Thursday, May 21, 2015

Nicholas' First Birthday in Heaven

Yesterday our son would have celebrated his seventh birthday. These first two photos are from his last birthday, his sixth. We had no idea that his sixth birthday would be the last we would celebrate with him here on Earth. He was so joyful on his sixth birthday. He really loved singing "Happy Birthday", blowing out his candles and making a wish, the gifts, his room filled with balloons, and the fun day day with his adoring family. 

Yesterday morning was extremely difficult for me. I had a hard time even wanting to get out of bed. When I did finally motivate myself to start the day, the tears would not stop flowing. It was the first day since Nicholas died that I felt overwhelmingly angry. 
Angry that our son is no longer here. 
Angry that I will never see him turn seven, eight, or nine years old. 
Angry that I will never witness him driving a car, graduating from high school, or getting married. 
Angry that he was born with Spinal Muscular Atrophy. 
Angry that I have to forever live in the absence of his pure, unconditional love. 

I sobbed tears of anger, of frustration, of despair. I know it's selfish to want my son back, as his body was at its limit, ravaged and atrophied. But I was angry that we had a child who had to suffer at all. A child whose days were numbered from the day he was born. It all seems so cruel, so heartbreaking. All I have ever wanted in my life is to be a mother, more than anything else, so to be robbed of the very child who gave me that gift, is the worst kind of pain imaginable. 

I just miss Nicholas. I just want to hug and kiss him one more time. I just want to tell him I love him and hear him say it back to me. I spoke to my mom that morning and my best friend as well. Both gave me words of wisdom and comfort as I tried to understand why this had become my life, and why my son was taken away too soon. As I finished my conversation with Lyndsey, it ended with a very funny story, which was the best medicine for my broken heart. I cried a bit more, said a few prayers, and finally felt like it was time to start the day.  




We were blessed in the days leading up to Nicholas' first Heavenly birthday to have friends who thoughtfully held us in their hearts and let us know they were doing so with cards, gifts, and photos. As Nicholas' birthday approached, I could feel my body filling with anxiety and fear and just to know that we are loved, that Nicholas' birthday was to be remembered, brought me so much comfort and peace.




Jeff came home early yesterday afternoon, so the first stop we made was Nicholas' grave site. We left some pinwheels and one small birthday balloon and were delighted to see that someone else had left flowers and two other small balloons. We also brought some bright blue and one red "Happy birthday" balloon to release. We said a prayer and asked Nicholas to watch over us and send us his love. We let the balloons fly into the sky carrying all our love from Earth to Heaven. 





After the balloon release, we went to Big Al's Bowling Alley. Before Nicholas died, he wanted a bowling party and we had planned to throw him one with all his family and friends. Instead, the three of us bowled for him, in his honor. 




When we got our shoes, the attendant gave Ella a green bowling ball, which made me smile, knowing that it was a small sign from Nicholas, letting us know he was watching over us and happy that we were celebrating the day of his birth. 






We all had such a fun time and bowled two rounds before Ella was begging to play some of the arcade games. We enjoyed playing some fun games together and Ella earned enough tickets to pick out some candy and jewelry. 


 When we got home, Ella asked Jeff to take the training wheels off her bicycle. She had been asking him to take them off for some time, and Jeff finally did. Lo and behold, she hopped on, started to pedal, and was biking like a pro! We were both so impressed that she just took off on her own with no help needed. She told us it was her birthday gift to Nicholas, which absolutely melted my heart. 









  That evening, after dinner, our good friends stopped by with flowers, cards, and cupcakes for all to celebrate our boy. I was so touched by their kindness and love. We sang "Happy birthday" to Nicholas and the kids each blew out a candle in memorial of him. 




Harrison, one of the sweetest and most sensitive souls I have ever met, wrote this beautiful poem for his friend who he misses so much. 


After everyone left to put their kids to bed, I put the flowers in water and lit a candle for our son. What started as a very sad day, ended with beauty. I miss our son and I always will. As time goes by my mind will learn to live without Nicholas, but my heart will never forget his amazing spirit of love and light. 


 Nicholas, we hope your first birthday in Heaven was better than anything we could possibly imagine here on Earth. We hope you are running, jumping, laughing and playing like your Earthly body would never allow. I hope you can feel our love that was carried up to you on your birthday balloons. You were such an amazing child who filled our lives with love and you gave us a reason to never give up. You continue to inspire us and fill us with your Heavenly grace. We were lucky to have nearly seven years with you, although it will never feel like enough. You're so special to us and we will carry you in our hearts forever. Happy birthday, sweetheart. 


A Weekend in Hood River





















Last weekend Jeff & I had our first overnight stay (sans kids) in six years. Some of our friends gave us a gift certificate for the Columbia Gorge Hotel after Nicholas passed away, so we scheduled some time away during the only weekend in May we had free. My in laws joined us and we enjoyed a weekend full of shopping, brewery hopping, and yummy food. The weather was gorgeous and Hood River is such a perfect town to explore. The hotel we stayed in was built in the 1920's and has so much character. It was truly a wonderful weekend getaway. 

Ella's First Haircut






Two weeks ago Ella had her first haircut, just a trim really, but because the back had grown SO much longer than the front, it needed a little evening out. I took her to my hairdresser and she was mesmerized by the snipping of the scissors and felt so grown up sitting in the big, fancy chair. After her trim, we went out to lunch together to celebrate and she loved showing off her sassy new 'do. 

Mother's Day, Minus One






This year's Mother's Day was the first one in almost seven years where I was only able to celebrate with one child. I was emotional all day and really missed Nicholas. We started the day off with mass and I was crying through the whole thing. I just couldn't keep myself composed. Every song, every prayer, the homily about love, really everything moved me to tears and I truly needed to cry. For the past couple of months I have been pushing down my emotions, my sadness, and it honestly felt good to let some of it go. By the time we arrived at the restaurant to eat brunch with my family, I felt better. We dined with my mom and my sister-in-law and I was spoiled with some herbs and flowers for our yard. After brunch we took the girls to pay at the park and they had a great time. Later in the day we went to Jeff's sister's home for dinner with his mom. All in all, it was a good day, a day to celebrate moms everywhere, but one that held sadness for me. To not get to see my son's smile, to not feel his love on that day, was very difficult. After all, he made me a mom. Before Nicholas was born I was just another woman, a wife, a daughter, a friend. I only earned the title "Mom" because of him. 


Tuesday, May 19, 2015

My 35th Birthday








I turned thirty-five on May 4th which seems impossible since I feel like my teenage years weren't too long ago. We had a low-key celebration at Skamania Lodge celebrating both my and my sister-in-law, Tina's birthdays because our birthdays are only a couple of days apart, with hers falling on April 30th. We enjoyed a delicious meal and my husband surprised me with some adorable Nikes so I can start running again. When you turn thirty-five, exercise becomes less of a "whenever I feel like it" activity into a "necessary if I want ever eat again AND to fit into my existing wardrobe." The dinner celebration started the day before my actual birthday, so on my day I enjoyed lunch out, some shopping, and a pedicure with my mini...all the fixings for a fabulous day.

As with any special occasion, I miss Nicholas profoundly and think about him more than ever. On my birthday I spent much of the day reminiscing about the birthday when I turned twenty-eight, seven years ago. I was very pregnant with Nicholas, as he was born just sixteen days later, and I my belly was swollen and huge, my feet very sore, and my heart ready to meet our son. I think it was on that day that I truly became a mom, as I recall not really concerned with my special day, but felt more anxious to get through the next couple of weeks and finally meet our child. I was already mentally putting our son first and putting myself on the back burner, like so many moms do everyday without realizing it. I only got to celebrate five birthdays with my son, but they remain the most treasured birthdays in my heart. I can almost hear Nicholas say, "Happy birthday, Mom. I love you." 

Thursday, April 30, 2015

A Vision of Heaven



The night after the evening that Nicholas died was excruciating for me. It was a Sunday, the first day of March and we had spent the day with family grieving the loss of our son. After everyone had departed I was left feeling very alone and very empty. It was brutal. My heart was aching and I could barely breathe, the sadness was almost too much to bear. I lay awake in our bed that night wondering how I would ever fall asleep, for the tears would not stop flowing and the sobs were shaking my entire body. I felt as if a huge weight was sitting on my chest and I had a splitting headache from crying all day.

Eventually I began to pray. I prayed in a desperate kind of way, asking God to take away my sadness, if only for just a few short hours so that I could get some sleep. I asked Him to grant me peace and to ease my pain. I asked for comfort for myself and my husband and daughter, that we might have the strength to get through the next few weeks and months without Nicholas. I prayed to Mary, Queen of Heaven and Earth, that as a mother she may ease some of my pain and suffering. I united myself to her in her suffering as a mother who watched her son die. I thanked her for saying "yes" to God and allowing her son, our Lord and Savior, Jesus Christ, to be born into the world so that we all may live with Him in splendor for all eternity. I asked her to watch over my son, for she was his mother now, since I could no longer be. I prayed and prayed and prayed for quite a long time. My heart started to realize that the only way I could find peace and be able to sleep was to know for certain my son was okay. I needed to know that he was happy and safe. My prayers turned into a desperate plea for a vision of Nicholas, a vision of him in Heaven. My body was curled in the fetal position, my hands grasped together, and a stream of tears were flowing from my eyes. My body was convulsing in sobs of sorrow when all at once I was silenced. My tears stopped, my body stilled,  my ears began to listen and my eyes began to see. It was as if a wave washed over me and all at once I felt an overwhelming sense of peace and love. 

In my mind, with my eyes closed I could could see beautiful, fluffy, white clouds which began to part and standing in the distance beyond them I saw a small child. A boy. My vision began to see the child more clearly and I recognized it was our Nicholas. He was unlike I had ever seen him before. He was standing! He was standing so tall, whole in body, his muscles no longer atrophied. He had a radiant smile on his face and I began to cry again, just being able to see him brought me so much joy. His wavy hair was tousled and he was wearing light blue shorts and a plain light red tee shirt. His feet were bare and as my vision got closer to him, I could see he was so light, so bright, his skin seemed to be illuminated. 

He could see me, could sense I was there, and so he spoke to me. He spoke with a voice that was unaffected by SMA, perfect speech for a six-year-old child. He said with excitement, " Look at me, Mom! Look how tall I am! Look at how my legs can work now! I can run. Watch me run, Mommy, I can run up this hill!" He was standing on a beautiful grassy hill covered in wild flowers and I watched him sprint up it. Then he said, "And look, Mom, my hands work now too, I can pick flowers. I will pick a bouquet for you, Mommy." Then he proceeded to turn away from me and crouched down to pick several of the wild flowers growing in the tall, green grass. I watched in stunned silence and amazement as I watched my son able to move his body in Heaven in a way he could never achieve on earth. He turned back to face me again and moved his right arm in a sweeping gesture and said, "Look, Mom, it's so beautiful here. See the beach and the water? There's a beach here, too." I could then see that down at the bottom of the hill Nicholas was standing on was a coastline with crystal blue water and a sandy shore. The sky was a brilliant blue with wispy clouds floating overhead. My body began to shake with sobs again and Nicholas said to me, "Please don't cry, Mommy. I am so happy here." When he said this I could sense that he wasn't sad for me, that he wasn't attached to me or my emotions any longer. When Nicholas was living he was a very sensitive child, and he could sense my sadness when I was feeling down, and I, in turn, could feel his empathy for me. Now, I clearly understood that he wasn't sad that I was so upset, he was simply removed from me and my earthy emotions and he was too happy, too joyful, too full of grace to feel sadness or pain any longer. Finally he said, "I have to go now, Mommy. I will visit you again soon. I love you." As he started to turn and walk away, I could feel myself desperately trying to hold on to him. I could feel my mind trying to reach out and grasp the vision of him just a few minutes longer. I didn't want to let him go. And yet, all at once, my vision went dark and I was alone again. 

I finished my prayers by thanking God for the amazing vision of Nicholas and I finally felt the peace I needed to fall asleep. I cried a bit more, but this time my tears were tears of thanksgiving for I now knew with clarity that Nicholas had taken his rightful place in his heavenly home. I snuggled into my pillow and let the emotions of the day drift away. I fell into a deep, dreamless sleep that night and I awoke the next morning feeling that I could face the day, knowing without a doubt, that our son was safe, happy, and full of the joy and splendor that is Heaven. The next morning I told Jeff about my vision of Nicholas and as he listened, big salty tears rolled down his cheeks, as he was so grateful for confirmation that our son was at peace. 

In the days and weeks following this miraculous vision, I take such comfort in knowing that Nicholas is whole in body and spirit, in perfect peace and harmony with the saints and angels, living in such radiant holiness and peace. This vision has carried me through some of my darkest moments in missing our son and has allowed me to feel pure tranquility like nothing else can. 

Monday, April 27, 2015

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. 

Tuesday, April 21, 2015

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.