Adjusting to Life with Twins

We came home from the hospital yesterday afternoon (three full days and a morning spent there) and we’re so happy to be home!

The boys are GREAT eaters and are nursing so well. From the very first attempt they have latched well and definitely eat! So thankful for that because it’s often an issue for “late pre-term” babies like ours.

Both boys lost weight in the hospital – as expected – but the doctor were more concerned than we were. We knew it was because every single interruption, test, etc. made them sleep for a while and they had no interest in eating. We tried to “force” them to eat when they were sleepy and it didn’t work.

We are happy to report that both have gained weight back as of this morning, though they are still right around 5.5lbs. That will change soon! 😍

For those wondering how we tell them apart, we have left their hospital bracelets attached for now, but I’m getting pretty good at knowing who is who! 😍

Isaiah – day four Caleb – Day four

We are definitely in love with our boys. They are SO good so far and remind us so much of Tori. Both have long periods of being “quiet alert” and are so adorable.

As far as my recovery, it has been a little more challenging than the last time, but not unmanageable. The spinal block caused some minor issues – most of which resolved in the hospital. I have only been taking ibuprofen for the past 48 hours and even then it’s not on a regular basis.

I have a lot of post-partum edema (swelling) in my legs, especially, from the IV fluids they pumped into me, and partially from the twin pregnancy. It should go away in a less than a week or two (hopefully sooner).

I’m extremely tired (expected) and moving more slowly than before. But, I have to remember that it’s only been four days and a c-section is major surgery. We’re very thankful for my parents being here for the next month to help with everything!

Above all, we are overflowing with joy that these two precious boys bring to our lives. They are amazing and we love them so deeply! 😍❤️

Thank you for your continued prayer and support! We still can’t believe we have IDENTICAL TWINS!

Reminders of Krabbe and Choosing to Be Joyful

There will always be reminders of Krabbe and its effects on Tori in the least expected places.

The other night, for instance, on The Good Doctor, they had a patient who was unable to smile because her cranial nerves were not working properly.

Just like Krabbe.

This is just one example, of course. These situations always catch us by surprise, and it’s hard to believe that even just four years ago something like this wouldn’t have phased us. We would have enjoyed the episode of the show but it wouldn’t have made us think about anything else.

When times like this happen, we have a choice: focus on what Krabbe stole from her – and us – with sadness, or focus on all that Heaven restored to her with joy.

And, as always, we choose joy.

Her smile was amazing, even though we only saw it for five months. I think we will appreciate her brothers’ smiles far more because of this. Each smile, each expression…such joy.

We remember her smile with such love and eagerly await seeing it again soon – but not yet ❤️

Tori’s Day of Triumph – March 27th

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Next Tuesday is BIG – it’s the second anniversary of Tori’s “relocation” to Heaven and we have so many awesome things in store for her Day of Triumph/Triumph Day!

  • Lesa’s radio interview with Autumn Miles airs (3:30pm in Dallas (100.7 FM), but online as well)!
  • Tori’s Triumph” – the documentary by Blink Motion Productions – debuts online! We will post a YouTube link that day, or you can look for it (and watch the trailer) here.
  • Even So, Joy” book launch party in Hershey! 6:30-8:30pm at the Cafe on Cocoa (1130 Cocoa Avenue, Hershey), and we will go LIVE on Tori’s Facebook Page at 7:00pm during the Q&A portion of the launch!  
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    If you haven’t already purchased Tori’s story in book form, it’s on all major book websites (Amazon, Barnes & Noble, iBooks, CBD, etc.) and we will have copies at the launch party for purchase as well. 
    Lesa Brackbill, Author is my official Facebook author page if you want to follow it!

    We are going to celebrate that Tori has been Krabbe-free for TWO YEARS, that she has been able to laugh, smile, run, play, EVERYTHING she couldn’t do here on earth, and we hope that you will join us! ❤ And please help us spread the word – we’re fighting against social media algorithms and need your help!

Our IVF/Adoption Journey

As you may have gathered, Brennan and I would like to expand our family and have more children. Our hearts long for this, and we’ve been working hard to make this happen. Unfortunately for us (and others with genetic mutations like ours), it’s not simple.

After much prayer and wisdom-seeking from others over the past two years, we have decided that it is unwise to do this “naturally” and are instead looking to use IVF and/or adoption as a means by which we can grow our family. We started the IVF process last summer but were halted in August because of a lack of funds. We’d love to do both IVF and adoption this year, but that would mean coming up with about $50,000 or more (adoption ranges from $25,000-40,000 or more!). Even with our frugal lifestyle, that’s simply impossible. 

This is why I went back to work in August. This is why we sold our house, paid off Brennan’s student loan, etc. – by doing so, we freed up a great deal of monthly expenses that we can now put toward this endeavor. We are trying to save as much money as possible to go toward IVF/adoption, but even with all of our efforts we will still humbly admit that we need help to raise the funds necessary.

You all have been SO generous to us over the past two years so we didn’t want to just do a fundraiser to ask for money. We wanted to offer YOU a gift, something in return…and we have the perfect thing.


As you may remember, I wrote a song this summer about how I felt after Tori was diagnosed. Thanks to our amazing friend, John Amodea, the song has been recorded and is available to download!

Here’s what we’re hoping will happen: enough people will buy the song (via the “Tip” button on the NoiseTrade page) that we can have/adopt a child in 2017!

If you cannot afford to buy the song, please download it as our gift to you, and perhaps share the page on your own page.

If you would like to buy the song, go to this link: http://noisetrade.com/lesabrackbill/lord-remind-me

We’re doing this as a “pay what you feel” download…and whatever you can give is so greatly appreciated. So feel free to change the “tip” amount to whatever you would like to give.

Please share our story and the song with others, too, if you are willing.

We hope you enjoy the song and that the Lord uses it to encourage you.


In addition, Brennan and I will be hosting an online auction to help cover the cost of IVF/adoption as we seek to expand our family! The auction will be held on Facebook (January 20-25, 2017) and we are in need of donors!

Here’s the link to the Google Form we created for item donations; if you are a consultant for a company, an artist, seamstress, craftsman, musician, etc. and have something you would be willing to donate to our auction, please fill it out so that we can start to build our inventory! Or, if you have a service you can provide (massage therapy, hair cuts, photography, etc.), that would be great as well!

We’d love to have at least 100 items in our inventory!

You can access the auction here.

We will gladly credit you/your business for your donation and offer a link to your website/Facebook page as well in hopes that you will be blessed by this auction as well.


We want to be parents again more than anything. With your help, we can do this!

Thank you in advance for your support!  

My Third Mother’s Day

I have never been one to embrace or become attached to holidays like Valentine’s Day or the other “Hallmark Holidays” like Mother’s Day, primarily because I have been taught to celebrate these things daily, not once every year.

Even though I’ve been a mother the past three years (pregnant, present, absent), it’s just another day to me. I’m also a rebel and don’t like being told what to do. 😉 But mostly it’s because I love cherishing the family I have been given continually and not just because we are told to do so by “someone.”

I’ve also been taught to not focus on what you are lacking, but rather to focus on what you have, to appreciate all that you have been given and not dwell on what has been taken away. Paul phrased it as “being content” no matter the circumstances (Phil. 4:11).

So, while this is probably supposed to be a sad day for me because my Tori is in Heaven and not in my arms, it truly isn’t. ❤

As I have mentioned many times before, the discipline of gratitude has had a profound impact on my life. When you make a point to be grateful for things and to name those things out loud (or in writing), it is much more difficult to be negative and sad. God is always at work in our lives and recognizing His hand makes life abundantly joyful, even in the midst of heartache.

So, today – as always – I focus on my blessings:

I am SO thankful to have been chosen to be Tori’s mama and to have had those beautiful twenty months with her. Those beautiful and wise eyes of hers spoke volumes when her mouth couldn’t: I know she loved me and I know she knew she was loved.

Her existence taught me so much and her brief presence on earth has made me such a better person. I am more loving, more patient, more gracious, more kind, more GRATEFUL, more selfless, more like Jesus (which should be every believer’s goal). She was a miracle child in so many ways, and I’m so grateful.

I will always be Tori’s mama! I pray that the changes I see in myself because of her are not only temporary but rather that they continue to change me to be more like Jesus.

I’m thankful to be here in California with my mother and my grandmothers today to celebrate them in person. I wouldn’t be who I am today if it weren’t for these women, for their example and training, for their love. They taught me to be a mother by living it out so well in their own lives with my parents.

These three women – Pat, Ruth, and DeAnne – loved me enough to discipline me and teach me while I was young because they knew that it was vitally important for my well-being. They also taught me valuable skills and I can never repay them for all they have done for me, except by carrying on this tradition of selfless love with my own children.

My mom, in particular, showed me what selfless love looked like over and over again during Tori’s earthly life. She spent weeks with us, helping doing things around the house, cooking meals, and, of course, cuddling with Tori. She has always put other before herself and is such an example to all. She continued to do what she could from across the country to make our lives a little easier even though she couldn’t be physically present every day.

She is an amazing grandmother and I hope that she will have the honor of being a grandmother again someday.

So, on this Mother’s Day, I am grateful for my heritage and the examples of motherhood in my life. I wouldn’t be the mother I was to Tori if it weren’t for these women. ❤ It’s a day of joy, not of sorrow, and we will continue to focus on what we have been given.

 

Lessons From David

A dear friend shared an incredible insight three months ago and I started to blog about it then. However, I never finished the post.

Tonight, as I was preparing to go to bed, something reminded me about this and it occurred to me that this message is even more relevant to us today, months later, now that Tori is in Heaven.

She sent me this message in December and it has impacted me greatly tonight:

One of the passages of Scripture I have pondered since Tori was diagnosed was 2 Samuel 12, where David is told that his baby would die. 

My husband preached a few days ago about David begging, pleading, fasting, and praying for the life of his child. And God said no.

This is where we see the David being a man after God’s heart thing in action. David gets up, washes, dresses, eats, and then goes to worship God.

I get so angry about the small things. My trust falters. My fist has shook towards the heavens.

And here is a father, who has lost his child, praising God not in exchange for a miracle. But just because of who He is and is worthy of our praise.

I know you have your moments. But I see this heart of worship being built in you.

After the loss, David was given Solomon. 

The world is still impacted over these two babies.

Here is the scripture passage:

“David begged God to spare the child. He went without food and lay all night on the bare ground. The elders of his household pleaded with him to get up and eat with them, but he refused. 

Then on the seventh day the child died. 

David’s advisers were afraid to tell him. “He wouldn’t listen to reason while the child was ill,” they said. “What drastic thing will he do when we tell him the child is dead?” 

When David saw them whispering, he realized what had happened. “Is the child dead?” he asked. “Yes,” they replied, “he is dead.” 

Then David got up from the ground, washed himself, put on lotions, and changed his clothes. He went to the Tabernacle and worshiped the LORD. 

After that, he returned to the palace and was served food and ate. His advisers were amazed. “We don’t understand you,” they told him. “While the child was still living, you wept and refused to eat. But now that the child is dead, you have stopped your mourning and are eating again.” 

David replied, “I fasted and wept while the child was alive, for I said, ‘Perhaps the LORD will be gracious to me and let the child live.’ But why should I fast when he is dead? Can I bring him back again? I will go to him one day, but he cannot return to me.”  (2 Samuel 12:16-23)

What I hadn’t considered until this friend mentioned it was this: the story didn’t end there. 

After David lost his son, he was blessed with another son – Solomon, the wisest man who ever lived. 

David’s greatest legacy was still to come.

Then David comforted Bathsheba, his wife, and slept with her. She became pregnant and gave birth to a son, and David named him Solomon. 

(2 Samuel 12:24)

Brennan and I discussed yesterday how strange it is that we haven’t felt the deep sorrow (yet?) we imagined that we would after losing Tori. 

We realize that grief is a process, but we truly believe that we grieved deeply over the last fourteen months while we had the knowledge that she would leave us far too soon. 

Her final breath brought us closure. It brought us peace.

Tonight I realized that – without even trying to do so – like David, we have risen from our knees and are praising Him for all He has done.  

This hasn’t been intentional or a conscious action (and we certainly aren’t spiritual superheroes or anything like that) – we are simply overcome by His undeniable presence and the incredible workings of His hands to orchestrate Tori’s miraculous death. We can’t help but praise Him as we marvel at all of the details and the amazing things He has done (we will blog soon about that).

Like David, we pleaded and begged for Tori’s life to be spared, for us to be able to enjoy our precious baby on earth for the rest of our lives. We begged Him for fourteen months and waited for His final answer.

The Lord gently said no last Sunday and our hearts are finally at peace. A peace only He can give.

We trust His Word, and we trust that He has something incredible in store for our lives, and that Tori’s short life was just the beginning. The impact of her life on the world is not fully known, and we can’t wait to see how it unfolds. 

In the meantime, we will continue to praise Jesus for the things He has done and all He has yet to do.

Gratefulness 

Don’t worry about anything; instead, pray about everything.
Tell God what you need, and thank Him for all He has done.
Then you will experience God’s peace, which exceeds anything we can understand.
His peace will guard your hearts and minds as you live in Christ Jesus.
– Philippians 4:6-7

 Always be joyful. Never stop praying.
Be thankful in all circumstances,
for this is God’s will for you who belong to Christ Jesus.
– 1 Thessalonians 5:16-18

We have been overwhelmed by God’s faithfulness and His grace in all of the events surrounding Tori’s home-going – which are nothing short of miraculous.

It’s been stunning, really, even though we shouldn’t be surprised. He is a great God who loves His children.

I’m not sure I ever expected to describe a death as miraculous, but it truly was. God’s hand was so evidently working to make things happen the way they did!

Here’s the list of things we have noticed, and I’m sure there are even more that will become evident as time progresses:

  • We weren’t in California.
  • We bought the trip insurance for the first time ever, ensuring that we would get our money back from our cancelled flights to and from California, which made it easier to choose to stay home.
  • We weren’t in the van, driving back to Pennsylvania from California.
  • We were home. Together.
  • She came back to say goodbye and to give us peace with her second passing.
  • She went peacefully, in her sleep.
  • We didn’t have to invoke the DNR and make the choice to let her pass. God did it.
  • My parents were here and not in California.
  • We spent the week together traveling – something we all love – and were able to create new memories with her.
  • Brennan was with her constantly for nine full days before she passed.
  • We never had to adjust to home nursing, which would have been a mixed blessing.
  • I took many photos of her during her last days of life on earth because I was so excited about my new camera.
  • She never knew sickness – not even a cold.
  • She never greatly suffered.
  • She wasn’t on any pain medications like morphine or valium – only a low dose of gabapentin. She wasn’t in pain.
  • She was only hospitalized once, and that was to stabilize sodium, nothing intrusive.

 

God chose Brennan and me to be Tori’s parents. What an amazing, humbling honor. He could have given her to anyone, but He chose us. We are so thankful for that.

Tori’s story started on Easter Sunday 2009, when Brennan and I met at church. Her earthly life ended on Easter Sunday 2016. ❤


 

We have heard from a couple of people that the Holy Spirit was at work at the time she passed:

I wanted to write you a quick message as something quite unexpected happened yesterday. As I was sitting in church (before hearing the news) I was praying for Tori…and suddenly had a glimpse of her as a resurrected self. In that moment, I sat in awe of Christ’s hope, but had no idea how present it was.

Our church starts at 9:00am and this past Sunday it started a little late. Our daughter, who never talks about Tori but has known the whole story since she was diagnosed, saw Tori’s name on our prayer list, where it has been for over a year. She said, “It’s so nice that we pray for Tori. Don’t worry, she will be okay, Mommy.” After church, as we headed to my parents, I received the text of Tori’s departure.


One thing I realized last night was that I believe my tendinitis – which I developed suddenly about two months ago – served a greater purpose than I realized.

I developed tendinitis in my left arm from sitting and holding her for many hours each day. It got so bad that I could barely grab a water bottle, and so weak that it was difficult to hold her head up. Because of this, I was forced to lay her on her pillow more frequently in order to alleviate the pain. In the past two months, I gradually held her less and less.

I truly believe God was preparing me to never hold her again.


 

For these things – and more – we are so thankful. We cannot help but praise the One who made her, the One who so evidently put all of this into place in His perfect timing. His Word is yet again proving to be true: “the joy of the Lord is your strength!” (Nehemiah 8:10).

I have long been taught that thankfulness is the antidote to anger, jealousy, bitterness, and other such attitudes. This week I have learned that thankfulness can also lessen the blow of deep sorrow.

We will – and do – have moments of sorrow as we miss her presence here with us, but we stand in awe of our loving and gracious God who so perfectly arranged all of these details so that we could find peace in her passing.

You saw me before I was born.
    Every day of my life was recorded in your book.
Every moment was laid out
    before a single day had passed.
– Psalm 139:16 –