When someone dies, it’s often difficult to find words to express your sympathy; even if you’ve walked in their shoes a time before.

Silence can be awkward, so you say the only thing you can think of and it comes out all wrong. Is there ever a right thing to say when someone is grieving?

I have always believed that education was the best way to face a difficult question. I was talking with a friend about Zane and she asked me, “How does it feel that his story has ended?” I asked her, “who?” And she replied, Zane’s.

A story only ever ends if the people left behind let it end. When you lose a loved one, it’s the end of that chapter, not the whole story.

I truly believe that Zane was brought on this Earth to save me. I didn’t feel I had a purpose. I wasn’t doing something I loved. I was not on the path that God wanted me to be. I started to create my own path and He sent me an Angel to lead me back to His path.

Losing Zane was the hardest pain I have ever experienced. I lost myself and lost my faith. It took me many months to wake up and stop feeling sorry for myself. To move forward and keep Zane’s memory alive.

There are still days that hurt like hell, today was one of those. Most days, however, are spent looking back at his amazing life. A life I was gifted at being a part of. I didn’t realize, until after we lost him, that my life was headed to bigger things.

These bigger things would include an amazing daughter who teaches me something new every single day. I have never met a child who has been through so much, but love the way that they love. So unconditionally.

This year I have worked hard in sharing Zane’s (and now Zayva’s) story. Moving forward and sharing their story has helped me grieve and given me many opportunities that I wouldn’t have otherwise had. I am looking forward to continuing to share their story and help others while doing it. I want to educate and advocate for our children who need us. Those who don’t have a voice to educate for themselves. We must be the educators. I’m looking forward to 2020, it’s going to be a big year!

Before Zane was born all I knew about genetics was what I learned in biology. I wasn’t even that interested in what I did learn. It wasn’t my thing. Now, genetics consumes me. I want to know everything there is. I want to find answers to my children’s genetics. I want more time with our daughter.

During my third pregnancy we knew Zane was small and that he had clubbed feet. We never expected anything that happened after delivery. I was induced at 37 weeks, on June 28, 2012, at our local hospital. Zane was born 4 hours later weighing 4 lbs. He was also blue and not breathing. We didn’t even get a chance to glance at him before he was whisked away and stabilized. A few hours after birth we got to touch him through the life flight incubator as they prepared to travel to Children’s Hospital in Pittsburgh. I spent the night at our local hospital without my baby.

24 hours later I was discharged. As we travelled to Children’s, I fully expected to get there and find out a discharge date and plan to take him home. Instead we were greeted by genetics who told us they believed my son had a terminal genetic condition and we may not get to take him home.

During the initial 88 days we spent in the hospital, we learned he DIDN’T have the terminal genetic condition they thought he had, but he did have a genetic condition they knew very little about. He was given the diagnosis of Trisomy 17 micro-duplication. What is that? We know he has an extra little piece of chromosome 17. After this diagnosis, they tested us to see if it was inherited. We found out it was inherited from me(mom) and that my other two typical, healthy children also inherited my micro-duplication. No one knew what that meant, if the diagnosis was the cause of his medical anomalies, or if it was going to be terminal. We spent the next 3.5 years living, loving, and learning. I’ve researched, I’ve connected with other parents, and we did as much as we could medically for Zane. We knew in the back of our minds that some of his medical anomalies could be terminal, but nothing prepared us for ONLY 3.5 years and still no answers why trisomy 17 affected him so differently than the rest of our family.

On April 28, 2018 we delivered our fourth child, Zayva Lauren. During my pregnancy she showed some similarities to my pregnancy with Zane. We knew there was a chance we may be on this road again. After 39 weeks I was induced. Zayva was not blue and weighed 4lbs. 13 oz at birth, but otherwise had identical symptoms to Zane. Strydor because of paralyzed vocal chords, club feet and clenched fists. We would also find out later she also has too many folds on her brain and will have developmental delays as well. It was assumed that Trisomy 17 had played a role in her anomalies. Again, we were greeted by genetics. This time, after testing, we found out Zayva has a chromosome 1 micro-duplication. Not 17?!? Once again we were tested. We found out I also have the same duplication. So now what? Where do we go from here?

Genetics is just as curious as we are. Their medical anomalies most likely have nothing to do with their micro-duplications. Zayva was able to answer some questions based on her genetics. Now we have her genetics to compare to Zane’s and then compare to ours. We are all hoping this gives us answers. We would like to get more than 3.5 years with Zayva and maybe even save her life. Also, we would get some closure with Zane. Although we know some of his medical conditions lead to only getting 3.5 years, we don’t know why.

As we continue on this journey, we hope to not only get answers for ourselves, but answers for others who are going through this journey. We also hope for a lifetime with Zayva.

For now we live in the moment and make memories with her. We honor Zane as we do so. If there is anything I have learned while on this road again, it’s love with your whole heart and never wait for tomorrow.

Losing a child brings many tough and challenging days. Just when you think you’re starting to heal, something will rip the band aid off and the process will start all over.

September 1, 2015 began as what seemed like a typical day. Never in my wildest dreams could I have imagined the way the day would unfold. We didn’t know it then, but this day would end up being our last ride on life flight, our last hospital admission, our last trip to Children’s ER, and what became the beginning of a whole new journey.

Sept. 1 we had just been home about a week from our last hospital stay. Zane was under the weather and we were trying to get a diagnosis from home, and not make another hospital trip. His pediatrician ordered blood work and his clinical manager came to draw the blood from home. We had been struggling for the last week trying to figure out just why Zane was so lethargic. His CM asked if we could take his blood sugar because of his symptoms. When the monitor was unable to read his level we immediately knew things were worse than we had expected. 911 was dialed and we began getting ready for the ambulance. Given Zane’s history, I didn’t have much to pack because we were always prepared. I grabbed what we needed and we headed down to wait for the helicopter.

Upon arriving at the hospital we were rushed into a trauma room in the ER. Lots of bloodwork was drawn and labs were sent. About an hour later several nurses and doctors swarmed the room. At this point we weren’t told anything yet. I just stepped put of the way while they started doing their thing. I remember one of the nurses saying his blood sugar is 1158, let’s start an insulin drip. We were immediately admitted.

(To be continued)

I’ve been told that people will pass through your life to guide you in the right direction. If you’re led off path, they show up to lead you back to where you need to be. 

After Zane was born, I thought my life was pretty tough. Balancing the kids, a job, numerous illnesses and hospital stays took a lot of strength. But somewhere I found it when I needed it. Through help from friends, family and even strangers I got through each day. But nothing prepared me for death. It was always in the back of my mind, but there was no way it could happen to me. Then it did. 

The first year after Zane’s passing was the hardest. Why me? What did I do to deserve this? I was scared, angry, sad, and I hated God. I mean was there even a God, because if there was he sure as hell wouldn’t do this to me. This was wrong. How can you give me a child and then take him back. If you exist why would you give me the most precious little boy then rip him from me, from our family. You’ve taken a part of my heart and what’s left hurts like hell. 

It’s been almost 2 years now. Losing Zane is the hardest thing I’ve ever had to experience and it changed me. I’m not the same person. Zane has taught me unconditional love, to find peace in the most unpeaceful places, to care for people even if they’ll never care for me. My heart broke the day I watched him take his last breath, but it also filled with all the love he left behind. All the love he had in him was spread amongst those who were hurting the most. It wasn’t easy to see at first, but as time moves forward, it becomes more clear. 

I wasn’t on the right path, and you were sent to change it. 

As I wake up each day, I put on a face. A face that’s not mine, but will get me through the day. I have a collection of faces and rarely do I ever wear the same one. I don’t remember the last time I was able to feel like myself. To wake up and be able to wear my own face.  Holding the pieces of my heart together is hard, exhausting, time consuming too. 
I heard that things will get easier. I heard that I’ll find a way to “move on”. I heard that “life will go on”. Maybe it hasn’t been enough time yet, but things don’t feel any easier, I can’t move on yet, and why does life have to go on without you. 

Strength comes and goes. Just when I think I’m ok, something comes along and reminds me that it’s not, not yet. I was ok being on the path where I got to be your mother, your nurse, your best friend. The path where you were alive and I could make the decisions that were best for you. The sleepless nights, hospital stays and all the memories we made run through my mind so often. 

Where does strength come from? Why is it so hard to find but so easy to let go? I didn’t choose this path, but somehow found myself on it. Just as quickly as I find the strength to take on the world it leaves me. 

I’m still lost, and looking for another path to follow. I don’t think I’ve found it yet. I’m stuck just trying to figure it all out. 

The last 10 months have sort or been like an unusual hell. While my life has been moving forward quite nicely, the broken parts are struggling to keep up. My heart has a constant ache, a permanent reminder of your life and death. Every detail of your 3.5 years is etched into my heart and soul. There’s not a day that goes by where my heart doesn’t ache to hold you again. 

I remember most of the major events that have happened in my life, but rarely recall anything in between. However, I remember vividly most of the last four years. Everything from June 28, 2012 through November 29, 2015 is solid in my mind. This time three years ago we were getting prepared to be discharged from the children’s home,two years ago Zane was home and we were decorating for fall, and this time last year we were 23 days inpatient struggling with Zane’s, sugars, electrolytes, and enlarged organs. We were also preparing to tell our families that we needed to bring Zane home on hospice. I had just finished all my diabetes training and was learning about all the med changes we would be making when he came home. I was arranging our nursing and hospice, cleaning and preparing for homecoming number ~30.

When we chose hospice, I envisioned many more years with Zane. We had watched his health decline for the last year and a half, but also saw the strength he had. Never in my life could I have imagined that just two months after being placed on hospice I’d hold him while he took his last breath. 

I think more than heartache, I struggle with anger and confusion. I’ve learned to place a bandaid on the pain every morning to help me get through the day. The bandaid is temporary and needs replaced often. Just when I think I’ve got it in the right place, something tears it from my heart. If they had a bandaid big enough to hold the pieces together I would buy a lifetime supply. I’ll forever be a griever and I’m ok with that. To grieve means I have loved been loved deeply. I would move mountains if it would bring you back. 

I will love you to the moon and back, forever!

I would give you a preview of grief, but I can’t. I can’t because it’s different every day. I will be a griever for the rest of my life. And that’s ok. That doesn’t mean I’ll be sad and miserable every day, but sometimes I will. 

Yesterday’s grief was ok, and last week, well that was ok too. But then today…. today I was sad, I yelled some, I cried a lot, I needed a friend, and I didn’t know why. I mean, I know why I missed my son, but today was a lot like yesterday, except my mood. There wasn’t a single trigger, just a different day. 

I’ll always have grief, every second of every day. But some grief will be happy and others will be sad or even be mad. Each day I miss him more and more, I long to feel his hugs and kisses, to play with his hair, and just hold him again. I’d take all the sleepless nights we’ve had and all the hospital stays again if it meant I’d have him back. 

I live my life to make you proud. You’re my super hero, my sweet pea, my little buddy always. I’ll think of you every second of every day. I love you to the moon and back, forever!

Dear Zane,

It’s almost your day! I knew this day would come, and I knew it would be rough. I could approach it one of two ways, I could stay home and cry about it (which still crosses my mind) or I could put on my big girl pants and conquer the world! Well I thought about you and how you would handle it, and I knew exactly what you would want me to do. I’m ready to do this for you. I knew I couldn’t do it alone, so I enlisted a few of your favorite people. We had a huge celebration for you! Now it’s time for an adventure. I wish so much that you were here in person, but I know you’ll be in spirit. Happy fourth Birthday in heaven! I hope it’s your best one yet. Love you to the moon and back, forever!

*We would live for you all to release a red balloon up to Zane and send us a photo!* Thank you!

                           2015

Six months ago I was holding you. I held you for the last time, I was numb.

Today I miss you, just like yesterday and the day before that too. But, I get my strength from you. I’m learning to move forward and honor your memory in so many ways. You were so strong and I will be strong for you. Thank you for setting an amazing example for me and everyone who’s lives you’ve touched.

I’m making amazing things happen and helping so many amazing people because of you.

My heart will always hurt, I will always miss you, but I am strong for you. Thank you my son! I love you to the moon and back, forever!

Today I’m sad. I miss you. I wanted to write a post yesterday, but I was sad then too. I couldn’t bring myself to write. I didn’t know what to say. Except I miss you more and more each day.

Five months and one day ago there were sounds. Sounds of a ventilator, concentrator, pulse ox, suction machine, and still sounds of you breathing with the vent. Then, five months ago there wasn’t. It’s quiet. It’s hard because it’s quiet. Sometimes I still think I hear them. The beeping of the pulse ox means I need to check on you, but you’re not there. I may have forgotten for a brief second that you were gone. How could I have gotten so consumed in something that I forgot to think about you. I am sad.

Then, five months came. Five months and a day. Life keeps going, it doesn’t stop. Some days I wish it would because I need a little extra time to process all that’s went on. I remind myself to keep moving forward. I listen because I know you’re there with me every step of the way, silently coaxing me. My biggest supporter, I miss you much. See you again some day! Love you to the moon and back, forever!