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. 

Little Gymnast

Can you tell how excited Elizabeth was to start gymnastics last week?! Santa Claus brought her gymnastics lessons for Christmas last year and mommy just recently got around to signing her up. She absolutely loved her first class and everyday since has asked when she can go back. She kept up with the kids that have been going for weeks/months and even for a four-year-old seems to be quite agile and coordinated. It's so fun to watch her participate in something she really enjoys!

Lent Begins with Ash Wednesday

Lent began last week and the children and I attended the mid-day mass at our parish. We all received ashes but Ella's didn't last through mass. I was able to snap a photo of Nicholas' and mine however. This Lent I am giving up sweets and coffee for all 40 days which, honestly hasn't been too difficult, except for the fact that I have been craving something sweet a couple of hours after dinner. I also hope to volunteer with the poor in our local community in the next few weeks as well. 

St. Valentine's Day

The kids and I had so much fun crafting valentines for teachers, therapists, classmates, and loved ones earlier this month to prepare for St. Valentine's Day. We had a family celebration a couple of days before the 14th because I was away leading a weekend retreat on the Saturday that the feast day fell on this year. We enjoyed a yummy dinner and exchanged candy, small gifts, and homemade valentine cards. I am so blessed to be loved by three wonderful people!

February Happenings

Ella is to the age where she really enjoys being around others, but she also likes to spend more time in her room as well. One afternoon I caught her relaxing, playing games on the iPad after school. She requested a few new apps so we used the iTunes gift card she got for Christmas (thanks Uncle Brett!) to purchase several new educational apps, which kept her happy and occupied long enough that mommy could finish some chores around the house.

I recently ordered Ella some spring/summer clothes because 1) she's growing so rapidly, she barely fits into anything anymore and 2) Gap/Old navy had a huge sale that I had to take advantage of. These glasses came in the box of new things and I don't think she's taken them of since. Her future's so bright, she's gotta wear (rose colored) shades. 

I have been trying to make one or two new recipes for dinner each week because I get so tired of eating the same thing week after week. Pinterest has been a huge help in discovering new recipes. I found one a couple weeks ago for Italian Wedding Soup (which is my absolute favorite) so I made it from scratch and it turned out amazingly delicious! The whole family enjoyed it. I think it will become a winter staple. 

Today is February 24th and amazingly the Narcissus Daffodils are already blooming! The crocus are blooming as well and the hydrangea and lilac bushes already have buds on them. Everything is up about a month early, which I don't mind as I much prefer warm spring weather over cold, snowy winters. 

My dear friend, Catie, recently sent me this little treasure. It's a necklace with the kids' names, a small cross, and a pearl. I absolutely love it and wear it all the time. Thank you so much, Catie! You are such a thoughtful friend!!

The kids and I planted our own little indoor terrarium a few weeks back. One of the succulents is doing quite well and the other two, not so much. I think it will be worth it to buy a small fern and some moss to place in there instead. 

Every once in awhile I like to take a photo of myself to add to our blog so our children (as they age) can see what mommy looked like when they were young. This is one of me one afternoon on my way into work. 

In just a few days (February 28) we celebrate World Rare Disease Day. I purchased this tee in honor of Nicholas, from the Gwendolyn Strong Foundation and will proudly wear it on the last day of this month to show my love for our boy and the estimates 350 million others in the world who suffer from rare and genetic diseases. 

Jeff's 33rd birthday

 On January 29th Jeff turned 33! We had a simple family celebration for him with the most delicious ice-cream cake ever...it was covered with various types of candy: Butterfinger, M & M's, cookie dough bites, Heath bar. Mmmm, it was a fantastic treat! The following weekend, Jeff and I had a date day for his birthday, a lunch out at a new brew pub and an afternoon movie. Happy birthday husband!