one whole year without our Tone Tone
Last year on this evening of April 6th I got back later than usual from weekly trip doing laundry and chores at home. Fredy spent a really nice day with Tony and had already done a lot of his bedtime routine when I came walking through the door. I was so happy to see our favorite night nurse, Hope, sitting outside of his room. We always felt better when she was there. I helped Fredy finish up, fed Tony, and attempted to read him his bedtime story. He was kind of fussy if I recall right, so we didn't get through it before I tried putting him to sleep. I remember I got him to sleep on me in the chair, but when I laid him down in his crib, he peeped his little eyes open at us (which was not abnormal and was adorable but frustrating as any parent knows). It was late, we were exhausted as we always were, but we stood there with him until we could get him back to sleep again. As soon as he was asleep we told him we loved him and tip toed out into the hall. We paused to talk with Hope for a moment, thanking her for taking care of him for us. She reassured us that we could rest easy and told us to get to bed. We had just began to walk down the hall when his apnea alarm started going off. I honestly don't remember it ever happening prior to that instance, especially while he was lying still asleep. It was impossible for it to alarm apnea (meaning he wasn't breathing) without his vent alarming too. His vent made him breathe unless there was a big issue. The apnea alarm would come from his cardiac leads stuck to his chest, so the only reason it should've alarmed is if one had come loose, which shouldn't have been the case since he hadn't moved! We immediately turned around thinking that he had startled awake and started to begrudgingly walk back to put him back to sleep, but Hope told us to wait while she peeked in to check on him. He was asleep, to everyone's relief, and she waived us away again. We turned and headed down the hall, happy to get some rest. Fredy, Hope, and I firmly believe that somehow that was some kind of sign. I like to think of it as a goodbye, but I wonder if it was a warning. A prediction of what was truly to come the next morning at 6am when we would get the call from Hope letting us know that he truly had stopped breathing and they couldn't get him to start again.
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It's not lost on me that Hope was his nurse that night. I know there was nothing that could have been done differently than what she had to have done to save him. She had worked there much longer than most of the staff and specialized in trach vent babies. She loved what she did and truly loved Tony. So we at least don't have to dwell on the what ifs of that part. And it wasn't until the fall when I was asked to speak to a group of moms who meet once a month, called MomCo, that it truly dawned on me how fitting her name was too. You wouldn't think so, as she was the one who was there when all of our hope for Tony living was taken away forever. The MomCo leaders told me that the theme for this year's worth of meetings is literally "wild hope." It's pretty wild to think that we could find hope through this entire tragedy, but we did and continue to do so. It's not earthly hope, like I thought that I needed to have when Tony was born. One nurse even said to me as I was reeling about how bad his condition was when he was only 2 months old, "Well, I think every mom should have hope for their baby." That broke me, as I felt so guilty for not believing wholeheartedly that he would make it or if he did that he would have any kind of quality of life. As if my hope for him could will him to live or get better. I tried to find it, but every time I would let myself hope, we would be crushed by another defeat. It led me to study what hope truly means in the midst of all that chaos. The definition is, "a feeling of expectation and desire for a certain thing to happen." After a few months of trying to maintain some since of expectation that Tony would be okay I was as low as I could go. It wasn't working. I knew that the Bible talked about hope a lot, so I thought that what that nurse said had to be true. But when I really looked at the verses about hope, I realized that we aren't necessarily called to hope for things on this earth, but for eternal things. Romans 5:2-4 says, "Through him (Jesus) we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope." Once I realized this, I understood that I didn't have to force myself to hope in anything that my worldly desires could provide. To be honest, I realized I shouldn't. Not even in the long life of our son. I decided that I would think of it as lower case hope and upper case Hope. I could Hope in the fact that no matter what happened, the Lord would use it for good. Romans 8:28 says, "And we know that for those who love God all things work together for good, for those who are called according to his purpose." That's a promise. That's something we can and have continued to Hope in the last year. Thankfully we haven't had to wait for eternity to see that promise coming true time and time again since Tony went to be with the One who promised it. The invitation to speak at MomCo is a great example. Only God could put me, a mom who at the time lost her first and only son 6 months prior, in front of a room full of mothers and bring something positive from it. I'm their worst nightmare! And I had never even attended before, though I knew quite a few people who did. But because I have Hope that Jesus will return and make all things new again one day if we accept Him in our hearts, that He already has Tony in His arms, and that He is already bringing beautiful things out of death in this lifetime, I was able to tell them a story with a happy ending. I'll attach pictures of a devotional that I read to them below. I think Jackie Hill Perry does a great job of summing up what I'm trying to say so I encourage you to read it. I love that she quotes 1 Cor 15:18-19, "If in Christ we have hope in this life only, we are of all people most to be pitied." So if I consider myself a believer of the resurrection of Christ, having hope only in the outcomes of my time on this earth is even more sad than if I did that not knowing the Truth that he's defeated death! So I told them our story, I told them about the Hope that we have, and I tried to give them some tips on how to speak to other moms who have lost a child. When I sat back down at the table of 6 other moms I was placed at, one was in tears. It took a while, but eventually she told us that she had recently lost a baby as well. She said she couldn't believe it when I mentioned Tony's birthday, August 1st, as her daughter had been born August 1st as well. It was such a terribly sweet connection. That evening I spoke with many other mothers who lost babies, some 30 years prior. That's not something they often get to speak about all these years later, and some never even got the chance at the time that their loss occurred. It was beautiful.
So, that's just one example of something that Tony was able to do since my last update. The week after I went to a worship concert at Gainbridge Fieldhouse with a friend and her sisters. I don't usually go to big worship concerts, but for some reason I decided I wanted to. When we walked in there was a family in front of us with a little girl that had the cutest curly hair, so cute that I mentioned it to my friend. Once we sat down in our seats we realized that somehow that same family was sitting right next to us. I looked it up, and Gainbridge houses some 18,000 people for concerts like that, and it was packed. That was odd enough and we kind of both felt there might be a reason. At intermission there was a speaker explaining how the artists partner with Food for the Hungry, which is a mission organization that goes into impoverished areas and provides the resources necessary to help the community flourish and sustain themselves, and then they move on to another area. This is very common at concerts like this, and at the end of the explanation of what the organization does they ask everyone in the crowd to sponsor a child if they feel called. I'm honestly not a fan of how they ask you to do this under pressure, and when I went to one of these 10 years ago the only way to decide was to raise your hand and someone would bring you a packet with a child's name, and then you were expected to sign up. They offered it this way again, and being the skeptic I am I thought that I would go home and research the organization first before signing up for anything. I was intrigued, though, they seemed to do amazing work and they mentioned sponsoring a child for every child you have. I thought that would be neat to do in Tony's memory. Up on the big screen there was a QR code and I thought, "oh cool this will take me to the website so I can look into it at home." So I scan the QR code with my phone, and instantly a little boy's picture from Peru pops up. And his name is Toni. I felt like I had the wind knocked out of me and I couldn't hold back my tears so my friend notices and I show her and then everyone was shocked and crying and of course I decided to sponsor him on the spot because how could I not!? So since then we've gotten to write to him and send him some little things and tell him about how we think God had to have brought us together. I thought that was the only crazy thing that was going to happen that night, but not long after that my friend's sisters asked me to ask the older gentleman in the family next to us to take our picture. He was basically falling asleep so I felt bad asking, but once I did he was very willing and then began asking us where we were from, what we do, etc. Turns out, he and his family are ALSO FROM GREENCASTLE. So that was weird. But then he went into his family's story and how he's helping to raise his grandkids. It was an emotional story and he even apologized because he thought he had said too much. He asked if I had kids and I explained our situation. He said he was so sorry and I said something like "thank you, but it's okay, Tony was such a blessing and still is." He instantly grinned a very big grin and said, "huh, my name is Tony." I about fell out of my chair and my friend said, "what did he just say!?" And so then we were all shocked and crying again and I told him about what had just happened with Toni from Peru too. It was beautiful!
That was all just in October. In November we took two trips. The first we drove 8 hours to Clymer, NY. We were asked to join 4 other loss couples at a grief retreat put on by the same organization that provided us couples grief coaching over the summer months that changed the way we look at grief and marriage, Emma's Footprints. We happily accepted, and we're so glad we did. It was such a sweet trip for us, getting to kind of summarize what we had learned through the therapy, meet other couples who understood, learn from them, and hopefully teach them something too. We didn't think we'd ever get to meet the creators of Emma's Footprints (Emma's parents) or the therapist that helped us so much (Pam) in person! We're so grateful for them, and in honor of it being the year anniversary of Tony's passing, we'd love to give back to them. I'll attach the link to their page below in case anyone wants to send them a donation in Tony's name so that more families like ours can feel supported in the face of such a terrible tragedy.
Next we went to visit our friends in Phoenix that we hadn't seen for a long time. I even got the chance to see some of the girls that a friend and I began mentoring when they were only in 5th grade. Somehow they are now 17 years old! It was so sweet to see them and hear about their lives, but it was also very sad to hear that one of them had recently suffered a miscarriage. I was able to relate to her on a level that we hadn't been able to before because of the huge age difference. Unfortunately another friend of mine there had also recently suffered a loss, but again we were able to process our losses together and talk about the Hope that we still have. It was beautiful. The rest of that trip was full of catching up, filling them in on Tony's story, and meeting tons of babies who had been born in the last couple years, which was just awesome to have our hearts and our arms filled by that.
We were understandably not as excited about the holidays without Tony being here to celebrate them with us, but they weren't as hard as we expected. Once Christmas was in full swing we got in the spirit, and I had the idea of making an advent calendar full of Tony's Chocoloney chocolates so that every year Tony could be included in Christmas all December long. After searching all over the internet, mom and I found one that is a train! It was perfect, "Tony's Chocolate Train." So she got that for us, we went to Hobby Lobby to get everything to make it perfect, and we spent all of December working on it. And I think it turned out perfect(:
We were surrounded by family throughout the holiday season, and on the morning of Christmas Eve we got the most special gift. We found out that we are expecting Tony's little sibling August 29th this year! So that made the sting that week a little less.
There are a few more things that Tony's been a part of recently. The Isaiah 117 House is almost ready to open their doors here in Putnam County, which I'll post a link to a video about that below as well. But there is a program through that called "Bin Buddies" where you can adopt a bin of clothing for a certain age range and indefinitely keep it filled with clothes as needed. So I decided to adopt the bin for baby boys 6-9months old, which let me (plus mom and Della) buy lots of outfits that would have fit Tony at the time that he passed. And we will hopefully forever get to do that in his memory. I don't get to dress him anymore, but buying the clothes that I would love to have bought him heals a little part of my heart! And it allows the baby boys that age coming into that house on a very terrible day to leave with brand new outfits, making it a little bit easier on the foster parents that they will be going to stay with. Again, beautiful. (Also, if you want to hear more about the I117 House please let me know!)
I got an email from Indiana Donor Network recently letting us know that Tony's heart valves were healthy enough for transplantation and that his pulmonary heart valve was sent to a medical facility in Illinois. There hasn't been any recipient information provided yet, but just knowing that they are able to be used is so amazing! We can contact them again in the future to ask if any more info has been given. Beautiful(:
I was also contacted by 3 NICU nurses letting me know that they honored Tony at their NICU memorial service in February. I remember hearing about that service being held when we were in the hospital still and feeling so sorry for the parents. So it was really sweet that they all reached out, but I obviously hate seeing his name on his candle too. I'm just thankful that they are still remembering him and talking about him there! And it's a reminder that we're not even close to being the only ones who went through something like this in the last year. I've also continued to be a part of the quarterly NICU Nest parent advisory board meetings. It's not the level of involvement that I was hoping to have there at this point, but Tony is still making a difference even over zoom! There was a book that they would have in every NICU room when you got admitted called, "You are My Sunshine." We got two copies, one in the Maternity Tower and one when we got moved to the Simon Family Tower. The book tells the parent reading it to respond to their baby's cry, talk to them when they coo, etc. I never truly heard Tony cry, it was only after months that he was able to make any sound around his trach. He definitely never cooed. The NICU Nest leaders give us surveys asking us how we would improve the patient experience there. My responses are not short-winded (surprise). On one I talked about how reading that book was basically a slap in the face, another reminder of just how horrifically different our experience was as parents. They were shocked, they didn't even know what the book had in it, let alone that it was so off the mark. Apparently the hospital is required to provide some kind of education, so someone went with that. A book that was written to be handed out in pediatric offices during a baby's first follow up. So after hearing me out, they read it for themselves and by the next meeting they had donated them all to pediatric offices and we came up with a plan to provide a journal to every NICU parent instead for them to write down questions, feelings, letters to their baby, whatever they needed to use it for. No one will have to sit and cry as they read that book again, thanks Tony! Hopefully one day my dreams of being a parent and staff advocate there or doing BPD research will come to fruition, but I have a feeling that maybe jumping into those things so soon maybe wouldn't have been beneficial to me or the parents there. That's a lot of raw trauma to bring into a space that is already filled with trauma on both ends, so that's okay.
Lastly! I've spoken about Tim Keller and his ministry, Gospel in Life, before. He passed away in 2023, but his family and others have continued on in his absence. They sent an email out in May of last year asking for stories to be sent in explaining how the Gospel in Life ministry has benefited their readers' faith so that they could share it in future emails. I can't begin to count the ways, so I thought the least I could do is write in telling our story. So I did, but I figured there was no way it would be shared until one morning in February I opened an email from them like always and began reading a story shared by a reader. It was our story! I'm not sure how many people received that email, but I know their podcast has 2 million listeners, so...good job, Tony!
I'll wrap it up with a passage from James 4:13-16 that captures how we're living these days.
"Come now, you who say, 'Today or tomorrow we will go into such and such a town and spend a year there and trade and make a profit' - yet you do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes. Instead you ought to say, 'If the Lord wills, we will live and do this or that.' As it is, you boast in your arrogance. All such boasting is evil."
We don't know what tomorrow, the next 4 months, or year will bring. There's no way I could've predicted that I would be writing all of this a year ago. And I know there's no way I could've written such a beautiful story if I tried, so why try?? We can't wait to see how the Lord is going to use the next year and we're forever grateful to Tony for giving us a window into the true beauty of this life and the one to come.
Miss and love you so much Tone Tone.
xoxoxo
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