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Processed with VSCO with a6 preset

Processed with VSCO with a6 preset

Pictures: me holding the kids while they were both having meltdowns when Ryan was out of town, Asa’s hearing test, & a happy boy 🙂

Asa is currently 3 1/2 months old. Since the last update some big things have happened. Actually, really all of this took place within 3 days in the month of October. A quick overview: We found out Asa has moderate to severe hearing loss in both ears, his skull surgery got moved up from the projected timeline and we were given a 1 week notice of the scheduled date, Ryan got let go from his job at a church (yes, you read that right), one of our cars stopped working, and we received our first check for Ryan’s song that Chris Tomlin released. This train is moving fast and I’d like to get off at the next stop please. 

The 3 hour test that told us Asa had permanent hearing loss was a rough way to start the week. When he was diagnosed with Saethre-Chotzen Syndrome (SCS), the geneticist told us that as Asa grew we would let him tell us what his needs were. I guess this hearing test was the first of those “needs” that Asa would be telling us about. A part of me knew something was off,  but overall I remained extremely optimistic about his hearing. I was in disbelief as the audiologist told me the severity of his hearing loss. She went on to mention that we’d get him fitted for hearing aids as soon as possible and that we would repeat the 3 hour test to see where the damage was located and those results would tell us which type of hearing aid he needed, and if he needed tubes placed in his ears to drain the fluid if it hadn’t cleared on it’s own. One of the hearing aid options requires surgery to implant a device on the back of his head. My baby needs hearing aids?..cool. 

I think this was so shocking because one, like I said, I was extremely optimistic going into this appointment that everything was fine. Two, I still have not found someone (neither has our hospital) with SCS that has had the rough start Asa has. As I was discussing this with the geneticist in one of our appointments, she said that usually SCS is found deep into a family’s history because it is autosomal dominant, meaning there is a 50/50 chance it is passed down with each conception. When it is a new mutation within a family, it tends to be more severe. As we left our stay at the NICU, things were supposed to be improving. It felt like we were promised that he’d have a somewhat normal life, because most people with SCS lead very normal lives. Three, it had been a while since we found out anything new about Asa. Our NICU stay was threaded with new and scary information, so I almost grew used to it. But since being home, my tolerance to hear this type of news seems to have faded. 

Skull surgery was being aimed for the first week of November, which worked out beautifully since the entire month of October is extremely busy for us with Ryan traveling so much. We got a phone call telling us that surgery was scheduled for Monday October 15 at 7:30 in the morning. It’s a 6 hour surgery that includes neuro, plastic, and gastronomy surgeons. The surgery for his skull is called Fronto Orbital Advacement with Cranial Vault Remodel (with possible distraction). Basically, the neuro surgeon will make a zig-zag cut on the top of his head from ear to ear. He will essentially create soft spots in Asa’s skull that were not present at birth. This gives his brain room to grow. The plastic surgeon will work on his forehead and do one of two things (will be determined in surgery). One option is to completely remove his forehead and the upper part of his eye socket. They will break the bone, reshape it, and put it back. The second, more likely option is the distraction process. This is what I’m dreading. They will place metal rods in the bone that stick out the top of his head and over an extended amount of time (8-12 weeks) they will remain while we turn them for about a month. Basically like how you turn a retainer to move the teeth, this will be done to his skull. The bone will stretch and new bone will grow. This has the best aesthetic outcome as it’s a slower process and it’s less likely that the bones will deform again. I have saved a picture to my phone of an infant with these distractors with her scar still healing so that I am better prepared to see my own baby after surgery. I look at this picture often. 

How else am I preparing? By holding and cuddling him as much as possible, by trying to memorize the face he has now because even though this surgery is required and will improve his overall appearance, I have grown fond of and will miss his little flat forehead. He is “Asa” to me right now, this is the only way I’ve known him and thinking about his face changing (literally, he’s getting plastic surgery) is weird. I’m letting him sleep on me as much as possible and touching/combing his head and hair like crazy because he loves it. How are we planning on getting through this? By praying time flies. 

Although the surgery is only being moved up 2 1/2 weeks, I was so overwhelmed with how soon it was happening (one week notice). This also didn’t allow me time to donate blood for Asa’s blood transfusion during surgery. I felt like that was the only thing I could physically do to prepare him and help him (besides keeping him from getting sick). They only allow people to donate no sooner than 2 weeks leading up to the surgery. Regardless, the blood bank will find a fit for him. Recovery in the hospital will be anywhere from 3-5 days but we’ve been told to expect it to be a bit longer since he’s so small. He weighs just under 10 lbs at 3 1/2 months old. I never mentioned, but he was born full term at 5.4lbs. He’s a little one. 

This brings us to the next event. Without any notice other than a general staff meeting a few days prior where the pastor said they’d be making some budget cuts and letting some people go, Ryan got laid off of his Worship Pastor position at a church here in Orange County..via a phone call. Without even a 2-week notice, no send-off, and (still) no word from the senior pastor, he was done. He has felt so devalued, disrespected, and disappointed. And honestly it’s not even about being let go, it’s the way they did it. I’ll spare further details so it doesn’t sound like I’m just bad-mouthing them (I’ll note that they have been very supportive of our family throughout our time with Asa), but it was bad. I was so impressed with how well he handled himself though. With every emotion associated with anger being completely justified and righteous, he didn’t let it get the best of him. The night he was let go, we put the kids to bed and just worshipped & prayed in our living room. Ryan sincerely prayed for the guy they hired to replace him (still acknowledges that he’s glad they gave him a job) and prayed for provision for the church. We had a lot of faith and trust that God will provide and take care of us, just not a whole lot of peace. Mainly because we are pulling from past experiences of God not leaving us at dead-ends. He’s always carried us through.

A few days before this took place, Ryan got a prophetic word about his time at this church coming to an end. This woman praying knew nothing about Ryan, nothing about the church (wasn’t from the area) and knew nothing about Ryan’s time there. She simply knew Ryan worked at a church. She was able to pray, see and communicate exactly how his time at that church had been and even see God’s perspective of the whole situation (again, I’ll spare details). We know God sees us and our situation and we know He will do something, we just have no idea what. 

2 days after being let go, Ryan received his first check for the song that he wrote that Chris Tomlin picked up titled Resurrection Power. The song was released in January and we didn’t know when we’d see any money from it. What crazy timing, that it just so happens to show up 2 days after Ryan is let go. Thank you Jesus! It is a lot less than we expected this first check to look like but it couldn’t come at a more perfect time. Especially because at the end of this month Ryan is recording a live worship album, without a label, which means we’re paying for it ourselves (we might be doing a fundraiser for it now). We already gave a good portion of our savings to get this project started and we both didn’t feel like Ryan losing his job should mean that we don’t go through with the recording. 

So, that about catches us up with the big events. October has been quite eventful and it’s not even half-way over. 

Something I’ve been navigating is that when I’m out in public with just Koa (Asa stays home other than going to his doctor appointments), I want people to know that I also have Asa at home. That them seeing me with a toddler isn’t the whole picture. Not so that they would know we are going through something tough, but just that they would know I’m a mom of 2, not one. That I have a baby that should be attached at my hip right now, but isn’t. & the rare occasions we do take Asa in public (on short walks or to appointments), I still have a hard time deciding in the moment how I’ll explain Asa’s situation to strangers. Sometimes I share too much and sometimes I fit it all into one tiny sentence. Sometimes I pretend nothing is wrong at all and I just tell them how old he is and acknowledge, yes, he’s tiny for his age.

We’ve only had a handful of our friends and family over in attempts of trying not to expose Asa to too many people. One of our favorite family’s came over and they brought their 3 kids. One of them being a 5 year old girl named Korah. Korah is already has an incredibly sweet spirit and is so in tune with other peoples emotions. However, I think it was just out of her innocence and naivety that she marked me with an experience that I’ll remember forever. She walked into the bedroom where I was tending to Asa. She took a good, long look around at all of his equipment, hearing the rhythm of his machines and seeing the blinking monitors. Then her eyes locked onto Asa and she gasped. While this was all happening I was already trying to come up with a way to explain all of this equipment to her. Once she gasped, she said, “Ohhhh he’s soooo beautiful” with a big smile on her face, looking right at me. I will remember this forever. It was as if she was intentionally saying, “Good job mama, you made a beautiful baby”. Her child-likeness in that moment taught me more than I could have learned from reading an entire book on the subject.

Also, one time a few toddlers were asking Ryan why Asa had something on his face. It was his nasal cannula that hooked up to his portable oxygen tank. I paused, again not knowing how much to divulge and had not yet answered that question to kids before (Koa isn’t talking yet so he’s not asking us any questions, praise God). Without skipping a beat, Ryan told them that it gave Asa superpowers. I loved his response and how natural it was for him to come up with something like that. The little girls giggled and his answer seemed to suffice.

A few weeks ago, I attended a small women’s conference with a male speaker.. I know, funny! He’s a friend of ours and has such deep wisdom regarding navigating the heart and life with God. Nicholas’ message was captivating, funny, and revelatory, but I was honestly just enjoying being out of the house by myself and sitting alone listening to God-stories. I wasn’t particularly moved throughout the message because I didn’t feel like it was relevant to me. But at the end, he invited each of us to open our hands and envision our hearts. He told us to ask ourselves what disappointment we were holding onto that we hadn’t yet brought to God. In that moment, I saw Asa. My first impression was how shocked I felt that I was holding Asa, because I hadn’t used the word ‘disappointment’ to describe our experience with him thus far. The next impression was how shocked I was at how true that felt. I grabbed my face and cried, hard. The silent, hard cry. The one you never want to do in public haha. 

I was ashamed that when I was told to imagine holding my disappointment, that I saw myself holding my baby boy. As his mother I’m supposed to be the one who loves him the most, to love him unconditionally, yet here I was realizing that he was my biggest disappointment in this season. I hadn’t thought much further than that. I just let it the gravity of it sink in, still surprised. The message and worship ended and the lights turned on. I was hoping my face had dried. I had one friend at the conference, Erin (who happens to be 5-year-old Korah’s mom). She came and sat by me and then we walked to our cars. She told me she had prayed and seen a picture for me. It was of the garden of my heart. Within my garden, something had planted when I became pregnant. It was a beautiful woody vine plant called bougainvillea that represented my expectation of who Asa was going to be. It grew and grew as the months continued in my pregnancy. However, now, the plant was visibly dying, but it was still planted. She told me in the vision she saw God uproot the bougainvillea and in it’s place He was planting a vine-y plant that had flowers so beautiful that it was a main spectacle in the garden. She said most notably, the fragrance of this new plant was breathtaking and something so unique that it could be smelled from anywhere in the garden.

This is such a beautiful picture to me. Like any pregnant woman, we can’t help but imagine our future with the new little addition we are growing. The newborn cuddles and bonding all snug in bed, the new and exciting milestones that baby will reach, the way baby will fit perfectly into our lives, making us that much more complete as a family. All those day-dreams and expectations grew that first plant. But the moment Asa was born, all of those glorious newborn cuddles, anticipated milestones, and the idea of a new perfect addition to our family were threatened. Throughout pregnancy I had every reason to expect a perfectly healthy baby boy. Nothing about my labs, the ultrasounds, his growth progress, or my pregnancy told us otherwise. The moment Asa was born that plant of his expectation began to die. Through trauma, tears, and the unknown, it began to wither. 

But to know that God’s intention is to uproot it completely instead of me having to look at it all the time as a reminder of what could have been (which I still do), is beyond me. And to plant something beautiful and thriving in it’s place of who Asa actually is, not the fantasy I created. Asa is teaching us so much about love and God. We are becoming better people because of his life. Along with Asa’s life being a miracle, God is doing a miracle within my heart. Isn’t that what God does though? He works all things for our good. Nothing is too small to him. He is so concerned with our well-being that he even cares about the things we thought we were going to have that we didn’t get, and he gives us something better instead. 

Anyways, if you think of it, please pray for Asa’s surgery. It’s happening first thing in the morning on this coming Monday. & as always, thanks for following along.