H.B. 730 – Time to Take Action

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PENNSYLVANIA – it’s time for action!

We’ve been waiting (not so patiently) to be able to tell you that we have important legislation that will be introduced VERY soon, and if it is signed into law (which is likely given the broad support we have) Krabbe will finally be mandatory by default.

Hannah’s Law (Act 148 of 2014) was created to make screening for Krabbe mandatory; however, it has yet to be fully implemented because PA’s NBS system is broken.

This bill will not only fix Pennsylvania’s broken NBS system and ensure that EVERY baby is screened equally (right now your zip code determines what diseases are included on your baby’s NBS panel), but it will fully implement Hannah’s Law at last.

What can you do? If you live in Pennsylvania, you can send a note like the one below (or copy/paste if you want) to request that your legislator CO-SPONSOR the legislation.

It will be called H.B. 730 – in honor of Tori’s birthday ❤ We were so surprised and honored by that!

If you share this post PLEASE make sure our text accompanied it. Otherwise it will just be the link to the memo.

If you want to copy/paste the following, feel free! You can find your representative’s info here: https://www.legis.state.pa.us/cfdocs/legis/home/member_information/contact.cfm?body=H

Dear ___________,

My family and I are residents of your district and wanted to make you aware of a bill in hopes that you would sign on as a co-sponsor.

https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20190&cosponId=28612

It will be numbered H.B. 730, the numbers representing a precious girl’s birthday. Victoria Brackbill passed away from Krabbe Leukodystrophy in March 2016 at 20 months of age. Her life could have been saved had she been screened for Krabbe at birth.

Victoria’s family has been working with the Dept. of Health, Rep. Cruz (who authored Act 148 of 2014), Dr. Levine, and others over the past few years to help them to see the weaknesses in Pennsylvania’s Newborn Screening program, and they have listened. The fight has become about so much more than Krabbe being one of the mandatory screenings in PA – it has become about making the program better and more equal as a whole.

Pennsylvania currently ranks 2nd to LAST in the nation for the number of diseases for which every baby is screened. As you will read in this memo, your zip code determines life or death if you’re born with one of these diseases that can be treated if caught at birth. That is simply unacceptable and we’re seeking to change that.

This isn’t a partisan issue – this is a human issue.

If H.B. 730 is signed into law (which is likely will be as the Governor also supports our efforts), Krabbe will become mandatory by default. More importantly, though, every single baby born in Pennsylvania will be screened for the exact same diseases and have the same chance at life as all the other babies.

Thank you in advance for your consideration, and hopefully your support.

Renewed Sense of Purpose

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It’s been ten years since I first took Dave Ramsey’s Financial Peace University. For the first time, I felt like I knew how to handle budgeting (I used to think it was inhibiting, when it’s actually incredibly freeing) and how to tackle debt. I met Brennan a few months later and eventually taught him what I had learned.

When we got married, we both brought debt (student loan and other debt) into the marriage. Our total amount of debt was $106,929.39. Staggering. Crippling debt. But, we followed Dave’s plan (with a few detours) and committed to knocking that out as quickly as possible.

We bought our first home six years ago because we saw the profit potential and knew it would be a way to become debt-free even faster. And it worked.

In our first six years of marriage we paid off $85,000 and were down to only my student loan. But then we became lazy and, when tempted to take out a large construction loan to remodel our new home, we gave in impulsively to have the instant gratification. While not in debt to the extent we were when we first got married, it’s debt, regardless, and it has been difficult mentally to get over our mistake.

Our new church announced that they were offering the class beginning in January, so we decided that it was time to take it together and get back on track. We have continuously budgeted our entire marriage but it’s time to start the “debt snowball” once more.

Now that we have children in our home again, we’ve realized that THEY are our motivation and purpose. We never want to have to tell them they can’t participate in something because we don’t have the money if debt is the reason. 

Our goal is to be debt-free by the time they turn five. That is fifty months from now.

We have a plan. We’ve tightened up our budget as much as possible – which led us to realize that we surprisingly don’t have a spending problem, but rather an income problem (in terms of having extra to be aggressive with debt payoff). We weren’t sure what to do, but we prayed for opportunities to earn extra money that could be applied directly to our debt.

And, as always, God is faithful to His children.

I was presented with the opportunity for a new part-time job that will not only bring in some extra income but also help us cut our food budget and simplify meal planning (and give me a much-needed break a couple of nights each week).

And then, on Friday, I was offered a promotion at my other part-time job that not only pays more but it’s a lot more responsibility (being the manager on duty – MOD). Not only was this an answer to my prayer, but I was an answer to their “prayers” because it’s only 1-2 weekend days a month and they didn’t know how they would find someone willing to work so few hours. Then they remembered me, my qualifications, and how I’m currently only working there 1-2 times per month, and they said it was the perfect solution all-around. God’s hand is clearly in this. 

This all happened in the last three weeks and we’re still in awe. 

We didn’t pray that God would just hand us money (though we wouldn’t say no 😉 ) – we prayed for opportunities to EARN it, and He came through quickly and amazingly!

I share all of this as an encouragement. ANYONE can do what we’re doing. EVERYONE can become debt-free even though it requires dedication, sacrifice, and hard work. As Dave says, “Live like no one else so that later you can live and give like no one else.”

We are “gazelle intense” and ready to pay off my student loans and this construction loan as soon as we possibly can. The future of our children is worth the sacrifices we make now. ❤

Choose to See Beauty

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I love fall, so when I heard we were going to get several inches of snow in mid-November I was incredibly disappointed.

The last time this happened, it knocked all of the colorful leaves off of the trees prematurely, and our fall was cut short. It’s already such a short season so to have it made even shorter was frustrating.

We have a glorious red tree in our backyard and I was not thrilled that the leaves would now be covered with snow.

November 14, 2018
November 15, 2018

However, this morning I noticed that the melting snow actually made our tree and its leaves even more vibrant. The cold, white undesirable, snowy background highlights the beauty of the red leaves more than the lush, green grass does.

Do you see where I’m going with this? The analogy was too perfect to pass up.

I’m obviously not just talking about leaves.

This is a perfect example of how there is beauty in the broken.

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In life, when bad things happen or things do not go the way we think they should, we can choose to see it two ways: we can focus on the bad, ignoring the beauty around, or we can notice how the good shines even greater in the midst of the bad.

We would not appreciate the good if everything were always perfect – we wouldn’t realize that life could go any differently! But, when less than perfect conditions arise, it gives us an opportunity to truly appreciate life and the joy that it brings.

Our family will never feel whole because we will always be missing one. Tori is living an abundant, full life without us right now and we will join her someday. But, what we endured has made us find so much MORE joy in the life we have now. The twins may be challenging at times, but they are such a blessing and a joy, and we appreciate them so much more because their sister existed and was taken away from us (#KrabbeSucks).

Believe me, I am not happy about the snow (and I am not happy that Tori had to go to Heaven so soon). But, I choose to allow it to help me see the beauty in the life that I do have, instead of focusing on what the snow has taken away.

I’m sure you’ve seen this meme before:

joyinsnow

It’s so true. So, this winter, as much as I am dreading the cold and the snow, I will remember this as often as possible. I will choose to (somehow) find joy in the snow. ❤

Twenty-Three Weeks

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Not long ago I opened the calendar app on my phone and counted the number of weeks between Tori’s birth and the onset of Krabbe. I was surprised to find that she became fully symptomatic at exactly twenty-three weeks. To the day.

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Last photo of Tori smiling, taken at age 22 weeks 6 days (January 6, 2015)

That’s how old the boys are today.

Our healthy, strong, Krabbe-free identical twin boys are the same age today as Tori was when a horrific disease began to steal everything from her – her smile, her laugh, her ability to swallow, and eventually her life.

Twenty-three weeks.

As I was typing this, I momentarily thought “I wish I would have known that she’d never smile again so I could have treasured it.” But my next thought was, “Hmmm…would I really want to know?”

So often we say that we would, but is it ever a good idea when it’s something we can’t change? I think in most instances we’d end up worrying so much about what was about to happen that we would be unable to be fully present. Instead, I will treasure the smiles she did have as well as the smiles from her brothers each day.

I have been asked many times if I think I have some degree of PTSD, and after considering the question, I can honestly answer no. Sure, there are things that will never be the same about me – or my parenting – after Tori (for instance, I definitely check to make sure the twins are breathing far more than I expected to do), but I most certainly do not have PTSD. Brennan would tell you the same. We are living in joy and peace.

And that leads me to wonder why.

Why are we okay when so many who’ve walked in our shoes aren’t okay?

I had a conversation with my chiropractor during my most recent visit and it helped me in unexpected ways.

She remarked that she has loved seeing how Brennan and I have walked through this journey with grace and joy (we take no credit for that), and she loves how we’ve chosen to live out our faith. Her encouraging words (and great adjustment) would have been enough, but the Lord chose to continue to speak through her.

I told her that I often wonder why Brennan and I seem to be set apart from so many who have lost children, how we seem to be handling it so differently than most, even than other believers.

It’s not that we never think or talk about Tori (quite the opposite). She’s very much a part of our home and we will make sure the boys know everything about their big sister. It’s not that we’ve “gotten over it” because you really don’t ever “get over it” when you’ve lost a child.

(Side note: who defines what that actually looks like? Who makes the rules? Not getting over it doesn’t have to mean crying all the time or living your life depressed. It simply means that you are never the same, but it has such an unnecessarily negative connotation. We will never “be over” losing Tori but we also choose to live the life we think she’d want us to live – she’s in Heaven, happy as can be, so why wouldn’t she want us to live in joy?)

I expressed to her that I feel sorry (not pity, but genuine sadness) for those who can’t move on, who cry daily, who can’t seem to find joy in their lives after a tragedy like child loss. I mentioned my blog post about not visiting Tori’s grave. That we’re different but I can’t figure out why. That I wonder if we’re “doing it wrong” because we’re genuinely doing well and so many around us aren’t.

And then she said this: “it’s because you don’t let it define you. It’s because you find your identity in something (someone!) greater.”

In that moment, it clicked. She is totally right.

It’s not my identity. I’m not a victim, and I’m not a martyr.

Yes, I lost a child. Yes, it was terrible.

And yet, losing Tori doesn’t define me.

Did it impact me? Of course. But that’s not what defines me. The love of God (and my love for Him) defines me and my life. His mercy and grace overwhelm me and fill me with abundant gratitude. His faithfulness reminds me that we will see Tori again in Heaven for an ETERNITY. In a perfect place. With perfect bodies. No Krabbe. Forever.

I could elaborate more, but I already did in Even So, Joy 😉

We all have to choose what defines us, and I choose to NOT be defined by child loss. ❤

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As I watch Tori’s brothers today, I am amazed at their strength, at their smiles, at their health. They are doing things that Tori was never physically able to do – before or after Krabbe – and each new achievement is worthy of celebration. Every milestone reached fills us with awe.

That’s why I wanted to count the weeks.

That’s why I wrote a note on the calendar to pay attention to their development at twenty-three weeks.

Not because of PTSD. Not because of grief.

But because I am so indescribably thankful for God’s blessings to us. For his faithfulness. For His love. For every smile that these precious boys display. Everything. I don’t deserve this abundant life He has given to me, but I will embrace it and praise Him for it.

Even so, it is well with my soul. ❤