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.