Will They Wonder?

As we walked through the Hershey Gardens today after locating the tree placed there in Tori’s memory, I noticed all of the bricks and sculptures that had been placed in remembrance of a loved one throughout the gardens. 

I tried to read as many as I could as I was – for the first time ever – filled with a curiosity about the stories those bricks and sculptures represented.

Who were those people? What kind of a legacy did they leave? Did they live a long life? Were they loved and appreciated?

For the first time, I wondered about Tori’s tree and whether or not people will actually read the sign, and if they do, will they wonder about her? Will they perhaps Google her name to find out why such a young life is being memorialized in such fashion?

When people see her tree, will they wonder about her story, or will they just overlook it and walk on by?

Because she was so very important to us, it’s hard to think about people disregarding her tree and not wondering who she was. But, I was reminded today that I do it all the time to others. 

People have their loved ones’ names put onto bricks and other memorials so that they might be remembered and not forgotten, and we walk right by (or over in the case of the bricks), not even giving them a second glance.

While I cannot force people to read her name and wonder about our precious girl, I can make sure from now on to read such memorials and think about what they represent, knowing that the person must have been beloved for someone to have placed something like that in their memory. I can pray for those left behind – pray that they learn to love Jesus, love others, and leave a legacy that changes their family for the better.

Life is so very short, so let’s continue to love well and remember those who have gone on before us, however we choose to do so. 

Fleeting Moments

Before Tori was born, many people told us to cherish the early years because they would go quickly, never to return.

After she was diagnosed with Krabbe the moments moved faster and there was nothing we could do to stop the momentum. The days were fleeting, and we wondered each day how many more days we had with our beloved daughter.

As a photographer, it was natural for me to take thousands (more like tens of thousands) of photos of her, every angle and perspective possible, hoping that I could remember everything once she was gone.

But, the problem is that what can’t be captured on film is what I miss the most.

I couldn’t capture how it felt to hold her – something I did for hours each and every day. How it felt to feel her breathing. Her smell. The touch of her soft, smooth skin.

I couldn’t capture her soul, the very thing that makes us who we are.


Miss Tori has been with Jesus in Heaven for over two months now and it is still strange. The impact she had on my life is still being discovered moment by moment, and I continue to be overwhelmed by gratitude more than any other emotion.

I think of her almost every waking minute. I now understand what my Dad has said my entire life – that I am always on his mind. I don’t even try to think about Tori – it just happens.

Yesterday, Brennan and I sat down together and watched many of the pre-Krabbe videos we have of her. Hearing her talk and laugh, watching her move freely, and remembering our precious girl before Krabbe took over her defenseless brain brought joy to our hearts. She had the BEST personality, even before she turned five months old.

And I’m still GRATEFUL. Her memory brings me joy, not pain. Peace, not grief.

The KNOWLEDGE (it’s more than just a “belief” as that word is commonly used today) that we will be reunited with her one day brings such excitement to both of our hearts. It won’t be that long in light of eternity!

Tori’s earthly life was cut short, but this life is really just the beginning for all of us anyway. I heard this song recently and I loved the lyrics (especially knowing that Steven Curtis Chapman has also lost a child and his words reflect his experience):

God’s plan from the start
For this world and your heart
Has been to show His glory and His grace
Forever revealing the depth and the beauty of
His unfailing Love
And the story has only begun

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
We’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding

We were made to run through fields of forever
Singing songs to our Savior and King
So let us remember this life we’re living
Is just the beginning of the beginning.

  • Steven Curtis Chapman, “Glorious Unfolding”

We’re still doing well. The fourteen months of preparation for her death certainly have helped in the two months without her physically with us.

We’re still surprised by how easy it is to leave the house now and how lightly we can pack, how quiet our home is without the humming of machines, how free we feel due to the lack of schedule that we have now…

We have our moments where missing her is something we feel physically. A great example of this was when I first heard the song, “Eye of the Storm” by Ryan Stevenson and I was caught off guard by this line: “When a sickness takes my child away and there’s nothing I can do, my only hope is to trust in You.” Powerful truth.

Sometimes it comes out of nowhere, other times it comes out of thoughtful remembrance of our adventures with her. We’ve both shed tears in the past two months during those moments.

But, because of God and who He is, we are hopeful above all else and remain joyful. God is doing amazing things in our lives and is still using our little girl to change lives, even after her death.

Tori was an amazing little girl and her legacy lives on. We have MUCH to be thankful for and will continue to focus on those blessings rather than her absence.

Those tens of thousands of photographs continue to make us smile as we remember the incredible life we lived with Tori, and we will continue living life abundantly until we are reunited with her forever. It will be worth the wait.

 

Her Room

Her room used to be my favorite place in our home.

It was clean, organized, always clutter-free. It was cheerful, colorful, calming. I made sure remained perfectly neat at all times, unlike the rest of the house.

I would often go in there toward the end of my pregnancy and sit in the glider. I would put my feet up and talk to her, already enjoying our time together in that special space that would soon be hers.

We filled her bookshelves with books and her closet with clothes. Friends and family came together to help us get the room ready and to prepare a home for her.

I couldn’t wait to make memories in there with her, to read, play, dress up, look at the maps, and enjoy time together.

   
 

Once she was here, she and I spent countless hours in that room. That’s where I nursed her, rocked her to sleep, played with her, changed her, dressed her. Everything.

Some of my favorite memories of her took place in her room, in her crib. 

   
 

I discovered at some point that I could lay her down with toys and the mobile running above and I could get things done a few minutes at a time. She would laugh, smile, and play. Many of the best pictures we have of her were taken in those moments. 

  

She loved her changing table, or perhaps simply the undivided attention that she received while on it. She would laugh and smile and move around – we called it dancing. She was pure joy.

  

And then Krabbe began to take over her body and everything changed. 

Night after night we would try to lay her down to sleep in her crib and she refused to sleep. She became inconsolable and we finally brought her into our bed out of desperation. 

She would sleep soundly as long as she was near us. Now we know that she longed for the comfort that only parents can give to their baby because she was hurting. Next to us, she felt safe.

And there she still sleeps today. 

She has her half of the bed and whoever is the parent on night shift has the other. The other parent sleeps upstairs in order to actually rest, and because our queen-size bed is simply not big enough for two adults and a baby on a big pillow. 

You do what you have to do.

Slowly, without realizing it, we began using her room less and less until we weren’t using it for anything meaningful anymore.

Her room is now used to store medical supplies, clothing, giraffes, and anything else that doesn’t have a home amidst the growing number of medical devices taking over our home.

The place that brought so much joy now only brings grief. It is no longer the wonderful, serene place where she and I enjoyed so many hours of loving memories.

It’s just a closet.

A Week of Lasts

Most parents reminisce about their child’s firsts – first word, first steps, first everything. It’s exciting to watch our children learn and grow as they explore their new world.

For Brennan and I, it seems that we remember the lasts much more vividly – always in hindsight.

As our Tori loses her previously achieved milestones, we remember. We mourn. 

This coming week, one year ago, was one of lasts, but we didn’t realize it then. 

   

Even now it is hard to pinpoint exactly when she has lost abilities because most of them have happened so gradually that we didn’t even notice; or, we assumed she just wasn’t feeling well one day and therefore was not doing normal things, when in actuality she had lost another ability.

I often wonder if the Lord allowed us to have five perfect months with Tori because of what He knew was going to happen. Five months with a perfect baby; five months of smiles, laughter, and joy; five months of calm before the storm.

This week last year was the last time Tori smiled, laughed, played with her toys, attempted to move on her own, and many other abilities. 

This video is the last one we have of a “healthy” Tori – still happy and able to express herself. Still able to play.

One year ago today. ❤️

  

These were her five month pictures, December 30, 2014.  
 

These are the last two photos we have of her smiling ❤️ It’s a slight smile, but it’s there. January 6, 2015.

 

She rolled over for the first and last time this week last year.

 

And then the number of photos posted daily slows down drastically, indicating that Krabbe came on with full force. 

She stopped being herself so suddenly and we didn’t even realize it at the time.

However, in the midst of the sadness these memories bring, there is also immense joy. 

Every breath she breathes. Every time she opens her beautiful eyes. Every sigh of contentment. 

Every day that we are given with her is precious beyond words and we are filled with gratitude.

We are thankful for her presence. For how she has impacted our lives and the lives of thousands who follow her story. For how she has changed us for the better.

She has taught us to love abundantly, to live fully, to forgive wholeheartedly, and to show grace freely.

We are thankful for our Victoria.

God gave her to us for a reason, and we will love her for the rest of our lives. We love this baby girl even more than we did one year ago – our love is more fierce, more intentional, more compassionate.

She is such a fighter and we can see her continue to try to fight Krabbe with all she has: she is only on one med now instead of three; her visual perception *improved* as of last month. She even held her head up by herself two days ago!  

We don’t know what the future may bring, but we cherish every moment we have with Tori and continue to live life with her to the fullest ❤️ It’s the least we can do for our baby girl.

Photographs and Memories

My philosophy as a photographer has always been to overshoot rather than undershoot. I’d rather have many unneeded photos that I end up deleting than to not have ones that are necessary.

  
  

From the day Tori was born she was photographed daily in an attempt to capture everything, to share her with family and friends everywhere. I would take pictures while Brennan was at work to text to him. I would send them to my parents in California. I would post them on Facebook and Instragran daily, which helped people fall in love with her (even before she got sick).

In a way, this helped everyone feel like they were right here with us instead of across the country.

  
   

We captured as many expressions and moments as possible – on camera and on video – so that we wouldn’t forget anything.

There were those who commented about my obsessive photo taking at the time, in jest, I assumed, saying that I was clearly a first-time mom because of all the photos I posted.

I don’t regret a thing.

We had no idea what was lurking around the corner; we had no indication that we would lose so much of Tori on January 7, 2015. 

Now all we have are these thousands of photos and videos to remind us of her personality before Krabbe.

   
    
   

One day (without a miracle), the photos of Tori on TimeHop will be only from the distant past. No new photos will have been posted because she won’t be with us here on earth any longer. 

And that is going to be painful.

I have realized lately that now, now that we know that time with Tori is painfully short, I take photos constantly because I am desperately trying to capture every angle, every detail, every expression in a vain attempt to hold on to her. 

It’s almost as if I am hoping that, if she leaves us, these photos will take me back to these moments of holding her, that they will remind me of how it felt to cuddle with her. That I will be able to almost feel her weight in my arms.

I know that nothing will bring her back, but these photos will help ensure that we don’t forget the little things about her, the things that typically fade with time.

Ultimately, we have realized that we don’t  know when the last photo of her will be taken, so we subconsciously live as if each day could be the last day we have with her and photograph as much as we can.

___________________________

The point of this post is this: 

NO ONE is promised tomorrow. No one. 

Though I wish we would be the last parents to lose a child I know that, sadly, it isn’t going to be the case. For many it will be unexpected, with plenty of room for regret; for others it will be like our journey – expected and yet the length of time left is unknown, also leaving room for regret. Both are excruciating.

Brennan and I will never be the same. Tori has changed us in incredible ways and we pray that these changes are permanent. We are better people because of everything we have gone through this year. Perfect, no. Improved, definitely.

So, here are a few things that Krabbe has taught us in the past ten months, and we want to challenge you with these very things today:

Time is short, even if your children outlive you. In light of eternity, life here on earth is merely a vapor, gone all too soon. Love them fiercely and abundantly.

Take more pictures than you could possibly ever need. Enjoy every possible moment with your family. Treasure each stage of your child’s growth because it will all too soon be replaced by another. 

Don’t let the little things bother you. Keep a clear and healthy perspective on life and let that transform how you treat people. Remember that everyone has a story and a context and if you don’t know their context you will likely misjudge them.

Remember when you are frustrated with your children that there are parents out there who would do anything to be reprimanding their child because theirs was taken far too soon.

Focus on what really matters in life and stop making a big deal of those things that don’t matter…like red Starbucks cups 😉

Choose joy every single day. Choose love every single moment. Offer grace freely even when you don’t feel like it. 

And take as many photos as your heart desires. ❤️

Because you have no idea when your life – or the life of a loved one – will be over.

Tori’s Bucket List Update

When we posted about the bucket list of experiences we had developed for Tori, we never expected the response that we received!

For us, it was merely a continuation of her story, of how we are trying to live life with her as fully as possible while we have her here.

So imagine our surprise when many people messaged us and generously offered to cover costs for specific experiences! We are so grateful! We will blog each experience and publicly thank those who made that experience possible.

So, here is the list organized differently than before:

Planned/Scheduled Experiences:

  • Catch fireflies (July)
  • Have a picnic at Lake Tobias (July 30)
  • Feed Giraffes (August in Pittsburgh)
  • Harrisburg Senators Game (August)
  • Kayak in the creek (August)
  • Butterflies at Hershey Gardens
  • Boardwalk at Hersheypark – Lazy River
  • Feed ducks at Hersheypark
  • Baltimore Aquarium (September)
  • Disney World (September)
  • Grand Canyon (October)
  • Disneyland (October)
  • See mommy’s college -APU (October)

Still in progress:

  • Beach/sand castle (September)
  • Hershey Bears Game (fall)
  • See daddy’s college (PSU)
  • Penn State game (September)
  • Pride of the Susquehanna
  • Statue of Liberty/Staten Island Ferry
  • Philadelphia Flyers game
  • Go to as many states as possible (PA, CA, MD, NY so far)
  • Fishing
  • Finger paint something for mommy and daddy
  • Daddy/Daughter Date (with mommy there to help/photograph)
  • Pumpkin Patch
  • Cut our own Christmas Tree

Completed:

(Some of the “in progress” items have been offered but not scheduled yet.)

You may have noticed Disney World and Disneyland on the list…we are still working out the details, but a foundation (more details later) has offered to send us to Disney World in September! AND, a Disneyland employee invited us to be her guests for the day when we are in SoCal in October! We are blown away by both of these opportunities!

Our goal with the bucket list is to create as many stimulating experiences for Tori as we can, experiences that every child should experience.

We need to create memories as a family no matter what, but it is especially important given Tori’s situation. We want to give her an abundant life, no matter how long. Thank you to those who are making it possible!

Tori’s Bucket List

As we talked with other families at the Hunter’s Hope Symposium we discovered that many of them had “bucket lists” of things they wanted to experience with their children while they are still with us. We decided to create one for Tori, as well!

This is a work-in-progress, but here is the current list Brennan and I decided on (most of the ideas are from Team Tori!). We tried to choose mostly local things but a few would require travel. I will add to this post if we come up with more.

We may not get all of this done, but it will still help us remain focused on truly living life with Tori to the fullest. ❤️

  • Feed Giraffes (August in Pittsburgh)
  • Beach/sand castle (September)
  • Harrisburg Senators Game (soon)
  • Hershey Bears Game (fall)
  • Build a Bear
  • See where mommy and daddy went to college (APU and PSU)
  • Penn State game (September)
  • Pride of the Susquehanna 
  • Grand Canyon (October)
  • Baltimore Aquarium (September)
  • Statue of Liberty/Staten Island Ferry
  • Disneyland (October?) or Disney World
  • Catch fireflies (July)
  • Have a picnic at Lake Tobias (July)
  • Philadelphia Flyers game
  • Planetarium (PA State Museum)
  • Butterflies at Hershey Gardens
  • Go to as many states as possible (PA, CA, MD, NY so far)
  • Fishing
  • Kayak in the creek (August)
  • Finger paint something for mommy and daddy
  • Daddy/Daughter Date (with mommy there to help/photograph)
  • Boardwalk at Hersheypark – Lazy River 
  • Feed ducks

In case you are wondering, she does not qualify for any Make-a-Wish type programs because of her age. Any trips will be paid for out of our budget, so cost is a determining factor 😄 So if you have any connections to make these things happen and would like to help us, please let us know! ❤️