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Life as we know it - Viner family blog about our journey with Nicholas' heterotaxy/CHD and all the other things too!


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Entry 22: They say you shouldn't hate...

Posted by Sherri Viner on October 31, 2017 at 12:40 AM Comments comments (20)

I sit reflecting on our Disney trip. We’ve been planning for over a year so it felt like the day would never come but now that we are past it, it feels surreal. It’s a bizarre mixture of feelings. I loved seeing Nicholas and the rest of the kids having the time of their lives. But to be honest I also have the crappy thoughts of “what if these moments are Nicholas’ firsts and his lasts.” Some may think that it is morbid to think the way I do. It may very well be. It may seem harsh to actually admit what I’m truly thinking, but it’s my truth. The only consolation to it all is that because the realities of finality are involved, we tend to become more committed in making all the living moments really count.

I watch the video compilation of our trip over and over again. I’m so thankful to have the memories we made but I’m so damn mad that I also fear having to watch it one day as not just a look back on the past type video, but as a collection of “last time” videos.
I hate that I let my mind wonder to that place and it feels so familiar.
I hate that I’m in this constant state of fighting the light against the dark.
I hate that I’m so sensitive. Like when AJ says “die” when he is innocently playing with his toys, I have the immediate gut response to correct him and tell him not to say that. As if just saying the word makes it truer.
 
I hate that we constantly have to think 3 steps ahead of every situation. What will our kids do, what will someone else kid do, how do we minimize exposure to germs, what did our kids touch, what did someone else’s kid touch, does anyone show signs of being sick, are our kids showing signs of being sick, etc.
 
I hate that when we are out and we have to feed Nick through his gtube, people uncomfortably stare. Part of me totally understands the curiosity or even ignorance of some people but it’s the other “look” we get which is of pity or even disgust.

I hate that even if we get past Nicholas’ next surgery or surgeries, that he will always feel different and isolated.
 
I hate that I can’t control this and just fix it.
 
I hate heterotaxy and congenital heart defects.

Entry 21: Always come back

Posted by Sherri Viner on October 14, 2017 at 3:30 AM Comments comments (0)

I’ve already failed in my mission to write more frequently and it’s obvious that I need to keep working at it. I always feel better after I mind dump a little through writing because there are entirely too many sleepless nights where my mind just races with thoughts. Some are even of the coherent nature. Then the internal struggle between peace of mind and needing sleep commences, most nights lately have moved towards sleep.


I realize that most of my inner brain babblings are completely Dr. Jekyll & Mr. Hyde. A lot of this journey has been a back and forth of emotions and progress. It’s clear from the entries I’ve written where in some, I am low and in others, I am in a high. That’s a big part of this journey, trying to navigate through, trying to balance, and trying making sense of it all. Trying is the operative word there.


We are coming up on day 13 of our trip. So far it has been amazing! The pictures I’m taking and posting nearly every day are helping catalog every step so we can look back on these memories. We’ve experienced so many new firsts for not only Nicholas but for the other little kids too. Playgrounds, beaches, pools, and overall what seems like a whole new word to them. Jimmy and I find ourselves saying things like "that was great, we should reserve this for next year." Then reality sets in and we know that we can't plan for anything a year from now because we could potentially be headed into Nicholas' third open heart surgery. We then quickly say, "We’ll have to plan and book a long vacation for like 3 months after he's been given the green light post operation." In saying those words, we are also saying what isn't being said, which is that we really don't know what the next year will bring. And honestly, that fear can be so damn paralyzing at times. I hate this part. I hate that I look at his Nick’s precious face and the thoughts are so uncomfortably familiar.


And then I’m there again. But, I know I can't live there. You know the place and space in your mind; that place where dreams and hopes go but they never return. The place where the devil's darkness consumes your every breath with pain, sorrow, anger, frustration, and it starts to blacken our hearts. As soon as it all seems too much, I inhale slowly, and exhale even slower. I have to remind myself to just breathe. Breathe in the knowledge that God has an ultimate plan. Breathe out the internal voice of doubt and the need to control it all.


And as quick as I went, I come back. I say to myself “No matter what, always come back.” 

Entry 20: Life in the slow lane

Posted by Sherri Viner on September 28, 2017 at 12:20 AM Comments comments (0)

People are always in a rush. Every time we are out on a drive to try to get the kids to take a nap in the car, seems everyone either wants to hitch onto our tow or race us to the next set of lights. Could it be that we are so good and busy being busy that we are overlooking the simpler things? Sometimes we focus so hard on future event that we don’t actually live in the present. Really live in a moment and be able to do it in a way that matters. Having Nicholas has given us the opportunity and purpose to just slow down.


There is not one single day, where in the course of that day, I don’t look at Nicholas and get so overwhelmed with love, anger, sadness, gratitude, and back to love. Some days it’s only a handful of times and on other days, I seem to be more aware or sensitive and consumed by its frequency. It’s the same thing every time though and all of those feelings happen in precisely the same order. I look at him and I just think to myself how crazy in love with him I am and how much I adore everything that is only him. This of course then triggers the anger. It just keeps building inside as I fuel the fire from my internal complaints of the unfairness of it all. Why him? Why the hell did this have to happen to him? After the rage and fits of anger, I then begin to feel the intense feeling of sadness. The real truth of heterotaxy and CHD hits and it becomes all too familiar. The feelings of despair in knowing that despite every effort that could ever be made medically for Nick, he will only ever be able to look forward to organ failure. And even with the chance that he makes it to receiving a transplant, that is not a cure by any stretch either, it’s a lifetime of antirejection medications and just more borrowed time. After I’ve wallowed in the Pity- party of one, I pull myself together and I am instantly humbled by gratitude. I realize that he’s physically in front of me with half of a heart defying all odds even with all the chips stacked against him. But he’s here, in arms reach where I can touch him, and kiss him, and hug him, and tell him how much I love him.


So the moral of it all is that there may be a whole lot of “things” that get in between, but remember to always start and end with love. But before you go and start to think that there may be a chance that I will become overly sweet with all of these precious sentiments, never fear because we are but a second away from crying, screaming, and tantrums. For the shenanigans will have commenced and it’s back to the business of being a mom as usual!

Entry 19: The profound to the ordinary and back again

Posted by Sherri Viner on September 27, 2017 at 6:55 AM Comments comments (0)

It has been sooooo long since my last entry. I’ve often had the idea to sit down and take just a few minutes to sort out all of my million thoughts and organize them enough to write something but I always manage to find an excuse as to why that wasn’t going to happen that day. It has a lot to do with the fact that I realized that life is not a compilation of events for a highlight reel or best of series. Well, at least my life isn’t. Most days there seems nothing much to say because the day is void of profound significance and there isn’t necessarily a lesson to be learned in it. Most days are filled with the mundane, the grind, and the commons. Most days are just filled with the satisfaction of knowing that I made it through another day.


But then I started to think about it a bit more and what I’ve also come to realize is that the plain and ordinary is as insightful and as much of a blessing as the outwardly exciting. I have to admit it…I’ve found myself getting caught. I’ve let it slowly sneak in. All the things I professed to not doing. My use of social media has started to morph me into letting in doubts and second guessing myself. Without even knowing it, I was taking in a self-induced bombarded of comparisons and judgements. The perpetual stream of happy shiny people; I mean where the hell are the pictures of the completely disheveled? Or am I the only one with hair half in a binder as the other half has fallen out all raggedy like. Sporting the sweat pant or yoga pants outfit with a mismatching faded out t-shirt and zip up hoodie. It’d probably be easier to find a yeti standing in your backyard than to find a profile picture like that. Now that I think about it, I could even be the dang Yeti?!


The whole point of starting the social media accounts for me was to spread awareness of heterotaxy and CHDs. One of the ways we were going to do that was to chronical our personal journey with Nicholas. All parts of it - the good, the bad, the beautiful, and the ugly. I think we’ve done that for the most part on the NVHF Facebook page (facebook.com/vinerfamily) with updates. I’m not the best about posting though but try to make at least one per week and keep updated pictures of Nicholas. As I stated earlier though, I’ve let my fear of not being good enough hinder my ability to write and share my experiences. So with that said, I’m making a commitment. To write completely unfiltered, without reservations, be completely vulnerable to exposing the whole naked ugly truth of what is me and our journey. Even if the high of the day was getting thrown up on, even if the low of the day brings out the darkest of dark, even if that means I might really not have anything worth saying, and even if no one ever finds this to read. But on some off chance you are reading this, buckle in haha!

Entry 18: Déjà Vu & God too

Posted by Sherri Viner on December 28, 2015 at 4:05 AM Comments comments (0)

Well here I am again, we’ve been on quite the journey with many new experiences but I’m back in this all too familiar place. I know that it’s due to the looming surgery and I can feel it; they are making their way back to the surface. I realize that I’m starting to cycle through a lot of the same emotions I had going into Nicholas' first surgery even though I’m not a newb this time around. Not being a newbie just means that we know by heart where the cafeteria is, we know which floor the intensive care unit is on, we know what the monitors are measuring, and we are better informed about what we should bring this stay but all the fear, the nerves, and feelings of anxiousness are still there. I can hardly breathe when I think about the fact in just a few short days we will have to put his life in the surgeon’s hands yet again. And right before they wheel him away to surgery, we will get what feels like the briefest of moments to kiss him and tell him how much we love him.


There is the darkness that hovers over this journey we are on and it can show itself without a moment’s notice. It happens when someone gifts Nicholas a nine month outfit and the first thought wasn’t to take the tags off and wash it to be worn. The first thought was to keep it, but to put it aside with all the tags on it “just in case”. It happens when I am reading the posts of those in the heart community and a child has taken a turn for the worse. Although each of us has our own unique story to tell, I know that what they are going through with their child could just as easily happen to mine. It happens when there are conversations about our future. I know that we won’t leave Grand Rapids as long as Nicholas is alive but we can’t ever plan too far ahead. It can be so unnerving; the lingering feeling that is always there. Feeling like the other shoe is going to drop but not knowing when. The truth of it is, I’m holding on so tight that I’m completely crumbled. The reality is that there is always “that” possibility and despite the progress or positive strides made, it is a constant companion whether we admit it to ourselves or not.


Fortunately, I have a relationship with God. He knows that I still struggle with this though. I still ask Him to show me why we were chosen to be Nicholas’ parents and to grant me peace to quiet my worries. I am not struggling with our decision to have Nicholas because he has been such a blessing and has brought so much joy and fullness to our lives; I’m struggling with my own fears and doubts. It’s hard to understand why such terrible things happen and it is even harder to explain it and hold on to faith through it. Although I can’t always see or understand it, I know that there is a greater plan and I don’t believe God chooses any of us or wants us to struggle with a sick child; I believe He walks alongside us and cries along with us.

 

Entry 17: Life as we know it

Posted by Sherri Viner on November 3, 2015 at 2:20 PM Comments comments (0)

Seems like an eternity since my last entry. I haven’t had much of a chance to reflect and I’m just now finding myself sorting out the events, thoughts, and emotions of the past few months. I think back to the days leading up to Nicholas’ arrival and I’m struck by how much I’ve changed. I remember what I was feeling but I can only see it from a distance. All the darkness, doubt, and anxiousness was absolutely real but when you move forward on the journey you realize that you’ve grown and it’s difficult to recognize the person you left behind. I look back at that scared girl with a changed heart. I see her and I am helpless, I can’t help her because the journey is in part, part of her growth. The only thing that I would tell my former self is to continue to have hope, hold onto your faith, and just wait until he’s here- it will all be so amazingly different.


We are settled into a comfortable and familiar routine. Our days are relatively “normal” like everyone else. We’ve just grown accustomed to what is now our new normal. We just add in a couple of extra things for Nicholas like making sure we have medication measured out and prepared. He is currently on 5 medications which are administered at different times of the day. We also check and monitor his body temperature, monitor his heart rate and oxygen saturation levels, monitor weight, change out his feeding tubes, do gavage feedings, pump breastmilk, go to doctor and cardiology appointments, have bi-weekly home nurse visits, and have weekly PT home visits. Somewhere in between all of that we add in a marriage, a teenager with activities, an overactive toddler, an infant, household chores, jobs, and a newly founded nonprofit. It doesn’t leave a lot of extra time for sleep or anything else but I try to find some quiet moments in the day. And in those rare moments, I remind myself how extremely lucky we are to be overly busy and so incredibly relieved I am to be so tired.


The day of Nicholas’ arrival, I woke up and I just knew it was the day. The contractions felt like they were the real deal but they weren’t progressing in the text book style way I was expecting. They would start to get closer together and then stop. I’d go from 5 minutes apart to 11 minutes apart so there was no real pattern. I decided to get things moving and had Jimmy take me shopping. We strolled about at Hobby Lobby and World Market for a while and after we picked up a few things we headed back home. When we got back, Jimmy noticed that my necklace was just hanging. The prong holding one side of the heart had broken, this was surely a sign that Nicholas was coming. About an hour later when the contractions started to get more intense and were only a few minutes apart, we headed for the hospital. All I really remember now looking back was how calm we were. The delivery was uneventful and rather boring really. The big difference this time was the huge team of nurses and doctors waiting for Nicholas in the room with us. Honestly, in my head I knew they were there but all I could focus on was delivering him.


Nicholas finally made his debut. He was finally here and he was beautiful. Nicholas was pink and screaming. He was nothing like the worst case scenario I had played out in my mind for all the months prior. He was doing so well in fact, that I got to hold him for a couple of minutes. They rested him on my chest and my mind was immediately cleared. All I knew and felt at that moment was love in its raw and simplest form. All the statistics, definitions, prognosis, anxiety, grief, it all disappeared. 


Then we were parted. As much as it pained me, I couldn’t wallow in that because now it was game time. My only thought was to get back to him no matter where he was. So while the neonatal team took Nicholas, I was transported to another wing of the hospital. Jimmy followed and stayed with Nicholas and as soon as they would let me leave, I was wheeled down to the NICU. I spotted Jimmy and then I saw Nicholas in his isolette hooked up to all the machines and meds. I think it hit me weird because I could feel that I was starting to pull back and distance myself. I remember thinking how much I loved this little creature but for some reason I was afraid to touch him. I knew before getting to the NICU it was time to buckle in, but my heart wasn’t ready to see him like this - oh my poor baby. I felt as if the nurses and doctors saw me and expected me to be an emotional wreck, who would blame me right? But I kept it together because I didn’t want any of the attention; I wanted everyone to just focus on Nicholas. I know it probably came off that I was cold or that I didn’t care as much. What they didn’t know and couldn’t see was that my heart was broken into so many pieces that it would never fully recover. I was crying on the inside and I was only ever half a breath away from completely losing it.


The next days were a blur. Jimmy and I went from the NICU to home and vice versa. Although we couldn’t do anything for Nicholas while he was in the NICU, I couldn’t stand to be away from him. I didn’t care if it was 3am and no other parent had been in sight since 5pm, I needed to be there. And on those rare occasions when he opened his eyes, I wanted to see him and let him see me. The days and nights all ran together. When I would try to sleep for 2 hours at home, I’d wake myself up because I could hear the alarms sounding on Nicholas’ monitor. When I was at the hospital and tried to sleep, I wouldn’t because I just wanted to watch and hold him. All the while as I was with him, I felt guilty I wasn’t home taking care of everything and everyone there. Thankfully, our moms were at our house holding down the fort with James and Alexander. Having them there was a huge help. It allowed me to release some of my guilt because I knew the house and kids were in good hands. Having them also allowed us to be able to go back and forth freely as we needed to with Nicholas.


That was our lives for 3 weeks. Feeling like we were in a constant limbo and trying to find a balance with having 2 parts our heart in separate places. Not ever feeling comfortable being in the hospital because we just wanted to go home. Not ever feeling comfortable at home because it wasn’t our home. It wasn’t our sanctuary as it once was, it turned into a place we went to check on and see everyone; it just became a pit stop.


Surgery day finally rolled around after a multitude of x-rays, labs, and tests. The post from Facebook on that day basically sums up how we were feeling. So far, that was the scariest and uncontrollable place to be in as a parent. Putting your child’s life in someone else’s hand however capable they are. Our stress level was heightened even more so because we knew how risky these kinds of surgeries and recoveries are. Then the waiting …more waiting …and even more waiting…


I’m not going to rehash all the posts we made from after the surgery. Needless to say though, we are so thankful and grateful to be on the flip side of that first surgery. Of course now that we are settled at home we’ll have to turn around and do it all again... I think this will be one instance having experience isn’t a good thing. Thinking about going back, I start to cringe. The long never ending hallway we have to trek to get to the set of elevators that leads to his floor, having to just deal with the lack of selection and entirely overpriced cafeteria food, and just having to do the whole back and forth game again. I think we got a small degree of hospital PTSD if there is such a thing.


Because we know that there is a possibility that we will be in the hospital for Christmas, we decided to start decorating early. We figured we could do with some extra Christmas cheer. As we were finishing decorating, I remembered something. I quickly ran downstairs to search for it and brought it up. I bought it months before Nicholas was born. I hid it separately from our Christmas things intentionally. I thought to myself when I got it that if Nicholas didn’t make it through his first surgery, I didn’t want to open our decorations and find it because that would have crushed me. I was so scared to even buy it and now I am so crazy relieved to be ableto hang it up.

 

I know that the future for Nicholas is very delicate but seeing that ornament every day is just another reminder of how incredibly blessed we are. So until Nicholas’ next surgery day comes, we are holding on tightly to our faith, hoping for continued blessings, and cherishing the memories we are making.

 

 

Entry 16: The Blur

Posted by Sherri Viner on August 7, 2015 at 5:05 AM Comments comments (0)

It’s been a while since my last entry. Despite my anxiousness to not being pregnant anymore and being able to finally meet our little guy, I'm trying to enjoy and soak in these last days of pregnancy. This task is proving to be a bit more difficult than one would think since I'm not the most patient of folks but in the back of my mind I know that once Nicholas is born, the journey ahead of us will be forever life altering. So while my days are filled with the uncomfortable aches and pains of pregnancy, I’m trying very hard to just relish every minute and remember to breathe and be in the moment. I have a feeling that soon I'll be missing these simple days…

 


I think I’ve done well in these last few weeks of just enjoying the idea of welcoming a new baby into our lives and putting aside for a moment all things related to Nicholas’ upcoming health issues. It’s nice to take a break because it seems that no matter how much you hope and stay positive, worry and doubt seem to linger about and is never too far away. I will admit that in the last couple of weeks, I had one moment where I felt an immense sense of guilt. I was just going about my normal day and it hit me suddenly like a semi-truck. The feeling washed over me and I couldn’t help but feel the gravity and responsibility of knowing that I was going to put my innocent baby through all the pains and cruelties of multiple surgeries. At times, this whole thing feels a bit unnatural. On the one hand, as a mother I want to protect my children from pain but I know what Nicholas is going to be up against and it feels a bit wrong. On the other hand, because I want to protect my children and want the best for them, I justify the means for potentially a better end.

 


I’ve mentioned in previous posts about being pulled emotionally in separate directions. I’ve come to realize that that is the common vein through this journey so far and right now I’m left to live in a world filled with shades of grey; a constant blur between the black and white. But perhaps there is a greater lesson to be learned; how do we know that what we see is truly clear if we’ve never seen things a little blurry…

 

Entry 15: Last Holiday?

Posted by Sherri Viner on July 10, 2015 at 10:30 AM Comments comments (1)

I was doing some reflecting about this past Fourth of July as it was our last holiday before Nicholas’ arrival. We are so blessed to be Americans in which we are able to give Nicholas an opportunity for a better quality of life. It seems only fitting that our last holiday was Independence Day, a celebration of freedom and liberty built around a nation that started with what seemed as the impossible dream. America had very humble and scary beginnings but persevered as a nation of people determined to live free against all odds. A nation under God, with unalienable rights endowed equally to all — among these life, liberty and the pursuit of happiness. Who doesn’t love a great underdog story?!

 


It was a strange fourth this year because it was very low-key and quiet since it was just the four of us. We are usually the ones holding the party but it was such a nice change of pace to enjoy the day with just our family. We ended up eating the typical barbeque foods and managed to watch the fireworks displays around our house provided by all of our neighbors. Jimmy and I debated whether or not to get some fireworks and we looked at them every time we were at the store but the actual day kind of snuck up on us. I felt a bit bad for not grabbing some at the last minute and we decided to make sure to be better prepared for next year since Nicholas will be close to hitting a really big milestone of turning 1. That thought got me thinking about the fact that I’ve never really done anything half way before and so I shouldn’t start now... I’ve been in an emotional tug of war with myself and trying to ration out how much emotion I should and shouldn’t be feeling. But I’ve decided that half measures are not what are needed and I’m letting go of the thoughts that are keeping me back from all the hopes and dreams for Nicholas.

 


So I write this to you my son:


Nicholas, ever since we found out that you were going to have health issues, I’ve been full of worry. I’ve gone through the spectrum of emotions and I’ve cried many times to the point where I had no more tears. Somewhere along the journey, I think I may have lost my way though. In my sorrow and fear for you, I almost forgot; forgot the fact that I’m a really tough mom and perhaps this is why God chose me to be your mother. You are no different than your brothers and I’m going to be hard on you and expect the very most from you always as I do for them. You should expect no less from me, so I’ll put away my thoughts of sadness, worry, fear, and pity. I’ll be the mom you need and deserve right now and just love you. The mom that is strong and full of grit. The mom that has enough will and fight for the both of us. Just remember that you’re of my blood, you grew from within me. We don’t give up, we never give up…


Your dad and I have placed you in our future hopes and dreams; put you in our thoughts and prayers. We see you at our holiday events, family trips, and pictures. We’ve already made room for you in our hearts along with a room for you in the house we are going to build. So you see my love, I know you’re going to make it because we’ve made plans for you. It’s a spot that can only be filled by you. So when you decide that you’re ready, we’ll be waiting.


Love Mom.

 

Entry 14: What the Heart Wants

Posted by Sherri Viner on June 24, 2015 at 12:10 AM Comments comments (0)

About 8 weeks left until my due date and I’m feeling the third trimester woes. At this stage, I’m beginning to feel as if I’m never going to not be pregnant. Seeing my feet from a standing position, throwing back a cold beer or diet coke, sipping on a hot cup of coffee in the morning, and taking an overwhelmingly hot bubble bath while drinking a glass of wine, those all seem but a distant memory now. As I await fate and the arrival of our baby boy, I’m also saying goodbye to the life I used to have. The life that didn’t include having to worry about becoming a parent to a child will medical needs. Although I am very anxious to actually deliver and meet Nicholas, I also know that as long as I’m carrying him, he’s alive and well.


As much as it would surprise people, I’m actually an optimist at heart but life happened and it has jaded me into being the cynical person I’ve become. So now, I’m left in a personal purgatory of sorts. I want to carry hope that all will be well with Nicholas but it’s a fine line I’m trying to allow myself to walk. I don’t want to have too much hope, if that’s even such a thing. I just figure that if I don’t get my expectations up too high or if I anticipate the worst, then I won’t be as devastated and I won’t be left feeling as blindsided. Even as I write this now, I can already see my controlling nature coming out...and as much as I’m trying to guard myself emotionally from events that are about to unfold, somehow my head can’t seem to tell my heart what to feel and I’m left with this internal struggle.


My heart wants to daydream about how Alexander and Nicholas will grow up together and be the best of friends or even the most troublesome duo that ever lived to frustrate their parents. I want to picture the family vacations that haven’t happened yet with all of us together; Alexander and Nicholas running around in Disneyworld and James thinking he’s too big but then finds that he’s just a big kid and probably has more fun than the little ones. My heart says that our little guy is a fighter and I want to believe that he’s going to defy all the odds no matter how high the chips are stacked against him and one day when Jimmy & I are old, we’ll sit and think back to this worrisome time and marvel at how far we’ve come and how blessed we’ve been. As surely as I can see those beautiful pictures of our future in my mind, I’m halted by reality and my pragmatic mind reigns me back and says, don’t get too comfortable with those thoughts because realistically, Nicholas may never be well enough to do those things or worse yet, he may not make it.


I’m sure to some of you that even letting myself think this way is unsettling and maybe you can’t understand how I can even be here. It’s true, it is unsettling. No mother wants to even entertain in the slightest bit that their child could die. Maybe to some my faith in God must not be strong enough, but to those I say that it’s as strong as ever but I’m still as human as ever too. I’ve been dancing back and forth, in and out of this dark place since we found out about Nicholas’ condition. I can only imagine that this is a small taste of what hell is like and it’s such an agonizing place to be; living in the middle of somewhere between hope and despair, never knowing how exactly to feel, and not knowing what will come.


Although this entry is written with a bit of a heavy tone, I know in the end that it’s not all doom and gloom. I know that there are brighter days ahead and that this is but a moment or a lesson in the course of a lifetime. There are so many that are taken too soon in unforeseen and tragic ways. So in a strange way, it turns out that we may be the lucky ones. We have gained a greater appreciation for just how delicate life is and we will be able to cherish every second with Nicholas.


For now though, I’m just going to let my dueling thoughts and emotions run their course. I hope to use this experience and time in my life to reflect and make myself a stronger and better person having gone through it.


Update from today’s doctor’s appointment: Nicholas is growing at a perfect rate and is approximately 4 pounds. The ultrasound tech said that it looks like he has a lot of hair. He wasn’t positioned in a way to get any good shots today and he has managed to turn himself breech at the moment and I’m hoping he turns again before the big dance. I will practically be living at the doctor’s office starting this week with 2 appointments per week peppered with routine visits and additional growth ultrasounds.

 

Entry 13: Que Sera

Posted by Sherri Viner on June 18, 2015 at 9:00 AM Comments comments (0)

If you’ve read my previous blog posts then you may already know that Jimmy had surprised me with some heart shaped jewelry. One in particular was going to be a custom made heart shaped pendant with a heart diamond in the center that was being made to appear as if it was beating. Initially, the jeweler tacked the diamond in the center stationary so I could get an idea of what it would look like. We were told it was going to take a week or so to complete and I was so excited to see the final product. Well, that was the beginning of the end. What started out as the sweetest gesture and idea by a loving husband has now turned into a complete nightmarish ordeal.


After taking longer than anticipated, the necklace came back looking broken. There was absolutely no motion what so ever, it just flopped over and literally looked like the piece needed repair. I won’t bore you with all of the details; this has been an ongoing issue for months now. I’ve had to deal with multiple managers, phone calls, visits to the store, and in the end I’m stuck with a piece that I’m not in love with and that didn’t meet my expectation. It’d be one thing if we went into the store and asked for some impossible feat, but that wasn’t the case. The employees at the store suggested creating the custom piece. I didn’t even think to second guess their return policy at the time since everyone was so helpful and seemed so confident in what would be the final product.


The company policy of no returns and exchanges was their trump card. It just sickens me that their customer service was so impeccable when Jimmy was initially buying the jewelry and when issues started to arise; we quickly saw their true colors and we were even lied to point blank. Jimmy & I are very loyal buyers and initially when the store went above and beyond our expectations, we were more than inclined to become loyal patrons. Knowing what I know now, I wish we hadn’t bought more things from them while we were waiting for the necklace to be completed. I will never buy anything at this particular store chain ever again in my lifetime. I know Jimmy feels bad about it all which makes me feel terrible he feels that way. I’m not trying to be ungrateful; the thought behind what he did is so beyond anything I could put into words.


I’m just left a little crushed though; I guess I’m in a more fragile state that I realized or allowed myself to be. I get that it may seem silly to be so upset over a material item. But this whole thing was so much more than jewelry to me. It represented our son’s heart and maybe it was wrong of me to set an expectation that no matter what happens with Nicholas’ heart, this necklace was a symbol of his perfect heart and that it would beat perfectly forever. I’m finding all of this so overwhelming sad and it’s almost like a small amount of my hopes were taken from me. I also can’t get over the uncanny parallel. The heart shaped diamond was never intended to be in the center of the heart pendant and it would take customization to make it work. Nicholas’ heart was never anatomically correct and will take surgical intervention to make it work. It’s clear that no matter how many times we send the necklace back to the jeweler, the center diamond won’t beat properly. It is also clear that with all of the surgical procedures Nicholas will receive, they will all only be palliative in nature and his heart will never be fixed.


Maybe in a bittersweet way, the necklace is as it should be...

 


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