Five

Today is Tori’s fifth birthday.

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It’s the fourth one we’ve celebrated without her in our presence, but, for some reason, this one caught me off guard and hit me harder than anticipated.

Five is a milestone. Five is an age little kids want to be (I apparently used to tell people I was five when I wasn’t). Five means kindergarten is coming. Five.

It’s hard to not imagine what she’d look like, what she’d be like.

We should be celebrating our first born’s birthday WITH her, but instead we will celebrate without her. It’s a consequence of living in a fallen world, a harsh reality of living between two gardens (Eden and Heaven), as Lysa TerKeurst has said.

It would be so easy to take the pains of this earthly existence and dwell on them, to allow them to consume us and to derail our lives. But, as Christians, we are given wise and practical advice as to how to navigate this fallen world, and in moments like these we should turn to God’s Word for that wisdom:

Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. And when Christ, who is your life, is revealed to the whole world, you will share in all his glory.

Colossians 3:1-4

“Think about the things of heaven, not the things of earth.” 

We could dwell on the things of earth – Tori’s absence, the unfair nature of our situation, what we lost thanks to mutated genes that caused Krabbe. But, God tells us to dwell on the things of Heaven – Tori’s eternal presence there, her healed body, her ability to live an abundant life there, the fact that we will join her someday for ETERNITY.

So that’s where we purposefully turn our eyes. Sometimes it comes easily, other times it requires faith. The root of our joy is Heaven through Jesus, so we choose to focus on what’s to come rather than on what has been.


At the Hunter’s Hope Symposium last week, one of the Krabbe -and fellow twin- mamas I greatly admire said this about her son: Jenna said that when Jackson was first diagnosed, she prayed and pleaded with God to let him live a normal life, to let him achieve milestones and do things like graduate from high school. She said she felt the Lord say that those are ordinary things; Jackson’s life would be extraordinary. 

I know the same is true for Tori. This was God’s plan of redemption all along – that she would change lives and make a huge difference in this world – a difference that will be seen in the next. He has redeemed a terrible situation and made something beautiful from it.


Whatever you’re facing today, remember that we are called to something greater and that this world is not our home. This broken, painful, earth is not our final destination. It’s temporary – and we thank God for that!

Focus on the eternal, on the things that come from God – love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control (Galatians 5:22-23). When you set your mind on things above, it changes your perspective and you realize that joy comes more easily, no matter the circumstances.

Always be full of joy in the Lord. I say it again—rejoice! Let everyone see that you are considerate in all you do. Remember, the Lord is coming soon.

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.

And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.

–Philippians 4:4-9


We love you, Tori, and we celebrate you today. We always will.

What Might Have Been

I try not to think about what might have been, cause that was then…

We can’t go back again, there’s no use giving in, and there’s no way to know what might have been.

– Little Texas

It’s so easy to let our minds run away from us and to ponder what might have been instead of what actually is. 

If we aren’t careful, we can make ourselves incredibly sad on days like today – when our Tori would have turned two – instead of celebrating instead that she is healed and with Jesus. 

We could focus on all that she might be doing as a two year old here on earth, or we can imagine her healed, whole, healthy body running around in Heaven where we will see her again (soon, but not quite yet, as Jim Kelly said yesterday).

Brennan and I have learned that you must take control of your thoughts in times like this – not that you can’t grieve, of course, but to not force yourself into sadness simply because you are wondering about what may have been. It doesn’t change anything, it doesn’t benefit you in any way, and it doesn’t bring joy. In fact, it steals joy. 


It’s a choice, just as joy is. You can choose to have a great day or a miserable day based on how you control your thoughts.

So, today, on Tori’s birthday, we are remembering the great times we had with her. We are thinking about what actually happened instead of what could have happened if she had been healthy. 

And our joy is REAL. It is genuine. It is God-given.

We take such joy in knowing that she is running around with Jesus. She breathes normally, her nerves don’t cause pain, and her body is whole. And that is the best possible gift we could receive today ❤️

Thank you, Jesus, for Your peace and joy, and thank you for making us Tori’s parents.

Tori is ONE!

At 9:25am on Wednesday, July 30, 2014, Victoria Ruth Brackbill entered this world by c-section after 20 hours of labor. We became parents – her parents.


She had a full head of black hair just like her mama did. Beautiful blue eyes.  Perfect features.

We were amazed at her beauty and her calm – but expressive – personality. She was gorgeous from the beginning. Perfect. And those eyes!

She grew and developed normally and we had no reason to suspect that anything was wrong…until January 7th, 2015. She was five months and one week old. The beginning of the journey to the diagnosis of Krabbe can be read here and the rest of the story is under the Tori category.


  
   Today is bittersweet because she has reached the halfway mark of her life expectancy. Instead of watching her learn to walk, eat new foods, play with toys, and learn to speak, we are instead simply thankful that she made it to one year. We are thankful that she is doing very well given the prognosis. 

  
But we don’t want this to be halfway or more than halfway. We want this to be the beginning. We continue to plead with God for her earthly healing, even though we know He may choose to take her home to Heaven. And, if that is the case, then we plead with Him to not let her suffer here on earth any longer than she already has. It is such a delicate balance between hope that wants to keep her here and love that is willing to let her go if that is what is best for her.

  
In the meantime, we still choose joy. Today we will celebrate her year of life and check some items off of her bucket list. Every single day is still worth celebrating!

Victoria has been such a blessing and a joy to us, and we have learned so much throughout her time with us this far. She has taught us how to love unconditionally, how to appreciate every moment of life; about patience and grace; about Jesus and His love. She is so wonderful…

She may not smile anymore, and her eyes don’t open as wide, but she tells us in her own ways when she is happy…that she loves us. We know she does.

We chose her name because it means victorious, and we pray constantly that she will be victorious over Krabbe here on earth! But if God takes her home, we will celebrate her homegoing as well, because she will be healthy and healed.

What the next year holds is uncertain, but one thing we do know is that we will treasure her every moment of every day that God allows us to have her. ❤️