Today was supposed to be Evan’s birthday party. He had a custom onesie. We had balloons. We had banners. A menu planned. There was going to be a photo booth. It would have been the most “extra” first birthday party ever. Because Evan is extra. And extraordinary. His first year was so hard. He experienced more than most people experience in the lifetime. He fought hard. He was a warrior.
But today is not Evan’s birthday party. Our little celebration just the three of us will have to suffice this year. And it will suffice.
We were off isolation. It was great. We were still so careful. Choosy about where we went, what time of day we went, who could get close to him. Still no one really touched him. But then we found out that our sweet Evan’s most recent blood-work showed that his little body does not have an immune system. And this isn’t the all preemie babies type of weak immune system. This is the oh-hey-it’s-a-miracle-you’re-not-deathly-ill kind of weak immune system. So it’s back to heavy isolation most likely until next summer. It’s a great thing I am not super extroverted.
We are being referred to John’s Hopkins for immunology before we start IVIG (immune replacement therapy). This treatment is a lot like chemotherapy in how it is administered. Evan will go to the infusion center every three weeks to get an IV placed which will then infuse the immunoglobulin IgG (a blood product) into his body for about 4-6 hours. We are, of course, not thrilled that this is what we will have to do, but Lord are we thankful that there is a treatment for this! As we face every little thing with Evan, I am consistently blown away by the miracle of modern medicine.
That’s our biggest news of late, but I know it’s been a while since I updated y’all on Evan’s health, so I will give you some highlights.
- The helmet is going really well! It is doing it’s job, and he is tolerating it so well now. He doesn’t even notice its there most of the time.
- Eye surgery was officially a success. He hasn’t had any issues.
- Some more genetic testing ruled out a huge list of potential diagnoses possibly bringing us a little closer to a diagnosis, but maybe not, and that’s okay.
- He passed his car seat test back in April, so he now rides like a big boy! That was such a big milestone for us.
- Breathing is seeming to improve, but his body is just asked to do so much every day. It’s going to take a while to get to a place of not needing O2, but he is making progress. He can tolerate room air trials throughout the day. He definitely still needs it at night and in the car.
- PT and ST are going great. Evan is getting closer and closer to being able to hold up his head every day. He has also tried a few more tastes of food, and we are working on being able to drink water from a sippy cup.
- We will start OT this month to help with sensory issues and fine motor skills. I am really excited for this.
- He is growing! We finally broke through to 19 lbs this week after some calorie adjusting. He’s still not on the charts for height, but he has cute little arms and legs, so I don’t care.
- We have been cleared by neurosurgery for now which is so awesome. His MRI from this week showed that the extra fluid in his brain isn’t causing pressure. Also I love seeing his scans because I think his brain is so cute.
- We still have a pericardial effusion, so he is staying on lasix. At this point the cause is most likely from whatever is going on genetically.
How We’re Doing…Really
In my last post, I wrote about John 9 where Jesus explains that these things do not happen for no reason, they happen so that His mighty works would be revealed. I fully believe that, even in my moments of hurting.
Last night, I texted some of the close friends just to rant about how tired I was and how I just was feeling defeated. It is so important to have people you can go to and be real about your feelings with no shame involved. They don’t spit religious platitudes back at me invalidating my feelings. They listen. They love. They encourage. Find your people. Find the people you can go to when you’re hurt and broken.
This week has felt like a year. I am exhausted and my body just hurts. We had two blood draws, an MRI, lots of phone calls with insurance, doctor’s offices, and Social Services, a drive to and from UVA, and a helmet fitting. Oh, and this guy is being a terrible sleeper, so I’ve been up multiple hours every night. Last night, I was just so spent. I felt like I wasn’t measuring up to the roles I have to play each day. I realize that I am not “just a mom.” On any given day, I am also a nurse, a respiratory therapist, a physical therapist, a speech therapist, an occupational therapist, a master scheduler, an insurance advocate, a social worker, a realtor (we’re looking for a house that will suit Evan’s needs), a body guard, a medical transport specialist, and the list goes on. I barely have enough left in me and the end of most days to be a good wife, daughter, or friend. It’s all enough to break a person.
And I am broken.
I would be foolish to think for one second that God is not working in this hard season. I will not for one second believe that God has forsaken us. There is too much evidence to the contrary.
We enjoyed some “normalcy” in May being out of isolation for a couple weeks. Then last weekend, we were told that it would just be that. A couple weeks. A tiny taste. A tease really. I let myself feel broken and sad about it for a day. And then God moved.
My dear friend, Melinda, released her first single “Sweeter” on Monday. I remember waiting for this single to release for so long! I kept thinking, “okay, but why do we have to wait until June?” Now I know. I needed the freshness of this song in my life at just the right moment. I needed to be reminded that He would make a way for joy and goodness in my loneliness. So to the mom who just found out she would need to stay in the house away from people until next year, God spoke these words through Melinda:
“Every moment gets sweeter by the minute whenever I’m alone with you. You take brokenness and blend grace within it. I’m so amazed by what you do.”
Ummm. Okay, God. I see what you did there. If I did not have to spend all this time in isolation with my child, I would not experience the intimacy with Christ I’ve felt amidst the deafening silence of my loneliness. And y’all, it really is sweet.
If Evan had not been born premature with medical issues, I would not have met the nurses and therapists who not only took care of us when we needed it most, but also became close friends and mentors. We would not have moved to Roanoke. We would not have joined the church family that has blessed us so dearly. Our marriage would not be as strong as it is.
If I hadn’t had to face the heart-breaking reality of almost losing my son more times than I can count, I would not have the appreciation for the Cross that I do now. God allowed His Son to die on a cross for MY sin. To reconcile my heart to his. He did this for us. I would not wish this perspective on anyone, but I am finding myself grateful for it.
I am learning that faith is not about being focused on our outcomes. We are not guaranteed anything in this life. We are not owed anything. We’re the ones with the debt! But God is faithful and good regardless of what we are facing.
This life we are leading is hard, and it is more than we expected.
More exhausting. More hard work. More heartbreaking. More frustrating.
But–It is also more joyful. More life-giving. More refining. More awe-inspiring. More of Him.
There is making in the breaking. Our feelings will often shout so loud that we can’t hear the tender whispers of Jesus beckoning us to turn to Him. But if we listen close, he is saying:
I am making a new thing. I am here. I hear your cries. I ask you to trust Me. I will take your shattered pieces and breathe new life into them. Into you.
Whatever brokenness you are facing today, know that this is not the end of your story. God is still working even when He feels far. He is making something new and beautiful. Because He loves you.