How has it already been 6 months? It also feels like forever.
"It's one thing to know that God is able and another to know if He is willing...Contentment with the latter is the test for many...We know that He can heal, but if He doesn't, will you still worship? We know He can bless in a diversity of ways, but when He picks the blessing that hurts instead, will you still love Him?"
I've been wanting to write an update for a while now, but it felt daunting. Today (10/7) marks 6 months without being able to hold Tony in anything but our hearts and memories, so it seemed like a good day to let everyone who went on our journey with us know how and what we've been doing. I always say I don't love to share everything with everyone unless I'm able to follow up because it's not fair to only tell part of the story. In short, this summer consisted of lots of God, family, friends, therapy, and trying to honor Tony. Oh, and a lot of house projects.
God: What a better way to make you question everything you thought you knew about God and how He works than to lose a baby. Tony's life and death has taken us on the roller coaster of a lifetime in every way, but especially in regards to faith. Every day brings a new question, a new challenge. We can't brush off questions that we would normally save for another time. The things you would hope to never actually have to work out have to be addressed in order to go on. When a being as innocent as Tony is whisked away to be with Jesus, you can only wonder why. And where he actually is. And what it's like there. And what or Who it takes to get there. And what do I do with my time left here when all that seems to matter is getting there too. One day it will feel like a blessing to get to witness the goodness that is being worked out through his story, and another it will all feel "utterly meaningless! Everything is meaningless. What do people gain from all their labors at which they toil under the sun?" (Ecclesiastes 1:2) Thankfully, we have come to the conclusion that it's better to be asking those questions than not. And thankfully, the Bible is full of them and really important people who also asked hard questions, but in the end trusted in the Lord's will on their life no matter the answer. Like Jesus, who asked, "Father, if You are willing, remove this cup from me. Nevertheless, not my will, but Yours be done." If Jesus was able ask God to keep Him from the cross while accepting a yes or a no for an answer, I think we can bring anything to the throne with the same posture. I included my devotional from a couple of days ago above because it summed things up so perfectly. "Your will be done" were the words I prayed on my knees in Tony's room that morning as they were coding him behind me. Knowing that He could heal him...but would He choose to? The answer was, "not physically." We have no choice but to accept His answer, but that doesn't make it simple. Because of my questioning for the past year, I've received so much truth in return. Sometimes it's almost too much to handle. Overall it's become abundantly clear that we are to live out our days loving our God, each other, and the people around us well, and that not much else matters. In the end, He's our only Hope. We can't cling to anything here, which hurts, but it's a freeing truth to accept. Thanks to everyone reading this who has helped me wrestle with God the past year, I hope that you've also gained some truth and that we will continue to grow together.
Family: Louetta Dorsay has helped fill our empty arms and patched up our hearts with each little scrunchy smile. I would've never planned her birth to come 2 weeks before Tony's death, that would've sounded insanely difficult for all parties involved, but as usual my plan isn't what is best or what seems to ever actually happen these days. It has been the biggest blessing having Nick, Della, and Lou just across town. Mom and I have gotten to babysit together, which has been a super sweet time. June brought a sweet little baby Enzo to Alex and Eli, making him our first nephew! Him and the girls have brought so much happiness, we're so thankful for the time we've gotten with them the past few months. Getting to see and catch up with all of our family that we weren't able to see much or at all for almost a year has been great in general 💕 We don't know what we would've done without family surrounding us in love!
Golfin' First time holding Enzo!
More golfin' Lou lookin' like Tony
4th of July
Lou reminding me of Tony again! First Fridays in Greencastle(:
Feeding Lou the peas I bought for Tony, he was so close to trying them! More walks
Helpers with my brick edging project, Lipse thought I dug her a bed
Holy Graffiti night at the Isaiah 117 House. Writing prayers and blessings on the studs for all of the staff, volunteers, and families that walk through the doors there. It will be a temporary home for children being taken out of their own homes while they are waiting on foster care placement in Putnam and surrounding counties. So thankful to be able to be a part of this project again.
Silly
South Bend adventures Cant wait to see this lil babe this weekend!
Farmer's Market celebrities!
Friends: We've seen old friends, met new friends, and everything in between. Back yard dinners and trips to Tennessee and South Carolina. I'm so thankful for the ways that Tony's life has led us to get back in contact with people we haven't been in contact with for years and has deepened some friendships with people who walked through the fire with us. We've learned that being friends with people who have lost a baby is hard, for many reasons. We're some people's walking worst nightmare, understandably. We make most people think about things no one wants to think about just by existing. I hope that through this we are able to make it easier on people if they ever have another friend who has a loss like us. 9 times out of 10 people want to talk about their baby, they want to say their name and tell people about them. Just like people love talking about their living kids. Each family is different, but in our case we are so grateful to have spent so much time with friends willing to go through the mess with us these first 6 months. Also grateful for our work friends! I went back in September to the surgery department in Greencastle and it's been so nice to have some more routine and good times with people I missed a lot.
Not pictured: tons of friends that I see all the time but I'm terrible at taking pictures with
Therapy and Trying to Honor Tony: Because we had such a hard time getting counseling scheduled with Riley grief services, I stumbled upon Emma's Footprints. They are an amazing organization that provides grief coaching among other resources for families grieving the loss of a pregnancy or infant. The grief coaching has proven to be extremely helpful in our healing. It has opened up a lot of very painful doors, but they needed to be opened. Every person that came into Tony's room that day warned us of how detrimental this can be on a marriage, and it's very apparent they weren't exaggerating. We were actually selected to attend a "grief retreat" in November put on by Emma's where we focus on our marriage and meet 5 other couples who also have recent losses. We're looking forward to that and to supporting Emma's in the future. I plan on organizing a walk in April to remember Tony and to help raise funds for more families like us that come to Emma's broken and needing help navigating all of this. Other than the walk, we've been trying to "parent Tony," as our therapist would say, in different ways often. There is a lot of "mom guilt" that sticks around even though Tony isn't here to take care of, so doing things in honor of him helps.
We've been writing to him, like I was doing in his journal when he was alive. I found a perfect little urn for him that sits next to a memory box that Indiana Donor sent us, now filled with important keepsakes. I got my locket made with a "T" for Tony that I wear every day. Our favorite nurses from the NICU pitched in and bought us a bear that is the exact same weight that Tony was when he passed, we love him! I even put one of Tony's shirts on him. And they also paid for us to have his outfits and receiving blankets made into a quilt that couldn't be more perfect. Thanks to everyone that donated to the Ronald McDonald House, we got to hang a leaf with his name on it in the lobby there (thank you again, that place is so needed!). They had me join a zoom call with some other parents to give advice on how they can better serve families in the future too, that was really productive. In June we walked for Tony at the Riley PICU walk. I also got invited to hang a leaf in his name at the Milk Bank during their bereavement ceremony. It was incredible seeing so many moms who had donated or were still donating milk, even after their babies had passed away. The picture of the poem below came from that day, and I learned that Tony's milk provided 6,705 feedings for little tinies like he was when he was born. That was something like 5 five-gallon buckets of milk!
A crazy coincidence- the dad of one of Tony's nurses works with my friend Leslie, and he was so kind to dig up 8 gladiolus bulbs for her to give to me representing his 8 months of life and also for the 8th month of August. Gladys are August's flower too! I'm getting lunch with that nurse tomorrow and I've gotten to meet up with a couple of other caregivers too. One being the lactation nurse that came to Tony's room the day he died who had also had a loss. I'm meeting with her again in November. After hearing at the the Milk Bank ceremony that they should be receiving bereavement kits to give to moms like me on the day their baby passes, I contacted her and verified that those were somehow not making it to the lactation office. My theory is that they were sitting in the bereavement office not being used. After we did some digging, they now have them stocked in both English and Spanish! For Tony's birthday we posted on Facebook sharing his story on our pages, but I also shared our story in 5 different groups that have helped me since the beginning of our journey. The feedback was awesome. His gladiolus flowers also bloomed for the first time that day!
I reached out to multiple people about helping to improve processes at Riley and I was growing defeated. The doctor that helped us the most our entire stay reached out to the head of patient support, Susan, and I finally heard from her August 5th. Looking back I'm glad I had a few months to process things before speaking with her. She put me on the NICU advisory council, which allowed me to sit in on their quarterly improvement meeting. That was great, and they have already taken a couple of my suggestions and made changes. I've also had two lengthy zoom calls with Susan. The first she wanted to hear about our experience of having a very long stay as a mother who is also a nurse. The second she wanted to talk about neonatal resuscitation in regards to when resuscitation is appropriate, when those conversations should be had, how much information to give and when on severity of prognosis, etc. She took that information to a physician conference last month where she was going to be able to offer a parent perspective. I'm supposed to be hearing from her in the near future about a study being done by a Riley doctor that she thinks I could help out with as well.
For my birthday I ordered a painting inspired by the story written by J.R.R. Tolkien which I referenced in my last post, "Leaf by Niggle," that we will hang in the living room eventually. I want to either frame a picture of Tony or have a big painting done of him to go next to it, as most of the pictures of him don't blow up clearly or unfortunately have a lot of hospital stuff in the background. The artist, who was a survivor of 9/11 and knew Tim Keller, was inspired by Tim's use of the story to help him get through the aftermath of that terrible time. He painted a tree, put it in a museum in Shanghai for many years, and recently went back to find that the tree was complete because with time the water marks revealed themselves, just like the story.
In addition to that I've made keychains to keep him with us wherever we go. Planted more flowers that were given to us to remember him by and did the same with feeding the hummingbirds all summer. I've also been in contact with two other loss moms that I've known since shortly after Tony was born. All similar situations, extreme preterm birth that led to trachs. One mom thought she was in the clear, she had her baby Ethan home for a couple of months before he came down with a stomach virus. She took him to the hospital on a Friday and she was having to make the decision to let him go by the next Tuesday. I'm so glad that we were still in contact from when we were both still in the hospital so that we can walk through this together. Now Ethan and Tony are having an eternal play date trach free, which is so sad and so wonderful at the same time. The last picture is kind of a stay-tuned. Mom and I decided we would include Tony in Christmas every year by doing a "Tony's chocolate train" advent calendar using the new Tony's chocolates. We're very excited to paint it and spread his joy every day in December. Even with all of this, it still doesn't feel like we've done enough.
I'll spare everyone the details of our endless house projects that we had to catch up on, just know that it's a good thing we were already in therapy!
Hope this caught everyone up and gives some hope that life can be lived even after a tragedy like ours. Sending lots of love and continued thanks for supporting us through it all 💟
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Baby Ethan 💙
And some Tony smiles(:
End the call, Tony 😄
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