As Far As the Eyes Can See

As the weeks pass here, I feel so discouraged.

I miss so much of our normalcy before. I miss being home with my family unit in our cozy but chaotic house. It seems like we have traded one chaos for the other and it has been breaking me down.

I came into this trip to Boston excited to see what was in store for Lily and our family. After surgery I was SO thankful to have a good outcome. Everything was going according to the plan and timeline that we were originally given.

The plan was to be discharged the first Saturday of December but the Thursday before this, Lily's oxygen tanked. I had just gotten back to our apartment when Q called me to come back because she wasn't doing well. Luckily the team here is fantastic and we figured out that she was severely dehydrated from coming off of all of her post-op medications. Once that was figured out we thought we were in the clear and things would continue to go smoothly. As the weekend passed her oxygen stayed lower than we have ever seen it.

With all of this, they decided to another cath procedure to determine if she would need a balloon inflated in her pulmonary vein. After looking, the team decided to not intervene because once a balloon was placed, it could not be deflated and could cause later issues when we were ready for next surgery.

Been praying for a glimmer of hope but uncertainty's surrounding you. Confidence at an all time low, feels like the world is right on top of you.

I have gone back again and again to this same spot as a mother. Being so grateful that she is so resilient and strong but then so frustrated that this is our life. This is it. Hospital visits, children growing up separated, the looming possibility that Lily may leave us before we ever leave her, Luca being raised partially by our family because we are all consumed with this new life in and out of hospitals and surgeries. It seems so unfair that I will forever have the question of "Why us?" in the back of my mind.

This song, "Breakthrough," came across my social media the week we got to Boston. I listened to it and we danced with Lily in her room once she was back on her feet. If you know her, you know she loves to dance and loves music. After her cath today, I just felt so defeated and home sick. I miss being with my husband and our kids. I played this song as I sat down to do school work and immediately had tears coming down my face. So I decided to do what I do best and type it out. After starting to write, the song "Eyes" shuffled next and I just continued to cry and pour out.

Nothing can change who you are, there's no denying that as far as the eyes can see, it's all part of my testimony.

God is writing my family's testimony with so much in store. It is so hard to not let the emotions get the best. To not lose control in my surroundings. I am in a constant battle of frustration, gratefulness, peace, being lost in the storm and being reminded I am meant to be in this battle. The devil truly has a way of using my emotions and surroundings to make me lose focus of what it is I'm being called to do.

Don't even know why you chose me. Don't even know why you called me.

I don't think anyone will ever receive an answer from God as to "why" we were chosen to live the lives or fight the battles we are in. What I have gotten from Jesus is true peace when I lean into Him. I have gotten a different outlook on our life, especially when I truly let God lead me and my family. I am given stories to relate to within the Bible. I can't imagine how Abraham felt laying Isaac on that altar or how Mary felt when Jesus was left in the temple and she was so far away from her child. I can't imagine the waiting Mary and Joseph went through in those 9 months or what they felt while having their testimony play out in real time.

As I continued writing, "Serenity" came on next.

I know you see the path that's in front of me. I'll sing about your love for eternity. I've nothing left to fear from my enemies because you're around.

It is so hard when life seems like it isn't going our way. I was rocking Lily tonight just letting anger well up inside, of all the things that didn't go our way. I was very humbled when I closed my eyes and heard Jesus say "but look at all the things that went My way." There was no need for intervention during her cath. The surgery has done what it was meant to do. This time apart from each other is making us appreciate the time we do have together and to truly treasure it. We are in the place we are meant to be. How blessed are we to have family members who are so invested in keeping life as stable and normal as possible for Luca. Lily is back to her chatty sassy self. Q and I will not be separated forever. I am open. I am focused on You.

I truly can't get over how music plays a part in my prayer life. It is constantly putting into words what I am feeling. These are the songs I have been praying with today.

https://youtu.be/xuer9KFbV_M?si=UJZR3NAovGHHruCz

Breakthrough - Chibike

https://youtu.be/4RoIyZyGRyU?si=i34foOc_1wB8VcLd

Eyes - OBED

https://youtu.be/Hdjo6VoZDjk?si=Nk5DV3FIb6-_1iM8

Serenity - OBED