One Year Ago Today

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One year ago today was the last time we kissed your beautiful face.

 

One year ago today was the last time we held you in our arms.

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One year ago today was the last time the three of us were together as a family.

 

One year ago today was the last time we looked at you as we said we love you so much and always will.

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One year ago today was the first time our hearts broke in a way they never have before.

 

One year ago today was the first time we felt what it was like to live with a broken heart and pain we never knew existed.

 

One year ago today was the first time our hearts kept beating when yours had stopped.

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One year ago today you were surrounded by so much love as we held you, looked at your sweet face, and told you how proud we were to be your mom and dad.

 

One year ago today was the day our lives were forever changed.

 

One year ago today we didn’t fully comprehend that it would be the last day we would see your face, hold you, and kiss you. We will always think the time we spent with you was not nearly enough.

 

One year ago today, we did the most difficult thing we will ever have to do, to leave the hospital without you in our arms and survive every day since then.

 

One year ago today was the first day living the rest of our lives without you.

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One year ago today you were taken away from us – but our love never will be.

A love like no other.

A bond like no other.

 

Just as we never knew the depth of our love and everlasting bond between us- a mother and son, a father and son- until the moment we knew you were there and the moment we saw you, we never knew the depth of just how much our hearts could break.

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You were taken away from our arms that were meant to protect you and keep you safe.

Our arms that were meant to hold you when you were sad and rock you to sleep when you were tired.

Our arms ache for you- our beautiful boy.

 

You were taken away from us-but not from our hearts.

You are deeply loved.

You are deeply missed.

You always will be.

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No matter what we do, where we go- the pain will always be there. There is no escaping it. The underlying pain of you always missing and always missing you. The finality of this day, one year ago, stays with us. We will always miss you and will always wish you were here. We will always wonder what life should be like, with the three of us as a family. That will never change.

 

We miss who you were. We miss who you would be today. We miss who you would have become.

 

We will talk about you, honor you, love you, and make you proud of us, just as any parent would. Your death doesn’t change that you are our son, and always will be. Your death doesn’t change that I am a proud mother and Adam a proud father and how proud we are of you. Your death will not take away us telling the world about you and the pain of losing you. Just because you are not physically here with us, doesn’t mean we are now supposed to “move on” from you. You will always be with us. Just because it’s now been a year, or any amount of specific time, doesn’t mean we will think about you any less or grieve your death any less. Grief is born of love. You are on our hearts and minds always, no matter how much time is taking us further away from a year ago today.

 

We love you Gavin more than words can say and miss you deeply.

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Dear Beautiful Gavin on Your First Birthday

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To our dear sweet son Gavin,

 

Today is your 1st birthday. A day we had pictured in our minds to be filled with such excitement-a big milestone. One full year of you being on this Earth. One year since the best day of our lives. We pictured you with cake all over you face, hands, and most likely your body. Basically everywhere. Maybe smiling but most likely crying because it would have been your first time trying cake and you wouldn’t know what the heck was in your mouth. We pictured Lily eagerly waiting to lick it off of your face. We pictured us helping you opening presents with friends and family gathered around to watch you. We pictured you with a big smile on your face-happy and healthy. And we wish more than anything that it could be this way.

 

Today, we will honor you and your life- 64 hours here on this Earth. Because those 64 hours changed our lives forever. You matter and always will. You changed our lives and the lives of many others, and will continue to.  There are many people honoring you-near and far. So many compassionate, loving, and supportive friends and family are here for you. We dedicated a beautiful tree for you and in loving memory of you. The engraved stone reads: “This tree is dedicated in loving memory Of Gavin John Drinovsky. January 26th 2015- January 29th 2015. Our beautiful baby boy, we love you. In our hearts forever and always.” We hiked in honor of you. We wore green for you. We will blew bubbles for you. We did and will continue to do acts of kindness for you. We felt your presence on Sunday and we feel your presence today. It was truly beautiful.

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We love you Gavin. Deeply. With every fiber of our being. With every inch of our hearts and souls. No amount of words I write feel like they are enough to describe our love for you. You make us proud. You are what keeps us going. The love we have for you is what keeps us going. Love is what truly matters in life. And we will spread love and kindness for the rest of our lives because of you, sweet boy.
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You were a fighter and still are to us. And we will continue to fight for you and because of you. I’m so thankful that your dad and I are by each other’s side. Your dad is an incredible father and husband. I love the way he talks about you. He cares about you deeply and it shows.

 

We will honor you and we will grieve your death. It’s not one or the other. It’s not either or. We will live a meaningful life that honors you, and at the same time feel the pain and sadness that comes with not being able to be there for you how we thought we would be and how we wanted to. We would have done anything for you if you were here and we will still do anything for you now. That doesn’t change. It’s just in different ways now.

 

We wonder what you would have done in your life. The people you would have met, the lives you would have changed over the years. We need to tell you that you have changed lives, and are and will continue to. Not only in the three days you were here with us but throughout our lives and through acts of kindness by many wonderful people. We wish you could see all the beautiful acts of kindness done in your memory. We imagine you smiling, and we wonder what your smile would have looked like. We think about how it would have changed from a big cheeky toothless grin to a mouth full of baby teeth, to a big smile from ear to ear with your first tooth missing.

 

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We look at life with a greater sense of meaning because you were in it and continue to be in our hearts. We would give it all back in a second though, if it meant you could be here with us.

 

We will always miss you and love you every single day of our lives.

 

Having you Gavin, as our son makes me one proud mother and Adam one proud father. And we will talk about you, honor you, remember you, love you, miss you and grieve you until the day we see you again.

 

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Today, the 26th of January, is your first birthday Gavin, and today we are honoring it and your life. You will be remembered. You matter and always will. You will be loved. Forever and always sweet boy. We love you and miss you deeply.

Love, your mom and dad

 

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Posted in Uncategorized | 2 Comments

December 22, 2014

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Exactly one year ago today, I was happily washing and folding your baby clothes. I was excitedly awaiting your arrival. I took this picture of one of your drawers to send to your father at work, letting him know how much of each size we had for you.

One year ago today, I was picturing what you would look like in all the adorable clothes we have for you. Wondering if we had enough newborn sizes for you….wondering if you would even fit into those newborn sizes. Everyone always thought there were two of you in there. I smiled and lovingly gazed down and rubbed my growing belly as I thought, “my sweet son…you’re one healthy boy.”

One year ago today, I finished organizing your nursery.

One year ago today, we were ready to bring you home.

Exactly one year ago today, I was smiling ear to ear as I recorded this video of you moving about. I loved watching every time you moved. You were so strong. I cherished every moment when I was pregnant with you, knowing those moments were soon going to end, and new ones would begin when I could finally see your beautiful face.

One year ago today, I was watching your kicks in amazement, as I imagined just how strong your kicks would be when I could finally hold you in my arms. I imagined if you would have my nose or your father’s eyes. We would play guessing games of how much you would weigh and how long you would be.

One year ago today, I was filled with endless possibilities of all of our hopes and dreams for you.

 

One year ago today, I did not know just how much my life was going to change. I did not know devastation and complete heartbreak. I did not know that life was unfair. I did not know deep pain.

One year ago today, I was completely innocent to just how cruel life can be.

One year ago today, I did not know you would never wear these clothes that were meant for you.

One year ago today, I thought my life was going to change because you were in it, not because you had left it.

Today, a year later, your clothes are exactly how they are in this picture.
A memory frozen in time…paralyzed…from before our world stopped.
Still frozen a year later.
Still neatly folded.
Untouched.

There should have been so many changes in that drawer by now. I should be putting size 12 months in your dresser drawer today. I should be wrapping your first Christmas presents. I should be excitedly waiting for you to open your first present from Santa.

Instead, I write. Silence fills the air. No joyful Christmas music playing in the background. No laughter from you-my sweet boy. No tears for me to wipe away. No first steps for you to take. I write about you, my beautiful son. I write about our time together and the time since it has stood still. I write about just how painful this time of year is without you here in our arms. What was supposed to be your first holiday season is now our first holiday season without you. A time where many truly get to feel it’s “the most wonderful time of the year,” while we bravely face each day feeling it is not. You will always be missing. Today, I look out my window and see a cold winter day, overcast and lightly sprinkling…exactly like the day I left the hospital without you in my arms.

There will always be this parallel universe of what is and what should be. Silence replaces the sounds I so desperately want to hear. Loving and missing you, my beautiful boy. Our love and our bond is one so beautiful and strong. And nothing can ever take that away.

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Posted in break the silence, grief, holidays, holidays and grief, infant death, pregnancy and infant loss, Uncategorized | Tagged , , , , , , | Leave a comment

The C Word

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October 27th-7 weeks after my D&C surgery

I was looking up how long after a miscarriage should a pregnancy test show up as negative. Meaning the hcg is out of your system. It said 3-4 weeks usually. I wanted to see if it showed up as negative as there was no way I could be pregnant. And with PCOS, it’s completely normal to be irregular and have 3 months in between each cycle. When I saw it said positive 3+ weeks, I knew something was wrong. Little did I know just how wrong it was going to be. I called my OB and asked for an hcg test.

October 28th-

They called back and said my hcg was abnormally high and that it was comparable to someone who was 6 weeks pregnant. They said to get an ultrasound. They thought a possibility was that I could be pregnant, but I knew that I wasn’t.

I was able to be seen at a new perinatologist’s office later that day. As the ultrasound technician was looking around she was measuring different things. I thought maybe it was extra tissue that was left over that was missed. She said, “there’s something in there.” When she left the room I called Adam. The appointment was so last minute and I didn’t think to tell Adam to leave work when I did. I told him something is wrong. They are going to tell me something really bad. That it’s not just tissue left over.

When they took me into the perinatologist’s office, I sat down and directly in front of me was a tissue box. Oh no… This can’t be good. I heard the doctor outside the room and tried to make out the words he was saying. I heard the word “urgent” and I was starting to panic. This is not good. What’s taking so long. After 25 minutes of waiting, he finally came in. He sat down and was exchanging pleasantries. I asked him abruptly, “do I need to get a hysterectomy?” He said, “we’ll get to that.”

My heart sank. Panic began to set in. My hands were cold and clammy as he told me that I have Gestational Trophoblastic Disease. He went on to say how rare it is and just because you have a Triploidy pregnancy, doesn’t mean you will automatically have this. It’s caused from a partial molar pregnancy, my second pregnancy-which was not diagnosed. The Triploidy is evidence that there is an abnormal pregnancy. From what I understand is that Triploidy happens in all partial molar pregnancies, but not all Triploidy cases are partial molar pregnancies. Basically what all of this means is that I have tumors growing in my uterus, that could be cancer and could spread to other areas, such as your lungs or even your brain. The largest tumor was about 4.5 centimeters and almost touching my uterine wall. If it touches the uterine wall, it is much worse.

The perinatologist told me it’s very urgent that I get this treated ASAP and that it is fast spreading. He said the treatment plan would be most likely another D&C with chemo or a hysterectomy with chemo. I was in shock. I felt as though I needed to cry but my brain was so busy trying to process everything that there were no tears. Hearing the words cancer, chemo, and hysterectomy is scary. I thought we had reached our limit of how many devastating things that could happen in a short period of time and now this? We have had far too many of the most difficult days of our life. With the unexpected death of our son Gavin in January, to the loss of Skyler in September, to tumors, cancer and chemo. Now this doctor was telling me that there is a chance I could never carry a baby again? That there is a chance that whatever ounce of hope we had left will be taken away permanently. That there is a chance I have cancer.

As Adam was driving up I called him again with the awful news. The doctor told me to wait in the waiting room so he could come up with a plan of which hospital I was going to go to after leaving his office. I was sitting there surrounded by happy pregnant women, trying to hold back tears. I decided to step out into the hallway, let the tears flow and wait for Adam.

When Adam and I went back into the doctor’s office, he told us that he could get us in to see a gynecological oncologist on Tuesday, November 3rd. I told him, I thought you said it was urgent and fast spreading and I needed to go to a hospital after leaving here. He said he spoke with the oncologist and said that unless I had extreme symptoms, that Tuesday would still be ok. But in my mind it’s 6 days. Six days of waiting-sitting with knowing what I know. Knowing there are tumors in my uterus that are almost touching the wall and it’s fast growing. Knowing that I could have cancer. Those next 6 days were brutal and torture and all we could do was wait. Wait while I thought of all the possibilities that could happen. But most of all fearing the worst, that I would never be given the chance to carry a baby again and that I have cancer. Those 6 days were of waiting were extremely difficult, and that was only the beginning.

Tuesday finally arrived, and the gynecological oncologist first suggested another D&C and then chemo. But after looking at the ultrasounds, he said that the risk of a hysterectomy is very high due to a thin part of my uterine wall. He recommended to start chemo injections and see if my hcg levels go down and if it works, continue on that treatment. If it doesn’t work, I would have to get the D&C and chemo after. He said he would consult with his partners and get back to me that afternoon, as my case was so “unusual.” He said there should have been a pathology done and most patients know they have a partial molar pregnancy and gestational trophoblastic disease before the first D&C. He said to get a ct scan and I asked if I could get one now since I was purposely fasting just in case they could squeeze me in that day. I was able to get in to do the ct scan and left to wait for a call that afternoon.

After waiting anxiously for a call that afternoon, I ended up getting that call the next morning. He said that he and his colleagues agree and recommend to start chemo but he wants to see my hcg and ct results. He called later with the hcg results. A week before they were 10,313. Now they were 5,708. He didn’t know why there was a significant drop, but that it was good it didn’t go up. He said to do a blood draw on Friday to recheck my hcg so the results would be ready by Monday to see where I was at before starting treatment. My ct scan came back as negative for spreading to other areas. They saw a hypervascular mass in my uterus which was basically already known from the ultrasound.

On Monday, I called to find out an hcg was not done. There was a blood test done to check to see if I was able to start treatment, but not an hcg which was the reason the doctor told me to get my blood drawn on Friday. The doctor called and apologized many times and said he knows this probably doesn’t make me feel confident in everything. He was right but I was glad they were able to add it onto the order and have a stat reading. My hcg was 5,402 so it wasn’t a significant drop and it was recommended to start treatment later that day. The treatment plan is a chemo injection Monday-Friday every other week. With blood draws every Monday to check my blood count and HCG. The cycle will be repeated until my HCG is less than 5 and then there will be one more month of treatment. The chemo injections I’m getting are not as strong as the IV kind. There are less side effects. You are will not lose your hair. The main side effects are nausea and vomiting, and mouth sores from low blood count. Bleeding and cramping would most likely happen.

The reason they treat everyone who has Gestational Trophoblastic Disease with chemo is because there is abnormal tissue that grew into tumors and will continue to grow. Chemo is what stops it from growing and gets rid of it, no matter if it is cancer or not. The only way to know for sure if I have cancer is to start out with a D&C. And since I had one recently and with the high risk of a hysterectomy, it was something I did not want to do, as well as the doctors.

On Monday November 9th, as I walked into the room where chemo was given, and saw the patients sitting by their IV bags the first thought I had was, “shit just got real. This is really happening.” And although I was getting an injection of chemo and not IV, I was still scared to start treatment and thought that if this treatment for some reason doesn’t work, that could be me. They told me to find a seat. I looked around and noticed some women talking to each other and some were sleeping. I was the youngest one there. It broke my heart to see so many people going through cancer treatments. The doctor came over and asked, is this your first time? It was probably written all over my face. I felt like a lost puppy. I was given all the necessary paperwork… sign here, here are the possible side effects, here’s the estimated cost and what you are responsible for. The end date all depends on when my hcg levels are below 5, then it’s a month longer of treatment. Most likely it will be a few months, possibly the end of February. The gynecological oncologist also said I would most likely have another D&C after treatment with it being a much lower risk of a hysterectomy. For me though, it isn’t over until it’s over and I don’t feel I can have complete relief until everything is done. My first chemo shot didn’t hurt at all. It got sore as the night went on and I would soon realize the injections were going to hurt more as the week progressed. Switching arms helped but then I noticed my blood pressure being taken would start to hurt as both arms were given injections with the squeeze from it being taken.

11/12/15- Night 4 of my first week of chemo

I started to notice a pattern which made sense. My injections were at 3pm and I saw my symptoms were understandably worse in the evenings and at night. During the day I didn’t feel as bad. At night, my heating pad became my best friend…a close second to Adam. As Adam was there to help in anyway possible, his lower back rubs really helped. Along with cramping, there was also bleeding. I’ll spare you the details but what happened that night was a big scare as we were contemplating needing to go to the ER for massive clots and a lot of bleeding. We ended up going to the doctor the next day. My blood count and hemoglobin was checked and the doctor saw everything was in normal range and an exam was done and everything looked ok. It still didn’t make what we experienced any less scary, but she gave us information about when you should go to the ER as soon as possible. We are now constantly on high alert for something to indicate we would need to go.

By the end of my first week of chemo, the exhaustion had set in. The mouth sores had started from my lower blood count. The side effects were scary. In the beginning of the week, I thought, “first round of chemo, let’s do this! Bring it on!” And towards the end it turned into, “ok I’m ready for this to be over. I know there is still much more to go, but please I just want it to be done.” I knew those feelings would come back around again when another treatment week would start.

On Monday, November 16th I returned to work after being off for 3 weeks. My return was short-lived with needing Tuesday and Wednesday off from a 101 fever I had Monday afternoon that extended until Tuesday. I was put on a z-pack on Monday. I had a chest x-ray done because I was coughing a lot and it showed fluid in my lungs, so a stronger antibiotic was prescribed. Three days later after taking this antibiotic, I broke out in hives all over my legs from an allergic reaction. I stopped taking that, and finished the z-pack. So it has been a rough journey so far. I returned to work Thursday and was nervous going back with a coughing sneezing preschooler at every turn. With chemo, your immune system is not as strong.

I was called with my hcg results from Friday and then again from Monday and they were lower. To recap, I started at 10,313 on 10/27. It went down to 5,708 on it’s own on 11/3. On 11/6 it was 5,402. That number is the last hcg check before treatment. After 4 days of treatment and a week later on 11/13 it was at 2,880. And on Monday, a week after treatment it was at 1,742. On 11/23 my hcg was 383. They are going down, which means treatment is working. There could be a point where it plateaus and takes awhile for it to get to less than 5. I need that to not be the case, because every time it is not less than 5 from here on out, it adds another 2 weeks to treatment. So now, it’s continuing on and getting through the chemo treatment plan, managing the side effects, and waiting. Waiting for my hcg to be less than 5. Waiting to see if I will need another D&C. Waiting to see if I will end up with a hysterectomy.

We are upset and frustrated that this was missed. It has been told to us by many doctors that a pathology should have been done and that it’s standard practice. We said do any and all testing the day of the D&C. Had a pathology been done, we would have known a month and a half earlier that something was wrong and I would have already been on treatment. This happened with Gavin with the pathology not being done on the placenta when it should have been.

I asked the perinatologist why and he said there was a “miscommunication and the pathologist said he would take care of it but didn’t. The pathologist said it wasn’t done because they didn’t get an order.” He said ultimately it falls back on the surgeon. I talked to the surgeon and he said he always gives verbal orders to the nurse on what happens as far as testing. It is standard procedure to have a pathology done, but the nurse didn’t fill out the form for the pathology. The nurse just filled out the form for the genetics testing. He apologized many times and said this has never happened in the 15 years he has been doing D&C’s. This of course didn’t make me feel any better that of all the D&C’s that were done correctly in 15 years, mine was the one that wasn’t. He said if the pathology was done like it should have been, I could have started treatment much earlier. He also said he was trying to get policy changed in his department so that a pathology will be done regardless of if there is a form or not to prevent this from happening again. It turned out the hospital still had everything to do a pathology now. On 11/9 I was called with the results and of course, the vital information that was needed almost 2 months ago came back as positive for partial molar pregnancy. This information didn’t help me now, but proved it would have been extremely important to know when we should have known.

I also talked to the perinatologist who had ordered the D&C. He was the one who called to give us the results from the genetics test. What is hard to understand is that if a pathology was not done and it is a standard practice, the perinatologist who received the genetics report should have noticed the pathology was not there. After asking him why it was not noticed there was no pathology, he was trying not to answer the question. He kept referring back to why the pathology was not done. So after explaining to him again the question I was asking, he passed it off on his colleagues saying, “I’m in and out of the office and when I’m out of the office, my colleagues make calls for me when reports come in. So I assumed that it was done by them.” I told him gently, “the word I have heard recently the most is ‘assume’ and I feel that shouldn’t be done when it comes to someone’s health. It is very scary to hear a doctor assumed that things were taken care of, especially when they were not. It can’t just be assumed. It needs to be checked on and made sure it was done, especially if you are the doctor who oversaw everything about my D&C. It’s very hard to trust doctors when things are not done when they should have been and they don’t take responsibility for what has been done and pass it off on someone else.” He said, “I don’t know what to say. I feel bad that this happened and that it delayed treatment, although the treatment would most likely still be the same.” I said, “we don’t know that. If we would have known earlier there may not have been a high risk of a hysterectomy because the tumors wouldn’t be as big.”

Had the pathology been done, I would have been monitored as soon as those results came back, which is typically 3 days after surgery. My hcg levels would have been monitored. I would have started treatment right away. The fact that there was Triploidy meant that it was an abnormal pregnancy. No one told me to follow up. The perinatologist I saw 3 weeks after my D&C just told me to come back when I’m pregnant again. When the perinatologist called us with results of the genetics testing, he just told us and that was it. It frustrates me beyond belief that doctors are not doing what they are supposed to do. Their “miscommunication” and “assumption” (as they put it) is my health. It sounds so wrong and terrifying to refer to the fate of someone’s health as a miscommunication and assumption. We trust these doctors with our health, practically handing our life over to them, and things like this happen. And there are no consequences. It was only because I took the initiative because I was curious about if I would have a negative pregnancy test that I found out any of this. And that is really scary.

Some days I feel like I can conquer this and others, I just don’t feel that strong. Not to say we won’t get through this. But trying to adjust to the treatment plan until this is completely done, and going through the treatments is exhausting. It’s really taking everything I have to get through this. We will get through this and we will adjust. One day at a time, one hour at a time, one minute at a time. That’s all we can do.

It has been extremely difficult during the holiday season that should have been Gavin’s first, but instead it’s our first holiday season without Gavin.

This Thanksgiving, we should have had Gavin in our laps telling him, “You are 10 months old today. We are so thankful for you.” This type of loss is not just a one time event that you “move on” from. This type of loss stays with you for the rest of your life. To lose your child or children is to lose your future and what should be. I still have trouble with the word “hope.” I still feel I don’t really have it, because I feel I can’t really leave it all up to hoping it will all “work out”. Because it hasn’t. And it doesn’t. And sometimes…or many times, horrible things happen to good people. I may not feel strong because I don’t feel I have a choice. But I am a fighter. My husband is a fighter. We are fighters, just like our son.

If we have gained any sort of knowledge though all of the pain, utter heartbreak, and devastation of what we have been through this year and are continuing to go through, it is to not take life for granted. Though I would much rather not have any of this knowledge if it meant Gavin was here with us today. We know that anyone in our life can be taken from us at any moment. We know loss. And not just any loss. The death of our child. Our 3 day old baby. Our second baby that would have been due this April.

Let me clarify that I am not saying we are forcing ourselves to have gratitude. Because gratitude does not erase grief. And telling people who have faced tragedy and the death of a child to have gratitude is another platitude that does not help. That is not what I’m saying. This is not directed at those who are grieving.

Since Gavin died, when we see people with their babies or kids, we think just how lucky they are. Some may not even know it. Hug, love, and appreciate your children. Let them know you are there for them. Because there are many people who are unable to do that. Be thankful that you have a baby that will not stop crying, because your baby is still there with you and there are many who would give anything to hear the sound of their baby’s cry. There are many who would give anything to be up all night with their crying baby but instead are up all night because their baby is not with them. Please do not let the small things in your daily life turn into complaints. Because some only wish those small things could be their biggest complaint. Please appreciate your health, because you never know when it will be compromised.

Please, appreciate what you have, because there is someone, somewhere who would give anything to have it.

Posted in chemo, gestational trophoblastic disease, grief, miscarriage, pregnancy and infant loss, Uncategorized | Tagged , , , , | 2 Comments

The Nursery

Leaving the hospital with empty arms is something no parent should ever have to do. But it doesn’t just end there. You leave with empty arms and come home to an empty nursery, with an empty crib, and an empty heart.

After kissing and hugging our son for the last time, family members were gathering things together to leave for the start of day one without our son. Day one was the absolute worst day of our lives. It started by holding our son as he took his last breaths. I will never forget the moment the doctor came in and used a small stethoscope to let us know our son did not have a heartbeat anymore. That was the moment I felt as though my heart stopped beating too.

One of the most difficult moments that followed was when we hesitantly gave Gavin to one of the nurses. I will never know how I was able to do that. It takes my breath away just thinking about these moments. Another nurse came back in and asked if we wanted to see him one last time. We nodded yes and kissed him on his forehead and told him how much we love him. As she turned to walk away, I looked at my son not realizing that those were the last seconds I was ever going to see his beautiful face. It was in those seconds and the seconds after as he was taken away, that a huge piece of my heart left me to be with Gavin.

All I could do was sit and stare at the wall as tears rolled down my cheeks. When I was told it was time to go, the nurse came over to give me a stuffed owl. With tears in her eyes, she said, “this is for you to carry in your arms as you leave the hospital, because no mother should ever leave the hospital with empty arms.” I looked down at the owl, hugged and thanked her. I sat down in the wheelchair that was waiting for me and that’s when it all finally hit me.

I am leaving the hospital with empty arms. My baby is not coming home with me. My baby doesn’t get his first car ride home. My baby doesn’t get to be with us and see everything that was ready for him. We have everything ready for him. He needs to see it.

The walk out to the car was a long and silent one. My husband lovingly pushed my wheelchair out and I clenched onto that owl, knowing all I wanted was to have my baby there instead. I remember the complete shock from everything that happened in the last 64 hours and everything we saw our son go through, thinking, did that really just happen? Walking into our empty house and plopping down on our bed is where I finally lost it. I cried and screamed in a way I never have before. It was day one. Day one of living the rest of our lives without our son.

In the days and weeks that followed, my time was spent in bed or on the couch. Along with the unbearable emotional pain, there was also the overwhelming physical pain. Recovering from a c-section and milk coming in without my baby in my arms made everything that much more difficult. It wasn’t until two months later that I walked into the room I had been avoiding-Gavin’s nursery.

One of the first questions I was asked by an acquaintance was “what did you do with his nursery?”

I found this to be a little strange and somewhat insensitive that this was the first question someone would think to ask me. Not “how are you feeling today?” or “I’m so sorry for your loss.”

Still, I try to give people the benefit of the doubt, as I have had many things said to me by well-meaning people that have come across as insensitive and off-putting. I know people don’t say things to intentionally hurt me. Maybe some people let curiosity take over. I did manage to say, “nothing.”

The nursery is a deeply painful topic that is difficult for me to talk about.
Which is why I am.

Since Gavin died I have been in his nursery twice. Two times in the past almost nine months. Once in March and once in April. And I cried my eyes out for hours each time. I guess now I can say three times from taking the “after” pictures. I can’t really sum up a one sentence answer as to why. I guess the logical and short explanation is because it’s too heartbreaking. But then I think, well everything about my son dying is heartbreaking. I need to feel the pain and heartbreak and not push it aside. I don’t feel that I have pushed any feelings or pain aside. I’ve had enough pain and heartbreak without going into his nursery. And it’s more complicated than that.

When I think about the “before” and all of the joy and excitement, I think of all of the time spent in that room. We were so excited and waited so long to be able to turn an ordinary room into a beautiful nursery. So much so that we completed his nursery before I was even halfway through my pregnancy. We looked at his nursery as the future. When before, it was just a plain regular room of the past. We had a lot of time to go into his room and lay on the floor or sit in his rocking chair. Time was spent in his room talking about our wonderful future as a family. It was our favorite room of the house. We made sure that everything was perfect and in its place. There was so much love in that room.

What once was a bright, cheery, and happy place-filled with hopes and dreams-is now dark, empty, and shattered. Everything is no longer perfectly in its place. Everything that was set up throughout the house is now scattered about in his nursery, and the door closed.

All of the hopes and dreams-gone.

All of the laughter and smiles from the many conversations in that room about how life was about to change in so many good ways-gone.

The changing table, where I once pictured myself singing to Gavin to distract him from the many disastrous blowout changes I would happily be doing-empty.

The crib we picked out that his dad and grandpa so carefully put together-empty.

Gavin never got to see his beautiful room filled with so much love. He never got to use the many things we have for him. All of the adorable outfits washed and ready for our son to wear are still neatly folded in his dresser drawers. He will never get to wear them. Knowing this just completely breaks every piece of my heart.

Our son’s nursery hasn’t been touched besides putting all the things set up for him from around the house in it. So it may look like nothing has changed, that his nursery is still the same. And while the paint is still the same color and the furniture hasn’t been moved, that couldn’t be further from the truth. So much of his room has changed. From the very feeling I get when walking into it, to the crib, to the pictures on the wall, to the decals. Everything looks and feels different. I just see emptiness and broken dreams. Our future together as a family is gone. I see what should be and what is- all in one small 10 x 10 room. In many ways, my son’s nursery is much like how my heart is now.

And all I want is what should be. All I want is something that can never happen. To hold my baby in my arms as I rock him to sleep in that rocking chair that took hours to pick out, in a nursery that was created by his mother and father with so much love, who love him more than anything in this world.

Before:

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After:

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Posted in break the silence, grief, grieving mother, infant death, infant loss, miscarriage, multiple losses, nursery, pregnancy and infant loss | Tagged , , , , , , , | Leave a comment

The Question

“How is your baby?”

This is the seemingly innocent question I have gotten the most since Gavin died. It has been asked at work more times than I can count. It has been asked from fellow teachers as well as parents. I am a substitute preschool teacher for an organization that covers five different districts with over 50 classrooms. Many teachers knew of me as the pregnant sub who was so excited and happy to meet her son. Now I am the sub who will cry at any given moment.

It’s difficult to put into words the emotions I feel when this question is asked. On one hand, I want and need to talk about my baby. I want to share his life with anyone who will listen, no matter how many tears come. It is so important to me to talk about Gavin and to tell people that he was here and still is in my heart. It is so important to let people know he matters.

On the other hand, this question catches me off guard. Everything has been a blur during these past 8 months. So when I walk into a classroom and see the teachers I will be working with that day, I sometimes don’t remember if they know Gavin died or if I have talked to them about Gavin. When a parent walks in that I recognize from years before when I had my own classroom, or I see a parent that saw my pregnant belly, I get anxious thinking, are they going to ask me? Sometimes I try to brace myself because I know it’s coming.

The painful part of this question is not being able to answer it how I so desperately want to. I want to be able to say with a huge smile on my face that, “Baby Gavin is doing great! He is crawling now and we love hearing him babble. His smile is adorable. Do you want to see a picture?” There are so many other ways I wish I could answer this question. It breaks my heart that I’m forced to answer in a way I never imagined I would have to. That he was born, and lived three days, and then died from a stroke. I always say his name IS Gavin. His name will never change. No matter if he is living or not, his name will always be Gavin.

The part of this question that makes me feel frustrated, is that in society, everyone is taught to “expect.” Most people, including myself before Gavin died, think that you get pregnant and have a healthy baby you get to take home. We were raised to believe that everything works out when you are “expecting.” Unless it happens to them, it’s hard for people to think that leaving the hospital with empty arms is a possibility. But it happens, more often than people realize.

Yesterday, I got this question twice. One right after the other in a crowded classroom filled with preschoolers and parents. A parent and her child I had in my class two years ago, walked into the classroom I was a substitute in to drop off her youngest daughter. She came up to me and in Spanish asked her son to give me a hug and for him to ask how my baby is doing. Another teacher translated what I said happened to my son. The second person asked the question from across the room. I was sitting at a table with kids who were sitting down to eat their breakfast. I walked over to her and said with tears in my eyes that Gavin died unexpectedly when he was 3 days old after suffering a stroke. That he was full term and weighed 8 lbs 15 ounces. I also shared that I recently lost another baby from a miscarriage at 9 weeks. At that point I chose to leave the classroom. The tears were flowing and I needed to take time for myself. There were enough teachers for me to step out, as I was just support for the day.

A huge part of me wishes I would have stayed. That is a part of breaking the silence. I don’t want to feel like I have to hide or leave because I’m a grieving mother and should be able to feel my emotions as I feel them. And I feel sometimes people get the wrong impression. They think asking it reminds me that my baby died. They think they made me more sad. But I will never forget my baby died. No one will ever make me more sad than I already am by bringing up my baby. I guess a part of me was overwhelmed. I feel conflicted with the teacher quote of “leave your baggage at the door.” I don’t feel like that is possible with grief. So there is guilt with the enormous amount of pressure to act like everything is rainbows and butterflies. But there is also a big part of me that wants to use myself as an example to educate these children on emotions. To let them know it’s ok to be sad, and I am feeling sad right now. Maybe I would feel like it was more my place to be able to do that if I had my own classroom. Since I am a sub and have a different classroom every day, it comes with the fact that I don’t have the same rapport with the different kids I see each day. They don’t know me, so that one day I was in their classroom and was sad and let them see, I would be known as the teacher who’s name they may forget that cried.

There have been a few opportunities to talk about Gavin with certain classrooms of kids who remembered I was pregnant and asked where my baby was. Since talking about death to children can be considered controversial, I made sure to get the ok beforehand to be able to be honest if it was ever asked. When talking about death with 4-5 year olds, you are going in blindly. You don’t know what they know, if anything at all. The following example is one showing how in my early grief (which really it’s still early when thinking about how grief and grieving works and the rest of my life), I tried to explain death by sugarcoating it, when all I really needed to say was exactly what happened.

One returning 4-year-old child I had in my own classroom a year prior to being pregnant with Gavin, asked me where my baby was. I was a substitute for the day and it was my first day being back in a classroom after Gavin died.

I mistakenly thought saying “he’s not here” would be enough.

That was (understandably) not enough.

She asked, “well where is he?”

I said, “he is in Heaven.” Most people who know me know I’m not a religious person. I thought by saying that, it would be a quick and “simple” way of explaining death.

She asked, “what’s that?” Oh boy. I thought, maybe this was not the best response. As now along with explaining death, I will need to explain religion. Which I don’t have enough background on to be able to explain it very well.

I said, “he’s up in the sky.”

She responded with, “why?”

I finally said what I should have said in the very beginning which was, “he died.”

She turned to her friend and whispered, “aww her baby died. That’s so sad.”

That was enough.

Not the roundabout ways of saying something really sad and devastating happened. Just simply the facts. Gavin died. Yes it’s so sad. I will no longer try to make death sound like something it isn’t. Is it hard for most people to talk about? Yes. But that doesn’t mean we shouldn’t. It’s a part of life and through that conversation, I learned firsthand the importance of being honest and direct when it comes to talking about death. It’s part of the many reasons why I want to talk about Gavin and need to. I don’t want to have the conversation end because it starts by saying my son died. And next time someone asks me the difficult question of, “how is your baby?” if it is not the best time (at the start of the preschool day in a crowded classroom) I will make sure to say, I want to share more about my son and can talk more at a different time if you are free.

I have so much to share.

And while I don’t have the millions of pictures or stories of exciting milestones he is reaching, I do have some amazing stories about the many selfless acts of kindness being done in loving memory of my son. I do hold those so close to my heart, as it shows me the many ways Gavin has changed and affected people’s lives. I would trade in everything and anything though to have Gavin here with us. I would give anything for that to be my reality.

I do have the very few pictures of him to share. The ones that show how his baby toes curl under exactly like mine do and that he has his dad’s lips. The ones that show his perfect nose and adorable mullet hair. The love and admiration for my son will never go away. As completely heartbroken as I am, being a proud mom who loves her son will never ever go away.

I do also have many times of deep heartache, pain, and sadness. It’s ok and necessary to feel this way. During these times, please sit with me and share this sacred space. Please listen to my pain. I’m not sharing for advice. Know that although I know people are trying to comfort and have only the best intentions, the sad truth is that no amount of advice will ever make everything better. The thoughts in my head feel trapped and they need to find a way out in a safe space. Ask me how much my life has changed since my son died and I will share with you.

I will tell you about how living the rest of my life without my son is not an easy task by any means. The rest of my life will always be filled with thoughts of what should be. I will always miss my son and wish he was here.

I will also tell you about the loss of our second baby, Skyler, from a miscarriage and how it has added to our pain.

I will tell you about how naming Skyler was so important because we would have-no matter what-if he was 9 weeks gestation…12…24…36. There was already a connection. We will always wonder what he would have looked like and what life would have been like with him.

I will tell you about how we never got to find out because of a rare chromosomal abnormality called Triploidy. Skyler had 69 chromosomes instead of 46. There is a 1-2% chance of Triploidy happening in all pregnancies. It’s not genetic. It was “just another fluke thing” that happened. But to us, it was so much more.

I will tell you how I’m starting to feel like the world owes us something. That these odds are so low and everything is so rare, yet these rare things happened to our babies. The odds have not been in our favor.

I have so much to share. And although the question of, “how is your baby?” or even “how many kids do you have?” does catch me off guard and is difficult to answer, I will continue to answer it. I will always be open to share about Gavin, Skyler, and our lifelong journey with grief. I will share to help people understand. To help break the silence and let people know they are not alone.

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Posted in break the silence, grief, grieving mother, infant death, infant loss, miscarriage, multiple losses, pregnancy and infant loss | Tagged , , , , , , , , | 1 Comment

Our Journey with Grief: When the Death of One Baby Becomes Two

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As I sit here staring blankly at the title of this blog, knowing what I’m about to write, there are nothing but tears. As there have been far too many these past three weeks, as well as these past 8 months. Oh so many tears. And not the silent kind.

January 29th 2015-

“I’m sorry, he’s not going to make it.”

Gavin John Drinovsky
1/26/15-1/29/15
8 lbs 15 ounces
20 inches long

September 9th 2015-

“I’m sorry, there is no heartbeat.”

Skyler Drinovsky
9/9/15
9 weeks 1 day gestation
.08 ounces
.93 inches long
Due 4/12/16

I looked over at the ultrasound technician in disbelief. This cannot be happening. She said I was measuring correctly so it must have happened the day before or that day. I could feel my heart breaking into another million pieces. I just heard “I’m sorry, he’s not going to make it” about my three day old son just over 7 months ago. I will never forget exactly how I felt and what I did in those moments after I heard those devastating words about Gavin. And now I was hearing these horrible words that left me feeling like I was unable to breathe. Did I really just hear her correctly? She left to go find the doctor with the med student I had regretfully allowed to come into the room. When the doctor came into the room, so did that med student. Through my tears I could only get out, “just you,” to the doctor. He confirmed what the technician said and told me, “I’m so sorry,” while I sat there in tears.

This happened at a routine blood draw appointment that was two weeks after we saw a strong heartbeat. Adam was not there because it didn’t cross our minds that this appointment could end like this. We should have known. And I was left alone in a dark and cold ultrasound room while they tried to find an available appointment and gathered instructions for the D and C surgery I could choose to do. I called Adam at work the second the doctor left me to tell him in between my inconsolable sobbing and gasps for air, that there was no heartbeat anymore. Now there was a decision that needed to be made. Wait what could be weeks of torment, not knowing when my body would react on its own, and need to collect our baby for testing. Or endure the physical and emotional pain of the surgery to remove our baby from where it should have stayed for a little more than 7 and a half months.

I didn’t want to have to choose either option but I knew there was no way I could choose the first one. I could not just sit there and wait for it to happen and then collect our baby into a container. I didn’t realize at the time what the second option meant. It meant needing to be prepped alone, scrubbing down my body, and getting into another hospital gown. It meant being back in a hospital, prepped for surgery again, and being wheeled back into another operating room alone. It meant waking up without Adam by my side until they brought me back where he was allowed to be. It meant having painful flashbacks from the trauma of losing Gavin. It meant sitting in another wheelchair, being rolled out to a car once again with empty arms.

September 10th 2015-

“I will be the one to remove the products of conception and I’m going to go over the risks of your surgery today.”

“This [miscarriage] is very common. The odds are in your favor that you will go on to have another. Many women go on to have healthy babies.”

These are the words echoing in my head that no parent should hear after the death of another child. The “products of conception” was another life lost. It was a baby that should have grown safely for 9 months and been brought into this world to have a long life. It was so difficult hearing medical terminology on the day of my D & C surgery about another life that was taken from us. We saw our baby’s heartbeat just two weeks before. Hearing miscarriages are very common does not make us feel better. It does not bring us comfort. And no, the odds have not been and are not in our favor. I told the young, well-meaning resident who knew my history, that what is not common is for my 3 day old son to have a stroke and die. And many women do not go on to have healthy babies.

I am not the friend of a friend who went on to have two living children. There is absolutely no guarantee I will ever be in the category of the “many women that go on to have healthy babies.” And this baby mattered. This baby can’t be minimized and brushed off by saying you can have another. Having another baby does not replace this one and will not make this terrible wrong, a right.

Many doctors and health professionals seem to not have the proper training when it comes to the death of a baby. I have been told so many clichés. This is not ok. When I told my former OB that I was pregnant, his response was, “I’m so happy for you that you can move on from your last pregnancy.” No. No. No. That “last pregnancy” resulted in our son Gavin who was here, and matters, and he died. A new pregnancy or baby will never replace him and make everything better. Living or not, you never “move on” from your child. You never “move on” or “get over” the death of your child. They will never be forgotten and will always be a part of you. To which he replied “I didn’t mean to be flippant with you. I just know that delivery day will be the best day of your life.” I pictured him inserting his foot in his mouth even more. I already had the best day of my life meeting Gavin which was quickly overshadowed by the heart-wrenching pain and devastation of his death. And the delivery day would not be all smiles and joy. It would be scary. We would just be waiting for something horrible to happen again. I told this OB “if it even gets that far.” And I am so unbelievably sad and angry that this proved to be true. “Oh it will. Just have faith.” he said.

Faith. Hope. All of that is lost.
The tiniest bit of hope we had left is gone. It died when we were essentially told, you are now the mother and father of two babies that died. No matter how far along I was, this baby is ours. There was a heartbeat and then it stopped. How cruel to have seen a heartbeat only to be told it isn’t there anymore.

Pregnancies-2. Living children-0.

When we found out I was pregnant, a huge layer of fear and anxiety set in on top of our grief. We were cautiously optimistic and I would sometimes talk about the future as if everything would be ok. We even thought it wouldn’t be fair if something else were to happen again. And now we feel so foolish we thought this way. We know too much about the many things that can go wrong. And now we know even more so and are faced with this painfully harsh reality. No matter how much you know, you are still never prepared for it. The rug was ripped out from under us with grief’s weight bearing down on us. Leaving us unable to catch our breath.

This. Is. Just. Not. Fair.
This cannot be happening.
This did not just happen.

I asked for another ultrasound right before my surgery. I just could not believe this was our reality. He was measuring exactly where he should be, so it was difficult for me to believe that his heart was not beating. They agreed, although they were still prepping me for the inevitable. The doctor showed us on the ultrasound where there should be a flicker. I wanted so desperately for my eyes to see any sign of a flicker. I wanted so badly for the other ultrasound machine to have been faulty and to miraculously see a heartbeat this time. I just kept crying and saying no no no. In between my sobbing, I managed to look down and say I’m so sorry as I held my stomach.

And now our grief journey has taken us unwillingly down the extremely difficult path of multiple losses. A path that feels like it has taken us right back to where we started, but with a new layer of grief, another death with no sign of hope. We are empty. I am empty in so many ways. We feel the raw, freshly opened and deep wounds. Hope is a word that has very little meaning to us now. We have been robbed twice. Our babies were robbed. This was not the life they were supposed to live. Three short days -63 hours- was not the life Gavin was supposed to have. We feel even more defeated, hopeless and confused. There is so much pain in our already broken hearts. Our hearts are so incredibly heavy. We don’t understand. We have no idea where to go from here. I’m lost and trying to learn who I am now after the death of our second baby. I don’t know how many times we can be kicked down before we feel there is no way we can get back up again. We are just so sad and feel very isolated and alone. Life can be so cruel and unfair.

“At least you know you can get pregnant again. That’s so good you got pregnant.”

“At least it happened early.”

These are a few things I have read that well-meaning people have said to mothers who have lost their subsequent baby to miscarriage. There is no “at least” when referring to the death of a baby or child. Ever. No matter what age. No matter how far along. It’s not a good thing I got pregnant again if the end result was my baby dying. There is nothing good about our baby’s heart not beating anymore at 9 weeks 1 day gestation. It’s unbelievably heartbreaking and devastating to go through the death of one child. Multiple deaths are unimaginable and now it is our grief journey. Sadly, it is for so many. I didn’t realize just how many until recently, and it breaks my heart to know we are not alone.

When I think of the grief journey from the death of a child, I think of a house that became a home, only for it to be shattered into a million pieces by a tornado you never saw coming. Let me clarify that I am in no way referring to Gavin or Skyler as the tornado. It’s the grief from the deaths and aftermath that is the tornado. It’s not just the deaths you grieve. It’s the lifetime of memories and milestones they will never get to have or reach. You go through your life wondering what it should be like. You see the damage and feel the unbearable pain from the toll it’s taken. You take each day slowly trying to pick up the pieces and build a different house. A house you never wanted to build. A house that will never be complete. A house where the building of it never ends. And you try to make it feel like it is now your home.

Some days you feel like you are picking up many pieces. Some days the weight of each piece is just too much. They are broken and look completely different now. They will never be the same. And you don’t want them to be. Or maybe some days you secretly wish they could be the same and that you could somehow have that innocence back-but you know that is not a possibility.

Some days you may come across a brand new home. A home where everything is neatly and perfectly in its place. Maybe you slightly envy that home, and you wish no harm to it, but you know that there are no guarantees. And you wish it the best as you turn to walk back towards your reality.

Some days you cannot even pick up one small piece. And that is ok. Some days all you can do is sit there on top of your huge, never ending, and heavy pile and look at all the tiny pieces with tears rolling down your cheeks and think, where do I go from here? You look at some pieces and know there is no place they will fit now.

Some days grief knocks the pieces you built back down. New forms of grief can happen at any moment. And although you know this, nothing can prepare you for it.

Some days you want to throw away all of the pieces and never look back. But you remind yourself that is not an option.

Maybe some days you find a beautiful piece and hold it close to your heart for safekeeping. Those days feel so few and far between. And maybe you don’t see any for a very long time. And that is ok. Hold on to those days and those moments but more importantly, hold onto all days and all moments, as they are a part of you now. See all pieces; feel each emotion as you feel them. They are all valid. Your child or children that died matter and always will. Gavin and Skyler, you matter and will forever be in our broken hearts. We love you so much.

There is a reason for me writing this. There is a reason for me putting it all out there and being true and honest to how I feel. I can’t sit here in silence, in this moment and pretend everything is ok when it’s not. It’s so important to break the silence and talk about miscarriages and infant death. I have become comfortable with being vulnerable. And if me being vulnerable helps even one person relate or understand, then I have accomplished something. I have no idea what the future will bring. Thinking about it scares me. For as many things that I do not know, I do know that we will continue to put one foot in front of the other. I know that although Adam and I feel broken, together we are unbreakable. I know that no matter how much fear overpowers me, I will learn to not let it control me. I know that compassion, love, empathy, and support makes a difference. Because no matter what, at the end of the day, lives were lost. Our babies died. And if that fact alone is not enough to keep someone around, I have no problem letting those people go. Time is so very precious, and I don’t have it to waste. And although some have walked out, some of the most amazingly selfless people have stayed and also walked in. We hold these people with such high respect. We admire and value them for their deep level of friendship, and for everything they have done and continue to do.

-Heather Drinovsky

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“Each new life, no matter how brief, forever changes the world.”
-Unknown

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