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 … Continue reading “She was abnormal from birth, you just didn’t know it.”
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 … Continue reading Completely Different
I (finally) received my first copy of my published book today!
As I held it in my hands I was overwhelmed by two emotions: joy and heartache.
How fitting that the quote I chose for the back of the book talks about that very conflict.
I felt such joy at knowing that my hard work had paid off, that Tori’s story was finally being told in more depth than ever before, and that new people will learn about her and about Krabbe. I’m finding such unexpected joy in being able to say I’m an AUTHOR.
But, then I was filled with sorrow because I never should have had to write this book in the first place. No one should lose their child, especially to a disease like Krabbe. I would do anything to have Tori back, healthy, running around like an almost-four-year-old would be doing. Anything.
I allowed myself to embrace the tears (likely also caused by pregnancy hormones 😉 ) for a few moments and then I reminded myself of what I know to be true: that all is well. And I focused on the joy that she brought to our lives, the knowledge that she is in Heaven and we will be with her soon (but not quite yet, as Jim Kelly likes to say), and on the fact that God is going to continue to use her – and us – to save lives as we fight on for Newborn Screening for Krabbe.
As of now, my book is sitting at #1,336 overall on Amazon. That sounds far from #1, but it’s far higher than 8,000,000 (the number of books for sale on Amazon). It’s also the #1 new release in the Christian Families category. And we are blown away. While we don’t yet know how this translates into numbers of books sold, we’re humbled at these stats.
Numbers matter because Tori matters, because increased awareness is based on the number of people who know about Krabbe, and because numbers will generate revenue for us to donate to Hunter’s Hope.
So, if you haven’t picked up a copy (or several), please do. It would mean so much to us.
I want to preface with this: the babies are well and we have NO reason to be concerned. 😉
I had appointments yesterday and today, as well as the normal anatomy scan. They were *mostly* cooperative. They kept moving around so that the technician couldn’t get some of the specific pictures needed so I will go back next week for a follow-up scan.
They both look great and are measuring basically on track. One is 13oz and one is 14oz.
It was determined that the twins do share a placenta (monochorionic/diamniotic) which puts them in the middle-of-the-road risk wise. They aren’t the most risky type of twins but they aren’t the least risky, either. 🙂
I’ve been upgraded to “high-risk” because they are monochorionic, as there are a list of potential complications (NO evidence of any, just potentials) such as Twin-to-Twin-Transfusion Syndrome, etc. Because of this, I will have ultrasounds every two weeks, a fetal echo-cardiogram, and other testing. Thankfully we live five minutes from the med center!
They said it’s likely that they will be delivered between 34-36 weeks. While that’s not ideal, we will do whatever is best for the boys. ❤
Everything looks great and they definitely showed personality during the ultrasound by doing somersaults and curling up instead of cooperating. Today one of them kicked the heart rate monitor as the doctor was trying to quickly listen. 😉
I’m not sure this pregnancy could possibly be any easier and I am so thankful. I know I still have up to 18 weeks to go and that things may become more challenging, but for now I treasure the ease.
It’s inevitable lately: when meeting new people who don’t know about Tori, they will ask if this pregnancy is my first.
Since I recently started a new job it’s happening fairly often. The first few times took me by surprise and I had to think quickly about how to answer: I could be truthful and tell them about Tori, or I could be mostly truthful since this is my first TWIN pregnancy and just say yes to avoid the uncomfortable truth.
So far, I’ve opted to just tell the truth, short and sweet, and allow the potential awkwardness (from their end) to exist. I look at it as an opportunity to tell others about Krabbe, about Tori’s amazing life, and about the faith that has sustained us.
In each instance, I recognize that I have a choice: I can be truthful with joy or I can be truthful with pain. I can embrace the joy we have found or I can be miserable.
I continue to embrace joy.
The title of my upcoming book is “Even So, Joy” which I derived from two sources: the song “It Is Well With My Soul” –
And Lord, haste the day when the 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.
and Habakkuk 3:17-19 –
Even though the fig trees have no blossoms,
and there are no grapes on the vines;
even though the olive crop fails,
and the fields lie empty and barren;
even though the flocks die in the fields,
and the cattle barns are empty,
yet I will rejoice in the Lord!
I will be joyful in the God of my salvation!
The Sovereign Lord is my strength!
He makes me as surefooted as a deer,
able to tread upon the heights.
The Bible makes it abundantly clear that things are going to be imperfect here on earth. Once sin entered the world, it was inevitable that life would be terrible at times. Things are going to go wrong, our hearts are going to hurt, and sometimes it will seem unbearable.
But, the Bible also makes it clear that it can still be well with our hearts and our souls no matter what comes our way because all of this is temporary. Imperfect life on this earth should make us desire the perfection of what’s to come in Heaven.
For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! – 2 Cor. 4:17
Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. – James 1:2-3
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. – Romans 5:3-5
Yet what we suffer now is nothing compared to the glory he will reveal to us later. For all creation is waiting eagerly for that future day when God will reveal who his children really are. Against its will, all creation was subjected to God’s curse. But with eager hope, the creation looks forward to the day when it will join God’s children in glorious freedom from death and decay. For we know that all creation has been groaning as in the pains of childbirth right up to the present time. And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us. We were given this hope when we were saved. (If we already have something, we don’t need to hope for it. But if we look forward to something we don’t yet have, we must wait patiently and confidently.) – Romans 8:18-25 (emphasis mine)
Our God is a God who redeems. He is worthy of all our praise, even when circumstances don’t appear to be praiseworthy. He knows the full story while we only know this current chapter.
You have a choice to make daily just like me; though our circumstances may be different, I know your life isn’t going perfectly.
Joy is something to be chosen and embraced in the uncertain times, in the “even though” or “even if” moments. For it is then that our faith grows stronger and we are reminded of God’s love, and the least we can do is share it with those who need it the most.
Always be real and genuine, of course, but always be pointing others toward the hope and joy we have in Jesus. It has been said that light shines brightest in the darkness, and this has certainly been proven to be true in my life. Our decision to choose joy after losing a child stands in stark contrast to the way much of the world would react. And that’s kind of the point. We should be different as Christians in this world.
I will continue to be honest and share that the twins are actually child two and three for us, not our first. I will embrace the potential discomfort and awkwardness that the other person may feel and I will point them to the glory of the Lord and the hope and joy He brings.
Even so, it is well with my soul.
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.
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!”
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.
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.
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!
Even So, Joy 