A Season of Waiting

It’s hard to believe that it’s October already. September was a blur, filled with many changes and hardly any free time. Now it’s Fall and the temperatures have cooled, the leaves are starting to change, and we are in a season of waiting and expectation.

My job has been going well, but they’ve been putting me on the schedule for far more hours than I had requested, leaving me feeling exhausted and with little time at home. Between working five days a week (as opposed to the requested 2-3 max) at The Hotel and one day a week at church, I’ve been left with only Sundays off consistently, and I’m hoping that changes soon. I haven’t had much time to write, read, or rest, and I feel weary.

In addition to working so much, we had to say goodbye to Brennan’s car last week, leaving us with only one vehicle for the foreseeable future. This means many hours of sitting at The Hotel for one of us when our shifts don’t coincide (all too often). Now one of the windows on the van isn’t working properly and we’ll have to have that fixed soon. Money is tight, we each have our own minor physical struggles (ear infections for me, leg injury for Brennan), we’re too busy (and that is out of our control), we miss Tori, and we’re tired. It’s so easy to feel discouraged right now.

Tori has been in Heaven for six months and it’s amazing how easily it is for us to lose perspective already. After all that we’ve been through, all that God has brought us through, it’s still so easy to get wrapped up in all the things that aren’t going our way. We realized this earlier this week and we corrected our perspective – what we’re enduring now is nothing compared to what we went through with Tori, and we can’t let ourselves be overcome by these trials. We can’t allow ourselves to forget that God is holding us in His hands and is in complete control! He is faithful, He is good, and we are trusting Him during this season of waiting and uncertainty.

There are some exciting things happening this month for us:

  • We’ve been working feverishly to get our house ready to be on the market, and that will happen THIS WEEK! We’re so excited! You can read about why we are selling our home here. We cannot wait to be DEBT FREE!

  • We were featured in the Lancaster newspaper yesterday and are so thrilled that Tori is continuing to make waves across the state!
  • My manuscript is being edited THIS MONTH and we hope to start pitching it to publishers in November! I also have another book idea brewing, so I hope to start working on that project soon.
  • We’re headed to California this week for a quick trip to Disneyland! I was supposed to photograph a conference in SoCal and had already purchased my plane tickets when the conference was canceled…so, we decided to go to Disneyland instead!
  • At the end of the month, Brennan and I will be taking a LONG awaited trip to Nevada, Utah, and Arizona with Mission: Imperative where we will be going to most of the National Parks in the area! We cannot wait for this adventure, especially since all the details are taken care of and we paid for the trip long ago! What a great way to celebrate six years of marriage doing something we both love – traveling! ❤
  • I’m continuing to write for The Transcend Project along with members of our church. Please check it out! There’s SO much great content on there!
  • Also, I finally decided to release the live recording of the song I wrote this year (my first and only!). You can hear it here.

A few prayer requests:

  • Please continue to pray for us as we continue to navigate life without our Tori. We miss her terribly and there isn’t a day that goes by without us thinking about her constantly. We’re still doing well, but life is obviously very different without her.
  • Please pray for wisdom with decisions regarding potential offers on our home and where we will live after the house sells.
  • Please pray for favor with publishers, and that the right one will step up to help us tell Tori’s story and save lives through Newborn Screening.
  • Pray for physical healing for both Brennan and me.
  • Pray for us during this season of “waiting” for so many things – our home, future children, the book, etc.

Trials in this life serve a few purposes, but one of the most important is this: this world is NOT our home. It can never make us fully happy – only Heaven and the One who reigns there can. These difficult times won’t last forever – we just have to remember that. And so we wait on the Lord who is always faithful and good. ❤

Maintaining Normalcy…

Now that we are nearly three months post-diagnosis, we are attempting to resume a “normal life” – living just like we would if she were healthy. We want to still give her experiences that stimulate her senses and we want her to travel with us.

Before she was born, and even before she got sick, we took her out quite often. Because I was breastfeeding, all we needed were a few burp cloths and a diaper bag. Easy.

However, traveling with a child like Tori is very different now and can even be challenging (especially by yourself) due to the amount of equipment and supplies she requires, and she isn’t even on oxygen yet! 

Here is a glimpse of just some of what we have to bring with us if we are leaving the house for more than a couple of hours:

  Tori requires 20-24 oz of breastmilk a day (must be kept refrigerated or frozen). We also have to add MCT oil to the milk to help her absorb fat (related to Krabbe). 

We have to bring 3-4 feeding bags per day that we will be gone (we had to take 32 for our California trip). We have to bring her pump and two different syringes (one for venting and one for flushing her tube).

 We also have to bring her meds (which must be refrigerated), med syringes, an extra g-tube and extension, and the g-tube pads.

This is all in addition to normal baby supplies! 

I don’t say any of this to invoke pity. It is what it is, and I know that we still have it fairly easy for now.

But, I point this out to make a suggestion: if you are getting together with someone who has a medically fragile child, ask if you can travel to them instead of having them go to you. At least suggest it. It may be a relief to them!

If they are like us, we are more than willing to open our home to those who would like to visit – especially because Tori is still not loving the car. Then, we have everything handy and we don’t have to stress about packing everything and not forgetting anything.

Now that she is doing pretty well we are trying to do more outside our home with her, including relief houseparenting at MHS one weekend each month again, but we are still overwhelmed when it comes to packing all of her supplies and figuring out the logistics. It is a lot, but we are getting better with each trip.

This is our new normal, but we will continue to try to live like we used to and travel as much as possible in order to give Tori some awesome sensory experiences. We are a family and will do things as a family as long as possible.

Charleston-bound

This weekend has been planned since October. It was paid for, arranged, and anticipated. Tori and I were going to go to the retreat together, since all the ladies were so excited to meet her.

And then all of this happened.
I didn’t want to come at first. I was ready to cancel so that I could stay home with my baby girl. Since Southwest allows you to cancel without consequence, I was ready.
I kept thinking about how I would be leaving her for three full days. How we don’t know how many full days we have left with her. That alone made me want to just stay home.
But, in his wisdom, Brennan insisted that I go. He offered to take care of her and then my mom offered to stay longer to help him. 
My husband knows how weary and exhausted I am. He knows I haven’t had a break from her for more than a few hours since she was born. And he knows that, emotionally, I just need to get away so that I can be refreshed and ready to take on whatever comes our way.
It is true that we don’t know how many days we have left with her, but as I have prayed and pondered this situation, I have realized that I will never have “enough” time with her. Three days won’t make a difference if God takes her home to be with Him. I  will always want and need more time.
And so, I am on my way to Charleston, to spend the weekend in a beach house with nine other women from all over the eastern United States. By myself. With my camera, ready to capture everything I see. I haven’t used my camera much since she was born, and I have been longing to photograph something (besides her beautiful face). 
Thank you, Brennan, for “making” me go this weekend. We both know I need it. ❤️