I walked Ellie to the bus stop this morning.
It was 47 degrees. Cloudy. With just enough warm left in the air to make the crisp, cold air inviting. I have really enjoyed the fresh air everyday the walk brings. I find myself craving it. It’s good for my soul.
I held her tiny hand in mine. She told me she’s the “chair helper” at school. If a kid forgets to push in their chair, she pushes it in for them. She’s really enjoying kindergarten. The sounds of spelling, singing about her colors, counting, reading, and playing school has become our soundtrack to this season.
It has felt right.
Last November, I submitted a book proposal to a big name publisher. At first, they were interested, but when I didn’t hear anything after a few weeks, I realized they changed their mind. Looking back, I am glad I didn’t get a book deal. I couldn’t imagine having to write a book with deadlines given what 2017 would bring. I didn’t think that in the moment.
In the moment, I was bummed. I felt like I had just wasted money and time, time that is so very precious to me. I second guessed everything. “Did I hear God wrong? Was I not supposed to write a book or quit my job? Is this just part of my journey?” Everyone has setbacks and “no’s,” I understood, but it still felt like a personal blow. Basically they didn’t fault my writing, they encouraged me to grow my platform. More followers. More likes. More speaking engagements.
It’s not your writing, it’s you.
So I stopped. Stopped blogging. Stopped social media. Not a great way to take their advice, but it was what I needed. The time away reminded me why I write, why I live an open life for people to see.
But, there is a difference between writing to bleed and heal, and writing to encourage others. So I traded in my public platform for a private pit. A computer for a journal and a pen. It’s has felt good to write again just for myself. To not have to edit my words so I don’t say too much or not enough, or check my spelling. The words are just mine.
The new year was met with pain. We couldn’t figure it out. Brooklyn was in pain, biting things, crying, rubbing her head. I took her to neurology, the dentist, and the pediatrician. No one could figure it out, until a respite worker mentioned it. Lice.
I was on my way to yoga when Justin found the first bug, and the second. I couldn’t handle it and literally fell against the wall crying. This is not normally my reaction to crisis, so it freaked Justin out. I was done before it even started. I put my yoga mat away, got in the car, and bought every RID kit at CVS, along with a bottle of red wine.
Three hours of picking through her hair, screaming, as Brooklyn was unable to understand, and hundreds of bugs and eggs later, I had completed the first round. We bagged up our entire home, treated everyone in the house, and for the next two weeks, lived in fear.
If you attend Immanuel Church, we also filmed this video during those two weeks. Now you know why Brooklyn’s hair is up. But that’s what we do. In the center of our chaos, we don’t close the door, we open it all the wider.
Fast forward to March, Jayden stops eating. On the eighth day in the hospital with no answers and no food trapped on the twentieth floor, Brooklyn came for a visit. She didn’t look well. Pale. I told Justin she needed to go home and couldn’t be at the hospital. On her way down on the elevator, she stopped breathing and had a seizure outside the emergency room. Justin and our friend Jen, administered her medicine and took her home.
A few hours later, while doing dishes, Justin found her face down on our rug by the front door, blue and seizing again. When He called, I knew I needed to come home, but I was at the hospital with Jayden. He wasn’t eating and there was nothing we could do about it. I did know something, this didn’t feel right. I didn’t want him to die at the hospital. I wanted him home, so I asked him.
“Jayden, do you want to go home?” His eyes twinkled.
My girlfriends, Casey and Kira were visiting so I looked at them, and said, “get the car.” I stuffed Jay, me, his stroller, and a life size Mickey Mouse balloon in the back seat of the Prius, called hospice to meet us at the house, and headed home.
I remember the street lights passing by the window as we drove.
When I walked in the house, the living room lights were on. I never have them on. The house was full of people. Brooklyn was hot and resting in the playroom. Justin carried Jayden in the house and laid him on the couch. Jayden laughed.
I spent the night waking every 3 hours trying to manage Brooklyn’s now delusional behavior with Tylenol and Motrin, while Justin slept in the next room with Jayden, who at the time we thought was dying. The next day, the hospice doctor would be stopping by to evaluate Jayden. We hung blinds. People dropped off food.
Was this it?
Was this how I anticipated this all going down all these years?
I began to nest. I put a chair in his room for visitors by his bed. I stuffed mints in ball jars and left magazines and kleenex in the kitchen.
Brooklyn wasn’t getting better, so I called my friend, Kathrina and asked her to meet me at the church and drive our van back to Lurie Children’s. I needed to take her to the emergency room but I couldn’t drive alone in case Beeba had a seizure. As I loaded the van, for what would turn out to be another hospital admission, the hospice doctor arrived.
“He’s got months and months! Go take care of Brooklyn! He won’t die tonight!” She told me as the van was running. It was exactly what I needed. Blunt truth.
We said our hellos to the familiar, and confused faces in the emergency room. “Weren’t you just here…with a different kid?” Resident after resident. Same story after same story.
Around 1 am, we were admitted. Nineteenth floor. I opened the blinds and there it was, the same view I had for the last eight days. I nested. Move the stroller. Hang the backpack. Move the couch next to her bed. Close curtains. Plug in phone. Set out diapers, one on the scale because they will want to weigh it. Put on hoodie. Turn on fan app. Lay out flat sheets and plastic pillow. Try to sleep through vitals.
Brooklyn had Flu A and her fever was causing the seizures. We were discharged the next day.
The next few weeks were really foggy. Day by day, we nursed B back to health. We slowly increased Jayden’s feeds, 5 mL at at time. Somewhere in there, Ellie got a stomach bug.
Fast forward to April, I am slated to go to New Jersey to speak at a youth retreat then leave the next week for Haiti. I spoke on Abraham. It was a great retreat. But when I got back, I had to pack for Haiti. I was excited, but nervous. I had been to Haiti before, but this was a different nervous. It didn’t feel right.
“Why was I anxious to leave if this is where God wants me? If something was going to happen to my children, God knows where I am. Maybe I am not supposed to be home if something happens. But why would He do that? Why did He do any of this?”
So I prayed. God cancel my flight if I am not supposed to go, but until you do, I am going to go up the mountain, like Abraham. And you know what, that morning we were supposed to get on our plane, our flight was canceled. We even tried to get on a different airline, a different day-nothing. So I came home, and hours later, was in the doctor’s office yet again, with a child.
Jayden was slowly eating more and more each day. I prayed God would give me the summer with him. In fact, in some ways, it felt like I lost him in March, and every day after has been a miracle. Extra credit. An abundance of more time. A gift.
We decided to make the most of summer treasuring everyday like it was his last. We went to Great America and put him on roller coasters. We played outside, took bike rides, Jayden and Brooklyn even went to summer camp. We celebrated July birthdays like we always have, a big pool party with an ice cream bar. We took a “5 family” road trip to Tennessee where we went to the zoo and the flea market, ate good food, and danced at a vineyard. We took a road trip to Michigan, where I held him in my arms with his feet in the sand, where he walked along the ships at coast guard fest. We took a road trip to the Demien’s cabin, a magical place in the north woods of Wisconsin.
I remember standing at our neighbor’s pool as the kids swam in the middle of summer, talking to our nurse. “Is there anything else we can do to help him eat more?” 500 calories wouldn’t sustain him much longer. “If not, would you agree, he won’t be here in October?” She agreed. The only thing left to try were night feeds, something he had done in the past but didn’t like.
It was worth a try, we decided and it worked. His daily caloric intake doubled to 1000. You see, Jayden eats 2 ounces of formula over a one hour period. It’s what his body can process, in and out. Any more causes pain. So, adding 12 more hours so we could feed him was huge.
And all of a sudden, I had a middle schooler. All three of my kids in school. I rebooked my Haiti trip for November 9-16 because I had supplies, and now 37 kids waiting for their custom school uniforms that I had to get down there. It felt right.
August and September came and went with no major illness, a welcome invitation, but that is because I would be needed somewhere else, with the Hubert’s.
We met the Hubert’s back in 2009, when their daughter Livia, and our kids were diagnosed with Sanfilippo Syndrome and Kelly and I have been holding hands ever since. Every milestone our kids missed, we did together. Our secret disappointments, our little successes, our humorous life that only we could laugh about, we shared. So when I heard Livia was struggling, I knew I had to go be with them. Kelly and I would share this, too.
The Hubert’s live near my hometown of Rockford, so it’s a familiar drive. I went out on a Thursday and spent some time with her. Over the weekend, things had not changed, so I went back out Tuesday, then again Thursday, and by Saturday, she was gone.
There’s so much to say about that holy and sacred time. Moments I will privately treasure forever. Kelly and Jake were magical together. The home was full of love and peace and warmth. Her sister is perfection. Their tribe, powerful. Their community of friends were amazing, showing up with food and toiletries, gift cards, and flowers.
Livia is Jayden’s girlfriend. She even had a picture of the two of them on her bedpost. The last night of Livia’s life, we carried Jayden up and placed him next to her in bed. They held hands.
Jayden was able to say good bye and Ellie got a special chance, too.
Kelly even came downstairs for a bit to love on Beeba.
Jake carried Jayden to the car.
We share pain. But you know what else Kelly and I share? Beauty. A front row seat to the most beautiful parts of humanity. Hours after Livia passed, I stood in Kelly’s foyer, crying with her as we watched her neighbors line the street with purple balloons. There is so much goodness in the simple acts of love.
A week later, Justin and I read Scripture at Livia’s funeral:
Revelation 21:2-4. “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them. He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”
Our dear friend, Shannon flew in for the weekend of the funeral and stayed with us. She lost Waverly two years ago this November, and also has a son, Oliver who is near Jayden’s age. She was the first mom I spoke with on the phone that had two children with Sanfilippo, like me. Shannon has been our pain pioneer, blazing the way and leaving bread crumbs for Kelly and I to follow. She is one of the most beautiful souls I have ever encountered. I held Kelly’s hand at Waverly’s funeral, now I was holding Shannon’s hand at Livia’s.
I will be forever changed by those days and by my friendship with Kelly and Shannon.
So consumed with my friend’s grief, October sort of crept up on me. And the last few weeks, Jayden has experienced a pretty abrupt decline. He has started having seizures. He stopped walking, stopped standing. We had to change his stroller, because he is no longer comfortable sitting up. He spends much of his day in and out of sleep, waking to neurological involuntary, rhythmic twitching.
Because of this sharp decline, and because of Livia’s passing, we feel our time with Jayden is coming to an end. We prayed for years that God would meet us in these days, and just like every other time, He is.
We are taking steps now to plan, because they feel right to take them. We want to stare our fear right in the face, be proactive instead reactive. We want to plan when we can still touch him. We want to look death straight in the eyes, when we can still look into his.
Which is why I’m redecorating his room and am planning for his funeral. He got a big boy bed (with just enough room for me to sleep in). I hung basketball pictures of his grandpa, and great grandpa because he loves basketball. Brooklyn got his bed. A hand me down. That felt right. We gave her bed to a little three year old with Sanfilippo, which also felt right.
Which is why Jayden went to a bulls game last week with Justin and we ordered urns. Yes, urns. Two. Because we just want things to be there when we need them. We would have ordered five, but they are a bit pricey.
Which is why I started hanging funny quotes for people when they walk in our home on the letter board. I don’t want the laughter to stop.
A sweet gift has come in the midst of Jayden’s neurological decline-smiles. Laughter. He can’t stop smiling. He even has a new one, a smirk. To the average eye, these look like neurological decline, but to us, they are a gift from heaven.
There’s something amazing about not letting death control me, but me controlling death. Something rising inside of me as my soul agrees, “Oh death, where is your victory? Where is your sting?” Death, you don’t control me. I don’t fear you. I won’t hide from you, I will stand still in your presence.
But that is today.
If I am brutally honest, the only things about death I don’t fear are the tasks in front of me today. I still fear tomorrow. And that feels right. Day by day.
It doesn’t mean we are ready, that’s what I am learning. We never are. We weren’t created for death, we were created for eternity, created for tomorrow’s. We never want to be away from the people we love. God never wanted us to be. It’s never enough time.
We felt now was the time to pull the curtain back once again on our life to let you see. You are our people, our tribe, our family. You are a part of this story, the one God is writing through our family. You are the ones that built the home I am sitting in. You are the hands and feet that have already made us meals. You have been our community, covered in purple, cheering us on. You are the tribe that holds our tears. You are the ones that send us cards and lift us in prayer, the very prayers that are sustaining us.
We can do hard things because we know you all are waiting in the wings when we are ready. Thank you.
People acknowledging this change in Jayden feels right, but talking about it doesn’t, especially in front of our children. Not every time is a good time to talk. We would love it if you would ask, “is this a good time to talk?” before starting a conversation.
It also feels right to pull back, to nest once again. Right now, we don’t want casseroles and visitors. But we know we will and will do our best to communicate when we do. Our dear friends, Kate Demien and Kathrina Montondo are on deck to help us coordinate.
That’s today. Maybe tomorrow something else will feel right. I’m just trusting myself, moment by moment, to do what’s right for that day.
My gut says soon, but what soon means, I don’t know. Jayden could pass this week or it could be next spring. I asked God for summer and He answered, so now I am asking for the holidays. Doesn’t hurt to ask.
So I just can’t leave next week for Haiti. It doesn’t feel right. That’s loaded too, but I am just trying to listen. I don’t want to disappoint God, but I am not sure I am.
Someone said to me, “what would Jayden want you to do?” And at first, I was thinking he’d say he’d want me to go. That’s how adults think. Then I asked Ellie if she wanted me to go, and she said, “no.” I love five year olds. This isn’t just about leaving Jayden, but Justin, Ellie, and Brooklyn, too. Ellie was right, I wouldn’t want my mom to leave if I was sick. When you are sick, you want your mom.
And you know what else? God made room. As I was packing the bags for Haiti, he multiplied space to fit all the uniforms, all the supplies, and 50 lbs. of space left over for more! And because my friends, the Jurados, were added to the team, they are bringing Izzy’s wheelchair. Izzy is their precious daughter who passed from Sanfilippo the week we were supposed to be in Haiti the first time. Some child will still get a wheelchair and the chair I had will go to a child in need at Jayden’s school. Maybe God’s plan was always bigger than me.
So I am getting still and quiet and listening. Listening to Jayden, my mother’s intuition, my family, and my heavenly Father. I am making decisions based solely on that.
Birth and death are a lot alike. Part of you can’t wait to share your baby with the world, and part of you wants to keep your baby all to yourself like a hidden treasure. For the last 11 years, I have shared my baby with the world, I feel now, my need to keep him all to myself. I have so much to say about this, and can’t wait to write more.
We know we can’t do this alone, but I will be honest, it feels like I want to. I feel myself pulling inward and nesting. A dear friend says she can read my emotions by how many home improvement projects I have going at one time, and right now, it’s a bunch. I feel myself wanting to control the temperature and environment in my home. I feel myself becoming protective and private. I feel myself making space in my schedule and not wanting to add anything in. Less people, more intention. More margin.
Believe it or not, alone is my sweet spot. I love being alone and need a lot of alone time to feel energized. It’s air to me in my chaotic life. It’s the truest thing about me and for years, I have fought hard to be open. Our situation has forced us to be with multiple people in our home everyday. Yesterday, there were 6 people in addition to our family of 5. Just today there was two child life specialists, a CNA, a respite worker, grandma, and a girl who cleans my house.
I am still writing in my journal, everyday, because I want to remember. I want to share when the bleeding turns into scars.
But right now, I am bleeding. I should be.
And it feels right.
I went outside this afternoon and took Jayden for a walk. The cool, crisp air wakening our cheeks, light rain making ripples in the puddles.
The outsides match my insides.
It just feels right.