Tori’s Bucket List: Ride Santa’s Surprise Train

Our local railroad does special Christmas-themed train rides after Thanksgiving. Brennan and I took a train ride with them two years ago (read about it here) and we knew it would be a perfect bucket list adventure for Tori!

So, I called to buy our tickets a few weeks ago and I asked the woman on the phone if Tori’s adaptive stroller would work on the train and explained the situation. She was so kind and said they could even put us in our own area away from others to hopefully avoid germs – so thoughtful!

I received our tickets a week or so later and there was a special note inside, saying that they weren’t going to charge us for the tickets and they wanted us to be their guests for the day. We were so surprised and grateful for their unexpected kindness!

When we got there they also gave Tori a shirt and a conductor’s hat. So sweet!

Meanwhile, Brennan realized that the suction machine was in the van…and so were our keys. Thankfully, the police station was right across the street and they came over immediately to help us out! Thanks, Middletown Police!

We boarded the train, which was decorated in lights and other Christmas decor, and enjoyed the Christmas music as we headed down the tracks.

Soon, Santa and Mrs. Claus came around with a gift for each child and they were so kind.

Even though Tori just wanted to take a nap, it was still a wonderful experience.

Thank you, Middletown & Hummelstown Railroad for your kindness and generosity!


Thanksgiving 2015

We had a wonderful day today with Brennan’s mom, siblings, and their significant others.

We ate, visited, and enjoyed lots of laughter.

It’s the first time it’s been “just us” for a holiday instead of the larger extended family. ❤️ Brennan’s brother and his family graciously hosted and did a wonderful job.

This experience with Tori has really made us closer and it has been a positive in the midst of the negatives this year.

We’re so thankful to be part of such wonderful, loving families. ❤️


Pittsburgh, Round Four

Today we had our quarterly visit with Dr. Escolar in Pittsburgh and things went mostly well.

Overall, Tori is still doing really well given her early-infantile form of Krabbe. She even improved in her visual/cognitive understanding from a 2-3 month level to a 5 month level! Vision therapy has been helping!

However, as we suspected, Tori’s blood oxygen levels aren’t consistently where they need to be. They put her on .25L of oxygen while we were here to see how her stats improved and they went back to normal.

Dr. E suspects that her breathing has been affected by her distended belly (she’s had a lot of gas in the past week) and by a need for deep suctioning (for which we didn’t have the correct supplies until today) to clear more secretions from her airways.

They did a belly x-ray and found that her colon was indeed enlarged, so we will begin doing a few different things to relieve the gas. They also did a chest x-ray noted that her lungs have some atelectasis, so we will begin treating that immediately with a nebulizer, oxygen, and some other therapies.

Tori will also begin having .25L of oxygen at night, just to help her out. Dr. E believes this will also help her sleep soundly FOR THE FIRST TIME because her body won’t be working so hard to breathe. Mommy is VERy excited about this prospect. This will also give her more energy during the day.

We knew some oxygen would likely be coming soon so we weren’t surprised, but of course we’d rather her be on room air for longer. At least it’s only at night and it’s a very small amount just to help her heart and lungs work less.

Dr. E will be tapering Tori off of baclofen (a medication for muscle tone) because her tone is so good and because she thinks that will also help with her breathing. It will be nice to remove a med from her routine! Tori had been on the smallest possible dose of baclofen anyway so it won’t be a drastic change for her body.

Because Tori was her only patient today we got a lot of face time with Dr. Escolar and had the opportunity to discuss many things with her that we hadn’t been able to before. We learned a lot and feel more prepared for future decisions.

This was a quick trip this time and we are back home already. Each visit brings added therapies and treatments and we’re more than ready to have nursing assistance in the home. But, for now, we’ll continue doing things on our own for as long as we can.

Please pray for Tori’s belly and for her lungs – we hope we can treat these successfully at home and not in the hospital.

Bingo Night Fundraiser 

On Friday night, a fundraiser was held for our family, and it was a wonderful fun-filled evening.

This fundraiser is just one of many examples we can give of God using this tragedy in our lives to bring people together, and an example of strangers becoming friends as they rally around our family to help however they can.

My mom is a Thirty-One consultant, and when Tori was diagnosed she had shared with her fellow consultants about the situation to ask for prayer. One of the consultants, Meagan Warehime, was particularly touched by Tori’s story and wanted to help. She lives only an hour away from us.

She contacted us months ago about wanting to do a fundraiser to help us out with our expenses related to Tori, and we were so humbled by – and grateful for – her request.

But Meagan didn’t just put together a bingo: she also blessed our family with a few surprises, including a gift basket, Geoffrey the Giraffe from Toys R Us (they don’t normally send him to small events like this, but Theresa pulled it off!), AND she encouraged my parents to fly in from California! That was the best surprise of all.

CBS21 also came out to film some footage of the event and interviewed Brennan, but I’m not sure that it has been on the air yet. I will post a link if one becomes available.

Altogether, she and her team raised $2,200 for our family at a much needed time, as our “Team Tori” fund was depleted in July by the purchase of “Tori’s Van” :) These funds will be so helpful in January when our deductible will need to be paid once again. Thank you for relieving that burden of medical expenses!

The words “thank you” aren’t nearly enough, but we wanted to specifically thank Meagan, her husband Matt, their daughter Jenna, Vanessa Clark, Theresa Zikis, Ken Clark, and Terri Cook. Your hard work is so appreciated!

Thank you to the numerous sponsors who covered all the expenses of the event!

Thank you, also, to all those who came to play bingo! Your love and support for Tori and for us is overwhelming.

Here are some pictures from the evening, mostly thanks to my parents – I was so focused on keeping Tori happy (she had shots that morning and wasn’t feeling happy) and playing bingo that I forgot to take many pictures!

We’re NOT Entitled to an Easy Life…

A couple of weeks ago I listened to a sermon by Pastor Chris Brown of North Coast Church in California. Chris was our campus pastor for three of my four years at APU and his teaching style impacted me greatly during those years. God used him to challenge me in ways I couldn’t have imagined. Just looking at the margins of the Bible I was using at the time would show you how much I learned from him!

This particular sermon was about getting “Unstuck” from religion. It just happened to be the next sermon in the series – I didn’t listen to this specific one for any particular reason, but God knew that I needed to hear what Chris would say.

I’m not going to detail out exactly what he said – you can listen to it here. But I do want to mention some of the lessons from his teaching that God has used in the days since to show me more about this unwanted journey we are on and how we should respond.

After the battle was over, the troops retreated to their camp, and the elders of Israel asked, “Why did the Lord allow us to be defeated by the Philistines?”

– 1 Samuel 4:3

In short, this passage in 1 Samuel 4 is about the Israelites relying on religion instead of God. They believed that their rituals would bring them success, but they left God out of it entirely, and they were defeated. They were clueless as to why the Lord allowed them to be defeated. Chris said a lot more about this than I will, as that’s not the objective of this post.

As he continued through the lesson about how you can know if you’re stuck in religion, his second and third points were the ones that impacted me greatly. It’s not that Brennan and I are stuck in religion (thankfully!), but the Lord used his words in a powerful way to speak to me.

The second point was titled, “My focus is on what I get, not the giver.” He discussed the point of prayer: is it to get things to go better for us or to have a relationship with God? 

‘We have turned prayer into what we get from God, not how we get TO God…”God, give me…God, do this…”‘ – Chris Brown

Is God useful or is God worthy? Are we asking Him to give me something or to change me?

The third point was: “I’m angry at God when I don’t get what I ask for.”

“We’ve got the wrong idea of prayer if this is where it leads us.” – Chris Brown

Pastor Chris then talked about when Jesus was in the Garden of Gethsemane before He was arrested. Jesus knew exactly what was going to happen to Him, and yet His prayer sounded nothing like what ours would have been.

Then Jesus went with them to the olive grove called Gethsemane, and he said, “Sit here while I go over there to pray.”  He took Peter and Zebedee’s two sons, James and John, and he became anguished and distressed. He told them, “My soul is crushed with grief to the point of death. Stay here and keep watch with me.”

He went on a little farther and bowed with his face to the ground, praying, “My Father! If it is possible, let this cup of suffering be taken away from me. Yet I want your will to be done, not mine.”  – Matthew 26:36-39

Jesus, knowing that He was about to be brutally beaten and crucified, prayed that God’s Will be done, not His own selfish desires. In his grief and desperation, He knew that what God had planned was best for not only Him, but for all mankind. So He submitted to the Will of His Father, despite the personal suffering He would undergo.

If Jesus Himself suffered, why do we think that our lives should be easy and painless?

“We expect a much better life than Jesus and His disciples, and we all know they got killed and tortured. But we deserve a much better life than that and we demand it in prayer. And when we don’t get it, it leaves us angry and frustrated with God.” – Chris Brown

I’m not entitled to a life of comfort and perfection. WE aren’t entitled to that life! No matter what our culture teaches us, or what the media portrays, life is not supposed to be easy and carefree. God never said that would be our reality.

As we walk through this season of knowing that we are likely going to lose Tori, it has been so tempting to be frustrated with God. We haven’t been angry with Him, but there have definitely been times when it seems like He is so far away, like He is ignoring our prayers. Sometimes it feels like we are alone.

The unanswered prayers for Tori to be healed aren’t the ones that cause the frustration: it’s the simple prayers like the ones for her to sleep so that we can sleep, because our continual sleep deprivation is wearing on us. It seems like something so easy for God to do, and yet He doesn’t answer them the way we want Him to answer.

We’re constantly asking God to make things easier for us – and while there’s nothing wrong with asking for those things, sometimes we lose sight of the fact that we’re constantly asking for Him to do things instead of asking how we can serve/learn/grow through these things.

Who are we to ask God to change His mind? We have no idea what He has in store. We can’t even imagine how He is going to use Tori’s life (and our lives) to impact the world! If He took this cup from us, would His impact on the world through her/us be the same?

When we think about it like this, it almost feels selfish to pray for God to heal her (almost – it’s obviously not selfish to want to keep your precious child).

We will continue to pray for her earthly healing, but we also pray that God will continue to use this situation to impact the world, to grow His Kingdom though Tori’s precious life, that there will be VICTORY through Victoria even if there isn’t an earthly victory FOR her.

Your will be done…

Pastor Chris gave a beautiful example of how we can pray through things like this:

“In the midst of this, if it doesn’t go this way, give me what I need to walk with you and be a light. And God, if this is the darkness we have to walk through, may we shine and may we shine brightly.” – Chris Brown

The Bible contains so much wisdom about how to live this life in a way that honors God. He never promised to do miracles – but He did promise that He would always be with us (Matthew 28:20).

His presence is worth more than His presents.

He tells us to cast our cares upon Him so that He can walk through these trials with us, so that we don’t go through them seemingly alone.

Sometimes He doesn’t take the problems from us, but He always carries them with us if we will allow Him the opportunity.

Lord, may we shine brightly through this unbelievable trial that you have allowed to happen in our lives. Please forgive us for believing that we are somehow entitled to a painless life, free from sorrow. We continue to plead with you to heal Tori, but more than anything we want YOUR Will to be done in her life, not our will. 

Maintaining Your Marriage in the Midst of Suffering

Marriage experts will tell you that it is vitally important to maintain your marriage during the child-raising years because one day it will be just the two of you again. One day you will need to know how to live with each other and love each other without your children around.

Brennan and I have been learning day by day how to maintain our marriage in light of the fact that it might be the two of us once again sooner than we ever imagined.

We’re only ten months into this journey of having a terminally-ill baby, but we have learned so much already about how to focus on our marriage and each other in spite of the constant care Tori requires.

Are we perfect? Nope. We fail daily. But, it is through those failures that we have learned many lessons, and we have grown stronger and closer together.

We share these lessons in hopes that it will encourage someone else who is walking a similar path. Many of these we learned by observing other couples and we are so thankful for their wisdom.

These are all things that you should do as a couple under normal circumstances, but when you are subjected to a tragedy or other stressful season, it is even MORE important to be purposeful about these things.

So, how are we caring for our marriage?

1 – We established from the beginning that this would NOT break our marriage.

The evening of January 30, 2015, as we sat in the ER awaiting results from Tori’s CT scan, I looked at Brennan and whispered, “We won’t let this break us.” He readily agreed. We made a decision before she was even diagnosed to not let the enemy use this to break us apart. It was like a vow renewal in a few simple words.

We make the daily choice to walk through this together, because we promised to do so from the beginning. For better or for worse, for richer or for poorer, in sickness and in health. We believe these vows don’t only apply to the two of us: they apply to our children as well.

We had our first child together and now we are losing her together. Together.

You don’t make marriage vows because it’s a romantic thing to do; you make them because life is hard, times can get tough, and the promise you made is a constant reminder that you are in this together. You promised.

2 – We communicate openly, honestly, and freely throughout this journey.

This has affected Brennan and I differently, so it has been very important to be real at all times. If we are having an emotional moment, we talk about it. If we are struggling with some aspect of our situation, we talk about it.

There’s no reason to hide our emotions in light of all that we’re dealing with, yet we know that is a temptation for many couples. It’s easier to just put our feelings aside and ignore them.

Every day we are faced with the reality that our daughter is dying, and it isn’t something we ignore. We acknowledge the situation and work through the process of grief together as much as we can.

3 – We try to apologize quickly when our emotions speak for us.

When you are losing a child, the grief begins at the moment of diagnosis. At least it did for us.

We have found that there are often underlying emotions that shape our tone of voice and our words without us realizing it at first.

Therefore, we do our best to analyze our feelings to find the root cause, because, more often than not, it is our grief that caused the outburst of emotion, not what the other person said or did.

4 – We forgive each other freely and offer abundant grace.

Grace is probably the most important element of any relationship, but especially for situations like ours.

Offer it freely. Remember that you are both dealing with the most traumatic situation you have ever dealt with and it is new territory.

5 – We are creative with our time to ensure that we still “date” even when we can’t leave the house.

We don’t get date nights. Until we have nursing help, there is simply no one comfortable with watching Tori because of the need to suction her frequently.

Right now we rarely even get to sleep in the same bed because if we did we would both be exhausted all the time. Tori simply doesn’t sleep well. Because she has to be close to us (suctioning), she sleeps on one half of the bed and one of us sleeps on the other half. The other person sleeps upstairs so that they can get some rest. This is our reality right now and we make the most of it.

So, in order to still “date” each other, we found a show we watch weekly together and laugh together as we enjoy it. We take advantage of Tori’s typical evening nap and we eat dinner together and spend quality time together.

It isn’t about quantity in this season – it’s about the quality.

6 – We allow the primary caretaker to have some alone time whenever possible – and we take care of the caregiver.

I care for Tori about eighteen hours every day by myself, and I definitely need opportunities to get out of the house. Running errands – which I previously didn’t care to do – has become such a joy for me because I am able to do things by myself, things that otherwise get neglected.

I drive when we go anywhere as a family and Brennan sits in the back to care for Tori. I drive for UBER some nights, which also brings in some extra money. All of these things allow me some time away from being a caretaker while still doing things that are productive and beneficial for our family.

As an introvert, this alone time recharges me and allows me to be the best possible caretaker and mother for Tori that I can be.

Brennan also does his best to do things to take care of me, as we realized that I wasn’t feeling cared for – by no fault of his own! Because my entire life is spent caring for Tori and for him, it has been important to have him do little unexpected things to care for me as well – things like making chiropractor appointments for me. These little things help ensure that I am taken care of in the midst of our crazy life.

As we continue along on this undesired path, we will continue to learn more about ourselves, our marriage, and how to make it even stronger. We will share those lessons along the way because we want to help others as much as we can through their own tough situations.

Every day we choose joy and love instead of sadness and irritation. We choose to be a team instead of individuals. We honor the vows we made before God, family, and friends. And we find reasons to be thankful even when it would be easier to complain.

Our marriage is not only going to survive this tragedy, but it is going to thrive because of our purposeful care of our relationship in the middle of all of this. And yours can, too.

(This post was also featured on The Mighty!)

Tori’s Bucket List: See Reindeer at Hersheypark

One of our favorite Christmas traditions is to go to Hersheypark’s Christmas Candylane. Brennan and I have gone almost every year that we have been together. We love the lights, the music, and, of course, the reindeer!

Since my parents surprised us by flying in for the weekend, we decided to go tonight instead of at the end of December as we had planned. We may go again then, too ;)

Our first stop was the reindeer, since that was the bucket list adventure we wanted to complete. Tori watched the reindeer move around and enjoy their dinner. She was alert and her eyes got big often. It was so neat to see.

We enjoyed seeing Tori’s reactions to the lights and the music. It wasn’t too cold, thankfully – about 40 degrees – and we kept Tori bundled up so that she was cozy.

I forgot my real camera at home so my iPhone had to suffice. <3

Thanks to Karina Boucher for providing the tickets for my parents!