The Power of Words

I was in sixth grade when I realized the power of words for the first time. 

For whatever reason, I decided to write a letter – a very mean one – to someone who was a friend of mine, a friend who had done nothing wrong. To this day I have no idea why I wrote it, but I have never forgotten the lesson learned. That girl and I were never friends again and because we had hung out in the same group of friends, it made my life so awkward. I still feel shame when I think back to how I made that girl cry.

It happened again in high school with my best friend. I decided that I didn’t want to be friends anymore (eye roll) and wrote a letter. Sigh. My parents kept telling me to stop writing letters and that was the last time, THANKFULLY. She and I are still friends to this day (31 years and counting) and our friendship is stronger because of it, I think.

I can’t go back to sixth grade or high school (THANKFULLY) but I’ve tried to be very careful with my words ever since. While I certainly still make mistakes, I do what I can to avoid having difficult conversations via text/email because of the inability to read tone. I choose my words carefully and use abundant emojis to convey my emotions.

Everyone has a lens through which they perceive and process life, and we all have our own “settings” and filters through which we process information; because of that, I also do everything I can to assume the best when others write to me and never assume that they are being rude, mean, or angry. I read the tone as being friendly unless proven otherwise. I don’t know what may be behind the words, I don’t know what mood they are in or what is happening in their life, so I choose to believe they are being kind.

This week I was reminded that I can only control my words and my responses. I was reminded that, as well-meaning and good as I may think my words are, they are up for interpretation by the receiver and the result may be less than ideal.

I have, yet again, found myself in a situation where I may be losing a friend because of words (but NOT with a mean letter like sixth grade or high school!) even though that is the complete opposite of what I want. And it has been devastating. Looking back, I can see why this person took what I said the way that they did, and I can also see how this could have been avoided entirely had I done it in person. It was just easier to text, so I did. And now we’re in a mess.

I don’t write this for pity (I made the mistake). I don’t write this for gossip (hence the lack of details). I write this to encourage you to stop having difficult conversations with written words. Pick up the phone. Get together. FaceTime. Hear the person’s tone. Assume the best. Be willing to accept feedback and constructive criticism from those who love you. Offer abundant grace to your imperfect friend/family member. Don’t allow friendships to be destroyed because of misunderstandings that could have been avoided. 

I clearly still need to learn this lesson. Maybe this is why the Bible is filled with verses about using your words wisely.

I’m still praying that things will resolve and that we can grow stronger because of this conflict. But, I also know that we live in an imperfect world with imperfect humans and that may not be the reality. So, while I am grieving this apparent loss, I’m also renewing my determination to be careful with my words and to never have discussions via writing when they can be better resolved in person.

Friendships are too rare and too valuable to be lost over misunderstandings. Be wise with your words.

Tori’s Bucket List: Be a Bridesmaid

Earlier this year I was asked by one of my dearest friends to be her matron of honor for her wedding; I was so excited and honored to be in this role to support Shannon throughout the wedding planning process and couldn’t wait to begin the planning.

And then Tori got sick.

As our world changed, I continued to try to do my best to be as supportive as I could from Pennsylvania despite all of our challenges with our new normal so that her special day would not be hindered by Tori’s situation in any way.

Late this summer, I was talking with Shannon about her wedding and about Tori, and she had an idea that touched my heart deeply: she asked if Tori could be a bridesmaid in her wedding! I was so moved and happily said yes.

Shannon picked out the cutest dress and sweater for Tori to wear, and she even made Tori her own adorable brooch bouquet!

The love that Shannon has for Tori means more than I can express, and having Tori be part of the bridal party with me was priceless.

Tori seemed to enjoy the day as well (until the ceremony – then it was nap time so Daddy took her out into the lobby).

The entire bridal party was so helpful and supportive of Tori and her care throughout the day – Shannon even learned how to suction her! So impressed!

Here are just a few of the amazing pictures that Thomas Beaman Photography captured – I only posted the ones directly related to Tori and me for this post.

Note the bowtie on her giraffe, made by the talented Jana Speck just for the occasion.

Thank you, Shannon and Chad, for allowing Tori to have this honor on your wedding day. I cannot express how much it means to us that you would ask her to be there by your side.

Tori’s Bucket List: Pedicure with Mama

Being raised in California, pedicures have long been a favorite of mine.

When I was pregnant with Tori, my mom took me to get a pedicure for Mother’s Day and it was the first time we had done that together.

It quickly became something I wanted to do with Tori (and any daughters that may follow) so I added it to Tori’s bucket list.

Karen – a neighbor who has become so dear to us – set it up at a local salon and made it her treat. She even took us to Starbucks beforehand! 😄

Our friend Shannon happened to be in town so she came along to take pictures; so, between my phone and her photography skills we captured this adventure well.

We met Gail in the lobby and she said that she has been following Tori so she was so excited to be the one to do our pedicures. ❤️

Tori went first and Gail was so nervous about doing her nails because they are so tiny. I reassured her that I was not expecting perfection – I just wanted the experience with my daughter. Tori’s nails are so incredibly tiny and I knew it wouldn’t be easy, but Gail did a great job!

Tori enjoyed the experience and stayed awake for hers. She napped during mine, which was wonderful because I was able to fully enjoy the experience and didn’t have to worry about caring for her constantly.

Thank you, Karen, Gail, and Shannon for making this possible! ❤️




How You Can Help

We are asked several times a week how people can help us practically and tangibly, and we usually don’t have an answer. God is taking amazing care of us and we are so thankful!

We are doing okay financially thus far, thanks to Brennan’s hard work and his excellent job and benefits, but we still have very tight pay periods from time to time. We continue to live on a strict budget in order to make it work. 

Your prayers and notes of encouragement are an amazing blessing to us – we keep them all!

We have been told that some want to do more to help us, and we don’t want to say no to others’ desire to help. We, too, love to tangibly help others whenever possible, so we understand the desire to “do more” when possible.

So, Brennan and I have come up with a few things that would be helpful IF you wanted to support us in this way, but it is in NO way expected. 

  • The original GoFundMe account is still active. The link is: https://www.gofundme.com/luphsw?fb_action_ids=10205843215261819&fb_action_types=og.shares We reported how we made use of the funds in this post. The funds were depleted in July with the necessary purchase of the van, and we are so blessed each day by that vehicle! 
  • Some of Tori’s medications were ruining our cloth diapers so we switched to disposables a couple of months ago. She currently wears size 2 Pampers Swaddlers. Wipes would be wonderful as well.
  • Jimmy John’s gift cards (they deliver and Lesa orders lunch from them when Tori has rough days because it is fast and easy).
  • Donations toward a monthly housecleaning service (we had it done in June by a wonderful local woman and it was an amazing help to us; she charges $60).
  • Panera gift cards are a great healthy dinner help.
  • Dream Dinners gift cards so we can have meals in the freezer for easy dinner prep.
  • PeaPod or Giant gift cards for grocery delivery
  • Coffee is pretty great 😉
  • iTunes gift cards would allow us to buy some new worship music…
  • Amazon and grocery gift cards are always useful.
  • Anything that reminds us to take care of ourselves is great too – like getting new clothes (Old Navy, Gap, Kohl’s, JCPenney, etc.), pedicures :), or haircuts.

Our mailing address is:
Team Tori
P.O. Box 126425
Harrisburg, PA 17112

The biggest thing you can do to help is to continue to spread the word, write to legislators, and fight for Newborn Screening for Krabbe!

We can’t think of anything else, so hopefully this is helpful if you are one of those who have asked us how you can help! ❤️

You have all blessed us more than we could ever repay – thank you for bringing such joy to our lives during this challenging season.

RYFO: Serving the Voices

  
We were introduced to RYFO about four years ago and it quickly became one of our favorite ministries ever. 

It all started with this video coming across my Facebook news feed – a collection of interviews of RYFO host homes and testimonies of their experiences. I showed it to Brennan and we knew we had to be part of this!

(See more videos here: https://m.youtube.com/channel/UCh4CyYbZK-iy1FuuBbxdmIw )

RYFO seeks to serve and care for musicians as they travel the country. Musicians pour their hearts out on stage to their fans and we seek to fill them back up.

When bands are just starting out they don’t make much money – sometimes enough to pay for gas to get to the next venue and maybe some food.

Many times they are forced to sleep in their vans – in summer and winter’s extreme temperatures – because hotel rooms are out of reach.

Fast food and snacks are the norm for months on the road. Good nutrition is difficult to maintain.

It’s not the most glamorous life when you are just starting out, but they do it because they have huge dreams and they are taking their passion on the road, sharing their music and their hearts with their fans night after night.

Because of this, a clean bed and home-cooked meals are heavenly to these bands! 

RYFO saw a need a created an ever-growing network of host homes across the country, and we are one of them! 

Brennan and I share the mindset that everything we have is the Lord’s – including our home – and we love opening our home to traveling bands. We have hosted close to 20 bands over the past few years and absolutely love the experience!

What does a typical stay look like?

We set up our basement – we can sleep 11-12 comfortably – with air mattresses and couches. There is a full bathroom and a laundry room down there, as well as all our entertainment options (TV, Wii, etc.). We leave the wifi password in plain view 😄 

We provide snacks and water bottles for them as they are often hungry when they arrive (which is often late).

How much time they come up to visit with us is always up to the band – we know they are exhausted and need privacy and rest. But the entire house and yard are open to them, and we love when we get to host.

We may not appreciate their genre of music, but we love them and serve them regardless of our musical differences 😉 We joke with our metal bands about that all the time – they are reaching people we couldn’t easily reach!

The bands will tell you that these host homes are a blessing to them, but we can attest that these musicians bless us far more! We have met some amazing people through this ministry!

You don’t have to have a huge, perfect home. All you need is an open heart willing to open your doors to these wonderful men and women as they travel the country in pursuit of their dreams.

If you are interested in learning more, check out http://www.ryfo.org/help and pray about being a host home! 

We need many more in several areas of the country, so if this sounds like you, please apply today!

Financial Transparency and Blessings

We have been wanting to share how we have been using the Team Tori funds for quite a while as a way of being transparent, as well as to show our stewardship with the amazing financial blessings that have been sent our way by very generous people.

Since the amount is publicly known, we wanted to use this as a way to say thank you once again. We don’t feel that we “owe” an explanation, but we want to give one as a way to show you how much your generosity has blessed us and has enabled us to take even better care of Tori than we could have on our own.

When our friend Jessica surprised us with the GoFundMe page we were still in the hospital with Tori, pre-Krabbe diagnosis. She set it up to cover both medical and living expenses that we might incur because of Tori’s situation. We had no idea what we were facing or how much it was all going to cost. To say that we were blown away by the support that came in is an understatement!

We would have been more than happy with the original goal she set of $5,000, which would have covered our deductible and out-of-pocket requirements for our insurance; but you kept giving and giving, and eventually over $19,000 was raised. That doesn’t include the cash, checks, and gift cards that were sent directly to us, either!

You may have been wondering how have we spent the money, so we want to share with you that we have done so very carefully. This probably doesn’t include everything because my memory has been affected by a lack of sleep, but it gives you an idea! We promise that none of it has been used frivolously or carelessly, and all has been for Tori’s benefit.

Because of your generosity, we…

  • Filled up our HSA (health savings account) as much as was allowed legally in order to pay medical bills;
  • Purchased a deep freezer to hold Tori’s breastmilk;
  • Purchased essential oils to aid in keeping Tori (and us) healthy, as well as to help with pain relief for her;
  • Purchased an inexpensive laptop ($300) for hospital stays and traveling so that we could update the blog and communicate properly (we discovered how difficult it was to only use our phones while we were in the hospital for five days with her in February);
  • Purchased supplies and ordered photos to create her Project Life albums so that her story is fully recorded in words and photos;
  • Reduced Brennan’s work week from five days a week to four days so that he can be home with Tori three full days a week…
  • Started making memories with Tori off of her “Bucket List“;
  • Paid for our stays at the Ronald McDonald House and other expenses to get us to and from Pittsburgh for her appointments;
  • Took Tori to California to see Lesa’s side of the family, who aren’t able to travel to see her in Pennsylvania;
  • Helped another Krabbe family pay for a piece of equipment they desperately needed and insurance was fighting with them over;
  • Traveled to the Hunter’s Hope Symposium where we received much needed encouragement and knowledge;
  • And more than I can even remember, I’m sure…

All of that listed above amounts to less than $10,000.

On top of this, you all voted diligently and we won $1,000 in free gas from Exxon! This is going to last us for a very long time and we were able to take gasoline out of our budget! Huge blessing!

As you can see, YOU have been God’s hands and feet to us, and through you He has taken care of some significant needs during this time. This has eased some of burden we carry in this journey with Tori and has allowed us to have much-needed time together as a family. Priceless.


We have been so fortunate to have amazing primary insurance that has covered EVERYTHING for us. We do not take this for granted or even expect it to continue, given the issues that so many families have shared with us.

We had kept most of the money in savings in order to pay for things we assumed that insurance wouldn’t cover, but, thus far, Brennan’s insurance has covered all of her equipment, even the $5,300 adaptive stroller!

But, once we got the stroller we realized that we had a significant problem: it wasn’t going to fit in either of our cars.

Her stroller, which provides comfort and support so that she can travel more comfortably, would not be able to leave the house/neighborhood.

We realized that a different vehicle would be required, so we started looking, knowing that we didn’t have the money saved up to pay for it (we follow Dave Ramsey and don’t believe in financing anything 🙂 ), nor could we afford a car payment right now.

So, after seeking counsel from trusted friends and family, and after prayer, we decided that this was the best possible use of the Team Tori funds that we had left. After all, what good is all of this equipment if we can’t take Tori out of the house?

We knew our budget of $14,500 was low for a minivan, but we started looking anyway. There were three used minivans on the market at local dealerships, all with low mileage and unbelievably low prices. We consulted with a friend who is a car expert and he advised us to pursue one of the three – the same one we loved!

So, we went to the dealership, test drove the one van (2011 Dodge Grand Caravan Crew) we loved the most (and Tori slept through the entire test drive because she was so comfortable in it!); they wanted more than we had for it, but Brennan did an amazing job of negotiating and talked them down to exactly what we had left in the Team Tori fund!

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We paid for the van in cash and walked away SO excited, knowing that Tori would now be SO much more comfortable in “her” van, and knowing that we didn’t have to be afraid to take her out of the house as much anymore.

Tori always used to cry in the car…she rarely cries in the van now. It is obvious that the smoother ride has made a difference for her.

We absolutely believe that the purchase of the van was a God-ordained thing! From the timing to the amazing van we found for just the amount of money that we had, to the fact that it can not only store all of Tori’s equipment with room to spare AND she is comfortable, it has been one of the greatest blessings of our lives.

The fund has been building back up thanks to so many donations toward her “Bucket List” – and that is exactly what those funds will be used for. Experiences, memories, joy. Designated funds are used as they are designated.

We are very diligent with these generous gifts that you have given to us and we do not take your generosity for granted. Every gift that we have received has left us in awe and wonder of God’s love – and your love – for Tori and for us, that even in the middle of the worst storm of our lives, He is there, calming the waves and making a way for us to focus on the important things, like loving Tori with our whole hearts.

So, THANK YOU. Thank you for supporting us, for organizing fundraisers, for designing t-shirts and bracelets and Jamberry wraps; for bringing us meals, for pumping breastmilk so that Tori has nourishment; for sending Tori cards and gifts (and giraffes), and for allowing the three of us to have so much cherished time together; thank you for spreading awareness about Krabbe and leukodystrophies, for contacting your legislators about Newborn Screening legislation.

Most importantly, thank you for continuing to pray for Tori and for us. We know that God hears our prayers, and even if He chooses to answer them in a way that we don’t like, we will still praise Him and serve Him, because we know that He is good, loving, and kind.

Thank you doesn’t seem like enough. This long post doesn’t seem like enough. Know that we are so blessed by each and every one of you who follow Tori’s story. Your encouragement and prayers get us through each day ❤

Hunter’s Hope Symposium: Day Three

Today’s format was similar to yesterday: breakfast, seminars updating us on current research and legislation, and plenty of social time. 

One of the amazing things that was shared was this: some of the leukodystrophy researchers who work for Hunter’s Hope were here for our welcome dinner on Wednesday; as they saw all of us with our babies and heard some of our stories, it apparently impacted them greatly. As with any career, you can become jaded and it can feel like just a job. Being with all of us increased their urgency to continue searching for a cure, better treatment, etc. because they realize that time doesn’t just cost money, it costs lives. I am so thankful for the brilliant minds who are working so diligently to stop these diseases from taking more lives.

Tori was having a rough time this morning and we think it was a tummy  ache (note the outfit changes in the photos 😉). Thankfully, after a good nap, she was much happier. 

  
    
    
    
After lunch the men and women split up for a couple of hours of sharing and processing. It was a powerful and emotional time as we each shared our stories and struggles of everyday life with a terminally ill child.

The extra special thing about today was that we were all able to participate in the Every Step Walk (you all helped us raise over $1,100 for Hunter’s Hope!) this evening.

    
    
Before the walk, balloons were released in honor of all of our babies and the ones who have gone before. They played the Carrie Understand one “I’ll See You Again” and it was such a powerful time as we watched the balloons float away until we could no longer see them.

  

  
We then all did a short walk and all got to be celebrated as we crossed the finish line. 

    
  

After dinner we had some fun activities and more cuddle time with our babies.   
  

  
    
    
 

Tomorrow is a free day for the families until dinner, so we will be taking it easy most of the day. Brennan is going to play golf with some of the other men in the morning, and I am having a massage in the afternoon 😄 

We have been so blessed and encouraged by being here, and though we never wanted to be part of a community like this (who does?), we are so thankful for each and every person here and for the encouragement they provide to everyone else. 

None of us can do this on our own, so having support like this is invaluable, and it is vital.