Nicholas' Funeral

The days after Nicholas' death and leading up to his funeral proved to be some of the most difficult days of my life. Some of the days seem to blur together and some moments seem so clear to me. The day after his death was a Sunday so all of our family came over to be with Jeff, Ella, and I in our time of grief. I remember standing in our bathroom that morning with tears in my eyes, not sure how I could face everyone, but at the same time knowing that being with them would be a great source of comfort for all of us. I didn't put even a tiny bit of make-up on that day as I figured it would all be cried off eventually anyway, and it's the first time in my life that the vain part of me could have cared less about what I looked like. I took a long look at myself in the mirror and thought, "You have become forever marked as a grieving mother. A mother who has lost a child. You never signed up for this, yet here you are anyway." I felt a mixture of emotions that flooded me all at once: loss, sorrow, heartache, guilt, emptiness. I felt apprehensive about trying to grieve with others as they grieved too, and I felt as if I wasn't sure I was going to be able to make it it through the day as my sorrow was almost too much to bear and I wasn't sure I could handle anyone else's sadness. 


I tried to muster up a brave face and walked into the living room where Jeff's family had gathered. His mom was there, his sister, Eva, and her husband, Chris, my niece, Zoie, and nephew, Alex, and Jeff's youngest sister, Jami,and her husband, Kris, were there as well. I hugged each one in turn and couldn't stop the wave of tears and sobs that shook my body with each and every embrace. It was therapy, in a way, comforting to cry and grieve with those we love so much. Jeff's Aunt Stacy and Uncle Johnny came by and my brother, Eric, and his wife, Tina, and my niece, Vivien, arrived later that afternoon as did my parents who drove back from their Walla Walla trip that morning. I vividly remember hugging my mom and holding on to her in a desperate kind of way, as if my mother could vanquish some of my pain and make everything better like she's done for me in many, many moments of my life. Alas, her grief was just as profound as mine and as we held each other and sobbed together I understood that the sorrow in Nicholas's death was not just my own, but shared by everyone who knew and loved him. My mother was a constant in his life. Nicholas lit up when she walked into the room. She never let his disability faze her, instead she did anything and everything possible to help bring him joy and show him love. Every second she spent with him was marked with beautiful memories between grandmother and grandson. As far as Nicholas was concerned, he thought she was the most beautiful, most wonderful, most loving woman he had ever met and he always felt a bit of sadness when their time together came to an end. She undertsood in a very profound way, my loss, for it was her loss as well. 

We spent that Sunday in shared grief and sadness. We recounted stories of the boy we all knew and loved so much. We often sat together in moments of silence reflecting quietly on our own feelings, trying to put together the puzzling future of a new life without the boy who warmed our hearts with his sweet smile and brought us all so much joy with his presence. Eventually, our house emptied and we were left with just the three of us. It marked the beginning of a new journey, a new life in which we had no road map, no compass to guide our way. We understood that absolutely nothing would ever be the same again, and that the overwhelming feeling of loss would become our new normal.

The next day was Monday and Jeff and I scheduled an appointment with Nick at Straub's Funeral Home to discuss the funeral arrangements for Nicholas. It was all so surreal. Because Nicholas had a terminal condition I had always thought about what it would be like when he passed away, but actually living it was harder than I could have ever imagined. That morning I asked Ella to help me to choose some of Nicholas' favorite items to place with him in his casket. We chose all the items pictured below: a large green truck he loved, his Olaf toy, his green stuffed froggie that he slept with every night, a rock he painted in VBS last summer, a red quad that he played with constantly when he was younger, his small Curious George which was a favorite of his for many years, a small wooden car, a small white teddy bear, some clothes that he had recently worn, his favorite book called Night, Night Prayer which we read often before bed, and his beloved frog ball that picked out at a toy store on his Make-A-Wish trip. He called frog ball his "best friend" and it went with him nearly every where he went. Ella picked out each and every item with loving care as she knew how special they were to her big brother.

Ella stayed with my mom and Jeff and I went to the funeral home. We wrote Nicholas' death notice for the local newspaper, chose his casket, and discussed the small touches that we wanted to have at the funeral and grave-side burial. We left his toys with the funeral director and it was so strange for me to sit there discussing Nicholas, knowing he was in the building, yet not being able to see him time one more time. I remember thinking that I did not take enough photographs of Nicholas, not enough videos. I remember feeling like it was an out-of-body experience that I was making decisions about our six-year-old's funeral. I felt as if I was floating above the situation, viewing it from a distance. When we were leaving the funeral home, I remember feeling proud of myself that I made it through the hour without crying and getting overly emotional, but I now think that was because I felt so removed from my body and the entire situation. The whole thing was somewhat of a blur for me and I whenever I was stumped on a decision that needed to be made, Jeff stepped up and made the decision for both of us. I was so grateful for that. After we finished at the funeral home, it was well beyond lunch time and we were starved, so Jeff and I went to a restaurant to eat. Then we went to the Men's Warehouse so Jeff could get a new dress shirt and tie for the service. I also found a dress for the funeral at Macy's. It was the first one I tried on and fit prefectly, and I immediately thanked Nicholas for leading me to it as I knew trying on a bunch of clothes wasn't something I really wanted to do that day. It felt so strange to Jeff and and I both...to be out and about on our own, in no rush to get back home. It was the first of many firsts for us, as whenever we were out together when Nicholas was living, there was always a time frame in which we needed to be back home for his respiratory treatment, a g-tube feeding, or his physical therapy. To not have a timeline, a window of time in which we had to be home, we were reminded of our profound loss and the sorrow that accompanies it. We made our way home that afternoon lost in our own thoughts of our son. 

The next few days are somewhat hazy for me. We spoke to family and friends on the phone and had lots of company come visit. My co-worker, Jamie, coordinated a meal plan for us that had families from church bringing us dinners three times a week. We got out of the house as much as possible: taking Ella to the park, dining out, and visiting friends. We made decisions regarding Nicholas' funeral service and were so happy to find out that Holy Redeemer's beloved former pastor, Father Mitchell, would be able to make the drive from the Seattle area to preside over Nicholas' funeral mass. 

That Saturday, my best friend of twenty-two years arrived from California with her family. Having the four of them here brought so much joy and comfort to all three of us. 

We filled our days with a zoo trip, drives up the river road, walks in the wooded area behind our neighborhood, park playtime, and long talks of all things Nicholas. During her children's nap time, Lyndsey and I sat on our patio and shared our stories of the boy we both adored, my son and her godson. We listened to sad songs that made us cry, shared happy memories of Nicholas as a baby, and grieved together in a way that only lifelong friends can.

  My brother, Brett, also made his way home from Florida and I was so happy to see him. He and Nicholas had such an amazingly sweet bond. Brett made Nicholas feel like the most special boy on Earth. Even though he lived so far away during Nicholas' short life, the two times a year he was in Washington to visit he spent nearly every day with us and our children, making every moment count. Nicholas talked about Brett often and loved his time with his uncle. He always asked when Brett would be back for a visit, even just a few short days after Brett had gone back to Orlando. Having Brett here brought comfort to my mom as well. She always tells us how hard it is on her to have one of her children living over three thousand of miles away, so having him home was therapy for her too.

Brett stayed for two weeks after Nicholas' funeral and it was so nice to have so much time with him. The day that he left, we had one last lunch together at McMinamins on the Columbia River outside in the sunshine. It was the perfect ending to our time with the son, brother, and uncle we all love so dearly. 

The Monday night before Nicholas' funeral, I felt such anxiety in the events to come. I know part of my anxiety stemmed from the fact that I had not finished (or even started) Nicholas' eulogy. I wasn't sure how to begin, I wasn't sure how to properly convey how much our son meant to us. I wasn't sure I could put my feelings into words that would translate into the loving, perfect person that Nicholas was. 

Lyndsey could sense my anxiousness, and she created space for me to sit down at the computer before dinner to write. She removed all distractions and I was alone with my thoughts. Just starting Nicholas' eulogy brought tears to my eyes, big fat tears that tumbled down my cheeks. I felt unworthy to write his memories, for even though I was his mother, he taught ME more about how to live that I ever could have taught him. He taught ME how to love better, he taught ME how to live in the moment and enjoy each experience, he taught ME how to find joy in the most difficult of life circumstances. How in world could I ever do this amazing child justice in just a few paragraphs to sum up his much-too-short life?

Eventually I began to write and the words flowed through me onto the keyboard. I know in those moments that Nicholas was with me, guiding my way, allowing me to say all the things I had wanted to say and more. Late that night, after we had set-up Nicholas' personal items in the reception space, Lyndsey sat down at the computer with me and helped me edit my writing. It was so nice to have a friend, who also happens to be a gifted writer, help me make small changes to my work, making it a perfect story of who Nicholas was and how he inspired every life he touched. I was so grateful for another set of eyes to read and adjust one word for another, grateful for honest feedback, and grateful for positive reinforcement of how beautiful it turned out to be. I have posted Nicholas' Eulogy in its entirety below: 

Nicholas Alan Gustafson's Eulogy

For as long as I can remember, I have always known that my vocation in life was to be a mother. When Nicholas was born on May 20, 2008, I finally felt that my life had become complete. The doctor laid Nicholas on my chest and I finally knew what true love felt like. I finally understood that phrase, “love at first sight” because I couldn’t peel my eyes away from the precious gift given to us by God. I fell head over heels in love with our son that day.

Nicholas was a beautiful, seemingly healthy baby, who rarely fussed, ate well, and slept through the night at seven-weeks-old. Jeff and I loved showing him off to our friends and family and starting planning an amazing life of wonder and excitement for our son. But around six-months-old, we began to notice Nicholas was not meeting the physical milestones of children his age, so we consulted his pediatrician and were referred to a specialist. At ten months old, after numerous tests, Nicholas was diagnosed with Spinal Muscular Atrophy. We were told at the time that there was no treatment and no cure for SMA and that most children do not live past the age of two. But doctors don't know everything and God had different plans for our son. 

We were devastated by his diagnosis but we decided that we were going to live our life without letting the fear of the future carry us. We made a conscious decision to give Nicholas every oppurtunity in however much time he would be given. So we started meeting with a team of amazing therapists, we connected with other parents of SMA children on social media networks and we learned that while his condition was rare and terminal, there was also a lot of hope. We let Nicholas guide us every step of the way.

Shortly after Nicholas’ diagnosis, another parent of a SMA child shared this with me, which I would like to share with all of you:

Question:

A friend gave birth to a baby with a rare condition that has rendered him severely handicapped. He is not expected to live much past his second birthday. I just can't understand why God does that. If life has a purpose, what is the purpose of such a short and sad life?

Answer:

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.

Some souls are so lofty; it simply isn't worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.

So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them "disabled" or "handicapped"; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission.

These special souls remind us that true love doesn't need a reason. We often love others for what they give us -- we love our children because they are cute, smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.

When a child is born that will never achieve worldly success, cannot provide the usual source of pride for his parents, all extraneous reasons to love him fall away and what's left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.

These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true, unconditional love really means.

Nicholas’ message to the world was simple: Love one another. Find joy in the simple things. Slow down and enjoy the simple moments in everyday. Smile through the toughest moments and know that there is a purpose and a meaning to your life, no matter how insignificant you may feel.

Nicholas suffered a great deal in his short life, and yet, in spite of all his physical limitations, in spite of all the hospital stays, he kept a smile on his face and radiated love through his soul. I liked to call him my little slice of heaven on earth because I bore witness to the infinite love he shared. 

And for me, personally, I was blessed each day to hear the words, “I love you mom.” But I didn’t even need to hear these words to know his love for me, for everyone he met, all he had to do was simply look at you with his beautiful brown eyes and you could feel the weight of his love in the depths of your heart. Tracking me from his little nest on the couch, lying beside me in bed, watching silently as his sister would play at his feet, greeting his daddy after a long day. This was us doing our everyday work and this was him loving us effortlessly.

In the last few years, we saw an increasingly silly side to our little boy. I remember one time when I commented on how funny I thought Nicholas was and he said to me, “I am not funny, Mom. I am cool.” From then on Jeff and I would always tell Nicholas what a cool kid he was. Nicholas would say, “Daddy, you’re the coolest.”  And Jeff would reply, “No, Nicholas, you’re the coolest.” The Nicholas would say, “We’re both cool.” He had a way of making you feel your best, even when he might have felt his worst. He was blind to his own limitations, and always had a way of making you feel like the best important person in the room. He was charming, charismatic, he wanted for little, and was humbly the most lovely little boy I will ever meet.

He was the sweetest with his younger sister. Nicholas called Ella “Babe” from the time she was born up until a few months ago. When I asked him why he stopped calling his sister “Babe” he simply looked at me and said, “Mom, she’s not a baby anymore.” Ella was a bright ray of sunshine in Nicholas’ life and he absolutely adored his younger sister and would do anything for her. If she wanted a toy he had, he gave it away without any hesitation; if she wanted to watch a different movie than he did, he would let her have her choice; if she was crying or upset he would call for me, “Mommy, Ella needs you!” to be sure she got the care she needed. He laughed with her, danced with her, played hide-and-seek-with her, played eye gaze games with her and thought she was the most special girl he knew. As a mother, to watch your children love each other so dearly, there is little else on this earth that can compare to the awe and wonder that comes from the smiles, love, and laughter between two beautiful gifts from above. It filled my heart with such joy to see our two children together; giggling, smiling, bringing comfort to one another during difficult times and bonding as only siblings can. Ella will forever be a better person because of her brother, as will all who knew him. We will always wonder if we ever did enough for him, but I can tell you one thing, the best thing we will ever have done for either of them is give them each other.

I read this at the reception, which followed a beautiful funeral mass. The mass was absolutely amazing and a wonderful tribute to the life Nicholas lived. We requested that all those in attendance wear some green, as it was Nicholas' favorite color and it was amazing to look around the very full church to see so many in their splashes of green. We had anticipated that there would be two priests to preside over Nicholas' funeral as we knew that the current parish priest, Father Nathe, would be there, and we had asked Holy Redeemer's founding priest, Father Mitchell, (my former boss and mentor) to preside as well. I was happily surprised to discover that a third priest, Father Thompson, would be presiding over the funeral as well. Father Thompson was ordained last fall and we had gotten to know him in the last few years at Holy Redeemer as his family worships there as well. When I saw Father Thompson the morning of the funeral in the sacristy I could not contain my tears, as I did not know he was going to be there and I was completely overwhelmed by the fact that THREE priests would be presiding over our son's service. It was a very special and very rare occasion for a lay person to have have so many priests preside over their funeral and significance of it was not lost on me. Nicholas touched the lives of everyone he met, priests included. During the funeral, I tried to take in all that was happening. I savored every note of every song, especially the Ave Maria sung beautifully by my dear friend, Katie DePew. I savored the homily given by Father Mitchell, which was one of the most beautiful testimonies of love and grace. Father gave me a copy of his beautiful words and has allowed me to share it here as well:

Father Mitchell's Funeral Mass Homily for Nicholas

“Let the children come to me; do not prevent them, for the kingdom of God belongs to such as these.”  In his typical bluntness St. Mark describes Jesus’ reaction to the error of His apostles in their dealing with the children who were like so many others attracted to Jesus and wanted to meet Him.  He described Jesus as “indignant.”  I think Jesus felt the apostles just weren’t getting it.

The Gospel is the source of the lesson about a certain childlike attitude that all of us should take in approaching Jesus and seeking to be in God's kingdom.  We should approach Him with a knowledge of our needs, our incompleteness and the willingness to trust and depend on Him to acquire what we can never acquire on our own.  And that is most notably the forgiveness of sins, the life of grace, and our adoption as children of God.

It is also one of the suggested Gospels to be read at an infant baptism.  And so nearly six years ago I read that very Gospel when, some of us who are gathered here today, also gathered in our first little mall church for Nicholas’ baptism.

The birth of a child is an occasion of great rejoicing, especially for parents.  Of course the planning, the hoping, the sketching of a future begins even before the child’s birth.  It was in the context of such joy and hope that Jeff and Jessica took that important step of letting their child, their first born child, come to Jesus in the sacrament of baptism wherein original sin was washed away and he was restored completely to innocence and adopted as God’s child.

In time, Jeff and Jessica learned that their parenting would be unique as Nicholas' muscular atrophy displayed itself and a diagnosis was eventually made.  Perhaps Nicholas knew even better than other children the power of the love and care of parents.  He, likewise, no doubt experienced a trust and confidence that helped him know from his earliest years what is really meant to be a dependent and trusting child of God.  I believe he therefore enjoyed a beautiful and pure awareness of the presence of God that most of us have long forgotten and yearn to enjoy again.  And from that came a special ability to love, and to accept love in return.  It was quite a team working that Nicholas would survive and thrive in spite of his muscular issues.  And it was quite a team, Jeff, Jessica and all those many family and friends who supported them.  Ella came along and joined the team.  Nicholas delighted in having a little sister and she did her best to bring joy to his life as well.

I can’t even imagine the work, the effort, that little Nicholas applied to his life.  It included too many serious threats to his life and too much time in hospitals.  But he had the same will to survive and always did his part.  I am amazed at the technology that was made available to Nicholas, especially the computer that could read his eye movements so that he could spell out words and play video games.  Once again what he did is a powerful testimony to the human spirit.

The life of Nicholas and the lives of so many others, especially children, who have physical impediments of one sort or another, is a lesson and challenge for us all.  I feel sorry for people who may have only glanced at Nicholas, lying prone in his stroller.  Perhaps they would have held back from stepping up to greet him because of a certain fear to realize physical challenges exist for some people.  Maybe they would look at him or his parents with a charitable pity.  But I feel sorry if they never had the chance to stand above, make eye contact, and give a simple hello.  I always like to raise my hand above him, to intensify the visual element.  Those who did look and say hello were treated to a great response.  Nicholas had these big eyes that were so open and bright, communicating gratitude, acceptance and love.

There is a great lesson and challenge for us, we who have all of our limbs working, at least to one degree or another.  Are the actions we do with our hands, with our feet, with our entire bodies – are they directed by a depth of soul that knows what it is like to trust and depend and nonetheless love? 

In the midst of the sadness of our farewell we take consolation in the message of the other scriptures provided for today’s Mass.  The first reading from the prophet Isaiah describes the fullness of union with Jesus in heaven.  We must wait and long and prepare so that we can be assured of joining Nicholas in that place where anything he didn’t understand would be made clear.  It is the place where the web of his atrophy will no longer restrict his movement.  He has moved beyond tears, even if we haven’t.

St. Paul in our second reading reminded us, almost in a chiding way: “Are you unaware that we who were baptized into Christ Jesus were baptized into his death?”  Well, yes Lord, but we could have waited longer for the fullness of the promise of resurrection to sweep Nicholas up and away from us.

They say the eyes are the window to the soul.  From what I experienced in Nicholas’ eyes his soul was deep and full and loving.

This homily was written with such love and we will treasure it always. Father Mitchell truly loved Nicholas and always asked me about his health and well-being every single time he saw me at work. He came to the hospital on several occasions when Nicholas was very ill and offered players and blessings for our son and support for Jeff and myself. Every time Father Mitchell saw Nicholas around church, he would make a point to come over to Nicholas and say hello. He made Nicholas feel very special, as is his way with all people he encounters. Nicholas would ask about him when we were driving to and from church and was always delighted to have a conversation with Father. If you're reading this, Father Mitchell, please know that we remember you fondly, not only because you were such a wonderful parish priest, but because you genuinely cared about our son and made him feel like the most special boy on the planet. We keep you in our prayers and will never forget the love and kindness you've shown to us. God bless you. 

 I treasured the words of every song, the scriptures read by my friend, Jamie Kohler, and the special parts of the service: the blessing of Nicholas' casket with holy water, the procession of family and friends at the beginning of mass, and the pall bearers lifting Nicholas' casket into the hearse. That moment, in particular, struck my heart and moved me to sobbing tears. To see the men in Nicholas' life (his dad, his four uncles, and Jeff's lifelong friend) lift our son, carry him on their shoulders overwhelmed in a such a profound way. Nicholas, who could never walk on his own, was lifted one last time by wonderful men who adored him. 

After the funeral mass we had a reception in the parish center. Maria Johnson, the head of the funeral committee at Holy Redeemer, decorated the space beautifully and had a wonderful luncheon for all the five hundred funeral attendees complete with sandwiches, salads, fruit, veggies, and punch. She also included dum-dum lollipops wrapped in green ribbon as a special gesture to Nicholas. Nicholas could not eat by mouth anymore (he lost the ability to do so at age 2.5) but he loved to taste lollipops and dum-dums were just the right size for him. During the reception, Jeff and I were greeted with hugs and kind words by all of the friends and family who attended. We were happy to see so many people that we've known and loved over the years in attendance. Even people who never met Nicholas, who only got to know him through our blog or Facebook posts, but who were touched by him, came to offer condolences to us that day. Toward the end of the reception, I read my eulogy and then we asked people to come to the microphone and share stories and memories of Nicholas. We were touched by all those that were brave enough to share their feelings in front of hundreds of people, who told us of their love for Nicholas and for our family. All of the speakers moved us to tears and Jeff and I are so grateful to have so many amazing people in our life. The reception seemed to pass much too quickly, but we had to be at the grave site before 2:00 p.m. so we said our final goodbyes and made our way to Nicholas' final resting place. 

Being at the cemetery was the most difficult part of the day for me, personally. After everyone had arrived and gathered together, Father Nathe said the final blessing and prayers for burial. I sat next to Ella and my maternal grandmother, with Jeff on Ella's other side. Behind us stood my parents and my brothers. The rest of our family and friends stood surrounding us on all sides and that was very difficult for me...to see the sadness on the faces of those we love, who loved Nicholas too. My sister-in-law, Jami, purchased long stemmed white roses for us to toss into Nicholas' grave along with the paper airplanes the children made for Nicholas' #wingsforNicholas (awareness for SMA). After we watched the cemetery undertakers lower the vault into the ground, everyone there got to give Nicholas a rose and fly an airplane to him and say their final goodbyes. It was beautiful and so moving to look at all those gathered at the grave site (which was a much, much smaller number than attended the funeral) and see their deep connection to us and to Nicholas. As a last tribute, we all wrote balloon messages to a boy we all loved, and released the balloons into the sky with our messages of love and hope, knowing they will reach our son in heaven. 

A friend captured this stunning photo and sent it to me. I will treasure it always. 

After we released the balloons, we invited everyone across the street to my parents' house for food and fellowship. Before we left, we placed one of Nicholas' floral arrangements on my grandfather's grave who is buried there as well, and another floral arrangement was placed on the grave of my best friend's sister, who passed away as a child. Jeff, Ella, and I drove home and quickly changed our clothes and then made our way to my parents' house to visit with all the guests who were there. It was there that I started to feel a sense of peace and comfort, knowing that our son was no longer with us but basking in the ultimate glory and splendor that is heaven. The anxiety and worries about the day had melted away at the funeral mass and ceased to exist at all by this time. We got a chance to finally eat something and spent time talking to family and friends, old and new, who offered solace and compassion on the most difficult day we've ever endured. 

As the day wore on and dusk began to fall, everyone started to say their goodbyes and make their way home. Only my family and good friend, Leslie, remained and we discussed the beauty and love and grace of the events of the day. Finally, we made our way home and were able to spend one last evening with the Yeomans family before they made their way back to California the next morning.

We tucked all three children into bed and then Keith, Lyndsey, Jeff, and myself sat outside on our patio and shared memories of the funeral, memories of Nicholas, and few glasses of wine. It's so amazing to have such a wonderful lifelong friendship with Lyndsey, and even more amazing that our husbands have a friendship as well. Sharing the late evening hours talking and reminiscing with Keith and Lyndsey was a perfect ending to a beautiful day for our son. 

Everything that took place that day seemed to come together in perfect unison and we are so grateful to all those to helped make the day very special for us to honor a boy gone much too soon. Thank you for loving us, thank you for holding our hands and hearts on that day and lifting our spirits so we could smile instead of cry, thank you for the small gestures you all provided to help remember our son. Thank you, thank you, thank you for simply being with us on a day that no parent ever wants to endure. We love you all more than words can ever convey. 

Sleep with the angels in heavenly peace, sweet Nicholas. You may have only lived six short years, but your spirit of love and peace will live on for all eternity. You taught us how to love deeper, smile brighter, and show kindness to everyone we meet. You were wise beyond your years and your earthly mission has been fulfilled. You will remain the most special child we've ever known and we're so grateful you chose us. Thank you for choosing us to be your parents. Thank you for gracing our lives with yours. We're heartbroken to let you go, but we know you will be with us always: celebrating our triumphs, sharing in our sorrow, and sending your heavenly light and grace to us. We love you, son. Six years will never be long enough, but we will carry you with us always. 

Everywhere I'm looking now, I'm surrounded by your embrace. Baby, I can see your halo, you know you're my saving grace. 

A Weekend with Vivi & Moco

A couple of weekends ago we had the pleasure of watching my niece and her doggie while my brother, Eric, and sister-in-law, Tina, enjoyed a few days in Las Vegas. Tina works for AT&T and because she's such an amazing asset to the company, she and a few of her co-workers won a trip to Nevada with lots of fun perks. 

Meanwhile, we truly enjoyed having both Vivien and Moco at our house while they were away. Since Nicholas' death our home has felt too quiet and very empty. Filling it with a toddler and a dog was just what we needed for a few days to bring some healing to our broken hearts. Having them here made Jeff and I realize that we want to grow our family, which means that we hope to add more children in the near future and possibly a pet as well. We really want Ella to experience being a big sister and all that comes with it, because there is truly nothing like having siblings to share your life with. For now, lots of time with her cousin will have to do. 

We filled the weekend with lots of fun: lots of time with Gramme, a Costco shopping trip with yummy food samples, park time, and walks around the neighborhood. We're so grateful to have family close by as we have relied on loved ones for so much strength and healing these past two months. 

Easter 2015

Easter was bittersweet for us. While the joy of the holiday is the understanding of Jesus' great love for us in His resurrection and His promise of eternal life, there is also sadness because we remain here on Earth without our son (and brother), whom we love so much. Obviously there is the trust and wonderment and knowledge that Nicholas now resides in Heaven, and we are forever grateful for Jesus' sacrifice on the cross which opened the gates of Heaven for everyone. But on Easter Sunday, I felt a mixture of such overwhelming sadness shaded by abundant peace. 

Ella made this adorable bunny mask at preschool

 On the morning of the day before Easter, our friend, Leslie, had a wonderful idea to have an egg hunt in the wooded area behind our neighborhood. All of the moms (and one dad) gathered at the park entrance at 9:00 a.m. and brought plastic eggs filled with candy and small treasures to hide. When we were finished we went home to retrieve our children and let them hunt. The kids all had a super fun time hunting high and low for the hidden eggs and each child found plenty to take home.

Later that afternoon, Ella and I dyed a half dozen white chicken eggs and then used boiling water to place these pretty shrink-wrap papers on the outside. We both loved how they turned out!

On Saturday evening, I worked at the Easter Vigil Mass, as I have done for the past six years, to assist the priest with the sacraments of baptism, Eucharist, and confirmation for the children and adults who have made the decision to become Catholic. This year was my last year working at that mass, and while I felt a twinge of sadness that I will not have the same role in years to come, I also feel very grateful that from now on I will get to worship on such a holy day with my family. You see, the Easter Vigil mass does not begin until 8:30 p.m. as it starts one hour after sunset and it lasts over two hours, so my children and husband never attend as the kids go to bed fairly early. From now on we will be able to attend Easter Sunday mass as a family and I am very pleased about that. 

Sunday morning Ella found her basket left by the "Rabbit" and opened her goodies. Later in the morning we went to my parents' home for brunch for some family time and another egg hunt. 

 My mom always creates such a lovely table scape for our dining pleasure. 

Vivien and Ella enjoyed hunting for eggs that their dads hid all over Hargrave acres. We were lucky that the rain held off until much later in the afternoon so the girls didn't get wet while hunting. 

 We posed for a family photo after the girls found all the hidden eggs, as we always do on Easter, and I realized that it was the first one in several years with only three of us. We are smiling on the outside, but our hearts were aching for one more photo with Nicholas. One more holiday with him. One more egg hunt. He loved to find eggs on Easter with his dad. Jeff would hide some especially for him that were at just the right view point from his stroller. Last year, Ella too, spent much of her time helping Nicholas find eggs and making sure he had as many as she did. 

 After the hunt, we went inside and got comfy. The girls opened their pajama gift and bunny ear headband from Gramme and Grandpa, they opened all their plastic eggs to see what was inside, and we cuddled up to watch some children's movies while the rain started to fall. We stayed until dinner time then ate together again. The whole day I felt like I was holding back tears that were just near the surface. When we tucked Ella into bed that night and said our special prayers for Nicholas, the tears were finally released. I could barely talk as I thanked Jesus for his gift of Heaven, and told my son how much I loved and missed him. Jeff and I spent the remainder of the evening talking about past Easters and how much Nicholas enjoyed them. 

 I knew this first holiday without our son would be difficult, but I think I underestimated the severity of difficultly that it actually was. In the past, Easter always meant a new beginning for us. It was usually the mark of the end of cold/flu season which meant that we would come out of hibernation and begin to resume life in the world beyond our front door. We would start to look forward to summer vacation, back yard BBQs, and longer days to fit in more fun. We would start to look forward to less doctor visits, less respiratory treatments, less precautionary regimens. For us, Easter used to mark not only Jesus' resurrection, but a resurrection of sorts for us as well. Obviously this year was not the same as we felt less of the hope of months to come and more sorrow that in months to come we still will be unable to see our son. I know that most holidays will be like this, even as years pass, what were once joyful occasions and cause for celebration will also be shadowed with loss, with the very real loss of a child who can never be replaced. I think it will be helpful for all of us to create and establish new holiday traditions that include things we loved about Nicholas, so his memory will never be forgotten. 

Happy Easter, sweet boy, I can only imagine the amazing celebration you got to experience in Heaven with all the saints and angels. We love you so. Today and always. 

Finding Our New Normal

{I am drafting a blog post about the days leading up to Nicholas' funeral and his funeral itself, but because I am so behind on blogging, this post will come first.} 

Every morning I wake up with my son on my mind. Every morning I am in disbelief that he's no longer here. Our days seem much, much longer than they ever have before. There's no need for twice daily respiratory treatments, no need for physical therapy, no need for daily water therapy in the form of baths. Ella, at age four, can do most of her own care so I am left feeling somewhat displaced. I am still a mommy, but I am now a mommy who isn't readily needed for daily care tasks and, honestly, I miss being needed. I was so needed by our son every day of his life for over six years so I often find myself looking for things to occupy my time. 

Our hearts are beginning to heal, but our minds are often flooded with memories and emotions of Nicholas. Just walking by his bedroom can bring me to tears. Last weekend I started packing up all of his medical equipment to give to two local families who have little girls with SMA. I placed all the items in our garage and Nicholas' room has never felt more empty. I realized how much space all those machines took in his room and while giving them to children who need them is comforting, there's also that loss of that piece of Nicholas, those items that went with him where ever he went.

When Nicholas was alive, we spent the majority of our time at home. Nicholas preferred being home and it was precautionary during the winter months as a means to avoid exposure cold and flu germs, as Nicholas was susceptible to illness. Ella, on the other hand, is our social butterfly and much prefers being on-the-go so we've been trying to keep busy as much as possible. It's been healing for all three of us to re-establish friendships, get outdoors, coordinate play dates, and discover new things to do in the Pacific Northwest.

 We've visited my grandmother a few times in her assisted living home. She has Dementia/Alzheimer's now, which is heartbreaking in that she doesn't really recognize any of us. But Ella's youth brings her so much joy and her face always lights up when she sees my dad. Last time my dad visited her with us, Grandma said, "I know you, you're my husband." My mom explained that he was actually her son and I had to turn away as my eyes filled with tears. My dad looks so much like his father, and my heart ached for my grandmother who has lived the last 26 years without the husband she adored. She also has outlived two of her five children, and as a mother who has lost a son, I cannot begin to imagine the grief in the loss of two children. Parents aren't meant to bury their children, it's just not the correct order of things. When we visit we talk a lot about the years when her children were young: when they had a dairy farm with cattle, a huge garden with everything from corn to tomatoes growing, and hundreds of acres of land to explore. She is lucid during these walks down memory lane and I see her face light up when she can share a particularly happy memory with us. I makes me realize that this time in my life is to be cherished, as truly, we are in the prime of our life and even though the raising of young children can present challenges and hurdles to overcome, these next few years will pass all too quickly and before we know it, our daughter will be grown and out in the world on her own. 

 Just a couple of weeks after Nicholas' funeral, I made the decision to leave my job at Holy Redeemer after nearly seven years. With a priest transition last July, the work load became overwhelming and I was working practically full-time hours in my part-time job of 22 hours a week. I had been contemplating leaving since last September, but knew that my income helped pay for the several hundred dollars worth of medical bills for Nicholas every month, as well as various other necessities for our family. While leaving seemed like the right thing to do, I couldn't justify it with our family needs as we relied on my source of income. So I stayed even though I knew that my job was no longer a good fit for me and our family. I was in the office more than ever before as the new priest does not understand what the previous priest did. The previous priest valued and supported my vocation as a mother, first and foremost. He knew that I was not just a mom, but a mom to a special needs child, and he understood that the vocation of motherhood should (and would) come first in my life. I cannot thank Father Mitchell enough for valuing my role as a mother and also understanding that my income was there to support Nicholas. He remains one of the most compassionate, most loving, most humble men I have ever met and I am forever grateful for my time walking in my journey of faith with Father Mitchell at the helm. I needed to be at Holy Redeemer these past several years. I needed to be there when Nicholas was dignosed. I needed to be there as we were navigating our life with a disabled, terminally ill child. I needed to be there while Nicholas was alive to be his mom, first and foremost, to support his needs. I now understand that my job served it's purpose when it was most needed as I relied heavily on my faith to get me through many years of very trying times. 

The way the end of my job came about couldn't have been more perfect. I know, with a doubt, that leaving is part of God's plan for me and our family. Nicholas died on February 28th. A week after he died, one evening Jeff told me that he thought it was time for me to quit my job. After all, I had been complaining to him for several months about how unhappy I was. I wholeheartedly agreed and decided that I would finish out the last couple of months and wrap up my sacramental programs. I had planned to tell my supervisor that I would be leaving in May. On March 17th (just one week exactly after Nicholas funeral, and five days after making this decision with Jeff) I was called in for a meeting. I was told that there was to be some restructuring and that my position would be drastically changing and it would no longer be a part-time job, but a full-time one. I could apply for it if I wanted, but it wasn't offered to me outright. I had absolutely no desire to apply for a full-time position that includes 10% travel which would require a lot of time away from my family. Apparently, this restructuring had been in discussion for months and the staff (to remain) were planning to tell myself and the other four staff members (whose jobs were also changing) the week before Nicholas died, but for whatever reason, they decided to postpone telling us until the first week of March. Then our son died, so it was further postponed until after his funeral. I realized then that God is amazingly wonderful. He knew I was struggling. He knew I was unhappy. He has plans for me. He knows what's in my heart. He knows what I need before I do. I do not think it's a coincidence that Nicholas passed away when he did. God's timing is perfect. Had I found out about the staffing changes when Nicholas was living, I know I would have been stressed, worried, and unsure about how I could properly provide for our family's financial needs. With Nicholas no longer here, I knew that God was telling me that it is time to go and to not feel anxious about it. That all those things I had been feeling: all the discomfort in piling up of job duties, all the awkward exchanges with the new priest and his foreign ideas of how to execute my sacramental programs, all the overwhelming feelings that I no longer felt comfortable or happy in my role as Pastoral Assistant for Sacraments would soon become a distant memory. I felt like jumping for joy! I felt like I always do when change presents itself: that God has a plan for me and though I don't always understand what it may be, He can bring grace and peace like no one else can. 

So I will be employed at Holy Redeemer until June 12th and then I will get to explore new job opportunities. I am excited to see what the future holds for the three of us. I am considering classroom teaching again and I am also considering going to nursing school. Nicholas inspired me to care for others, so I have been looking into accelerated nursing programs and praying about whether that's the right path for me and for our family. In the meantime, teaching preschool part-time seems like it may be a good possibility and I may decide to enroll in nursing school while I teach.

These twins are Jessica and Madison. They're amazing young women. They were in my youth confirmation program this year and have grown so much in their faith these past several months. They are both so amazing and I feel so blessed to know them and so blessed that they were a part of my last confirmation class at Holy Redeemer. I have no doubt that they will go far in life and give glory to God in all that they do. I do feel a bit of sadness to not be able to meet more young people like these girls through teaching sacramental programs, but will remain forever grateful for all the young people whose lives have intersected with mine in the past six years that have inspired me to be a better person and to live a life with my eyes fixed on Heaven. 

This amazing friend. Oh, where do I begin? I don't think I could have made it these past five weeks without her. She's been a constant bright star in my darkest days. Lyndsey and I have a friendship that spans twenty-two years and she's seen me through the toughest, most difficult days of my life. The death of our son is, by far, the most awful thing I have ever lived through and because of the love and support and constant contact of my amazing friend, I have been able to grieve in way I need to grieve with a friend who holds my hand every step of the way. I honestly don't know what I would do without her. I say that all the time, but it's really true. Good friends are hard to come by. Even with the miles of distance between her home and mine, I feel her closeness, her love, her unwavering positivity when it's most needed. Thank you, Lyndsey. You will never know how much you mean to me. I am forever grateful that our maiden names caused us to sit alphabetically all those years ago in seventh grade Phys Ed. Our friendship was forged in those gymnasium walls and has never faltered in all the years since. I love you. 

A few days ago, Ella and I spent Jeff's lunch hour with him at work and Ella was thrilled to see where her daddy works and to get to ride in several pieces of construction equipment. We brought pizza for all the supervisors and enjoyed our time with Jeff in the place where he spends the majority of his week. We are so blessed to have a man who works so hard for his girls. 

We have eaten out more than ever before. Typically we would order take-out for our family, but most of the time Jeff or I would cook. Now if we find ourselves out at a meal time, we sometimes make the choice to dine at a restaurant, as eating out wasn't always conducive to Nicholas' needs when he was living. A few weeks ago, Jeff and I were eating lunch together and he ordered this amazing Bloody Mary that was more like a meal than a drink.

After the three of us ate dinner at a local restaurant a few weeks back, we were getting in the suburban and I was overcome with emotion. It felt too easy. We were rushing to get inside the SUV as it was pouring rain. When Nicholas was alive we would have figured out a quick plan to get him inside the vehicle before he was soaking wet and we would have planned out how keep his medical equipment from getting water logged as well. Instead, on this night, Ella climbed in, buckled herself into her seat, and Jeff and I did the same. It was too easy. I felt the sense of loss at the simplicity of what our life as become. Not that it was harder with Nicholas around, it was just our normal. Jeff and I were a parenting team and we would figure out how to work together to help our children, especially Nicholas with everyday tasks. We were driving the short distance to our home and I just burst out crying. My throat felt tight and my heart was aching for our old normal. My heart was aching to load and buckle our boy into the middle seat, to lift his Easy S stroller into the back, to situate his medical equipment on the floor next to him so it was accessible in case of an emergency. I was left feeling the heavy absence of our son's presence in a mundane task of getting into the car after dining out. I was crying and Jeff looked at me and immediately understood what I was feeling. With his voice shaking, he said, "It's just too easy now." I shook my head in agreement as we pulled into our driveway. 

Ella has been enjoying more park time than ever before. I always felt kind of sad for Nicholas to go to the park with his sister and only get to watch her run, jump, and play. He often just opted to stay home with me and my mom would take Ella to local parks in our area for play time. Nicholas and I would get some good bonding time in, and Ella could swing, slide, and climb to her heart's content. Now I get to watch her joy and excitement more often and it brings me such joy as well. 

 A couple weekends back, we attended this sweet baby girl's birthday party. Rya turned one and had her party at JJ Jump. Ella loved running and jumping in all the bounce houses with the other children. In fact, we had a hard time getting her to leave!

We've been so lucky these past couple of months with several families who have been bringing us meals. We get three meals a week and it's honestly been such a blessing to not have to think about grocery shopping or what to cook for dinner. We've had some of the best meals imaginable and lots of treats as well. Thank you so much to all the families who have provided delicious meals for us! We are forever grateful for your kindness and generosity. It may seem like a simple, insignificant gesture to some, but truly, it's a wonderful gift to the three of us. 

Jeff had been growing his beard since last November and it was getting pretty long. He joked with me that he planned to grow it as long as the men in Duck Dynasty. Imagine my surprise when I received the photo below via text message the evening that I was at work preparing for the Easter Vigil Mass. He had shaved his beard and I was so happy to see his adorable face once again. 

One afternoon a few weeks ago, we had a play date with two of Ella's preschool classmates. We had lunch together at Burgerville, then spent a couple of hours at a local park. Dash's mom, Nikki, and I enjoyed sitting in the sunshine soaking up vitamin D while the three kids enjoyed playing together. I am so grateful for Ella's school friends and even more grateful for their moms. It's amazing to have her in a preschool where I already knew most of the parents from high school or youth sports. It's such a wonderful, supportive team of parents who share carpool responsibilities, offer a helping hand as needed, and who support one another in the joys of parenting. I couldn't ask for a better environment for our daughter. 

 A couple of weeks after Nicholas' funeral, Ella was diagnosed with pneumonia. I took her to her pediatrician after her constant coughing and a fever that spiked to 104.3 degrees. Her lungs were junky so her pediatrician prescribed an antibiotic and after two rounds of that, she finally got rid of her symptoms. She spent almost a whole week lying around watching movies, drinking juice, and falling asleep as needed. I have to say that it was a respite for both of us. I slept when Ella slept, and enjoying snuggling with my girl. We took some time out from what has become a very busy life, and it was much needed for both of us, Ella especially. 

 The staff at my work recently surprised me with this amazing concrete bench created by all of them. They surprised me after the Easter Vigil mass and I honestly thought we were going into the furnace room of the church to debrief about how that night's mass went. Instead I was happily surprised with such an amazing memorial for Nicholas. We plan to place it next to the Dogwood tree given to us by my grandmother in remembrance of our sweet son. The bench will provide a place to rest in the shade of the growing tree. We are so grateful for the kindness and love shown to us by all those we hold dear. 

As we navigate our new normal, nothing is the same. In everything we do, we remember Nicholas. He is a constant in our days, even though we can no longer be with him physically. We think about him most of the day and include him in our prayers every night. We know his spirit of love and peace remains with us and carries us in our most difficult moments. Life will never be the same, but it is starting to become more bearable. I am staring to focus less on our loss and more on the wonderful memories we made with our son. The memories are treasures we will have forever, that can never be taken away, and they bring us true comfort like nothing else can. 

We are grieving, but we are also healing. We will never be the same people we were before Nicholas came into our life, and I am okay with that. We are finding a new normal, a new way of being in this world without the boy we all loved so much, holding him in our hearts as we navigate this new path. 

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.