Tony is Beloved

On my walk over to the hospital this morning I felt like I was being reminded to be thankful. God is good at that. 

Last week Tony (I gave up on spelling it Toni until discharge, since he's been in the PICU he's been Tony) got his monthly echo of his heart to check for pulmonary hypertension. Usually it's one of the echo techs that performs the test, but this time it was a doctor. I'm assuming he's a cardiology resident and he was sent to do the test for practice and learning purposes, I'm not sure. While he was performing the test more than one person said "hi Tony!" from the door or stopped to chat. He noticed his popularity and said, "Wow, Tony is beloved." For some reason those words stood out and were so sweet to hear. Everyone wants their child to love and be loved more than anything. From what I've read that is the number one quality that parents bring up to the care team when making decisions on whether or not to move forward with care in NICU babies. They want to know if their child will be able to love and be loved. Tony has at least half of that equation down, and I'm pretty sure I feel the love flowing from his direction already. 

We have so much to be thankful for, but it's hard to keep that lens clear when it's constantly being stained by his suffering, people who make life harder, or the exhaustion from being here for so long. But we do have so much to be thankful for. 

This morning I ran into the resident that we became very close with in the first couple weeks of Tony's life. He said he's been following his progress in his chart this whole time, and is planning on visiting him now that I told him the PICU staff wouldn't mind at all. It was so nice to see a face from back then! It reminded me of the tear-filled conversations that I had with him in those weeks and how far we've come. I still have many tear-filled conversations, but they aren't the "will he live to see tomorrow" talks anymore. He was so kind during a time where we were at our lowest and had nothing but unknowns. He prayed for us and wrote us a note with scripture than I referenced back in one of the first updates when he left. It reminded me just how many people have been touched by Tony's life in the past nearly 6 months. People of all different cultures, religions, ages, professions. And the people that would have known him well whether he was born in November or August have been impacted by him in ways that I never could've imagined. His little life has brought me so many new relationships and made a lot of the ones I already had grow and deepen. 

He has taught me so much, mostly that I have so much more to learn. Fredy and I have had to work together in ways we never have before. It has been so difficult and so rewarding. We have had to be patient with both each other and strangers more than ever. I hope and pray that (if all goes as planned) after we aren't trach parents anymore that we will be completely different people than we entered this realm as. That we can be more empathetic, patient, kind, forgiving, and hopeful. What a blessing to start parenthood with a crash course in those areas. Tony deserves that kind of parenting. The impact that this experience has had on our faith is unexplainable. For that reason alone this will all be worth it, let alone the sweet boy we get to be amazed by each day. The love we have for Tonio has given us a deeper understanding of the gospel. Every time I'm crushed by how unfair it is that he has to fight to breathe every day of his life when he is the closest thing to innocent that you can find, I am reminded of how Jesus was fully innocent and suffered so much more all while bearing the weight of the world's sins. It doesn't take away the pain I feel watching him struggle, but it lessens the blow and puts the entire situation in perspective. I'm thankful for the skills this is giving us and the doors to realities that it has opened that we will never be able to close.

Tony has been sleepy today, to the frustration of me and his therapists, but it was nice to be able to pause and to type this out without fretting about him being upset for once. We moved rooms last night, which was quite the disaster, but because today I'm being grateful I won't get into that! Our new room has more sunlight and isn't stuck in a corner by itself like our old one. Going to try to keep this more positive spirit alive as we attempt to sprint the last leg of this marathon that will lead into what will probably feel like an entirely different race! But we can't wait (: I look most forward to us sitting on the carpet in the sun in our living room, and Fredy can't wait to see Tony watch him mow the yard. Such little goals that are actually big dreams for us! 

As always, thank you to everyone who reads these little updates or what was today more of a reflection. They help me to both organize my thoughts and keep everyone on the same page. You all have been a part of Tony's story in some way shape or form, even if it was an interaction (or many) before he was even born! Thank you for making Tony beloved. 

Poor videography, but was trying to show his head control yesterday! >

Verse from Dr. Ham back in August that I wrote down in my journal to Tony >

Also, here are some songs from the playlist I made for Tony and me, we listen to them almost every day and they have helped!

Let the Ground Rest, Chris Renzema

https://open.spotify.com/track/5MkUCTFlbb5ANwov7mng49?si=znr8l5QnSDyWJ8KfZ24zzw

Sparrows and Lilies, Pat Barrett

https://open.spotify.com/track/5MQTn8l3zaKk74LeGDrGUl?si=qF5h6I36RqOjGRuH0dilOQ

Let Your Love Flow, The Bellamy Brothers

https://open.spotify.com/track/064SVQsmWl5EF0zahmzkQk?si=atOyJj3_RTS4IsZtd1JlrA

Adonai, Chris Renzema

https://open.spotify.com/track/4mD8hFaam1xG91Od3O3X8F?si=fHTrKCdrQmSbu4CTNwPqLA

Tú Estás Aquí, Marcela Gandara

https://open.spotify.com/track/6uExMEig887UmyXoFqdyOW?si=htfloi30TJuDJOX3lV18LA

Bloom, The Paper Kites

https://open.spotify.com/track/1HMQmOWrkieKYWlFsjUP3D?si=Y_83zbvlR1q3bNGoeLkE8w