Transparency in Grief

Several people in our lives have expressed concern that we are suppressing our grief or being “brave” for the world instead of being mournful in the wake of losing Tori.

I don’t write this in defense or out of frustration, and I certainly owe no explanation – I write to simply provide insight into how we have been grieving in our own way in hopes that others like us might find encouragement somehow, and to ease the fears of those who are concerned.

I have observed that it is very important to not judge someone in their grief because we are all complex humans with different pasts, different psychological and emotional wellbeing, etc. We all deal with things in different ways and no one way is better. We are certainly no exception.

But we are truly doing well.

From the very beginning of our journey with Tori we have been transparent and honest. We have shared our struggles, our tears, our pain. 

So many of my blog posts have been written through tears as I prayed so desperately for her earthly healing. 

But no one except Brennan knows that.

While it has been less than three weeks since Tori went home to Heaven, it is important to remember that we have been grieving since February 13, 2015. Fourteen months.

Our grief really began on January 30, 2015 after hearing the CT scan results. Brain abnormalities. So many unknowns.

Our grief escalated on diagnosis day – February 13 – as we struggled to comprehend that our six month old baby girl was dying. Dying. 

With each regression, with each ability lost, we grieved again. And again. 

Not every week brought tears, because I’m not a naturally emotional person and never have been. But I will tell you that I cried more tears in the past fourteen months as I watched my baby girl slip further and further away than I have cried in my entire life.

And no one knows that except for Brennan and me. No one has been in our home continually to observe our grief.

We were given the “gift” of preparation for her death, something not all are given. We were able to make memories and have no regrets because we knew our time with her was short.

We thoroughly enjoyed our bucket list adventures with Tori and were so thankful for all of those opportunities because we were able to LIVE life so well with her. We found so much joy in those adventures AND in daily life. True joy. 

We chose joy in the midst of our grief. Sometimes the emotions coincided as we realized that she wouldn’t be with us much longer, but joy prevailed most days.

In retrospect, we are so thankful that we were able to complete most of those adventures before she was on oxygen, before the decline really started to happen. As exhausted as we were from all the traveling and activities, we wouldn’t change a thing.

As her care intensified sometime around mid-February and her “blue episodes” became more frequent, we grieved anew and lived each day in a constant state of being alert. Each time she went blue I felt such panic wondering if this was a dress rehearsal or if this was the final curtain call.

On Easter, as Tori was healed and no longer trapped in a broken body, most of the heavy burden of grief I had felt for so long was lifted. She wasn’t struggling any longer. She wasn’t fully reliant on our vigilance to keep her airway clear from saliva. She was healed! 

As her mother, as the one who was her full-time caretaker while Brennan worked so diligently to provide for our family, I felt – and feel – relief that my baby is now healthy. She is free from Krabbe. She can SMILE!

God’s Word is truth, and His “peace that surpasses understanding” (Philippians 4:7) has truly filled our hearts. We can’t explain it except to give God the glory.

I have yet to suppress my emotions and I will not allow myself to do that, ever. It isn’t healthy and it goes against everything I am. 

Additionally, if I am being fake, how is that going to help anyone in our shoes who might come across my blog and need encouragement?

I have no idea what the future holds, and I don’t know what our journey of grief may look like. 

But, I do know that I will continue to take each day as it comes, and I will continue to live fully in each moment, whether in joy or in grief. And I will continue to blog as transparently as ever, because truth is what changes lives and encourages hearts.

A Prophetic Note Received

I started this draft of this post over a month ago, and I never posted it for some reason. Now I am glad that I hadn’t posted it because God truly did do a miracle in Tori and it is evident that this message to us was prophetic ❤️

We had been shaken because of a rough week with a few scares and many tears about potentially losing Tori. Then this came. Timing is perfect. We didn’t post about the scares at all, so this shows how God has been moving in the hearts of His people to encourage us.

Lesa and Brennan-I was a member of Dreamers and Builders and have been following your story for quite some time. Tori holds a special place in my heart. I think about her often and I have done my very best to lift her up in prayer over the past year. Your faith in God is inspiring and I want to commend you both for putting everything in His capable hands. 

My relationship with God has grown considerably strong over the past few months. I’ve been in growing closer to Him every single day. This morning, I decided to lift up your family in passionate prayer. 

While I was praying and praising, God revealed something to me. He told me that Tori’s story is nowhere near done. He is just about to get to the really great part! He revealed that her life was always part of His plan and that he was not going to orchestrate a story for His faithful children that was not going to have some surprise twists and not going to give him the ultimate glory. 

I believe that something that can only be provided and done by God will be coming your way very soon. I have no idea what it is or could be, but I am being told it is beautiful and glorious and that you will be delivering praise to Him for it. I truly believe this with all my heart. 

I felt the need to write this to you because I feel that you need to hear this right now! I just feel like you may be starting to succumb to sadness and now is not the time! God wants you to no that there is no place for sadness right now, because he is not done! He is about to deliver a surprise. 

So praise Him right now for whatever is coming your way and believe…. Believe that your daughter is part of His divine plan and his plans are always glorified!

Dreams of Healing, Part Seven

Whenever people message us to share dreams they have of Tori being healthy and healed, we save and compile them into blog posts because they are so interesting to us and give us hope. 

You can read all the dream posts here.

We were talking and Tori stood up by herself and then crawled away. I was amazed and said “look what she is doing!” But, you nonchalantly said she did it all the time.

I was carrying Tori flat across my arm. We were walking to a picnic table. Tori didn’t want to lay flat anymore and started to squirm. I put her down and she took off! Running toward the table. And she was FAST! I couldn’t catch her!

We got to the table and sat with a bunch of people. Tori sat up on my knee and messed with stuff on the table. Then she sat with my boyfriend when she got bored of me. It was all so normal, smiling and happy. Then she got back into my arms layed down and fell right asleep. All that running and playing tired her out since she wasn’t used to it. That’s when i woke up. It was so nice to see her play like nothing was different.

I dreamed that we were at church and Tori was sitting on your lap moving her arms all around and moving her head too!

I had a dream about Tori last night. Lesa was going to a women’s conference in the area and she needed someone to watch Tori, so I volunteered.

At first Tori was still sick, but I remember thinking how cute she was in real life (not just in pictures on FB). About an hour in I decided to take some selfies of us together. As soon as I took my phone out and held it up Tori said “screen” and smiled really big for me to take a picture. I thought it was a fluke, so I decided to take a few more. Every time I took a picture she would smile.

A little bit later I decided to take her for a walk outside. As soon as we got outside I set her down on the ground, so she could walk. We went on a trail that went through the town. (At this time she went from her current age to about four or five). She was following along behind me with no problems. She was talking up a storm about her favorite color (purple) and what she wanted to do when she grew up (I can’t remember what it was, but she was excited). We walked back and Lesa came to pick her up.

I dreamed Tori was 5-6 and pretending to be a dog at a (church) picnic. She had pigtails and was running around until Brennan told her it was time to go. Then she just stood up and walked to the car holding his hand. I actually got my phone out to take a picture to send to you, but of course that didn’t work. 😊 Some of the Lingles were there, which was weird. It was a mild, sunny day in a park with lots of trees. Gorgeous, but I couldn’t pick out the place.

Last night I had a dream that my family was visiting with your family. Tori was sitting up on my hip (like you would hold a toddler) and was smiling. She totally was melting everyone’s heart with her sweet disposition.

I had a dream your family came to visit mine. Tori was very happy, healthy, and active. She was still little (like now). But she appeared healed! She was very enthusiastically laughing, smiling, and clapping her hands with so much excitement! She still required some (but very little) medical attention. Little enough, you felt comfortable enough quickly teaching me how to care for her and letting me take her for you so that, mommy and daddy could have some cuddly nap time! (weird enough you and Brennan both were so tired you were passing out as you were speaking! )

Dreams of Healing, Part Six

We continue to collect notes and messages about dreams people have had about Tori being healed. There have been so many, and it is the constant prayer of our hearts that they come true. ❤

You can read all the dream posts here.

I dreamed it was almost her 2nd birthday and she was currently starting to put sounds together in an effort to talk. On the morning of her birthday you went in to her as she was waking up and she said “mamma” the moment she saw you. I pray that my dream comes true and that Tori is going to be blessed by God with a miracle to allow her to live to enjoy being a grandmother.

i was babysitting her. and it was morning. she got up and grabbed onto a (tree) that was beside her and pulled herself up and climbed up onto a couch. she was still somewhat sick, but she was really moving and expressional.

Aww. I had a dream about your child last night!!! I was standing on the left side of her, a bit behind her shoulder (wildly enough, much like the angle of this photo) And she not only moved her right arm to take something from me but turned her head toward me and said 3 words. Someone else was there to witness it, the mom, of course was there, but also another woman and not sure who.

I had a dream last night that you were driving with Brennan and the kids and I were in the back. I was rubbing Tori’s legs because I thought they were cold and she smiled a huge smile; just short of laughing. I’ve never dreamed of Tori before and my continual prayer has been that she smiles for you again. I will keep praying for you guys for her to be healed and of course to give you that smile. ❤️

 

I had a dream about Tori last night. I don’t remember much but she was smiling. She must have been about 3 years old, and I think it was like a picture you sent me. She had a big, beautiful, healthy happy smile on her face.

Had a Tori healing dream last night had to share! For some reason she came with me on a Mary Kay conference and you did too but you were vacationing and Tori was hanging with me so I was eating and holding her and she’s all eyeing up my food so without thinking I gave her a taste and she loved it. But then I was so freaked out BC I was like oh my gosh she can’t do that Lesa isn’t going to trust me to watch her I was super upset. So I go to tell you and I remember thinking maybe she won’t b so mad if she brought lots of milk (not sure why that fixes but it’s a dream) and so I reach into this packed bag of Tori’s food and it’s like carrot sticks French fries, like not even mashed up baby food like big food. And you are all casual like yup she eats it all! So I felt better and Tori and I went to a Mary Kay meeting and not sure what you did but we had carrot sticks and French fries! 😉

Last night I had the clearest dream about Tori. It was so real to me that I couldn’t shake it all day.

We were all at an airport, getting ready to board an international flight. I feel like we were going to Israel via Russia (mostly because I’ve been looking at those flights recently). We were waiting on line (a large group of us). The portion of the dream that pertains to Tori is that she was 3 or 4 years old… A toddler and she could speak, but in typical toddler talk. Cutest little squeaky voice. She got the attention of so many people in the terminal because she was wearing a Cinderella dress.

She stayed with me as we were in line to board and you two went to get coffee or some snack.

After getting on the plane, I told you both that I would keep Tori with me so the two of you could sleep. In the dream, you both were sure that she wouldn’t go to sleep right away and since you were so exhausted, I kept her with me in my row. She and I played peekaboo in our seats. It was a pretty fancy plane too. She finally fell asleep on my lap just as you and Brennan were waking up. The flight had two hours to go, and both of you kept saying, “I can’t believe we both slept twelve hours!” Now, I don’t know why a flight would take so long, but it did and you were both very pleased to have slept so well.

I was at your house holding Tori and she kept pushing/kicking me with her arms and legs and then started pinching me (lol, little fighter!). I think I remember telling you that she’s even cuter in person. My mom was also with me, but we didn’t stay long because you guys had a wedding to go to. Lesa, you were really proud to show off your ugly Christmas sweater. Not sure why you’d decided to wear that to the wedding, but hey, whatever makes you happy, Lesa. 😊 It ended with Brennan fixing you breakfast to have for the following day.

I had a dream that I came and visited you guys. We were chatting and catching up. Tori could hold up her head by herself most of the time. We had to catch her from falling off the bed and the high chair because she was moving around so much. She was not completely healed YET, but was making improvements.

Tori was still not completely at full health in my dream, but she was definitely living life – running around in the terminal, acting shy when adults in line would say hello to her, and twirling in her dress. I don’t really know how better to describe it. It doesn’t sound like much, but the feeling it left me with was very powerful. When I woke up, I felt like I literally spent a 48 hour period with three year old Tori.

 

The Hardest Thing

There are very few things I haven’t been able to accomplish or obtain in life with a little hard work and perseverance.  This applies to nearly everyone who is willing to work hard in life. We live in a world where so much is possible for those who pursue their dreams!

This is not to say that things have always gone my way, but I have rarely been in situations so out of my control that there was nothing I could do to change the outcome.

Until now.

As I have pleaded with the Lord to spare Tori, as I have tried to bargain with Him (I’m human, after all) and convince Him that He should allow her to be healed here on earth, it has occurred to me more than once that this situation is so unbelievably out of my control. 

There is literally nothing that I can do to change the outcome.  

I cannot find words for my desperation. I often fall silent when I attempt to pray. 

When I look at her precious face and I watch month after month as Krabbe changes her outward appearance (eyes more closed, face becoming more relaxed) as well as her inner functions, I feel so desperate. So powerless.

No amount of money can fix her damaged brain.

No amount of love can restore her to perfect health.

No amount of hard work and effort can make a difference in her nervous system.

I have never felt so powerless in my entire life.

Nothing…except God.

As we have said before, we will desperately pray for her complete healing until she is healed here or in Heaven. 

But we also recognize that God’s plan could be bigger than anything our earthly minds can conceive, and we choose to surrender to His sovereign and wise plan.

But, God…

This is the meaning of true surrender, of total trust. I have no choice but to place her in HIS hands because there is nothing on earth that can save her.

But He can.

Until His plan is revealed, we will love her fiercely, live life abundantly, and choose joy daily. She is worth it.

Dreams of Healing, Part Five

People continue to have dreams about Tori being healed and it fills our hearts with cautious hope.

Please continue to share your dreams with us!

I just woke up from a dream that I had gotten to meet her and was holding her and she was cooing and smiling away.

My three year old has been talking non-stop about Tori today. Said he had a dream about her birthday and playing with her and her orange binky.

Last night was the first time I had a dream about Tori. I was going with Lesa and Brennan to one of Tori’s doctor appointments, sitting in the back with her. I was talking to her and she smiled! A huge smile, and then she started to “talk” – it was baby talk and most of it we couldn’t understand but we were all so excited and laughing! She had great head control, her smiles were big and she was happy! I remember thinking a switch flipped and she was getting better!

In this dream I was teaching and Tori was in the class I was teaching. I remember thinking inside my dream that I knew God would heal her.

I had a dream last night, you and Tori were in it! She was laughing and crawling, and she even said NO! With quite some authority! I’m sure there was more, but I cannot remember it. You were both smiling and laughing. It was beautiful.

Parenthood and the Unexpected

  
Brennan and I never expected our lives as parents to go this way – who does? 

No one has a child expecting to only have them for a few years and then lose them. This is not normal.

And yet, that is where we potentially are, defying the natural order of the way things should be according to God’s plan.

We are stuck in a waiting game: waiting for a miracle that may not come; waiting (and dreading) for her to pass; waiting for the disease to progress (while hoping for improvement with every test); waiting to see the purpose of it all. Waiting.

Waiting is terribly difficult no matter the circumstances; but, in the case of families like us, this waiting is the worst possible kind. 

We are told the average life expectancy and live each day aware of the potential remaining months of our child’s life, but also knowing that some exceed that expectancy. 

We make long term plans knowing that we might have to break them; or, we hesitate to plan anything more than two weeks out because we just don’t know. We wait.

We don’t know what tomorrow holds – no one does. But, our circumstances seem different than most. We know that a tomorrow looms ominously ahead where, without a miracle, our Tori will leave us far too soon. We don’t know what that will look like, but we have an idea because of those who have passed before.

It is a struggle between wanting to keep her here every possible second, but also wanting her to be free from Krabbe and to join Jesus in Heaven as soon as possible so that she doesn’t suffer any longer.

This isn’t what parenthood should be about.

However, that doesn’t keep us from living in the moment and loving Tori fiercely and passionately today. That doesn’t keep us home, afraid to leave the house. 

Rather, this has inspired us to fill her life with normal experiences that we would do with a healthy, typically developing child. To truly LIVE life with her by our side.

Having a list of experiences to accomplish has filled our hearts with such joy and excitement. We are truly having an amazing time fulfilling each item on the list and creating memories. 

If God heals her in Heaven, we will cherish these memories with her for the rest of our lives. And if God heals her on earth, we’ve simply got a head start on a lifetime of adventures and experiences to enjoy together.

Unexpected circumstances can derail us or they can push us forward – it’s a decision we have to make, daily. 

And we choose to live.