quiet without the hum of machines, without Nicholas' soft snore, without his calling out to us to help him with everyday tasks. I know in time we will come to accept our son's much-too-short earthy life, I know the pain in our hearts will ease as the world continues to turn. I know that not many people will remember our son, for he did not do amazing worldly things with his life. But there is one thing I know for sure: His smile touched hearts. He did small things with great love. He made the world a better place simply because he was in it. He changed Jeff, Ella, and myself forever. We will never be the same people we were before Nicholas. We will love more deeply, we will smile more often, we will appreciate the simplicity of this life, and savor the memories we made with our son in the time we were given with him. I feel the absence of his love in the depths of my soul, and yet, I know with every fiber of my being that we will be forever watched over by our saint in heaven. Nicholas will not be far from us, no matter where life takes us, and I am profoundly grateful for that. 

I also feel such comfort looking back on the events of that day. I honestly believe Nicholas knew it was his time to go. I think he could see the angels waiting to carry him to heaven. A friend shared with me a passage about the strong scent of flowers whenever angels and Mother Mary are near, and the entire week leading up to Nicholas' death, I could smell fragrant flowers right outside our front door, but could not locate where the fragrance was coming from. Even my mom smelled them one afternoon a few days prior to Nicholas' passing as she was leaving our home and remarked to me that it smelled like Daphne, yet we have no Daphne growing in our yard at all. I also think he waited until he was completely alone to slip away into eternal life. Another friend shared with me that often those who are dying wait until their loved ones leave the room to exit this earthly life and move to the next as they feel tied to the people they love and don't want to follow the heavenly light when loved ones surround them. I also now realize that Nicholas' weak body had worn out. His Spinal Muscular Atrophy took a toll on his body and he had severe scoliosis which caused issues with the position of his heart and lungs. He also had contractures in his knees and fingers and I can only imagine the constant pain that accompanied those things. What we thought to be a minor cold was actually Nicholas' body no longer able to sustain the pain, pressure, and breath support necessary for him to live. Our wise son knew his time had arrived and he made sure that we had one last amazing day with him before he left. I do not think it was a coincidence he passed away on a Saturday as that was Jeff's day off. He wanted one more day with the man he adored more than anyone in this world. I now understand that he was so close to heaven while he was on earth that he was preparing us in his own way to say goodbye to him. He left us the gift of a day, his one final gift to us. His final act of pure, unconditional love. 

We love you more that you can ever know, my sweet son. You were the best thing that ever happened to us. Thank you for choosing us. Thank you for loving us. Thank you for sharing your holy, loving spirit with us. Godspeed, little man. Sweet dreams.