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.
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.
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.
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.
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.
Today I was reflecting on what Judah wants for his birthday since finishing his course on earth and graduating to heaven. What does a boy want who lives in the best place ever? We can’t imagine how wonderful heaven is but I know that Judah is completely at peace and is completely satisfied with his current life. So what more does he want? I believe the only thing that Judah could possibly want for his birthday is for people to know how awesome God is and His salvation. He would want them to know the peace of God that he experienced during the end of his life and want them to be with him in heaven some day.
Here are some words that I wrote over a year ago that express Judah’s faith. “Tonight we were talking about something (can’t remember what) and Judah said, “I might not be alive in a year.” I asked him what makes him say that and he said that he’s more likely to die than most people. I just said “True” and left it at that as he went on chattering away. It struck me how matter-of-factly that he spoke those words. When he was first diagnosed we told him honestly that his prognosis wasn’t good and that he could die but we haven’t talked about it since then. In a way it’s a relief to hear his peace. It is such evidence of God’s grace. I’m not saying he will die, but to know he’s at peace is such a comfort.”
The journal continues with this, “We also had a good conversation about Bible verses he has memorized. As we were reviewing one of the verses (Ephesians 2:8-9) he got a real serious and intense look on his face and said how we aren’t worthy – that we are so full of sin and how amazing it is that Jesus would die for us. I write these things not because I want Judah or us as parents to look great, but for people to know the real God of the Bible that Judah knows, and to see how God is at work in Judah and to praise God for that.”
Ephesians 2:8-9 says, “For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God not by works, so that no one can boast.” One thing that concerns me today is the opinion everyone seems to have that they are going to heaven. There is a real heaven and a real hell. People today don’t seem to think that God is holy and must punish sin. There needs to be a payment for sin. Romans 3:23 says, “We all have sinned and fall short of the glory of God.” Thankfully John 3:16 says, “For God so loved the world that he gave his one and only son that whoever believes in him shall not perish but have everlasting life.” There is only one way to heaven and that is through believing in your need for a Savior and believing in Jesus as the one who saves you through his death on the cross for your sins.
God isn’t just to be used for being saved eternally but also is for a relationship in this life. He brings real peace, joy, and meaning to this life. As you come into a relationship with Jesus life is never the same. It may not be free of troubles. Judah had his share of troubles. We have gone through many trials in watching our son die from his cancer. But I have met these trials with peace from God and faith in him. Despite immense sadness he is here for me. Life also has meaning as I live for him and learn to serve. God fulfills his purposes through me.
Here is another passage from my journal last September. “Tonight while we were brushing teeth Judah said, “I wonder why I’m the one in the family who all the bad things happen to.” (He recently got knocked in the head by the wood seat of a rope swing over a creek and got it scraped and he fell into the freezing cold water when it knocked him over. Thankfully he was fine and it was on one of the really hot days. That and his cancer stuff he was talking about). Then he followed that up by saying, “God must have a reason.” I’m so thankful that none of this was spoken out of bitterness or frustration. He then went on to say how amazing it is that Jesus would leave heaven where everything is perfect to come live on earth and then die for us on a cross. Praise God for Judah’s understanding and reminder to us all! No matter what we’re going through, Jesus understands us and will be there for us!”
I will conclude these birthday thoughts with thoughts on a verse. 1 Corinthians 2:9 says, “However, as it is written: “What no eye has seen, what no ear has heard, and what no human mind has conceived”—the things God has prepared for those who love him”. We can’t even comprehend the joys that Judah is experiencing in heaven. He didn’t get heaven’s joys because he was a good boy. He wasn’t always a good boy. He got them because he loves God and has accepted his payment on the cross for his sins. What does Judah want for his birthday? He wants you to know personally the God that he gets to see and experience in vivid, incredible ways – the God who was there for him as he went through his 2+ year battle with cancer and gave him great peace. He wants you in heaven with him some day. Will you give your heart to God and trust in him? There is nothing greater than knowing God and his love. Nothing else will satisfy.
P.S. – If you want to read more about Judah’s life, follow this link. https://www.caringbridge.org/visit/judahchristenson/journal
One year ago today we celebrated what would be Judah’s last birthday on earth. At the time Judah had declined in some ways – enough that I had the sense that it might be his last. It was hard deciding what to do. What do you buy for someone who may no longer need material things? How do you celebrate?
It turned out to be a good, special day. Judah was excited waking up and had a special omelette (he was on a modified atkins diet), and some of his stevia/erythritol sweetened pop that we got for his birthday. He enjoyed some computer time and time with his family before having Grandma and Grandpa over for his birthday meal. We had pizza and made him his own special low-carb pizza. He also had more of his pop.
I was thankful that I was able to make a very low-carb cake with a whipped cream frosting that I could also decorate for him. We always have cakes with a theme for our kids birthdays through their 12th birthday. Judah’s cake was a 20 questions cake where we hid a small lizard-like creature under some graham crackers on the cake and we told him what was hiding there for him to have everyone guess what was hiding on his cake. He loved playing 20 questions in the last year!
Judah had his presents afterwards. The presents that stand out most in my mind were his Lilys chocolate chips (stevia/erythritol sweetened), subscriptions to two magazines (Nature Friend and National Geographic for Kids), some Professor Noggins quiz games (nature theme questions), and another favorite game of his from his Grandparents – Rat-a-Tat Cat. Thankfully he got some good use out of most of those presents!
After opening presents we had an open house for his birthday. We had a nice number of friends stop by and wish him a happy birthday. They got roped into playing Rat-a-Tat Cat with him. All in all it was a special time.
In the evening our church had a Thanksgiving Eve service that we attended together. It was a special time of expressing our thanks to God for the past year. The church spent some special time wishing Judah a happy birthday and praying for him. Leland shared the gratefulness we have for people’s help there and also the gratitude for how God is using these hard times to bring us closer to Him. Judah also shared in the congregation time of sharing that he’s grateful that he’s gone through his time of having cancer much better than many other people have. All in all it was a special day.
Last year Thanksgiving fell the day after Judah’s birthday. We had a quiet day at home because of some illnesses that prevented us from having people over. A few of my kids including Judah went with Leland to a local restaurant where they were having a free Thanksgiving meal for anyone who wanted somewhere to eat. They went to help deliver meals to people who couldn’t make it there. It was nice for them to give back to others.
Thanksgiving this year wasn’t easy. We ended up eating at the community meal and donated some food and helped with clean up. Then we went to my parents’ house and spent some time with them. I spent some time in the morning going through old pictures to put together for a slide show of Judah. We are having some people over tomorrow and I want to show the pictures to celebrate his life. All in all it has been a pretty emotional day in thinking about missing Judah for Thanksgiving and his birthday that “should” be happening. I started thinking of what “isn’t” and thought a comparison of what “isn’t” and what “is” would be good for me.
Isn’t – Judah isn’t here with us for Thanksgiving. vs. Is – Judah is in heaven giving thanks to his God in person and experiencing his love and joy and peace.
Isn’t – Judah isn’t receiving gifts from us vs. Is – Judah is receiving every eternal blessing imaginable.
Isn’t – Judah isn’t there for me to love and enjoy vs. Is – Though I miss him greatly, my other kids are there for me to love and enjoy.
Isn’t – Judah isn’t in our family bringing us joy. There is a hole there. vs. Is – Judah is there in our memories and has taught us many things that we wouldn’t have learned without this hard experience.Isn’t – The fact that Judah isn’t here anymore with us brings me great sadness that I don’t often find time to grieve over. vs Is – God is faithful to bring me times of sorrow and comfort me through them but he also allows me joy with my other children.
I can choose to focus on what isn’t or what is. I believe that behind every difficulty is a blessing waiting to be found. It might not be an immediate blessing. No, it wasn’t good in any way for Judah to die. I would choose to have him with us in a heartbeat. But God is more real than ever to me as a result of walking this road with Judah and this time of grieving since.
I struggle with grief. How do I grieve without being self-absorbed? I fell into that trap some today. I didn’t come to God with my grief and had wrong expectations of those around me. I found that I needed to be honest with my family about my sadness. What do I want? What do I need? How do I give those around me an opportunity to bring comfort? Do I just be tough and not “need” anything? Most of the time I don’t feel like I’m grieving because life is so full with 8 kids at home. So most of the time that people see me they wouldn’t see that I am sad or need much. But when there is time to reflect or certain memories come, the grief can hit me. How are people to know when I am sad and what I need? I often don’t even know myself. Do I want to cry with someone and be vulnerable? Why are some people easier to cry with and others not? I don’t have all the answers but I pray that God will daily guide me as I make sense of how to travel this road of grief.
So as we celebrate Judah’s birthday tomorrow – his first one with no pain or sadness or affects of sin – his first one with God, I don’t know how I will be feeling or how the day will go but there are several things I know. I know that I am so thankful for my funny, enthusiastic, goofy son who enjoyed games, sports, nature, his family and his life to the fullest. I also am so thankful to God for his faithfulness through this crazy journey we’ve been on. And finally I’m so thankful for each of my family members who are so creative and special in their own ways and bring me so much joy. HAPPY 12TH BIRTHDAY JUDAH!
20 Questions cake
It’s been a long time since I started this series and I’m finally getting around to finishing it. Life has been very busy and I haven’t made time to write. Lately it’s been hard with all of the memories from a year ago. A year ago we were starting our trips to Pittsburgh. Tonight is the final game of the World Series. I remember sitting in Pittsburgh and watching the World Series with Judah as his favorite team, the Royals, were playing in the World Series. It’s hard to believe a year has passed since then. So I will finally write about Judah’s last trip to Pittsburgh. Maybe I’ve put it off too because it’s the last trip and Judah had some rough times on that trip.
Before we left for this trip there was a bit of stress. About a week before our trip we realized the Allison probably had whooping cough. A bunch of the family had had coughs. We took one of our children to the doctor to get tested but hadn’t gotten the results back, but clinically it was pretty clear that whooping cough is what they had. I had some conversations with various doctors who gave the ok for me to come but I had my baby stay with a friend in the lobby during the appointments and we had to wear masks. She was possibly past the contagious period by the time we were traveling.
This trip was one of our longer trips. We had a super early flight out on January 2nd so instead of traveling to the airport in the night, we were able to get a hotel voucher to stay the night in Duluth. Then we had to get picked up at 4:30 in the morning at the hotel and take an early flight out through Chicago. We went to bed pretty quickly at the hotel so we could get good rest.
The travel the next day went fine. Thankfully Allison didn’t cough much on the plane or around people. She usually mostly coughed at night. After getting to Pittsburgh, we went to our hotel and got settled in. Then my friend who we had met on an earlier trip on the picked us up and took us to her house to hang out. They had a lovely house and some cats. Allison liked the cats. She took a bit of a nap there. They had some food for us as well. Judah had some gluten free “miracle noodles” with butter and some vegetables. He enjoyed his different food. We had salad and lasagna. It was delicious and a treat to eat wonderful, real food. Judah did have a seizure and fell over once at their house but thankfully fell on a nice soft carpet. After an enjoyable time there they brought us back to our hotel. We had to get up fairly early the next morning to get to Judah’s appointment so we went to sleep fairly early.
The next day we were up fairly early to take the shuttle to the hospital. I met two other families on the shuttle ride who were participating in the same trial which was interesting. One of my other Pittsburgh friends who had helped us at the hospital during Judah’s 2nd MRI met us to take care of Allison. She kept her downstairs and we went up to the floor. They put us in an isolation room because of the whooping cough precautions. I was able to talk some with the research doctor because of concerns about Judah’s seizures and symptoms. He did reassure me that the seizures that were a result of the treatment shouldn’t worsen any more. That was good to hear. Then we went over to get Judah’s vaccine. We did have to wait a while there but finally got in and go the shot done.
My friend from the airplane picked us up from the hospital and took us to the National Aviary. We got a wheelchair for him to use. We ate lunch there. I had some of Judah’s pizza that I had brought with. Unfortunately Judah was pretty lethargic and quiet and didn’t seem too interested most of the time. Afterwards we went back to my friend’s house. Judah watched Cars 2 that we had brought with and rested. She had Chinese food for us and Judah was more alert and enjoyed trying out chopsticks which he was actually somewhat successful with! After another wonderful time there we went back to the hotel to get some sleep before another early morning departure for the airport at like 4:15 AM.
Our trip home was pretty rough. Judah was using a wheelchair and using the bathroom was a struggle and needed my assistance. We had to wait a long time for transport assistance in Pittsburgh. Then towards the end of our first flight Judah threw up all over himself. I thrust Allison into some young businessman’s lap telling him my son with a brain tumor just threw up and got some bags and paper towels from the flight attendant to clean him up just in time for our descent into Chicago. Thankfully Allison was fine with the strange man.
In Chicago Judah continued to throw up some thankfully not all over himself. We got to take motorized transport to our next gate. Our last flight was better though getting on and off the plane was a challenge. It was a relief to be home.
Judah was pretty wiped out for a couple days but recovered to having less seizures, walking around normally, and talking more loudly and with more of his typical enthusiasm. Unfortunately this wasn’t a long-term change and as Judah’s next Pittsburgh trip approached it was more uncertain if he could handle it. I chose to have a family friend also get a ticket to come along and help but in the end, Judah had an MRI beforehand which showed significant progression and he was removed from the trial. Our trips to Pittsburgh were done.
I miss Pittsburgh. I made some great memories. I experienced God’s provisions in so many ways and experienced so many emotions there. Some day I would love to go back there and remember my times there and see the people who touched my life there. Although the treatment wasn’t successful, I am left with memories, relationships and lessons learned through our time in Pittsburgh.