I have been blogging on this site regularly: mjoymommy.wordpress.com
Today’s post was from WordPress’ Bloganuary event where people with WordPress blogs can post each day based on a prompt of the day during the month of January.
Do you have a memory linked to a smell?
I inhale deeply trying to catch a whiff of what used to be a strong mix of scents. Blends of essential oils. Frankincense – an oil that was said to have helped brain tumors. Copaiba – possibly anti-inflammatory? Lavender – an all-around useful oil. The items I’m inhaling include a yellow, soft blanket that came from one of my son Judah’s hospitalizations at a children’s hospital, and a quilt that was made by a woman from our church out of Judah’s clothes. Can I still smell a faint trace of the smell of the oils six years later?
The smell would bring me back to those days when we were in the fight against Judah’s inoperable brain tumor. Conventional science gave us no hope. Was there anything else that would give us hope? Any chance that something we might try could eat up and destroy the cancer cells that were sure to keep multiplying in Judah’s brain? We applied essential oils, changed his diet, added nutritional supplements to his diet and prayed that it would be enough. But it wasn’t. That yellow blanket represents both worlds – conventional science from the hospital and a naturopathic approach from our own attempts, neither of which could give us what we wanted.
The smell brings back the memory of Judah. He did anything we asked of him as we tried to win the battle against cancer. I wouldn’t say that he did these things because he considered it his fight, but he trusted us to do what was best for him. He rarely balked at anything we asked of him until near the end when swallowing the supplements became too stressful and time-consuming to continue. Were they helping anyways? Did any of what we did help? Would I do things the same if I had to do it again with someone else or if I had to do it over again with him? I honestly don’t know. I don’t feel guilt over our choices, but there may have been a better way to walk through his cancer journey.
Now Judah hasn’t been here with us for over six years. Can I find a hint of that smell again? I inhale deeply, shift the blanket to another spot and try again. The blanket made out of his clothes had a very strong smell at first. The woman who quilted it was sensitive to smells and it gave her headaches as she worked on it. I felt badly for her, but was grateful that she pushed through and finished. I smell the angry birds shirt, the Hawaii t-shirt from our Make-a-Wish trip, the HopeKids organization t-shirt that brought many positive memories during Judah’s treatment period, Judah’s zip-up hoodie that he wore so often towards the end and holds difficult memories of Judah’s decline, and others. Unfortunately the smell is mostly erased.
I hope the memories are never erased even though it feels like Judah has been erased from this earth with hardly a look back. Life continues to run fast-paced until one day it will stop for each of us. If only I could catch that smell again, but it wouldn’t change the reality of his absence. But I remember the hope of that day when I will graduate from this earth to my heavenly home. Then I won’t need a smell to bring me back to those days and those days won’t be filled with painful memories. Life will be new and the smells will be more amazing than I can imagine.
So today I can try to smell and remember because Judah and the lessons learned of that time are worth remembering, I can appreciate the smells of today as my daughter sits nearby with her coffee. Special gifts of today with those still here. And I can look forward to heaven when all will be made right and beautiful smells will be everywhere.
I wrote this a couple of days ago for Judah’s birthday.
Today is Judah’s birthday. I woke up with it being the second thing on my mind. I don’t remember what the first thing was. It can bother me that he’s not right there in my mind. But then, my mind is pretty cluttered with lots of things. Should I feel guilty about that? Or is that a good sign? It’s Judah’s birthday after all. If he were here we would be having his birthday breakfast and giving him his one morning birthday present. Making pizza. Wrapping presents.
Judah’s birth eighteen years ago wasn’t how I hoped. I had hoped to go in at the last minute, but instead I tested positive for group B strep and had to go in to have IV antibiotics twice before delivering. All of my previous 3 births had been with an epidural, so I had hoped to have as natural a birth as possible this time. Unfortunately I ended up out of labor after having had antibiotics and so needed to be induced back into labor with pitocin. I then used an epidural again to manage the pain from the pitocin.
But in the end, Judah was born. He was healthy, despite having the cord wrapped around his neck twice. He even got me out of cooking our Thanksgiving meal. Our relatives cooked it themselves. And he was born shortly after noon so Leland could go eat with the family and bring me back some food afterwards. Judah was a fitting name since it means “praise” and he was born on Thanksgiving. We had so much to praise God for, even though things didn’t happen as I had hoped. Life is so often like that. Not giving us what we want, but being filled with blessings no matter how things work out.
So today I remember the blessing of Judah. I am thankful for all of the things that do fill my heart and mind, making life full even though I miss Judah. I will keep on walking the path before me until we meet again. Love you Judah.
Anniversaries. Good ones. Bad ones. Holidays. I sit here thinking about these days that we remember. What role do they have in our current lives? Do we move on and forget? Do we remember them in passing? Do they launch us into a whirlwind of emotions that suck us under? Or do we remember and reflect and learn?
There are the good memories. Birthdays. Anniversaries. Celebrations of life and marriage. There are dates that we celebrate Jesus’ birth, Jesus’ death and resurrection, and give thanks for moms, dads and everything. Then there are holidays that we celebrate hard things. Memorial Day. Veterans Day. Good Friday. They cause us to remember and give thanks.
What about the hardest days of life? I was wondering how much of the population can think of a specific date that they think of and remember each year as a date that was hard or tragic in their lives? Since going on this journey of cancer with Judah, unfortunately I have been given a number of those dates. Today happens to be one of them.
Three years ago was probably one of the darkest days of my life. It was a day where Judah was unresponsive verbally, didn’t walk, and was asleep most of the day for the first time in his life. I was given information about aspirating and getting lung infections because he wasn’t swallowing well. We were given insurance approval for a wheelchair. Occupational Therapy was working on ways for us to possibly communicate with Judah about needs if he stayed nonverbal. Then I got the biggest bomb. Palliative care came to talk to me and brought me out to a lounge with big windows overlooking Minneapolis. During our conversation they told me that Judah may have days to weeks to live and I should get my husband down there with me. I remember just feeling sick as they talked about end of life physical issues. I didn’t want to hear about it.
So where do we go with memories like that? This time of year has been hard for me ever since Judah died since there are a parade of memories like that. They lead up to March 9th when his brain tumor took his life. What do I do with those memories? How do I grieve through it in a healthy way without getting sucked into a time of self-pity? Or do I keep busy and try not to remember?
In reflecting on this time period in my life, I was reminded of how Christians remember the life of Christ leading up to his crucifixion and death. It is a somber time of reflection that we have each year as we reflect on Christ and what he did for us and why. His suffering was greater than anything we can imagine. He went through such injustice and shame. It feels different in not having witnessed it personally, but it is also connected to me personally because it was done for me. It’s hard to imagine those days of Jesus’ life and its connection to me. But Jesus’ blood was really poured out for me.
So today I wear a shirt I made in memory of Judah at a bereavement retreat. I go back to that place I was three years ago and remember. In addition to those dark memories I remember the things that day that got me through. My best friend who was with me through most of the morning. Another friend who brought some things I needed from home, stayed and watched Allison and Judah while I took a shower, and offered me a shoulder to cry on. Allison sleeping a good bit in the day because she had been throwing up during the night. I don’t think I could have survived that day while chasing her around healthy. And lastly, a radio that a friend lent me to bring with. The comfort of songs, new and old, from the local Christian radio station helped me through that night. I know that God was there getting me through in so many little ways.
As I remember this day and those coming that lead up to Judah’s death, I also remember what it says on my shirt that I made, “HOME” and “I Can Only Imagine.” I can write these words on my shirt because of the peace that was brought through knowing of Judah’s salvation because of his belief in all that Jesus went through those days leading up to Good Friday and finally the resurrection on Easter.
How many of you have those dark days? Those days when everything changed in life? When the world turned upside-down? I pray for the ability for all of us to remember and grieve and pray for perspective about how to respond to what it’s done to us. How to take the bad and become a better person. Because often the worst things in life can lead to the best. That’s how it was with Jesus. Incomprehensible at times. Painful. But true.
Five years ago. Seems like a long time. I feel like I can hardly remember life then. Cody was 14. Cora 12. Devin & Derek 11. Jemma 7. Judah 9. Lindy 5. Carrie 1. No Allison. Cody had been interested in birding and photography for a while. They were into sports some. Computer or apps like doodle jump. They enjoyed fishing, stuffed animals…? To be honest I wish I could remember more.
Five years ago yesterday on a Christmas Bird Count Saturday, Cody and I were out counting birds and looking for every specie we could find. It was very cold and quite a bit of snow was on the ground. We were paired up with the two top birders in the area. We were expecting to mainly be birding from a warm car but started out on the Northland College Campus in their ravine, hiking through snow in the beautiful winter wonderland. Leland was home with the rest of the kids giving me this chance to take Cody out to do something we both love.
After hiking and seeing not that many great birds, but having a good time, we headed for one of the other birder’s car and started driving in town to check out bird feeders and take some looks out across the bay for waterfowl or snowy owls. While we were driving, my cell phone rang. It was Leland. He asked me if I could come home right away. Judah had fallen off an end table where he was watching his brother play a computer game and was throwing up and not talking right or responding well. I told him I would get there as soon as I could get back to the car, parked not too far away.
That was the beginning. The beginning of a journey that has forever changed us. Although looking at us, most of the time you wouldn’t know it. That day became, in an instant, something we never expected. Leland and Cody taking Judah to the hospital. Finding out that something showed up on his CT Scan that necessitated him being brought to Minneapolis via ambulance in case he might need brain surgery. Suddenly deciding who mom would bring with to Minneapolis, as an emergency with 8 young kids is a logistical challenge.
I remember packing and talking things over with some of my kids. I remember grabbing Judah’s favorite comfort blanket and wondering if he would ever need it again and knowing he would want it there at the hospital if he did. I remember my dad driving us and wanting to get there quickly to see how Judah was doing. And then walking into the PICU and seeing him doing computer type stuff on a screen located over his bed and feeling a sense of relief. They were partly watching what he was doing to monitor how he was doing neurologically. Then we had to discuss plans for staying with my 12yo daughter and 1yo daughter. They accommodated us for that night in an empty room nearby but weren’t sure they would be able to accommodate us the next night due to guidelines. Then Judah was sedated for an MRI.
All of that was our day. The day that propelled us into a different life. A different framework to live from. It didn’t happen all at once. That day while I was waiting to hear from Leland when he first brought Judah to the hospital, I was given the sense from God that this emergency was going to be more than just a quick hospital visit with a concussion or other simple condition. But God gave me the assurance that he would be there for us and get us through. But for the next couple months, everything seemed pretty normal. They never diagnosed Judah during that visit since clinically he was doing well. There were some tests run for some different conditions. One of them I remember saying would be a worse diagnosis than cancer. But we lived life as a busy family as normally as possible. Later in February, when Judah started getting headaches and we had another scan done, he was hospitalized and eventually diagnosed with his brain tumor. Around two years after that, he was gone from us and present with the Lord.
How have things changed from then to now? I don’t know if I can put a finger on all of the changes but here are some thoughts that come to mind. Before this journey, life was lived focused on so many things that really didn’t matter. I was living the homeschool country living dream where my kids could be out in nature, have a garden, and be self-sustaining to a degree. I was focused on daily survival and my kids interests. We were very inward focused on ourselves and our family. We wanted to reach others and make a difference and were trying to get to know others in the community a bit more with the interest of Leland and the older kids in basketball. But mostly we lived on our own, doing our thing – trying to figure out the best way to learn and grow together. Most of what we were doing wasn’t necessarily wrong in and of itself, but without the right focus and purpose.
Now how are we different? We aren’t any more perfect by any means, but there is a bigger purpose to life. We have been through the fire of the unimaginable and seen God provide our every need. Our marriage grew. God held us together. Many of us see others differently through eyes of compassion and understanding. It definitely isn’t all easy though.
I struggle with prayer and God. But the struggle is good and based on a foundation of faith. I get weary of this world as many struggles continue but I know there is hope in heaven. I have lost the innocence of life. I see a baby dedication and think of my baby I dedicated almost 13 1/2 years ago who I never would have imagined at that time, would be in heaven so soon. I wonder about that child being dedicated and his life. I hear a song about God answering prayers of his little children and wonder about what Judah’s thoughts and prayers were. I remember him saying that he didn’t want to die. But he was always at peace about it. At the end he told us he wanted to go home. I sit in a group gathering of people and struggle with surface conversation. Life is about so much more. I want to know people’s hurts, hopes, dreams. I want to encourage them or when I’m weak, be encouraged. But there are also times when going there is too hard and I’d rather forget and waste my time away. But it always ends in an emptiness that only God can fill.
So I’m done rambling. I’m done remembering for tonight. Done looking at pictures of those days in 2013 and 2014. Done trying to remember what it was like. Maybe my memory isn’t so good (which it often isn’t lately) and much of this isn’t completely accurate. In the end I am hoping that this message inspires someone to live with purpose. Know that whatever you face is making you the person you are. You can respond to it in faith and receive God’s comfort and give that comfort to others. Or if life is going well, don’t forget the important. The eternal. The things that matter in the end. I will end with a few verses that come to mind.
The top picture is from Judah’s 9th birthday – less than a month before his first hospitalization.
Hiking in the cold. Appreciating the beauty.
Judah watching Wild Kratts that night after we got to the hospital
The drastic change from the Northwoods ravine to the hospital window view. But God met us in both places.
As the Brewers are entering the NLCS playoff series in a couple of days my mind has turned to Judah. I have plenty of memories with him and baseball and thought I would write a few of them down.
Judah’s favorite sport was baseball. I have often thought that if Judah had lived, he would have wanted to play on a baseball team. When we moved to our Ashland house, for a while the kids would play baseball in the front yard. They had pine trees that were the bases and would play full-blown games. When they weren’t playing games, Judah could often be found playing imaginary games with himself or throwing the ball against the garage and catching it. He and Cody would sometimes throw the ball over the roof of the garage to each other and try to catch it. Some of my best memories are of listening to his high-pitched voice as he would call a game in his mind just like an announcer.
Once diagnosed with cancer, our family was able to join an organization in the Twin Cities called HopeKids that provides special events and tickets of various types to kids with life-threatening diseases to give them something to find joy in while in the midst of tough times. We were able to get tickets for some baseball and basketball games through this and Judah enjoyed being able to go to some Twins games. I remember he and the boys went with one of Leland’s friends to Opening Day of the 2014 season. Then we were all going to go to a game on a cold spring evening but it was during a time when he was getting some nausea and ended up throwing up that evening and not going. That was disappointing.
Judah was a big fan of baseball but his method of picking a favorite team was a bit unusual. He somehow set up a tournament with the different baseball teams as “competitors” in a dice game and the winner of that tournament was the team he decided to follow and root for! The winner of his competition? The Kansas City Royals. So he became a Kansas City Royals fan starting the 2014 season – the year he was diagnosed with his brain tumor. The Royals were a pretty good random pick for him because they made it to the World Series but lost in a game 7.
The 2015 Kansas City Royals season was even more memorable. Again they made into the playoffs. I remember a trip to Pittsburgh for Judah’s first clinical trial there and watching a couple games with him. They were games one and two of the World Series and the Royals won the first one 5-4 in 14 innings. We were watching in the hotel room after traveling and probably shouldn’t have stayed up for it because we had to get up super early in the morning to go for his MRI. I think we dozed off during a few of those late innings. Then the next night we were staying with a friend of my dad’s and watched the game at his house. The Royals won again but this time it was an easy win – 7-1. He was so excited watching that game! Then at home we watched them finish of the World Series in just five games.
On a later flight to Pittsburgh for another treatment of the clinical trial, we met a stewardess who was friends with someone in the Royals organization and knew one of the Royals players. She heard about Judah and his tumor and took down our address so she could pass on his information to them. The Royals ended up sending him some things two different times – a posteason baseball cap, a homer hanky, and a Royals scarf along with a nice note.
So now I miss watching baseball with him as I watch the Brewers make their run. I don’t know what he would have thought of the fact that the Brewers have a couple of his favorite Royals players from that championship team. Would he have enjoyed watching Lorenzo Cain and Mike Moustakas as Brewers? Would he have become a Brewers fan with us and enjoyed the excitement? Or would he have ranted about the Brewers stealing his Royals players? I can just hear him and his dramatic voice talking about it. But then his voice might not sound the same now as it did back then since he would be coming up to being 14 years old. Hard to imagine and think about.
So I think it would just be the right thing for the Brewers, with Judah’s ex-Royals players, to keep this run going and win the World Series. It would be kind of special as I remember those days with Judah and his excitement and love for the game. How ironic that a random dice game led Judah to the Royals and the joy of watching them win the World Series as he was starting his decline physically.
Judah at a Twins / Brewers game in 2015.
Judah watching the first Royals World Series game at the hotel in Pittsburgh.
I ended my last post with talking about being group B strep positive with Judah’s pregnancy and being disappointed by needing to go in early once I went into labor. That definitely played a part in Judah’s birth. Judah’s due date was December first. My first birth was one day after the due date. My second was on her due date. Then I had twins who were only about a week and a half early which was really good for twins. So I was expecting to have Judah somewhere around his due date.
Thanksgiving Eve we went to Leland’s mom’s Thanksgiving Eve service. The next day we were hosting Thanksgiving at our house and Leland’s sister and family were coming from out of town to join us for the holiday. While I was at the Thanksgiving Eve service I started getting some crampy feelings and didn’t feel right. I had this feeling that I might actually go into labor. I decided I’d better not eat the pie after the service as I was having regular, mild contractions. We told Leland’s mom so she would be ready in case she needed to come over in the night. Sure enough, by late evening I decided things were regular enough that she should come over to stay with the kids and we would head over to the hospital since we were supposed to come in early.
So we got to the hospital and they started the IV for the antibiotics and I hung out during some strong but manageable contractions. After a while I decided to take a bath which was a mistake. My contractions died down quite a bit and after a while with some discussion, they suggested I try to sleep. I was able to sleep for a few hours at least and woke up in the early morning hours still not in much regular labor. But because of having had the antibiotics we decided to go the pitocin route to get labor going. Because of needing to use pitocin and because I was tired I decided to go ahead and get an epidural. I had had an epidural with my 3 previous pregnancies. So eventually things got going again and a while later we talked with the doctor and he decided to break the water to keep things progressing. I believe there was some meconium in the water which was a slight concern.
Things progressed quickly after that and by around noon Judah was ready to be born. The doctor was a bit concerned about the meconium and didn’t want him to cry right away to make sure he didn’t aspirate any meconium. As he was being born, he let out a healthy cry right away and the doctor had to cut the cord from around his neck because it was tight around him. So it was a bit trickier of a birth than some but he was born healthy and screaming. If it weren’t for the Group B strep I would guess I wouldn’t have stayed in labor and he would have been born at a later date.
He was born a little after noon on Thanksgiving day. The relatives ended up cooking their own Thanksgiving dinner and Leland went home to enjoy it with them. Then they brought me some Thanksgiving dinner for me to eat later and brought the kids over to visit. Despite his not being ready to come, the timing of his birth was all very fitting as we had already planned on naming him Judah and his name means “praise.” What a wonderful praise for Thanksgiving day.
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I am sharing stories with a friend who also lost her son. We are trying to answer a question related to our sons’ life each week. This week I’m answering about memories from Judah’s pregnancy. I don’t know that I’ll be able to remember very much but here goes.
I can only think of two main memories. First I remember that after having my twins we decided we were done having kids. When they were born Cody wasn’t quite four and Cora was 18 months. When we originally talked about how many kids we wanted we said 3 or 4. Since we had twins we didn’t need to decide between 3 and 4 and we decided we were done. I gave away my maternity clothes and baby stuff and that was that. For a while. Until we were coming home from a trip to Wheaton where I grew up and my parents lived. It was night and I was looking out the window at the stars above. It was quiet. Everyone must have been asleep except Leland who was driving. As I was looking up I had this question in my mind. My questions was, “What if there is someone else that the Lord wants us to have that we’re not having because that’s the easy, normal, convenient thing to do.” That question got me thinking. And I talked with Leland. After a period of time we decided that we were open to more children. Judah’s pregnancy came along a couple months later. I am glad that the Lord brought him into our family if only for 11 years.
The second memory has to do with the end of Judah’s pregnancy. I don’t remember much in the middle because of having had 8 full-term pregnancies and for the most part, they were pretty routine. Judah’s was routine until we had the Group B strep test. It came back positive. I had originally wanted to stay at home as long as possible and then go to the hospital for a natural birth when it was close to the end. We lived in walking distance to the hospital. Unfortunately, being Group B strep positive meant going in early and having antibiotics for a long period of time before Judah was born. I didn’t agree with the necessity of this but there was nothing I could do. It was definitely a source of frustration for me and I remember talking to people at church about it and complaining about it.
I am pretty sure we picked Judah’s name before his birth but I can’t remember when or how we decided on Judah. Maybe it was because it means “Praise” and he was due 6 days after Thanksgiving. But that will get into his birth which I will save for another time.
Today I was down in Minneapolis for a quick appointment for my daughter with rheumatoid arthritis. It was a quick trip down and back. We did leave early enough and made good enough time that we had some time to spare before the appointment so I decided to detour on my way down and drive by where we lived while we had Judah’s chemotherapy and radiation done. It was an emotional time being down there and reliving some of our days there. I thought I would write about some of the memories that being there triggered.
As I drove into the area I drove by some of the stores that we went through. There was the Trader Joe’s and Target that stood out in my mind. During this time we started eating differently for Judah and I remember hitting up Trader Joe’s and trying to find my away around there to find what I would want for Judah. I also remember going to Target (we don’t have Target in our area) and the kids seeing different things than they were used to seeing in our local stores. We had two birthdays while down there so we did some birthday shopping there. Life kept going while we were in the midst of chemotherapy and radiation and these were some of the reminders that came to mind.
As we continued driving, we crossed the railroad tracks and continued down towards the area where we lived. When we lived there, Judah was excited to see lots of trains. The railroad tracks were within walking distance from our house. We approached the intersection near where we lived. At this intersection we saw the park that had a basketball court near the train tracks and the paved trails. We would rollerblade/walk/push the stroller down there to watch for trains or ride these trails there. Judah always loved counting the trains and counting the number of trains we would see. Across the road was Island Lake Park where there was a nice playground and a small lake where the boys fished a couple times.
Then I followed the route towards the house location where we lived. We were blessed to have a house to live in for free other than utilities. Someone we knew was a builder who owned the house and was going to tear it down and build a new, large house on the lot. It was perfect for us and met our needs. So as we came to the place today, of course the house wasn’t there. It’s hard to even recognize the lot with the large, beautiful house there. But the neighbor houses were familiar.
There were so many memories at that house: Checking the place out with Judah before we moved in. Moving in with all of the kids and seeing them run around exploring it. Having friends furnish and bring so many things that we needed. Judah not feeling well when we were first moving in and him lying in a corner of the living room to rest. Watching the end of March Madness there. Trying to cook healthy and do everything with different pots and pans and with a kitchen sink that leaked so badly that we had to let the water out into a bucket under the sink and throw it out the patio door every time we did dishes. Experiencing spring coming earlier on a very long and snowy winter when up where we lived it was still pretty nasty. Crazy times getting most of the kids to sleep all in one large room. Visits from friends bringing meals or food from the store to help us out. Leaving the other kids with a schedule for them to follow to take care of the younger kids, while I left every day with Judah for his treatments. Exhaustion trying to wrap my brain around my son having an inoperable brain tumor and navigating the endless thoughts of how we could help him best. Those are the memories that come to mind from that house.
Though things were crazy, there was this overall sense of God’s provision. His hand was on that place. On that area. On Leland’s work. As I drove through the area I remembered other parks, other places where we hung out. Where we found beauty, found joy, found spring, found entertainment in the middle of a crazy time. Judah thrived through this time other than a few bumps in the road. I remember him starting to lose his hair and being itchy up in his bedroom and finally shaving it off. I remember his head being sensitive and certain hats working better than others. I remember his going to the Twins home opener but missing a later game because of nausea. I remember him and Leland getting to go to the Timberwolves game with front row seats. Such a packed time. A life doesn’t stop time but you keep on rolling with it and keep doing and keep trusting.
Being there today was good to remember. It makes me feel a little closer to Judah. To see those places that we were at in such a monumental time in our lives. I wish I could have turned back the time. To be there again as a family. To cherish it even more. But no. It’s just a glimpse back in time to where we came from. I thank God for that time. For his many ways he was with us. For how he used that time to make us the people we are today.
I was recently asked by a friend to write for her some thoughts about how I have been doing and what things I have been dealing with since Judah’s death, so that she can pray for me. This is my attempt to put into words what has gone on in me.
Lately I have been experiencing a wide range of emotions. I have struggled with grasping the reality of Judah’s dying and really comprehending it. Much of the time since Judah died has been spent living life as normal – taking care of 8 children with all its ups and downs and busyness. But lately and more often I have sunk into times of deeper grief, despair, and struggle. I have often wanted to quit being strong and just be mothered or taken care of or just hibernate for a day or longer. I miss Judah and think of the things it would be fun to be experiencing with him. But he’s not there.
Some days I struggle with exhaustion which is often accompanied by a headache that screams grief or tension within me that wants to get out. Then I can quickly, depending on the circumstances and joys of the day, be back to my normal energetic, peaceful self. Sometimes the fatigue will last for a few days or the days of energy may last a number of days or even weeks.
I mentally have struggled with faith in dealing with difficult things. I have tended to struggle to pray and believe that God is listening and cares. Even though mentally I know that Judah dying doesn’t mean that God doesn’t care, there has been a shift of struggle to understand and act on my faith. This can cause me to spiral into despair when there are difficult circumstances that I’m facing with my family. God isn’t fitting into my nice and tidy box that he used to fit into. But that’s ok. He’s not supposed to.
I recently purchased Keith and Kristyn Getty’s album “Getty Kids Hymnal” which has the song “Jesus Loves Me / Jesus, Tender Shepherd, Hear Me” on it. https://youtu.be/vjU0XuGp6bI I will post the lyrics at the bottom of this post. The song melted me into tears. I can remember this song from a Bible story book that we have where a little orphan boy sings this in a convent during WWII while the convent is being bombed. The song gave them courage and they all got through the bombing fine. To me it represented God’s care in protecting his children.
As I listened to the song I struggled with thoughts of Judah and what songs like that would mean to a dying boy of 11. Was the song meant as a song of protection? Do we teach children that God will keep them safe? But he doesn’t always keep us safe from harm. Deep inside I know that though Judah wasn’t kept from death, Jesus was his tender Shepherd who was with him through the darkness and sickness he faced. But it still hurts and still pulls at my heart to listen to the song. It’s still a struggle wondering what it was like for him – a boy of 11 to die of cancer. It’s incomprehensible to me, though I know that he was at peace. God brought the “Peace of God that surpasses all understanding to guard our hearts and minds in Christ Jesus” (Philippians 4:7).
Recently I started reading a book called, “None Like Him: 10 Ways God is different from us (and why that’s a good thing)”, by Jen Wilkin. It has shown me how my perspective has so often been all wrong. I live life based on what I know which compared to what God knows is almost nothing. In the chapter on Eternity it talks about how God is not bound by time. He has no beginning or end. He sees everything on earth from before our time and knows the future to eternity. For us, we are stuck in a very short period of time operating based on our current experiences. Jen says in her book, “God is simultaneously the God of the past, present, and future, bending time to his perfect will, unfettered by its constraints. The past holds for him no missed opportunity. The present holds for him no anxiety. The future holds for him no uncertainty.”
In Ecclesiastes 3 it talks about there being a time for everything – birth, death, mourning, dancing etc… Jen continues saying, “Moreover, all of God’s actions within time happen at just the right time. He is never early nor late, never subject to the tyranny of deadline, never in a hurry, never playing catch-up… Ecclesiastes 3 tells us that he assigns ‘For everything…a season, and a time for every matter under heaven.’ But it doesn’t feel that way from a human perspective. We look at the timing of events in our lives and think that perhaps, in at least a few instances, our timeless God has temporarily checked out. We can readily acknowledge that there is an appropriate time for everything, but we have fairly formed opinions on when those times should be. The time to heal is any time someone is sick… The time to die is at the end of a full life, not a moment before. But we see all around us that tragedy and comedy, birth and death, mourning and dancing present themselves seemingly at whatever time they choose. Human comprehension labors to make sense of it all.”
If you’re still with me here, hear out Jen’s next words, “We look at the times and seasons and ask, ‘Where is the beauty God is bringing from this?’ We expect him to make everything beautiful in our time. But the one who determines the beginning and the end does not operate according to our timelines. He will work all things according to his purposes. Every sorrow or harm we suffer will be redeemed for good. But sometimes it takes more than one lifetime for the ugly to be made beautiful. We may go to our graves without seeing the wicked receive their due. We may be laid to rest without finding forgiveness from a loved one. We may die without seeing the resolution of our own plot line, whispering with our final breath that we don’t understand. No, we ‘cannot find out what God has done’ even within the boundaries of our own birth and death, our own alpha and omega. But this does not mean that what God is doing is not perfectly timed. The problem lies not with his timing but with our perception of it.”
Wow. So my problem lies with my own self-centered view of my life. I want to be able to make sense of it. Put it in a nice box with a bow. I want to make everything turn out right and control the outcome so it makes sense to me. I want to know what God was doing. To challenge him. But I’m just trying to be God and be in charge. He is God and knows and understands and I can trust that he is wiser than I am.
So I’m trying to gain perspective. I’m not there completely. I still want to just stop being strong and tough. But that’s ok too. I can stop trying to be strong, to control everything, to make everything right, because I can’t. I don’t need to be strong. God needs me to be willing to be weak and to lay everything aside and trust him to give me just what I need for each moment and let him handle things. He needs me to be willing to ask for help from God, my family, and others around me when I need it. He needs me to stop trying to be God and to just be me.
I recently found out about a friend’s niece who is five and has cancer. They removed one of her kidneys and the cancer has spread to her lungs. She comes from a family of 8 kids. My heart is broken for them understanding the shock of what is going on. I don’t understand it – why this precious, beautiful 5 year-old is experiencing this. I can only pray for her and her family. I pray that they would experience that peace that only God can bring in the midst of the nightmare and incomprehensible nature of what they are experiencing. I know that God was so near us as we went through the two plus years of Judah’s cancer journey. I am grateful that they know the Lord as well and am praying for God to show them his love and mercy.
I pray that whatever you are experiencing, you may know God’s love and trust in him. I pray that you would be real with him and not try to make yourself strong or tough but instead know the love of God who was willing to give up his own son to die on the cross for out sins. He understands the pain yet has a purpose for it, just as he had a purpose for Jesus’ pain and suffering.
As I listen to the song, “Jesus Loves Me / Jesus, Tender Shepherd, Hear Me” my mind prays this song for little Abby and her family facing this cancer diagnosis and hospitalization and for the many others who need the touch and care of Jesus, their tender shepherd.
Jesus, Tender Shepherd, hear me
“Jesus, tender Shepherd, hear me;
Bless Thy little lamb tonight;
Through the darkness be Thou near me;
Watch my sleep till morning light.
Chorus:
When I’m troubled and afraid
I will trust in Thee and pray
Jesus, tender Shepherd hear me
Bless thy little lamb tonight
Bless thy little lamb tonight
All this day Thy hand has led me,
And I thank Thee for Thy care;
Thou hast clothed me, warmed and fed me,
Listen to my evening prayer.
CHORUS
Let my sins be all forgiven;
Bless the friends I love so well;
At life’s end, take me to Heaven
Happy there with Thee to dwell.
CHORUS”
New Years Eve 2016. I found this wonderful video on the Prayercast website about God reigning over the world and all the events of the last year. It is quick to watch and gives such an encouraging perspective on the craziness of our world.
http://prayercast.com/phone/you-reign.html
As I was watching the events of last year scroll past, I was thinking about what a short video of photos and video clips from last year would look like. There would be many new friendships- people who stepped up to help with Judah and people at our new church. There would be times of great hope- when Judah miraculously recovered when hospitalized in January, or when we saw some improvements with certain treatments.
It would contain scenes of Judah’s decline and being with him when he breathed his last and hopes for earthly healing were gone or times when his joy and enthusiasm were sorely missed.
There were also many good moments. Cody’s first basketball season and the team and community’s support of our family. Cody’s second season with him now being a starter. Other kids playing basketball. Summer trips to the lake, camping, the fair. Other trips including my trip to Seattle for a conference, the mother / daughter retreat at a Bible camp, the family bereavement retreat at the Metropolis resort, and the Twin Cities and Waterpark of America.
We also raised our puppy we got at 8 weeks of age in December last year and got two kittens.
All of those outward events are pieces that mold my inside heart. Inside I still faced fears, heartache, doubts, confusion, and feelings of being overwhelmed during those last months with Judah. I faced grief, shock, numbness, comfort and help after Judah died. I faced even more commonly the daily living consisting of busy parenting and homeschooling This came with the struggle for patience and wisdom and the feelings of failure countered by the hope of each new day with faith in God. Even the most fun vacations and events can come with difficult struggles with people who disappoint or hurt. And despite truly good times the grief is always lurking beneath the surface until I have a chance to let it out.
Because I believe God reigns over all of these events of my year- because I know that his love and presence have been with me, I see these events through the lens of faith. I see that that this world is short and its trials temporary compared to eternity after I die. This knowledge is the foundation for my life. Still the events are there and affect me. As I close the book on 2016 I can thank God for his presence through it all. He does reign over it all. He alone brings meaning, hope and peace through all of the events of the past year. And I can trust him with my 2017. My prayer is that all of you will know the peace of God over your 2016 and trust him for your 2017.
Tonight I have been thinking back to a year ago. I was looking at old pictures and found pictures of Judah outside in the snow and then Judah at his Grandparent’s house on Christmas day. Judah had been up and down a lot during that time with some concerning symptoms that at the time I was attributing to his seizure activity. By the grace of God, the day of the snow and Christmas day were good days for Judah.
I remember Judah not wanting to go outside much. It was a lot of work for him to get his winter gear on and he didn’t like the cold very much but the 23rd of December he did go out and had a great time. Mostly he loved eating the snow but it was so good to see him enjoying some time outside.
Christmas Eve we went to a local church’s Christmas Eve service and then had Christmas food together and had some family time. Then on Christmas day we went over to our parents’ house for food and time with relatives. I don’t remember much about Judah on those days. I do know that thankfully Christmas Eve and Christmas day were good days for Judah. He participated in things with the family and seemed to enjoy his day. On Christmas day I have pictures of him holding a nativity figure that he enjoyed placing in the nativity scene when Grandpa read the Christmas story. I also have pictures of him enjoying opening presents from relatives.
Unfortunately, most of my memories of last Christmas are erased and I don’t have any journals written from that time. It is a lost event buried in my mind somewhere. I do know that I was aware that it might be our last with him. I think I desperately wanted to make those days meaningful but just didn’t know how to do it. How do you put meaning into those days? I treasure the few memories I have wishing they were so much more.
This year though it is hard missing Judah, I am enjoying treasuring my time with my kids. In our family one of our boys always hates hearing the song, “It’s the Most Wonderful Time of the Year.” He personally would much prefer it to be summer and to be out on the lake catching large bass.
This year I’ve been reflecting on how though this is a hard time of the year with Judah’s loss and it’s not my favorite season and there are a lot of illnesses, it can truly be the most wonderful time as I reflect on how Jesus came to earth as a baby destined to die on the cross for my sins. He lived on earth and understands my pain. One of Jesus’ names is Emmanuel, “God with us”.
This can be the most wonderful time of the year because it is a reminder of God being with me at all times. It is a reminder that his death on the cross paid the penalty for my sins as as I believe and put my trust in him, I have the hope of heaven. There I will see Judah once again. I will have unspeakable joy as I meet my Savior and see all that awaits in eternity. So amid the difficult memories of Judah’s decline and passing last year I cling to Jesus and the hope that his birth brings. Hope of comfort. Hope of purpose. Hope of help. Hope of a joyous reunion with Judah and other loved ones some day. I pray that each of you knows this hope and peace no matter what your circumstances are.
Memories of Judah 