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! 

 

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!

Even So…

The common theme of the past six months has been hurdles. Things haven’t been going as smoothly as we would like and we’ve come up against some significant challenges.

  • Buying this house came with one obstacle after another and cost more than we anticipated not only to buy it, but to do the necessary renovations (that still aren’t done because we ran out of money). It seems like all of our Dave Ramsey progress was lost and we’re having to start over again in our process to becoming debt-free.
  • We drained our savings (and our HSA) to pay for IVF (though MUCH of the cost was donated by generous and amazing people and we are SO very grateful!), and it’s tough to rebuild it.
  • We started an AirBnB in the apartment upstairs and have LOVED running it. It has brought joy to us and to the families and single mothers we have been able to serve and bless through this venture. It has also been hugely beneficial financially. 

    However, two of our neighbors are “uncomfortable” with the idea for ridiculous reasons (they don’t understand AirBnB at all, essentially) and they filed complaints with the township. We were forced to make a decision to either pay $450 and wait three months (and go to two zoning board hearings) to try to be rezoned for this type of use (no guarantee of approval), or give up and just get a tenant (less income, loss of the opportunity to help others enjoy Hershey and run an AirBnB; loss of space to host family and friends and bands (through RYFO.org) upstairs).

    Ultimately, we’ve decided to try to find a tenant because some battles aren’t worth fighting. The township needs to modify their rules about AirBnB instead of trying to make it fit into other molds and making it impossible for residents to do. I am proud of my letter to the township supervisors and hope that it will make a difference in the future for property owners to use their property as they choose.

  • I haven’t had much time to finish my book proposal or to find an agent, even though my manuscript has been complete (and edited) for six months. I’m struggling to remain positive about it being published, even though I believe that the Lord led me to write it for that purpose.
  • I am committed to do many good things, but finding a balance and remaining disciplined has been a challenge.

Even so, it is well with our souls.

It hasn’ t been ALL bad, but the hard things in life tend to overshadow the good; when we focus on the positive we realize that we have had some GREAT things happen:

  • We thoroughly enjoyed our trip to California, Oregon, Washington, and ALASKA in June and returned home feeling rejuvenated even though the trip was exhausting. Seeing the beauty of God’s creation and spending treasured time with family was worth every lost minute of sleep.
  • We found out that we have THREE embryos (out of the five) that are healthy! Two are not even carriers of Krabbe! The fourth embryo needs to be retested, and the fifth has chromosomal abnormalities that are not survivable. We are thankful for these 3-4 and will hopefully do the first transfer in August.
  • Thanks to my dad spending two weeks out here, we’ve nearly completed the basement projects (laundry room/bathroom drywall and paint, etc.). We’re going to be ready for hosting bands and other guests so soon! Since we’re giving up the AirBnB this space will allow us to continue to minister to bands through RYFO – an amazing network of host homes for touring musicians.
  • Brennan and I are trying to become much more disciplined than we are currently in every area of our lives. It’s a struggle but we must overcome and become self-disciplined.

Through it all, my heart has remained at peace because I trust the Lord completely and I have absolute faith that this is all happening for a reason. As the popular song states, “Let go my soul and trust in Him, the waves and wind still know His name…” He is still on the throne, He is still in charge, and, most importantly, He still LOVES us. In those moments when I feel worry start to encroach on my peace, I stop and pray and remind myself that He’s got this.

And so we press on, knowing that it will all turn out alright.

It Is Well

I have served as the worship leader at Transcend Church for a little over three months now. While I have led worship almost continually over the past 22 years in some capacity, this is the first time I have been “the leader” of a worship team instead of me just playing guitar and singing. This has certainly been a growing experience for me and I am so thankful for the members of the worship team and their talents and hearts for worship.

Few are aware of what goes into choosing a worship set – it’s far more than just picking songs you like. I typically read the Scripture for the upcoming sermon and prayerfully choose songs that go along with the sermon. Yet, sometimes it’s honestly just following the Holy Spirit’s guidance and how I “feel” about a particular song fitting in with the set.

This week was definitely a “feel” week as the passage did not easily lend itself to songs. While I was doing all of this, I considered that this Sunday was Mother’s Day but didn’t give it much thought.

As I leafed through my (gigantic) binder of music, a few jumped out at me, unrelated in theme at first glance – “Great Is Thy Faithfulness” would start the morning as a great reminder that God is trustworthy, merciful, and faithful. We’d do “Even Unto Death” and “Give Me Faith” to remind ourselves that the God we serve is worthy to be followed and trusted, no matter what. I chose a few other songs to fill in the set and thought I was done.

I grabbed my guitar and began playing through the set but it still didn’t feel complete. Later that afternoon the hymn “It Is Well With My Soul” – one of my favorites – came into my head and I knew that was what was missing. In addition, I decided to add Bethel’s song “It Is Well” to the end.

If you aren’t aware, the back story to the song “It Is Well” is one of the most powerful I’ve ever heard. Mr. Spafford lost his four daughters in a shipwreck, all at once. Four daughters. And yet, he penned the words to this poem (now song) and declared that it was well with his soul.

How can that be?

I contend that…

It can be well with your soul despite your grief. 

It can be well with your soul despite your circumstances. 

It can be well with your soul despite your questions and uncertainties of God’s actions. 

This can all be true because it isn’t dependent on you – it’s dependent on God. When you believe the truth of who God is (faithful, loving, merciful, kind, generous, good), when you believe His Word and His promises (there IS life after death for those who trust in Jesus!), and when you trust Him fully, there is peace within your soul that surpasses understanding (Phil. 4:7). We’ve lived it. We know this is true.

img_6662

We have a beautiful sign in our home that quotes this hymn, and it has been a great reminder to us as we’ve learned to live without Tori here on earth. We’ve truly learned that “whatever our lot” we can be at peace when we are trusting the Lord and following Him.


As I led worship this morning, the emotion of missing Tori began to well up inside as we sang the final verse of the hymn:

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul!

The emotion was two-fold: first, remembering the tragic circumstances that brought this song into this world and how deep the pain is when you lose a child; second, I long for this day – the day when Jesus returns and we are reunited with our precious Tori (and other loved ones who have gone before us). I cannot wait for that day and for the eternity with her that will follow.

I got through the song, but as the sermon began my eyes were teary as I pondered the joyous reunion that awaits us.


As the Bethel song by the same name says,

Through it all, through it all, my eyes are on you.
Through it all, through it all, it is well.
So let go, my soul, and trust in Him
The waves and wind still know His name.

The same Jesus who calmed the storm that threatened to wreck the ship He and His disciples were on is the same Jesus who lives today and loves us deeply. He is still in control, even when we can’t feel it.

Being well in your soul doesn’t mean that things are perfect, or that you pretend to not be in pain. It simply means that you trust Jesus more than you fear your circumstances.

Yes, my Tori is gone. Yes, my heart longs for her. Even so, it is well with my soul. 

img_6988-1


I don’t know why I was led to put the songs on the set list today that I did, but I know that, if nothing else, my own heart was encouraged by the words of these songs. Hopefully the Lord used them to speak to others, as well.

So, I Got a Job…

As I mentioned before, I recently accepted a part-time position at The Hotel Hershey – more specifically, at The Spa at The Hotel Hershey (where Brennan has worked for 13.5 years and counting). This all came about rather quickly, so I’m still getting used to the idea of working outside of the home, but I know that it will be good for many reasons.

This was my idea. Even on Easter, just hours after Tori went to Heaven, I asked Brennan what I was supposed to do now that she is gone. My “job” as a mom was suddenly null and void, and I was completely unsure of what I should be doing.

Two years ago I left my job (that I loved) to become a stay-at-home mother; I ended up loving my new life more than I had ever imagined. I was so thrilled that I may never have to have a “real job” outside of the home again. I had finally found what I was meant to do.

And then, Krabbe.

Krabbe is the proverbial gift that keeps on giving, but in a negative way. I suppose that makes it the gift that keeps on taking.

It took Tori. It is making future children merely a dream. And it took my beloved job from me.

With Tori gone and no more children in our immediate future (yet), I just don’t feel as though I can justify not having a job anymore. I want to help with our finances during this period of waiting to ease the burden from Brennan (even though he has never complained).

I didn’t take the job because I am bored – I’m so far from being bored! I have many things on my plate that require time, but none of them bring money along with them (yet), unfortunately. My book is essentially done, and the book proposal is in process, so maybe that will eventually bring in some extra income, but it’s not a guarantee at all.

This summer was amazing and it was just what I needed: doing photography for CRC, writing/editing for The Transcend Project as well as my own blog and manuscript, serving at Transcend Church, traveling and seeing family, lobbying for Newborn Screening in Pennsylvania occasionally (and next week), and many other things. Doing these things gave me an outlet for my creativity, filling my heart with joy as I was able to serve once again in these capacities. I was able to take some time to do what makes me happy, and I am so thankful for that. All of these things will still happen, of course, even though I have a job – that’s why I only accepted a part-time position 😉

More than anything, though, what my heart longs for is to be a mother again. That’s all. The very thing that so many women take for granted is the thing I want most of all, and it’s so risky (to try naturally) and expensive (IVF or adoption) for us because of our genetics.

So, while we wait on the Lord and trust His timing and guidance, I decided that it wouldn’t hurt to get a fun part-time job (2-3 days a week with the option to take on extra shifts) at a place that feels like home with people who have been so supportive of us through everything. And God made all of that happen. 

Trust in the Lord with all your heart;
    do not depend on your own understanding.
 Seek his will in all you do,
    and he will show you which path to take. – Proverbs 3:5-6 NLT

If nothing else, this will get me out of the house, allow me to meet interesting people, and provide new topics for my writing 😉 I’m sure that my encounters with guests will be interesting!

In all things, we continue to trust God fully, knowing without a doubt that whatever He has in store for us is amazing. ❤

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 😉 ).

img_0677

img_0670

img_0668
(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:

img_0542

Her tree was also planted at The Hershey Gardens:
img_0546

img_0545

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.