Category: Family…

Krabbe Awareness Month: Day Twenty

· Leave a comment ·

Because Krabbe is an autosomal recessive mutation, the chances per pregnancy are 25% that the child will be affected, 50% that they will be a carrier, and 25% that they will be unaffected. That may seem like a low chance that a couple would have an affected child, but Dr. Escolar told us that she often sees repeats in families.

On diagnosis day we were told two things in the same minute: Tori had Krabbe and was dying, and that we shouldn’t have more children. We were devastated.

Thankfully, we found out about IVF as an option to have healthy children and our twins are not even carriers of Krabbe. ❤

There is HOPE for families like us to have more children, whether through IVF, adoption, or foster care. Krabbe doesn’t have to mean the end of your dream of having a family. 

I’m Not Sad That My Boys Aren’t Little Anymore

· 1 Comment ·

I often see moms post about how sad they are that their babies are not newborns and tiny anymore, or sad that another year has gone by, and perhaps I could have related to that feeling a few years ago.

But, I just can’t relate to it now. I realize that my perspective is different than most, which is why I feel like I need to share it, especially this month.

I’m not sad that our boys are bigger, or that they are continually learning and doing new things. I doubt that I will ever look back with tears and want to go back to those newborn days.

Isaiah
Caleb

I’m thrilled and delighted that they are ABLE to get bigger. That they are ABLE to grow and learn. Why am I delighted?

img_2727

Because Tori wasn’t given that opportunity. Because Krabbe robbed her, and us, of a normal childhood. She stayed little, like a newborn, for her entire existence. She never learned to talk, walk, laugh, play. 

We would do anything, anything, to have her here today, in full five-year-old glory. 

62249416_177490479924384_1498507940492011205_n

And it is with that perspective and passion that I write, parent, and live.

I am truly overwhelmed with gratitude, amazement, and joy with every new milestone reached, and I don’t look back at their newborn pictures with sadness (disbelief that they were ever that small, amazement at how far they’ve come, but not sadness). Part of that is because newborn twins are seriously challenging and I don’t want to go back to that phase, but it’s mostly because of Tori, our precious baby girl who was taken from us too soon. I LOVE watching them learn and grow as healthy little men.

What makes me sad is that there are babies born each year with a treatable condition but that their ZIP code determines whether they have a chance to live or not.

What makes me sad is that families like ours, families with so much love for their children, have to say “see you later” to their child and be separated from them until we get to Heaven.

I fight for Newborn Screening for Krabbe because I don’t want anyone else to go through what we’ve experienced. I want babies born with Krabbe to have the same opportunity for life as any healthy baby. I want their parents to be able to see their children achieve typical milestones. I want their children to grow up.

I know motherhood is challenging and it’s easy to be frustrated. I get it. I have my moments like anyone else. However, in those moments I remember that not every child gets to grow up, like my Tori, and I remind myself that I have so much for which to be thankful.

I pray that you can do the same. ❤

We Have Time

· 2 Comments ·

Our boys are sixteen months old now. They walk everywhere, they love being outside, and they love experiencing new things.

258e6627-1b9c-495d-9e87-32c7b0f52a3a

Most of the time I feel as though we have struck a great balance between being home and going out to do things, but some days I feel this pressure to do everything. If I find out we have to miss some event or function, I feel like they are missing out. I feel pressure.

This isn’t a pressure induced by social media, however. Yesterday I realized that it’s because all I’ve ever known as a parent is limited time. A deadline. A looming end point and the danger of permanent regret. 

With Tori, we had less than two years to try to give her all the experiences we could manage. Krabbe robbed us of time. Krabbe made us feel rushed. We did things she was far too young to appreciate because there was pressure. We didn’t have time to waste. We didn’t want to have any regrets for her, or for us as a family. And, thankfully, we don’t.

Yet, I have to stop and remember that, Lord willing, we have time with the twins. We don’t have to do everything right now, and we don’t have to be disappointed if we don’t take them everywhere to do it all at this age. They don’t know what they’re missing, and if they are happy, that is all that matters. We have the freedom to wait until they can better appreciate whatever it is we want them to see/experience. 

I’m praying that my heart can rest in that hopeful knowledge, that I can be better at just taking one day at a time, one moment at a time, and providing the boys with a well-balanced life. Rest is equally as important as stimulation and experiences, and I pray that we as parents will have the wisdom to do what is best.

I’m so thankful for this gift of time.

How We Make Small Spaces Work With Toddlers

· Leave a comment ·

img_8335You may remember that our home is currently split into two separate apartments. We currently occupy the first floor and the basement; while someday we hope to make it back into one house and utilize all of the space for our family, for now we make it work and I think we do it fairly well.

It takes creativity to have four people live in approximately 700 sq. ft. (plus the basement), and it takes some time to figure out the best way to arrange things. We’ve been here 2.5 years and I’m still always thinking of new/better furniture arrangements. 🙂 Everything must be multi-functional in order to live comfortably.

img_8311

One of the things we (by we, I mean my dad) did to make the living room (which had been split in half with a wall and a door to create a bedroom) more functional was to put in french doors. In the future, it can just be part of the living room/an office and not a bedroom, but it is currently the boys’ bedroom.

Until last weekend, the living room was also their playroom (which is fine, as we do not believe children should be confined to a separate space – this is their home, too, plus, how?).

We wanted to make better use of our available space so we took down the huge crib (where Caleb had been sleeping) and added another Pack-n-Play (with a good mattress, like Isaiah has been using).

This allowed us to move their play area into their room and make it an even better living situation for us all!

We also have a reading station and a music station in the living room, as well as other bigger toys (currently these tunnels) for them to enjoy.

They carry their toys from room to room and it’s never this clean (I quickly tidied up to be able to take a decent picture!), but that’s okay. We wanted them to feel free to have fun and to play wherever they want, safely. Toddler life is not a tidy life, and I wouldn’t have it any other way.

While it isn’t always easy to live in a small space, it is possible, and it is worth it. It’s saving us money, helping us become debt-free, and it’s forcing us to be thoughtful about using every inch wisely. And there’s less space to clean 😉

Three Years: Tori’s Resurrection Day

· 1 Comment ·

It’s amazing that it has already been three years since our precious Tori entered the arms of Jesus.

Today could be a devastating, sad day. We could choose to dwell on what we “lost” that day, how our world changed, and that would be an acceptable way to spend the day given the circumstances. I mean, we did lose a child. The world would understand. But, as always, we choose to place our focus on where she is and how she is doing, as well as the fact that we will see her again someday and will never have to say goodbye.

Instead of the worldly form of grief, we choose peace.
Instead of blaming God, we choose faith.
Instead of tears, we choose joy.

We decided two years ago that we would always spend Tori’s Resurrection Day (also called Tori’s Day of Triumph) doing something fun as a family. The activities may vary from year to year, depending on the age of her siblings and their interests, but we want to always celebrate her life and her current/forever place of residence.

So, today we had breakfast at Cracker Barrel and had some fried apples (something she LOVED) together:

We went to see Tori’s tree at the Hershey Gardens for our second annual family photo in front of the tree:

We read “I Can Only Imagine: A Friendship with Jesus Now and Forever” to the boys – something we will do each year as we teach them about Tori, Heaven, and faith in Jesus.

img_0778

But most importantly, we enjoyed our time as a family:

I promise we aren’t perfect Christians, nor are we perfect people. We sought out the biblical examples of living after a loved one’s death, and we believe that this is how we are to live. The New Testament, especially, is FILLED with verses about death of fellow believers and how Christians should respond, and it’s always referenced with joy. With peace.

We trust that the God who created the universe can be trusted with every detail of our lives, even when we don’t understand the reasons. 

(If you’d like to hear me go more into depth about this and more, here’s a link to a speaking engagement I had in January. You can also read more in my book, Even So, Joy.)

One of the questions I ask in Even So, Joy is this: If we (as followers of Jesus) truly believe God and His promises, if we truly believe that Heaven is where we belong and where we will spend eternity, then why do we follow the world’s example and allow sorrow and grief to overcome us? It doesn’t have to be this way. 

Would anyone CHOOSE to lose a child? Absolutely not. And yet, we CAN choose our reaction and how we live our lives afterward. We see the example of David losing a child (albeit to very different circumstances) in 2 Samuel 12 and his response:

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

“Yes,” they replied, “he is dead.”

20 Then David got up from the ground, washed himself, put on lotions,[b]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.

21 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.”

22 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.’ 23 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.”

David got up. He worshiped the sovereign God he knew and trusted. He knew he would see his son again someday and chose to live life.

I think about it this way: If it were me that had died, I would NOT want my parents to stop living life. I would not want them to visit my grave (or, as we call it, Resurrection Site). I would want them to remember that the separation is not forever, that I am where we all, as Believers, are supposed to be. That I am finally HOME. 

Brennan and I chose then – and we choose now – to focus on Tori and how amazingly she is doing now. Tori can SMILE. Walk. Talk. Breathe. Play. Be with Jesus. How incredible is that?! Our precious baby girl was so broken here on earth; now she is healed and WHOLE. That is more than enough reason to rejoice!

Brennan and I know and believe that Heaven is real, that she is having an amazing time, and that we will join her someday. Every day is one day closer to that reunion!

You may not be in a situation like ours, but we all have our own challenges and life struggles. No matter what our circumstances, we each have a daily decision to make, a choice for how we view our journey; we have the opportunity to choose for it to be well with our souls and to focus on things above, not on earthly things (Colossians 3:2).

Every day, we each have a decision to make: where is your focus?

Renewed Sense of Purpose

· Leave a comment ·

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. ❤