I Wasn’t Looking for a Job, but I Found One…

Last Thursday evening, as I was mindlessly scrolling through Facebook, I saw an ad that caught my attention.

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I found it at the perfect time, really. I had realized recently that I was feeling a little down because I’ve been bored. I have never done well with being bored, which is why I have played seven instruments in my life, among other examples. I’m in a season of waiting for many things – waiting for my book to be in print, waiting for the twins to be born, waiting, waiting, waiting.

Brennan would ask me how my day was and I often felt like I had no idea because it didn’t feel like I had accomplished anything. I didn’t like that.

I haven’t worked at The Spa since May 15th because of the IVF process and because of our busy schedules over the summer. Once they were fully staffed I decided to go inactive and enjoy some time off. This allowed me to focus on running the AirBnB over the summer, finishing my manuscript, resting during the first trimester (which was SO necessary), and other things that came my way.

I’ve been slowly letting go of major responsibilities on my plate in preparation for the arrival of the twins. My last day of leading worship at Transcend Church is December 31 (also my birthday 😉 ), and that will be the last big thing for me to stop doing. It feels strange, but necessary, as my hands are about to be very full with two babies. 🙂

This has left me with a lot of time on my hands, and while it’s been great to spend my days watching Hallmark Christmas movies and relaxing (while also doing chores and things intermittently), I began to notice that I wasn’t super happy. Not depressed, not miserable, just not as happy as normal. I’m bored! 

So, this ad. It was for a job at The Hershey Story, the amazing museum about the life of Mr. Hershey and the town/company he created. Even better, it was for “Chocolate Tasting Associates.” No, that doesn’t mean that I would get paid to taste chocolate, but it’s almost as great! Essentially, it’s like being a “chocolate bartender” because these employees serve “shots” of warm drinking chocolates from specific places around the world to guests.

Did you know that cacao tastes drastically different depending on its country of origin? It’s amazing! That’s why Hershey blends beans to create a specific flavor.

I went ahead and applied, thinking it would be fun and interesting.

The next morning, I heard back (so fast!) and was asked to come in for an interview. I think I caught their attention because of my vast experience with the Milton Hershey School, The Hotel Hershey, and Hershey Entertainment & Resorts, but I’m not really sure.

I had an interview yesterday and was offered a job on the spot – and yes, I was upfront about being pregnant! 🙂

It will be super part-time, flexible, and interesting. It will be easy physically, stimulating socially, and fulfilling intellectually. As many of you know, I LOVE telling people about Mr. Hershey and the amazing man he was. Now I will have another opportunity to share stories with guests who may ask questions. I suppose it will use my history degree to some extent 😉

I will be cross-trained to teach in the Chocolate Lab and to run the Tastings bar, and I’m looking forward to the opportunity to get out of the house a few hours a week until the twins arrive.

I had orientation today which was completely self-guided and fun. I spent time walking through the museum, did a class in the Chocolate Lab (where we used milk and white chocolate to create a festive reindeer), tasted chocolate, and enjoyed the atmosphere of The Hershey Story. As an introvert, it was exactly what I needed!

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I wasn’t looking for a job, but I found one, and it’s going to be great.

How We Cut Our Cellular Costs in HALF

Like many people, Brennan and I have recently been trying to figure out where we could cut costs in our budget. There weren’t many obvious possibilities, but we saw a commercial that brought us hope.

We have Comcast internet at home, so when we saw a commercial for Xfinity Mobile we were intrigued. It sounded too good to be true, but it has turned out to be everything it promises.

  • You only pay for the data you use – $12 per GB, or unlimited for $45. This gives you complete control over your bill!
  • You can switch back and forth between unlimited and pay by the gig, even mid month! This means you’re always getting the best deal.
  • Xfinity uses Verizon’s network so we have the same cellular coverage that we did with AT&T.
  • You are automatically connected to Xfinity WiFi hotspots whenever they exist, which is frequent! This means you use less data.

Our first bill with Xfinity will be HALF of what we were paying with AT&T. That’s a savings of $100!

The added benefit has been increased quality time: we’ve been trying to not use our phones at all when WiFi doesn’t exist, so we’ve had more quality time together while we’re away from home.

It’s so easy (especially as an introvert) to just pick up your phone and browse the internet instead of engaging with people; but, because we decided that we will try to use as little data as possible each month and made it a game, it’s also increasing our quality time with others.

It was hard to leave AT&T after fifteen years as a satisfied customer, but so far Xfinity is proving to be a much better way to do mobile and it’s saving us a significant amount of money each month.

This isn’t a paid endorsement, but I’d encourage you to look into services like this if you’re interested! It’s worth the switch.

Our IVF Journey: The Results

As I type this, I am halfway through the first trimester already – so, our IVF was successful! However, it didn’t go as we had anticipated.

On September 1, we drove to Towson, MD for the transfer. The entire process lasted about ten minutes but the transfer itself was about one second! We were given a picture of our two precious embryos as they were hatching from their shells.

Right before the embryo transfer – #4 is the boy and #6 is the girl

We put in two embryos because we really wanted twins, but we also did it just in case only one made it. Financially it was necessary because this transfer was already paid for but subsequent ones will cost around $4,000 each. We needed this one to work.

The transfer was quick but the waiting was long.  Thankfully we were both distracted by the happenings in our lives and didn’t have much time to wonder if I was pregnant. The pregnancy test wasn’t until September 14, but while I was visiting family in California I took a test and it was positive. It was a super faint line, but there was a line!

On September 14, I had blood drawn and received the call that afternoon that I was indeed pregnant and that my HCG numbers were great – 971! They said it was too early to know if there were twins in there based on the number. More blood was drawn a few days later and my HCG was close to 6,000.

We had our first ultrasound on September 25 – also Brennan’s birthday. At first we were only seeing one baby and our hearts fell. The technician then said, “you’re having identical twins!”

Six Weeks

To say that news was shocking is an understatement, as it’s actually quite rare – even in IVF – for embryos to split. We’re talking less than 2% chance. We were both shocked and saddened at the same time because this means that we lost an embryo.

The funniest part of all of this is that we now have no idea what we’re having! We knew when we put in the boy and the girl…but now we don’t know which embryo split! God has such a sense of humor! We will be happy no matter what we’re having, but we’re hoping these are boys simply because it’s our only shot at boys – our remaining frozen embryo is a girl.

Seven Weeks

Both babies have strong heartbeats (141 at the seven week ultrasound) and are growing right on schedule. I feel fine and have no pregnancy symptoms aside from being a little more tired. My pregnancy with Tori was easy with no morning sickness so I’m praying for the same with the twins!

I have 1-2 more weeks of being seen at Shady Grove Fertility before I transfer to my doctor in Hershey. I cannot recommend Shady Grove highly enough – they are the best at what they do and have been so good to us!

It has been quite the adventure. It hasn’t always been easy and I’m growing weary of the nightly progesterone shots (and the side effects that brings). But, it’s beyond worth it to know that I’m carrying precious Krabbe-free twins (they aren’t even carriers!)!

Thank you all for continuing to pray for us and support us. Please keep praying for the twins – specifically that they are in their own sacs – and for an uneventful and full-term pregnancy. My goal is to carry them until at least 36 weeks, and preferably beyond that. ❤

God is so good and we are so thankful that He has made this possible.

Pregnancy and Parenting After Loss

I’ve mentioned before that ever since Tori went to Heaven I’ve felt quiet, as though I have nothing to say. And so I’ve stayed quiet, not wanting to force the words just for the sake of writing.

Well, I finally feel as though I have something about which I can write.

Pregnancy and Parenting After Loss.

As the date for our embryo transfer draws nearer, I have so many thoughts and feelings running through my mind and heart. We will be pregnant soon! I honestly feel like I’m already “nesting” even though I’m not even pregnant yet. Brennan can attest to this, haha. Granted, that’s partially because we still haven’t really moved into our house yet and I’m ready to be SETTLED. But I digress. My heart longs to be pregnant, to have the hope of future children.

I just want to be a mother again, to hold and care for these precious babies who are currently frozen. 

But there’s a lingering fear that I can’t quite chase away – a fear that one or even both of the embryos won’t attach. That I will miscarry. That we will have two or three children in Heaven and not just one. There’s little reason to think this will happen, says my doctor. I’m healthy, fertile, and have no reason to believe that the embryos won’t attach. We’ve seen how God has moved mountains to make this even possible. So why are these fears so present?

I have a feeling that parenting any child after losing Tori is going to be a greater blessing than we can imagine and yet contain the potential for greater fear than we’ve ever had before. Any symptom that reminds me of Krabbe. If they have reflux like we thought Tori did. If they have any developmental delays. Anything like that will have the potential to throw me back into the pre-diagnosis days with Tori, wondering if the genetic testing was wrong. Wondering if they do have Krabbe. I have a feeling this will be a challenge to overcome.

I’m not one to be fearful, really ever. I trust the Lord and I believe that He has me in His hands. I believe that He is in control and that He knows exactly what will become of these precious frozen embryos. So I must surrender, moment by moment, any fear or doubts that creep into my mind, because I know that they aren’t from Him. 

I will continue to process my thoughts and emotions about all of this as we progress though pregnancy and parenthood after losing Tori. I pray that my transparency is a blessing to others and that the Lord will continue to work in and through our lives.

Please pray for our embryos – our son and our daughter: pray that they will survive the thaw, that they will attach to my uterus quickly, and that they will develop into healthy, thriving babies. September 1 is quickly approaching! 

 

So, We Missed a Wedding Today

We left our friends' house in the Lynchburg, VA area for Raleigh around 10:30am today to attend our friend Breanna's wedding. We allowed for plenty of time to get there and were enjoying the beautiful day.

We stopped along the way at a CVS to get a few things; I came out of the store, put the key in the ignition and I couldn't even turn the key. It was bizarre.

Brennan tried, I tried, and finally, after replacing the battery in the key fob, we called AAA. By this time it was noon, and the wedding was just two hours away (and so were we). They said it would take ninety minutes or so for a tow truck to get to us.

We were going to miss the wedding.

After a few minutes of being grumpy and frustrated, we decided to make the most of our day. It was a great temperature, not a cloud in the sky, and we happened to have camping chairs in the van!

We got some strange looks from people, understandably, but whatever. 😄 We were comfortable and having fun.

A kind woman with four children (including a four week old baby) asked if we needed any help and offered her jumper cables – too bad our battery was SO dead that it didn't work. Still, her kindness was so appreciated! She was the only person to offer assistance.

When the tow truck arrived (just as the last of our shade was disappearing) we realized that there weren't any open repair shops around! Thankfully we found one and they were able to fit us in.

The van was done by 4pm, so we missed the wedding entirely. While we aren't happy about this, today was another reminder that we have a choice to make every situation joyful or miserable.

We had a good day despite the disappointing outcome of missing the wedding. We chose to look for the positive and found a lot of things for which we could be grateful! ❤️

  1. It was breezy and nice.
  2. We had chairs in which to sit.
  3. We had access to a restroom!
  4. We had a AAA membership.
  5. We had water and food.
  6. We had an opportunity for quality time.
  7. We made memories together.
  8. The repair was not expensive!

Remember in moments like this that it's going to be okay, that someday you will look back and laugh, and that there's always something for which you can be grateful. ❤️

Hunter’s Hope Symposium 2017 – Day Two

Today we heard updates from several hospitals that are working toward becoming Leukodystrophy Centers of Excellence in order to better care for these children and their complex needs, and we also heard research updates.

I'm going to jump right to the research updates because this was incredibly exciting.

First, we were told that Dr. Escolar has a paper that will be published the first week of September (a week AFTER the next NBS Advisory Panel meeting in PA) and this paper could very well get Krabbe onto the federal RUSP because it answers questions that previously weren't as clear. Why does the RUSP matter? Many states will only screen for diseases that are added to the Federal RUSP; once Krabbe is added, many states will automatically test for it!

As you probably remember, one of the things we (and many other families) have been told as we advocate is that they need published data. We've all been waiting and waiting for something to be published to help our case for adding Krabbe and this will apparently be it!

Second, and THE most exciting part: they are so close to a cure for Krabbe. The doctors didn't say it like that but it was apparent that is what they meant. Dr. Escolar and others have been treating twitcher mice with Krabbe successfully using the bone marrow transplant AND gene therapy together and the outcomes have been unbelievable!

This chart shows the life span of mice who were untreated, treated with bone marrow transplant only, and a combination of the two. The combination therapy is the top blue line. The mice who had the combination therapy in 2015 are STILL LIVING and show no signs of the disease!

The FDA has approved the idea but it won't go to clinical trial for 3-5 years unfortunately. In the meantime, our hearts are so hopeful because this is incredible news.

Thirdly, they discussed the improvement in the NBS test itself and the near-elimination of false positives using two factors and not just one (low GAL-C activity and high psychosine levels) and by using a computer algorithm to sort the data that has proven to accurately predict the form of the disease (early or late onset).

I tried to simplify all of this the best I could. To sum it up, research has made leaps and bounds in just the last two years and they are closer to a cure than ever before!

Dr. Kurtzberg from Duke also reported on the success they are seeing in stem-cell treatments of Cerebral Palsy and Autism. Stem cells from cord blood are incredible tools and doctors are doing amazing things with them.

Hunter's Hope does such an amazing job of not only funding research but also coordinating the dialogue and cooperation between scientists who are all working toward the same end. If you would like to support them, you can click here! Our goal is to raise $3,000 for them before Friday's walk!

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!