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You guys.

Although this has been the most challenging, earth shattering, out of nowhere, etc, etc, etc, week of my life thus far, there is one thing I truly am aware of.

I am loved.

This really goes without saying. I know I am the beloved daughter of the King and am loved more than I even know. However, I have never seen, felt, touched, or experienced so much love from friends, family, co-workers, and even strangers ever in my life.

I have gotten NUMEROUS phone calls (even personal phone calls from physicians/providers), letters, flowers, hugs, tears, prayers, close conversations, etc. since last Wednesday.

Wow... last Wednesday. I didn't even realize that today marks 1 week of knowing. Knowing that our lives have been and will be drastically different than we thought.

It has been such a weight and burden, but so much good has come from it too. Don't get me wrong. One night I was so devastated and almost.... claustrophobic? that I somewhat had a mental conniption fit. It was too overwhelming. Too much to handle. Too lonely.

But back to the good...

My faith in the Lord has... exponentially increased to say the least. Praying, reading, meditating, crying out, weeping, rejoicing, memorizing... all things. If anyone has any scripture that they have held close to their heart during times of trouble, I would love to know it. I am trying to read and memorize when I come across something that I need to have written on my heart in order to get through this. But I can only get through so much, so I would love a cliff notes edition of "these verses really empower, strengthen, get you through, trust in the Lord, etc."

People have never been nearer. Although I can go to work to a hospital full of people and still feel so alone, the people who know what is going on have really rallied around our family. I can not thank all of you enough. I feel so loved and blessed to have all of you. You will never know how much I love and appreciate every one of you.

It has brought our family unit closer. We are mirroring what the Lord wants for our family. We are trust and relying on him and loving each other in the process. It is so beautiful and refreshing.

Although my life has been filled with phone calls, waiting on hold, tears of sorrow, never ending kleenex, stress, and mourning for the last week, there is always good. And best of all, the Lord is who he is, so who are we to question him? We are but humble servants sent here to love, serve him, and do His will. I pray that I keep that in my line of sight as we move treacherously forward.

Day 3

Well since Wednesday, there is one thing I have learned - day 2 is the hardest. I am not really sure why either. The day you find out horrible news it is almost like you are so overwhelmed that you are numb. You just see the facts. You don't internalize them yet. Then day 2 comes along. You would think sleep would help. You would think, oh all I need to do is get some rest and things will look up. No. So far that is not the case. Day 2 has been the hardest. Day 2 is when the reality of life crashes upon you like the waves of a tsunami - it has no mercy. Everything and everyone is destroyed in the wake. All of the ifs and thens creep in and the grief is almost overwhelming. I have cried and cried. I have wept and wept some more. The funny thing is, I cannot even describe to you what emotion I am feeling. Is it sadness? Is it loss? Is it grief? Is it anger? Honestly, I don't think any of those words expresses how I feel. I am still trying to put a name to it exactly. Maybe one day.

Today my husband left to go out of town for work. I strangely feel more alone than ever. I guess when the only person who knows what you are going through leaves, it is quite lonely. Deliver me, oh God from this loneliness. For I know you are with me (I have also come to the realization that I have GOT to start memorizing scripture for this stuff. I cannot go through this without my compass, you know?).

I did make it to church today, which was good. At the last minute, one of the elders who is aware of our situation came and asked me if I wanted to be prayed over. I want to hold onto this new information so tightly, to the point that it is against my chest and no one can see. I did want the prayers though, so I said I didn't care. It was such a surreal moment. Sitting in my chair, alone, while someone from the stage spoke about my baby, my sweet Luke, and how my sweet baby is sick. All I could do was weep. Why was he talking like that about my baby? How could it be me that he was talking about? But nonetheless, I am the guilty party. I walked onto the stage without looking at anyone or anything. I just wept. And wept. The elders laid hands on me while the pastor prayed over me and my baby. I don't even know what he said. I just wept. The only thing else I noticed was that I was not the only one weeping. In fact, there were several people that I heard weeping also. At least I was not alone.

I am also exhausted. To the point that I could barely stay awake during church and I fell asleep sitting at the lunch table at my parents' house. I need to go to bed, but it is so hard to voluntarily do so. Maybe tonight I will actually rest. The whole house is a wreck because we have been so overwhelmed that we have not done the best at picking up after ourselves. But I don't care right now. I just want to sleep. Maybe anyways...

I still feel solid in the Lord. I know it is Him who ordained this and Him who is in control of it all. I know He does not give us more than we can handle (I need to memorize that one too). So I am putting every egg I own in His basket. It is amazing how when something like this happens, we so easily will give up our eggs. We remember, oh yeah, sorry God, these are not our eggs anyways... oops my bad. I think it is a great reminder for sure. It is just a very shocking reminder indeed.

Tomorrow I am going to call the Tuberous Sclerosis Complex Clinic at the Children's Hospital here. I really hope we get to meet with them soon. I would love to chat with them this week. I am also needing to schedule more appointments, because we are wanting to re-evaluate our care team. The medical system is so hard to navigate through. How does one choose a doctor? Most of the time I feel like proximity to home is the biggest factor in how one chooses a medical provider. In this case, that is definitely not even a factor. We need people who are experienced in how to handle this situation. Someone who will coordinate all the care we are going to need. Someone who will take care of my Luke as I would take care of him. A diamond in the rough. I am praying for that provider.

Bed is calling once again. Just some thoughts from day 3. 

Words

Words.

So many, but at times so few.

Or no word at all.

Just blank. Staring. Empty.


Words have the power to tear down and to build up. They have the power to bring life and to sentence death. They have a way of ripping our lives apart when we least expect it as well as heap blessing upon blessing and comfort in a way nothing else can.

Words.


I am not sure how to explain it, but I have so many words right now I could word vomit all over this empty document. I also have no words at all. It is kind of a weird feeling. I have so much to say yet nothing to say at all. I am so weary and so tired, but yet sleep just doesn't seem fitting. It seems like a waste, but I know it is needed. At this time. At this time when I should be sleeping while I can, because I don't know what the future brings. But I still just can't. And I guess that is just how it is going to be for right now.


On Wednesday we received the devastating news that our precious baby Luke has tumors growing inside of his heart. Not cancerous tumors. Tumors that will hopefully shrink. But tumors none the less. Tumors that could potentially cause my sweet baby to suffer. Potentially have open heart surgery. We were to go to a cardiologist to find out more. So we went.

On Friday we saw a cardiologist who, at the top of his career, has only experienced these tumors 3 other times. He tells us the good news that most likely our baby will have a normal functioning heart that will not require surgery and that he will go home with us from the hospital after birth. He said I would be able to deliver him as I wish and that I would not need a c-section. He gave us great news from a heart standpoint. We could not be happier about those things.

The bad news is our sweet unborn child will most likely have a very rare condition called Tuberous Sclerosis. We don't know much about his disease yet. We are trying not to gain too much of our foundational knowledge off of the internet, since it is so hard to find good sources of information. I made the unfortunate mistake of reading mommy blogs about children with the disease this morning. It was absolutely heartbreaking. And now I cannot unlearn the things I read. I do not want fear and worry to take hold in my heart.

I want to be filled with the love and peace of Christ. I want to trust in His word and in His truths. I want to believe that God formed Luke's inward parts, that He knitted him together in my womb, and I praise God that Luke is fearfully and wonderfully made (Psalm 139:13-14).

I also pray, as Jesus prayed on the Mount of Olives, "Father, if you are willing, remove this cup from me. Nevertheless, not my will, but yours, be done." (Luke 22:42)

I am comforted in these words. I am comforted by scripture. I am comforted by knowing that I have the God of the universe to rely on. I cannot imagine having to bear this burden without Him. I just could not do it.

Sleep is trying to overtake me so I will stop here. I will stop here knowing I have so much more I want to say, yet knowing I have no words to actually say it.

What a crazy week it has been indeed.