It has been almost one year since our journey began. At this time last year, we were blissfully unaware of what lay ahead for our family. Up until recently I wanted to go back to those days before we knew, but I don't feel that way anymore. I think I have finally accepted that this is our life. It is not the life I would have chosen, Abby has suffered too much for me to ever say that, but I accept that this is our path, our journey, our life. Now I like to think that we are blissfully aware of God's awesome power!
April 23rd is my birthday and marks one year since we took her to the ER at ACH for her seizures. April 24th marks one year since the MRI that sent us to the ICU. Those days were life changing for our family. I will never be the same person I was before then, neither will Abby. But in most ways, that is a good thing. I feel other's pain more deeply now and have a desire to help others when they are going through hard times. I am ok with receiving help from others-God is using them and will bless them for it. Bible verses, hymns, songs touch me in a way that they didn't before that day. Prayer is more important to me than it ever was before. I feel closer to Jason-the only person who can understand how I feel.
And my girls are even more precious to me than they were before. I try to soak up the moments I spend with them because I know that those moments are fleeting. Life can change in an instant. I don't want to waste my days being angry, bitter, unhappy. That doesn't mean there aren't bad days, but even on the worst days I am very aware that we could be in a very different place. We could be counting down the days of her life, we could be on chemo, we could be in ICU, we could be mourning over her.
It puts everything into perspective. I still like nice things (furniture, clothes, shoes, etc.) but it is not what I strive for anymore. That was the first lesson I learned in ICU. No matter how much money we would have had, we were still reduced to sleeping on a cot, doing laundry in a community washer/dryer, and taking showers in a public restroom. And we were still begging God to spare our child, just like all the other parents in that ICU. Another mother in a similar situation and I were talking about this-how we feel like we have a secret. All the little things that used to matter, don't matter anymore. Like how big your house is, what color to paint your bedroom, what baseball team your child is on, etc. And life is a lot better when you figure that out!
I also feel so much closer to God now and wouldn't want to go back to my relationship with Him before. There were some dark days early on but I could always feel His presence. I thought of how much it must have hurt to see his Son crucified and how much he must love me to make that sacrifice. I thought of Jesus and how He prayed in the garden to let the cup pass from Him. I prayed that many times as well but unlike Jesus, I wasn't always ready to follow God's will (and for the record I am not comparing myself to Jesus, just that those words ring true in my ears). I thought of Abraham and how he was willing to sacrifice his promised son, Isaac, without complaint. I read about him and realized how little faith and trust I had in God. I read Lamentations 3:21-24 and knew that although it felt like I might be consumed, He would not allow it. I thought of heaven and how these hurts here on Earth will be no more and I prayed that the trumpet would sound. I saw the genorosity of others and realized that God is faithful to provide "exceeding abundantly above all that we ask or think" Ephesians 3:20. I heard others prayers for Abby and saw the results of those prayers (a miracle!) and knew that 1 John 5:14 was true, "And this is the confidence that we have in Him, that, if we ask any thing according to His will, He heareth us". He was there in that MRI suite with us, in that ICU room, on the plane back from Houston, in the OR with Abby during surgery and in the chapel with us while waiting, and He remains with us today, providing hope and comfort, just like it says in Deuteronomy 31:8 "He will be with thee, He will not fail thee, neither forsake thee". I realize now that He is faithful and He is trustworthy, even when our faith waivers and we doubt His power. And His knowledge far exceeds mine and that is why I trust Him. No matter what happens to her, I trust Him. "Trust in the Lord with all thine heart; and lean not unto thine own understanding" Proverbs 3:5
We will be heading back to St. Jude for another MRI in about 2 weeks. Pray for Abby, that the tumor will not have grown and that against all odds, it will have shrunk on its own! Pray for Jason, Lyla, and me. It is a stressful time leading up to the MRI, it is hard waiting on the results, and we will need prayer to make it through. And pray that while all these landmark dates roll around, we will feel like rejoicing, not mourning!