If you need anything, just give me a call

I realize people mean well when they say this and I truly believe most people would help if you called them In reality, I’m not going to call you and ask for help. There are days I can barely get through the basic life tasks and thinking of who offered to help at some point is way more than my brain could handle. Making basic decisions feels impossible when you are experiencing such a terrible loss. In my case, I have a 3 year old that I still have to parent, and that is a challenge in itself, because he is also grieving and I have no clue how to maneuver that either. If you truly want to help someone in early loss, offer something tangible like grocery shopping, bringing a prepared meal, offer them a gift card, fold their laundry for them, walk their dog. Being able to anticipate someone’s needs goes a long way when you can barely put one foot in front of the other. Most of us know what it takes to run a household on a good day, so you can imagine how impossible that feels when you are in complete agony.

One of the best gifts you can offer a person who is grieving such a horrendous loss is to continue to help them over time. Being inundated with support, in the beginning, was vital for our survival. We could not have gotten through without the support of our friends and community. For me, once the numbness started to lessen slightly, I needed just as much help, but people’s lives were moving on. We were so fortunate to have ongoing support, but I know this is not the case for a lot of people.

I understand this reality, but it doesn’t change mine whatsoever. It goes against everything in my body to move forward without my darling child, but life does not stop when you lose a child, and that is one of the top 10 most painful aspects of this. You don’t want to move forward because it feels wrong but reality slowly starts to sink in that you will not be seeing your child walk down the hall and say, “good morning, mommy” ever again.

Parenting while grieving

11/1/2019

Having my child die was something that never crossed my mind as a real possibility. When my first born was brand new, you stare into their eyes and express your undying love for them and you think, “I don’t know what I would do with myself if you died” but if you are like me, you don’t really think it’s going to happen.Having to tell my 3 year old that his 7 year old brother died was almost as horrible as being told that there was nothing that could be done to save our 7 year old son’s life. Our 3 year old seemed to take the news as expected but we realized that he didn’t truly understand. Research says that children don’t really understand death until they are about 4.5 years old.Having to parent a child who needs you for pretty much everything and grieving simultaneously feels almost impossible in the beginning. My mind was distracted with feelings of sadness, questioning if I could have done more, shock, denial and anger that my son died. I couldn’t control when I cried and my 3 year old felt frustrated because he wasn’t always thinking about it like I was. He would throw me off guard by asking, out of nowhere, “mom, does brother still have bones?” It would throttle me to my core. Another time, we were playing play-doh and he asked me if he could make a tube like his brother had in his mouth at the hospital. It would stun me because I never knew how much he thought about the events or how much he understood. When those topics would come up, it would painfully remind me that he does remember the trauma.We try to think about the good times as much as we can. It has been painful to think that the child my 3 year old idolized and loved, is gone. When our 7 year old first died, we were obsessively looking at pictures and videos of him and our 3 year old felt left out. We quickly reminded him that while we are so sad that your big brother is gone, we are so glad you are still here and that made a huge impact on him. It was so very true too. The only way I can get through this life is one day at a time. When I think about any regrets I have, mostly over silly stuff, but mistakes nonetheless, it destroys me. When I focus on what my forever 7 year old son doesn’t get to do, it agonizes me. I’m very early on in my journey and I’m doing the only thing I know how and that’s to take the punches as they come. There are days that the waves of grief wipe me out and I go to how much I hate that my son will never have a girlfriend or go to college. It will always break my heart.I was reminded right after our son passed that he only ever knew love and security in his life and that gave me peace beyond measure. Some kids don’t know where their next meal is coming from or are abused and that was never the case in our precious boy’s 7 short years.

People move on after a month

10/3/19

When our son died, we were inundated with support and I will always be beyond thankful. We had people cooking, cleaning, doing laundry, grocery shopping and anything we could imagine. We didn’t want to do anything and I truly don’t know how we could have. We were in so much shock and denial and the pain felt like someone was slicing my heart with a filet knife every second of the day. I truly don’t know how we would have eaten or had clean clothes if it weren’t for our friends. People brought us freezer meals to last us beyond when people were bringing fresh meals.We found out, through the loss of our precious son, that our community is huge and we would not be upright without them. What I also found out is that after the first month, most of that support lessens significantly because people’s lives move on. For me, the novacaine was starting to wear off after the first month and the reality was starting to sink In. I can’t say that I accepted our son’s death but I was realizing that he was not going to come walking down the hall and snuggle with me on the couch. Facing the reality that our friends lives didn’t stop when ours did was excruciating. Our lives are now defined by before and after. We were shaken to our core and brought to our knees when our beautiful, precious son left this world. We still can’t believe it and we don’t want to move forward because it feels so wrong. In our situation, we have a 3 year old whose world was throttled as well and we have chosen to keep living for him. None of us asked for this but we can’t imagine not providing the opportunity for him to still have a life. It is not easy to parent while grieving but these are the cards we’ve been dealt so we have to play them.

My experience with grief *written 2 months after my loss


I was in total shock and denial for at least the first 6 weeks. I thought for sure that I would see him come down the hallway and say good morning mom. I shook my head in disbelief so much I’m surprised my head didn’t swivel off of my neck. I did not leave the house because there is no way I could face any kind of reality. I was so grateful to have so many people loving on us, bringing us meals and groceries, doing laundry, cleaning the house. I can’t even recall if I gave my 3 year old a bath during that time. My memory is so fuzzy and I couldn’t remember what I was going or who was coming over or when. I have no idea how our bills got paid. The pain was unbearable. It felt as though someone was cutting me with a filet knife every second of the day until I was so tired from crying that I collapsed into bed. Then I would wake up, look in the mirror and weep in agony that this was not in fact a nightmare I could wake up from.

The worst 6 days of my life Pt. 3

This is the part of the story when things started changing very rapidly. It was Friday and it was my night to stay at the hospital. My mom was there with me and everyone else had left so we started to get settled in the waiting room. There was just no way to sleep in his room because there were so many machines and I jumped at every beep. If I was sleeping in the waiting room and they needed me, I could be there in the blink of an eye. Starting at about 11pm, the nurses called me every 30 minutes to keep me updated because things were changing. The pressure in his brain was going up and they were having difficulty controlling it with the medication. At first, they took him back to adjust the drain because they thought it may have had a kink in it. Then they decided to replace the drain, thinking that might be the issue. By about 3 am, and they kept calling, I asked them if I needed to be concerned and they said yes. So I went back to his room. The doctor sat me down at a computer to show me the most recent scan of his brain. She showed me so I would get a better picture of what we were facing and that is when she told me that his entire brain was damaged and there was nothing more they could do. The noises that came out of my body were sounds I’ve certainly never made and definitely never heard in my life. I could not believe that my precious baby boy was going to die. I had not really considered it as a possibility. I asked the doctor to call my husband and explain it to him because there was no way I could. We called the rest of the family and they all arrived at the hospital by 4 am. The doctors adjusted everything so that I could lay by him which I was so grateful for. He had so many tubes and machines hooked up that we could barely even give him a kiss.

I laid next to him and stared at him for 4 hours. I wanted to memorize his beautiful face. I have always loved his profile and I used to stare at his ultrasound picture and then was so amazed at how he looked exactly like it when he was born. You can’t really put into words the thoughts you have when you stare at your child, realizing you are never going to see them again. I couldn’t even see the machines, I only saw him. They wanted to remove various pieces of equipment and I really just wanted them to leave him alone because he had been messed with so much.

Once we realized that the end was eminent, we knew we had to tell our 3 year old. We recruited the help of the child life specialists because I had no freaken clue how to tell him that his brother was dying. They took a picture of him in his hospital bed in order to show our 3 year old so he could make the choice if he wanted to see him or not. We were not going to force him but wanted to give him the opportunity because you don’t get any do-overs in these situations. We explained to him that his body got sick and didn’t work anymore so he didn’t need his legs and arms anymore because he was going to die. Telling your 3 year old that his 7 year old brother was going to die was almost as horrific as realizing that our 7 year old was going to die. He seemed to comprehend it as well as could be expected. When we showed him the picture of him in his room, he wanted to go see him. When we entered the room, you could physically see the wheels turning in his little head. He pointed at all of the machines asking what they were. He wanted to see his hands and feet because at his age, he is so concrete. We let him touch him and do whatever he felt comfortable doing. He cried 2 different times and they were sad cries and it was gut-wrenching. We were given the opportunity to do memorial projects like painting his hand so we could have a hand print to take home with us. He wanted to do it so he chose the colors and said he wanted to also paint a heart on his brothers hand.

Pastors from our church came to pray with us but they were not aware that everything changed. I will never forget the looks on their faces when I told them that he was not going to survive. They came in and prayed with our family and as this was going on, our 3 year old said he wanted to paint a picture of heaven for his brother. He said that we shouldn’t be sad because he will always be in our hearts and it is so true. The innocence of children can be so refreshing when we lose sight of the truth.

Our sweet baby boy took his last breath at 3:30pm on July 20, 2019 and we will never be the same.

The worst 6 days of my life Pt. 2

At this point, we figured that we were going to be in for the long haul because at this point, he had 6 strokes and had cancer as well as still trying to figure out where the clots were coming from. Since the discussion of cancer treatments was on the table, I was starting to think about what kind of child care arrangements needed to be made for our 3 year old. The first few days, he was staying with my mom and my husband and I were trading off going home to get a decent nights sleep and to be with our 3 year old. One of us was at the hospital every second of the day along with a barrage of support. People offered to keep our 3 year old during the day and he was willing to go with people that he knew but once it came to people that he didn’t know, he was unwilling. I couldn’t blame him because he didn’t understand what was going on at the time. We decided that we didn’t want him to see his brother hooked up to so many machines and that we would bring him to visit once he got out of the PICU. We spoke with the child life specialists at the hospital to help us explain to our 3 year old what was going on in very basic terms: his brother was sick and in the hospital and they doctors were trying to make him feel better. We brought him to the sibling play room because we had assumed he would be spending a lot of time in the hospital in the near future.

Since the swelling in the brain from the strokes was becoming the most pressing issue, they had to put an InterCranial Pressure Monitor, which involved drilling a hole in his skull to be able to directly monitor the swelling. The doctors were using a very specific combination of medications to keep the pressure down. There was a monitor that told us what the levels were. The doctors told us not to stare at the monitor but that’s really all we did. If us being in the room raised his pressures, we let him be. If us talking to him made his pressures go down, we would talk to him all day. Since they were having troubles keeping the levels where they needed to be, he went on low stimulation which meant no visitors, only mom and dad.

Since I had only given birth 1 week prior, I was still pumping every 4 hours. Once I realized we were going to be in hospital and what was going on was very serious, I decided to dry my milk up immediately. Thankfully, I had no issues with this. I had a pretty decent stash of milk with no real plans for it. A few different people mentioned that there have been studies that breastmilk can be very healing and that maybe we should see if he could take some through his feeding tube. We asked the doctor and they didn’t hesitate whatsoever. Our situation was pretty unique considering I had just given birth and literally had no one to give the milk to so who better to receive it than my own precious child who was fighting for his life. It made me so proud to see that bag of liquid gold going into his system.

After about 4 days, we found out, through a muscle biopsy, that he had Osteosarcoma and not Ewing’s Sarcoma. I’m sure it was mentioned sooner than I recalled but it was around this time that I started to understand that the tumor in my precious boy’s leg was 9″ long. I will never be able to comprehend how my darling boy walked around with a tumor that size in his leg. My heart aches when I think about the kind of pain he must have been in but then again, he was able to swim and still play at times. His activity level had definitely been lower than before but since it was summer, I was hot and big pregnant, it wasn’t as obvious to me.

We had so many friends visiting us at the hospital, bringing us food, bringing coffee, bringing gifts for our 3 year old. There was a constant flow of visitors at the hospital and we will forever be grateful for that. We were so overwhelmed and emotional and we needed our support system with us.

Since the swelling in his brain, continued to be a problem, the neurosurgery team needed to put a drain in to try to get the fluid out of his brain to alleviate the swelling. This seemed to make a little difference but not enough because it was a constant balancing act to keep the pressures down. My poor son had so many tubes, machines and apparatuses on his perfect little body. He had a machine cooling his body and then a machine warming his body. It was vital to keep his body temperature exactly where it needed to be. He had so many IV’s, EKG monitors, a ventilator, tubes coming out of his head, sooooo many machines that were dispersing his medication. Even at the end, they had little goggles on his to keep his eyes moist since he was no blinking. It was hard to see and he kept the nurses busy the entire time he was there. By the end of their shifts, they were all sweating. We joked that he liked having all that attention on him but we hated that the reason.

Each blog entry I write, I only write as much as my heart can handle for one day. Recalling this information is hard but important to me because this is our story now.

The worst 6 days of my life pt. 1

Once we arrived at our local children’s hospital, so much of what went on became a blur because everything moved so quickly. When we were at the ER, the doctor noticed that he had what he called a mass in his leg. We knew that something was wrong with his leg but it had never been called a mass. This must have been what alerted the children’s hospital to take a femur x-ray. Upon arriving, our son’ mental status was quickly declining. He could not recognize his dad and me and he seemed to be looking past us. He was in and out of consciousness at this time. They were asking us a ton of questions and trying to ask him questions which he could not answer. They decided to do an MRI of his femur and his brain. Part of me felt relieved because we had an MRI scheduled in a few weeks so I naively figured that we wouldn’t have to do it again. I was nervous because he was going to have to be sedated and honestly, I don’t think I truly understood that it meant that he would have a tube down his throat that would never come out. They told us it would take 3 hours and I couldn’t imagine how I could handle being away from him for 3 hours. They put us in a little conference room to wait. Since I had just given birth 6 days prior, I was in full postpartum mode. I was pumping, bleeding and hormonal as all get out. 2 hours after the start of the MRI, a doctor came in and told us that our son had a tumor in his femur and had had multiple strokes. For as long as I live, I will never understand how a seemingly healthy child could have multiple strokes. They admitted him to the PICU. The first night, they were getting him settled and went into high gear to figure out what was going on with him and how to address it. I think we may have slept a few hours that night but we never could have prepared for the completely insane ride we were about to endure.

We were told that he had cancer and the doctors thought it was Ewing’s Sarcoma. As of Monday, he was still somewhat coherent. Since he had the tube in his mouth, he had on restraints because they didn’t want him to pull it out. This was something that bothered me so much as his mom because I KNEW how much he would have hated it because he had a horrible gag reflex. When he would come to, he would get scared and usually the nurses voice or one of our voices would calm him down. I could recall 8 different teams of doctors who were doing process of elimination to see if it was a virus or an autoimmune disease. There was an oncology team, neurology team, neurosurgeon team, infectious diseases, cardiology, cardiothoracic surgery team. We were getting so much information fire hosed at us every second, there was no way we were keeping up or completely following along. We had complete hope that he was going to be ok. We realized it was going to be a long road and we were thinking about arrangements to have our 3 year old cared for on a long term basis while we cared for our boy. Tuesday was the day that everything changed. We were taken into a conference room with the heads of all of the teams of doctors where they explained to us the gravity of the situation. They said that he had a total of 6 strokes, strokes in his spleen and kidney, a flap on his mitral valve that they weren’t sure if it was the reason for the strokes or not. They told us at this time, that if had one more massive stroke, that he could die. Honestly, it was the first time I even considered it as a possibility. The doctor also had a serious talk with us about holding on to hope and celebrating the smaller increments. If he had a good few hours, we would celebrate that and say that he won the day. We never lost hope. We knew how strong our boy was and he had a huge community of people praying for him and rallying around him. The next few days was one step forward and several steps back.