“She was abnormal from birth, you just didn’t know it.”

These words have stuck in my mind since meeting yesterday with the neurologist who diagnosed Tori.

The sentence was spoken with the same gentleness she used on diagnosis day, and it came after we discussed the impending arrival of the twins.

I remarked that I couldn’t wait to see them achieve milestones that Tori never did, though those moments might be emotional because she never did.

And that’s when she gently said those words: “She was abnormal from birth, you just didn’t know it.”

I told Brennan that evening what she had said we pondered her words. We were new parents, and there are ranges for each milestone, so we weren’t worried until Krabbe had set in and something was clearly wrong.

But, in hindsight, the neurologist is correct.

Tori never had great head control. She never truly laughed a rich, full belly laugh. Tori never slept well. She hated tummy time. She never ate enough (and threw up much of what she did) and was tiny. Tori only rolled over one time at five months old, right before Krabbe overtook her brain.

It makes us wonder what else was abnormal.

As the boys grow, learn, and develop, I know our joy will be even greater as we watch in wonder at their accomplishments and milestones. We will watch in awe as they learn and develop. It will not make us feel sad for Tori, but rather overjoyed for them because they are HEALTHY. They are Krabbe-free. And they are going to LIVE and grow.

And we can’t wait. ❤️

Completely Different

I haven’t changed my phone wallpaper in almost two years.

My dad captured this moment only a couple of days before Tori went to Heaven and it’s the last non-selfie photo I have of me and her together. I have had no desire to change it because it’s comforting to me. I like that it’s always there, easy to find, and that it represents the deep trust she had in me.

I like that it’s the same photo day after day.

This pregnancy has been both similar and different to my pregnancy with Tori. In many ways, though it was still relatively easy, hers was more complicated.

Both pregnancies were/are easy in regards to no morning sickness, little discomfort, no swelling, etc. I do not take it for granted that my body seems to like pregnancy!

But there are some major differences:

  • I had gestational diabetes.
  • I had excess amniotic fluid (because of the GD).
  • I gained over 30 pounds.
  • My hips caused me pain constantly.
  • She would sleep through non-stress tests, triggering multiple ultrasounds each week.
  • I tried to deliver her naturally and ended up having an unplanned c-section.

When we found out that we were having identical twins (mono/di), we immediately assumed that we were in for a rough ride.

And, thus far, we’ve been completely wrong.

  • I passed my glucose test!
  • My fluid levels are normal.
  • I have only gained 20 pounds.
  • My hips only hurt while trying to sleep.
  • We will see about the non-stress tests, which start at 32 weeks 😉
  • Even though I have ultrasounds every other week, everything is going as smoothly as possible! No complications; good, steady growth; very active; healthy boys.
  • This c-section is scheduled, and I am happy about it this time!

I had prayed that God would let us have the easy road this time, and while we’re not in the clear until they are born, so far He has blessed us with a normal pregnancy, and we are beyond grateful. I needed this.

(25 weeks and 29 weeks)

We’ve begun to realize that everything about what’s going to happen in April is completely different than with Tori.

  • Boys, not a girl
  • Two, not one
  • No Krabbe, no genetic issues

And we need these differences, too.

Because it will be completely different, there will be less temptation to compare them to Tori. She has her place in our hearts and they will have theirs. ❤️

We have no reason to fear the future with the twins and yet we are going to be waiting…for the NBS results, for the 5/6 month mark (when Tori’s symptoms surfaced), for them to surpass her life of 19 months and 27 days. I think until we hit that mark we will wonder if the genetic testing was wrong, if the Newborn Screening was wrong, if things are going to be the same as they were with Tori.

The boys are going to learn to crawl, talk, walk, run, play…things we can’t even imagine because Tori was robbed of those opportunities. I can’t wait (and yet I can) until they are mobile and able to get away from us – something Tori never could.

Usually the status quo brings comfort; in this case, the differences are refreshing. And we need them.

I wonder what I will do and how I will feel when the boys are here in regards to my phone wallpaper. I imagine that will be an emotional moment, even if the new photo incorporates Tori in some way, because it will be a reminder that she is in Heaven and not here with her brothers.

But, as we move forward in our new adventure, we know that things are going to change, that change isn’t bad; that things are going to be new and wonderful, even if bittersweet, and we will learn to embrace the change and the joy that these precious boys will bring to our lives.

And we can’t wait. ❤️

Hunter’s Hope Symposium 2017 – Day One

Symposium time is here!

It's the one time each year we are surrounded by people from all over the world who understand exactly what we have been through. It's the week where we can let our guard down and enjoy these precious moments with our Leukodystrophy family knowing that we fit in here, that we are "normal" here.

None of us would have chosen to be in this position, to be in this "family" of such suffering and grief, but we cherish the relationships and the joy that have come out of everything we have endured.

If grief and pain were measurable, the weight of it just from these precious families here would be astronomical in size; every family here has lost – or will lose – a beloved child (or two), something which has been called the most painful thing a human can endure; and yet, all we see are smiles, joy, friendships, authenticity, and an appreciation for each and every moment. We see hope. And it's amazing.

This is our third year at the Symposium and it's the first one I have been slightly hesitant to attend, for reasons I am still deciphering.

Perhaps it's this: Tori was with us for the first one and she was cherished by all; last year she had gone to Heaven a mere four months earlier and everyone remembered her; will she be remembered this year?

Perhaps this: we now seem to fall into the category of parents who lost their children "a while ago" and it's strange. It's a different feeling being here now, a year after she went to Heaven…not a bad feeling, of course, just different.

I watch the parents with their living children and am amazed at how distant that feels. The suction machines, the feeding pumps – sounds so familiar and yet such a distant memory because I haven't heard them or thought about them in a year. Something that was once part of my daily life now feels like a lifetime away.

I'm not caring for Tori constantly now, and I'm not necessarily grieving anymore (though it will never fully be over), so it's a strange place to be. It's just Brennan and me now.

Perhaps it's strange to be here because it's a time when we're forced to remember that this was our life for fourteen months, and that we did lose our precious daughter. In daily life it's easier to move on because of distractions and tasks. Even though we talk about Tori daily and think of her all the time, it's different somehow to be here surrounded by other families going through the same thing we did.

Despite my emotions through which I am sorting (thanks for letting me process above), I am so happy that we are able to be here again. We're praying that next year we will have a new baby with us ❤️

As always, I will blog about the new research findings and everything else we learn throughout the week. So thankful for Hunter's Hope and all that they do to support Leukodystrophy families.

It's going to be a great week!

The Big Move

I’ve moved far too many times in my life.

  • From Hayward, CA to Red Bluff, CA (and then another move within Red Bluff).
  • From Red Bluff to Azusa (far too many moves to count while I was in college!) – 525 miles.
  • From Azusa to Glendora (and two moves within Glendora).
  • From Glendora to Harrisburg, PA (five moves since I moved to Pennsylvania) – nearly 3,000 miles.

Each move has brought with it new adventures, new challenges, new surroundings. Most moves were welcomed, though some came from circumstances I could not control.

This move is different than all of the above.

This move means leaving the home we fixed up, the home where we became a family, the home from which Tori went to Heaven. So many memories in less than four years.

As of this morning, we owned this house for three years, eleven months, and eighteen days. 1,449 days. I haven’t lived anywhere this long since I left my parents’ house when I was eighteen.

And I think that’s partly why I have struggled with the idea of moving. I know it’s the plan, and I know it’s a great one because of the financial progress we will make. My heart hasn’t been communicating with my mind on this one.

But, it is finished. And I feel like this morning brought me closure. 

Let the new adventure begin ❤️

Sacrificing the Good for the Great

I knew this would happen.

We bought our first home in December 2012 as an investment, knowing that we would fix it up and then sell it and pay off our $50,000 in student loans with the profit.

I did well for the first year or so with not being attached to it. I remembered that it was only a temporary home and that helped me not be attached emotionally.

But, somewhere along the line, it happened. I became attached.

Now that we are so very close to listing our home, I am finding myself feeling sad because I don’t want to leave it. It’s the perfect little home and we (with the amazing help of our friends and family) have made it look so great! We have had so many memories there. It was our first home together. I have lived here longer than I’ve lived anywhere since I left my parents’ home. It’s where we lived with Tori. And it’s where we said goodbye.

My mind loves to wander and reminisce, and I try to find ways out of selling it. But, I have to stop and remind myself that we are sacrificing the good for the great.

Our home is good. 

Being debt-free is going to be great. 

I can’t even imagine how amazing it will feel to have $500 extra in our savings account each month instead of it going to student loans. We made a wise investment in this home and we are so close to seeing it pay off. And that feels so good, but that doesn’t mean it will be easy.

I remind myself that we can always find another home to make our own. Once we are debt-free we can more easily live the life we want to live.

Sometimes we have to sacrifice what’s good in life for what’s great, and it is always worth it, even though it’s difficult. Now if I can just convince myself…

(As a side note, if you’re looking for a beautiful 1,800 sq. ft home in the Colonial Park/Lower Paxton area, let us know!)

Here are a few pictures of the remodeling we’ve done to our home:

Busy Summer and a Much Needed Update

I haven’t blogged much this summer and that has partially been intentional, partially not. Brennan and I have been traveling, working many weekends at MHS, spending time with family and friends, helping with church activities, doing photography for an amazing camp, hosting many RYFO bands, and so much more. We’ve been enjoying life and, though busy, it has been restful and refreshing.

We’re overdue for an update, so here’s what we’ve been up to:

Writing: It has felt good to not pressure myself to write, but to only do so when inspired. I have been writing for a new site that launched in July, as well. Check out The Transcend Project for some great articles about life as a Christian and life in Harrisburg, PA from several different authors. I’ve also been working on my book and the manuscript is almost completed. I have likely found an agent, my book proposal is in process, and we’re still hoping to start pitching the book by October.

The House: Our kitchen is finished and it is stunningly beautiful. We are hoping to list the house by the end of August, which means a lot of work needs to be done in order to be ready for showings (i.e. I need to put my stuff away 😉 ).



(For those who aren’t aware, we bought our home 3.5 years ago with the intent to flip it and sell it; it was bank-owned so we paid far less for it than it is worth. If we sell the house, we can pay off our student loans – $50,000 – and be debt free. Even though we love our home, we will love being debt free even more, and it will allow us to live life so much more freely than we currently can.)

If you’re looking to buy a home in the Colonial Park/Lower Paxton area, we know of a great one that will soon be for sale! 😉

Children: We so desperately want to be parents again, but there are serious genetic risks if we conceive naturally (Krabbe may be a recessive gene, but it is aggressive and it’s very likely that we’d have another baby with Krabbe). We have some options, but they are all incredibly expensive and we simply can’t afford them at the moment. We’ve had some setbacks in that area and it has been incredibly disappointing. BUT, God is sovereign and we continue to follow Him and trust His timing.

Tori’s headstone was placed around her birthday and it is beautiful:


Her tree was also planted at The Hershey Gardens:


Work: As if I need anything else on our plate, after consideration and prayer, I decided that it would be wise to get a part time job since we don’t know when (or if) we will be having more children. I accepted a position today at The Hotel Hershey and will start at the end of August. It will only be 2-3 days per week with the option to pick up additional hours to assist my co-workers, which will still allow me the flexibility I need to continue to write, lobby, do photography, and serve the community with our church.

Newborn Screening: There is another Advisory Panel meeting in two weeks and I will be attending. I will give a full update just like last time.

Brennan is running in the Hershey Half Marathon in October with many other people from our church. He wanted to run the race in Tori’s honor and he is working hard to make this happen. Please pray for his training, that he would build the required endurance and that he would finish the race well.

Please continue to pray for Brennan and I for these things – especially the book (for favor from the publishers), the house (that it sells quickly and for the amount needed to pay off our student loans), and future children (that we can have them).

We are doing well, continuing to praise the Lord for the gift that Tori was, and learning to live life without her by our side. God is good, God is faithful, and God is sovereign.