Tuesdays are always like this. In fact, Sunday at 2pm through Tuesday afternoon (sometimes wednesday), I fight tooth and nail with Satan as he tries to get a foothold in my heart. Sunday at 2 is usually when my husband leaves for the week, sometimes taking with him my Ava, sometimes my parents, even friends that have come in usually go home around then too. Everyone leaves on Sunday afternoons. Thus begins the sadness, loneliness, frustration and the road to the next weekend. All the joy of family time, laughing, holding my baby girl, being held by my hubby, the companionship of family and friends, the hope and strength of my support system drives north on 287 as I go settle back into A-4 in the NICU. Noah's worth all the pain and struggle, the loneliness and heartache, the restless heart and constant question in the back of my mind.
The nagging in my mind never quits, why Noah, why us, why hypoplastic heart, why is he still here, even. Why are these weeks dragging on and on and why are the months skipping by me like nothing. He's already 2 months old. Where is the time going? My heart and my mind go up and down, up and down until I finally just break. The whining then starts...it's ugly really. I can get truly annoying, I'm sure, especially to nick. I ask the same questions, complain about the same issues, wonder the same things, etc. Same struggle different day. The grieving never completely goes away as I slowly begin to understand just how big of a deal this all is.
I really do rejoice in ALL the accomplishments Noah has made. I rejoice in the littlest of victories and I try to not see the littlest issues as major setbacks. Sometimes it all becomes mush and the littlest thing like a blood draw seems like he is being tortured to me. A monitor going off until the nurse comes to check it can become a sharp pain in the head. An echocardiogram to check heart function can seem like a huge opening for a flood of problems to come rushing in. It all just gets tiresome and negative after awhile. So today, as I have been struggling with all of it, (yet again), I realized that surely there is a way to use all of this heartache, questioning and even grieving....
I listened to Pastor Matt's third sermon in his latest series, "When God Seems Like the Enemy". It was the perfect timing to hear the words, "God isn't fair". First of all, because I needed a slap in the face to get me out of my whining fest and second because it reminded me that Christ dying for me, for you, for Noah, etc was not fair. He didn't deserve to be crucified. I do. He didn't deserve to go through what he did, but he went through it in obedience and worship to the Father. Worship. So, does that mean, that everytime I hear my baby boy cry because he is getting his veins dug into to get a blood draw, that it is worship and that I can send up my frustration to God but in the form of worship? So each day we find ourselves still in the hospital, still in ft worth, still spread apart, that all of this enduring is worship? Please, let all of this have a purpose, Lord. If all of these long days, long weeks, hard nights, rough moments, surgeries, tests, iv's, blood draws, therapies, etc etc all be a means to worship you. May the rest of our lives, be worship. I think of all the trips we will have to ft worth, to the dr's, for surgeries, for check ups, for heart caths, for follow ups...all the struggles we will endure with having a child with HLHS, all the stuff we don't even know is coming in life in general, Lord....somehow I can face tomorrow, knowing all of this is worship. Worship makes my tears meaningful and my struggle worth it. Worship is finally, somehow, becoming more than music. I am finally learning what it means to have a heart of worship, not just a head full of "worship" songs.
It is one of the hardest things to do, leaving your baby in a hospital room as you drive back to the place you're staying. But, it is part of it right now. None of this is how I would ever want my life to look like or anyone else's for that matter, but it is where we are at. So, I will try to find ways to adapt and be thankful. I am grateful for a husband who is patient with me, who loves me at my worst and encourages me to be my best. I am thankful for him and I know that God made us a team for a reason. I am thankful for him and how he takes care of our baby girl, all these days we are apart. Wow. There will be a day when we are at home, the 4 of us and we can close the blinds, lock the doors, turn off our phones and hide away. We can soak each other up and make up for lost time. I long for that moment that I am sitting with both babies in my arms in the recliner, with a blankee and a big long nap is shared.
I can confidently say, that would be considered worship too, at this point. :) Both babies, in my arms...they are both His anyway, He just allows me the privilege to be their mommy.
Noah had a pretty good day. He received blood and that is most likely for volume and I think it ended up helping his oxygen saturation so they could turn down his oxygen some. He got an echo done and hopefully I will find out how that went, tomorrow. I am also waiting to find out how his sonogram went to look at the clot he has been having. I don't have much to update on him other than that and when I get new info I will pass along. Please just pray that his cardiac function continue to improve. Please pray that he continues to be able to be weaned off of the oxygen now. Speech therapy will be coming by to evaluate him to see about starting a bottle. They are looking at changing his formula and maybe adding some of my milk to it. He has the wound vac back on til next monday. Please pray that his incision closes completely and is healed well by then. Hopefully he will get a lot of rest.
Thanks for the love and prayers.