We’ve made progress on planning Landon’s service and celebration of life.

Coldren Crates (Findlay Ohio) will host the public viewing from 2:00-4:00 pm on Friday, April 30th. We will have a short service at 4:00. After the service, weather permitting, we will have a blue balloon release. An official obituary will likely be posted on Monday in Findlay, Somerset, and Romney newspapers. We understand many who would like to attend will simply not be able to, or are not comfortable traveling, and we completely respect that. If you are able to attend, masks are encouraged for those who can wear them.

We worked with Sink’s Flower Shop and Green House (Findlay Ohio) for his flower arrangements. That process today felt very easy, I already knew what I wanted, and we were helped by a very kind person who made the process simple.

The pastor will be Ben Borsay. Pastor Ben was there for us during the pregnancy, counseling us, introducing us to other special needs parents, and coming to the hospital for the birth and to visit the boys. It feels comforting to have him here with us for the end as well. We will meet with him on Monday.

We chose clothing today. My mom and Justin’s mom came with me as we went shopping for missing items for my whole crew, all focused around Landon’s outfit. Choosing from those too little suits that should be worn for parties, weddings, or Easter was hard. Landon will be so handsome though. It felt good to do a good job for him, and I think we got it right.

I’ve been asked about a balloon release. As mentioned above, we plan do to one (weather permitting) at the conclusion of the service for those in attendance. If we are unable due to weather, we will send balloons home with those who want to release later and take a photo. For those who cannot attend, please feel free to join us from your home in releasing a blue balloon, placing a blue rock, or planting a blue flower. Please send me a photo if you do (text, Two if by Faith Facebook page, My personal page, Facebook messenger if we are connected, etc). Karson and I looked at Nolan’s green balloon pics so many times, and I posted them publicly. It was amazing to see people from all over joining in a final special send off. I have a special plan for the photos we receive, and will share that with you once completed.

I plan to write for the service, and hope to be able to speak again as well. So far, I honestly have no words. I hope they come to me soon.

We worked on Landon’s room a little, I’m trying to make that a normal process that we (especially the kids) are comfortable with. We boxed up 5 boxes of medical supplies that we will donate to The Parker Lee Project. It’s an amazing charity that will help get these supplies in the hands of families that need them. It feels like a beautiful way to honor Landon as well. We’ve donated to them in the past, and I understand the benefit to the supply recipients. Until now I’m not sure I realized how much it helped the sending families as well.

I have also been asked about gifts. We plan to gather, add to, and donate monetary gifts to charities such as Make A Wish, and Awakening Minds Art. I’m hoping we may even be able to sponsor a wish. The funeral home will help administrate (links pending, bear with me) or if you want to work directly with Justin and I let me know. We will announce later what we were able to donate to the charities.

If there’s a question I’ve not answered, please let me know and I’ll provide updates. My mom/Karen and Dee Dee can also help.

We are holding up fairly well. I’m trying to make sure I don’t spend the entire day only focusing on what I need or what Landon’s planning requires. It would be much easier to crawl in a hole for the next week. Maybe I want that, I’m not sure. A couple of Kentucky cousins came up for the weekend to keep Karson company and that has been a perfect distraction. We had s’mores this evening, and at Karson’s request, we finally had that adult vs kids nerf war he’s been asking for for a couple of weeks. The adults dominated. But based on smiles it felt like everybody won.

The hours following Landon’s passing have been very difficult to say the least. After a very hard night, I napped briefly Friday morning, then woke early to ensure I could be there if Karson came looking. I have no idea what the right way to parent a 10 year old through their second sibling loss is…in fact that was awful just to type. But I wanted to make sure he saw me up, coping, and ready for the day. Even if my eyes were swollen and red. We’ve cried together, and when he wants to go to Landon’s room we do. We’ve also laughed together, and I remind him grief isn’t a straight line, or a recipe. It just is, and he can experience it however he needs to. I’ve been so proud of him.

I’ve been in a fog. Maybe I’m physically, mentally, emotionally and spiritually tired. But I’m also feeling like a fish out of water. I’ve dedicated so much of who I am and how I live to making sure the twins, and then Landon, were properly cared for. How they were doing and what they needed drove my thoughts, my actions, my pulse.

I’m the caretaker. I’m the face cleaner and the hand holder. I’m the medicine doser and the treatment giver. I’m the night watcher, and the day monitor. My body wakes me up in the night if there’s a beep a cough or a cry. I can’t sleep past 6:00 because my body says “there’s someone waiting on you to start their day off clean, warm, and loved”. At 8:00 am and 8:00 pm my internal clock alarms that it is time for medicine. All day long my internal instincts alarm – “watch, be ready, take good care”. When I walk the hall I look in his room to instinctively check on him. When I stand I almost utter “I’ll go check on La La”. Then I remember he isn’t there.

I am about to start a journey to figure out who I am now. But even as I learn more, I already know I am a grieving mom, but also still a mom. I am still a caretaker. I’m the face cleaner and the hand holder. I am a grief counselor and a comfort giver. I am a well-being watcher and a laugh monitor. I am simultaneously the creator of fun, the master of memories and the wiper of tears. So much about dealing with this grief is bigger than me, and may become my most important mothering yet. All day long my internal instincts alarm – “watch, be ready, take good care”. And I will do my best.

 

It is with a broken heart I share with you that Landon has passed away. After 7.5 years of fight, Landon’s final days led to his passing, at 9:53 pm on Thursday, April 22nd.

Landon’s life has been full of ups and downs. We’ve battled together through illness, seizures, hospital stays. He and I have fought hard, side by side, through so many things. My commitment to him was always to fight for him with all that I have, as long as that was what was right. Over the last few weeks it has become increasingly clear that his fight was fading, and the hardest, but most loving thing I’ve been called to do as his mother was to be willing to stop my fight too.

I had the most unfortunate of burdens of knowing what this looks like. I watched Nolan go through a similar pattern nearly four years ago. While that burden is unbearable, and this circumstance unimaginable, it allowed me to be honest with myself as soon as I saw the same signs in Landon.

After some particularly stressful moments in the last couple of weeks, I’ve had very transparent conversations with Landon’s palliative care Doctor and case manager. I knew he was getting weaker, I understood what that meant, I sought their support giving him the best, most loving care we could give. When we talked Tuesday to say he was rapidly declining again, and it was time to just comfort, they immediately worked to readmit to hospice, provide comfort measures, and ensure we were supported and surrounded by a loving team that already knew him well. I had the blessing of spending most of his final hours side by side, holding him, talking to him, and admiring those long eye lashes and sweet cheeks I know so well.

By Tuesday night, my parents were in town to help, Justin was aware and working on a plan to get home days sooner than planned, and family members were aware of the seriousness of the situation. At this time I felt fairly sure, but Landon has fought hard so many times that it still wasn’t clear if we were dealing with days or weeks.

Wednesday morning I awoke to a white world. Thick, wet, completely out of place snow had blanketed my view. It was as if God said – just for today, I’ll hide the blooms, I’ll hide the green, we’ll forget about spring, and instead welcome a blanket. I pulled grief up over my shoulders like a blanket that day as well, welcoming its weight, its cover. Grateful that the outside world looked as out of place and wrong but beautiful as the inside felt. I hid the brave, the optimistic, forgot about the fight, and instead welcomed grief. Landon was declining further.

It was now certainly not if, but when, so Justin worked hard again to scoot his flight even earlier, and thanks to a supportive management team, now had a flight home in style arriving right in town no later than 8:00 pm Thursday. His parents were on their way as well, with a similar arrival time. Their vehicles pulled in the driveway minutes apart, and ahead of schedule, giving everyone a chance to see and say goodbye to Landon and to support one another. Similar to Nolan, it was as if Landon heard “everyone is here, we’re ready when you are”.

Everything was as peaceful as one could have hoped. Losing a child is unimaginable. Losing two will certainly prove to be as impossibly hard as it sounds. But both times, I’ve been able to provide a loving, comforting, calm environment. One with love, prayer, music, stories, family, and hugs. Both times those on their way arrived just in time. Both times, the boys final breaths were in my arms. My biggest comfort today is knowing that this time, instead of death splitting them up, it brought them back together.

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