Tag: BeforeHeArrived

Does my relationship with God surprise you? It’s okay if it does—it surprises me sometimes, too. If you haven’t known me closely over the last year or two, you might not have seen my faith growing. It would be easy to let that scare me into the shadows, fearing that people who knew a different version of me might see this as fake or hypocritical. But God does not care about my past. He has forgiven my former transgressions, and He gives me permission to move forward. Actually, it’s more than permission—He wants me to move forward and be a beacon of what is possible.

My posts about strength, peace, and joy are not a facade. But they also aren’t the whole story, and I don’t want to pretend they are. I have days where fear, sadness, and anxiety get the best of me. (If you read my other blog posts, you know I’ve been having a lot of them lately.) I still see a therapist, and I firmly believe she is an important part of my mental and physical well-being. But each time I have landed in one of these sad, scary places, God has reminded me that He is with me. Sometimes subtly, and sometimes so loudly it’s hard not to laugh.

I’ll never forget a Sunday months ago, just a few weeks after we first got our diagnosis. I had four different friends text me after church because the message seemed so clearly meant for me. Little did they know, the moment I walked into the auditorium that morning and heard the music, tears started streaming down my face. Instead of finding a seat, I slipped into a dark corner and sobbed through the entire worship set.

It was the Sunday after we had gone to Cincinnati Children’s Hospital. Just three days prior, I had sat in a room full of surgeons for the first time, hearing over and over again that my son might not make it through various procedures, and that “if he makes it to this point,” we still have a mountain of challenges ahead. I had spent the next two days filled with suffocating sadness and confusion.

After crying through worship, I found a seat next to a friend. When our pastor got on stage, he opened with a question: “If God is in control, why does life feel so out of control sometimes?”

I dropped my head and laughed a little bit. People at our church often joke about feeling like the pastor is talking directly to them, and I knew right then this was going to be one of those days for me. The entire sermon was about God’s sovereignty—about how He is in control of everything in our lives. One of the main notes from the message was: “God tells us that He is sovereign so that we can have peace in the middle of chaos.”

Our pastor put this note on the screen and asked the congregation if anyone’s life felt chaotic right now. And then, as if I hadn’t already felt the weight of his words, he began talking about a conversation he and his wife had at dinner a few nights earlier, questioning whether they were prepared if one of their own children died. Again, my head dropped. The air left my lungs. He was speaking my exact, terrifying reality out loud.

Then, the next two notes appeared on the screen, and it felt like God was gently lifting my chin to look Him in the eyes. The first was a quote by John Piper: “God is always doing more than you can see, even in suffering.”

And then next, one of the final takeaways of the morning read: God is taking every piece of your life—the good, the bad, the painful, the confusing—and He is weaving it together into something purposeful, powerful, and good.

Sitting there in the quiet of the auditorium, those weren’t just nice phrases on a screen; they were a lifeline. I realized God wasn’t asking me to ignore the pain or pretend the diagnosis wasn’t scary. He was telling me that the hospital rooms, the surgical consultations, and the unknown future were all pieces He was already holding.

I walked into church that day so heavy that a worship song brought me to my knees, but I walked out feeling light and peaceful.

I could tell you five or six more stories just like this from the last few months. They are moments where I could not possibly come to any other conclusion than this: God is reminding me that He is with us through all of this, pulling me up from dark places, and giving me peace, joy, and strength in the midst of chaos. I don’t know what His purpose is for this season He has called us to walk through, but I do know He has one. He has a plan. And even when I feel sad, scared, and anxious, that is the truth that helps me keep moving forward.

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” Romans‬ ‭8‬:‭28‬

[I wrote this in the middle of the night when I couldn’t sleep and I couldn’t think of a good picture to use so I just left it blank. This morning after 2 weeks of being here I finally read the framed print next to the elevator, and I again dropped my head and laughed a little bit.]

Matilda has had a tough couple of days, full of outbursts and breakdowns and not being very kind. My husband thinks she is tired but I know that what she needs is a day at home in her pajamas. She is very social but she is also a homebody. After a few days of having plans it will usually become very apparent that she needs to just stay home for a day. So I will cancel our plans, and we will stay home in our pajamas and just play and relax. I know she needs this because I am the same way- maybe everyone is, I am not sure. I am actually amazed that we made it nearly 2 weeks without hitting this wall. But we hit it- and we hit it hard.

Thursday morning she woke up and had a full breakdown before we could even get out of the room. She did not want to go to swim lessons, which the night before she had told daddy was her favorite thing about Florida, but today she did not want to go. I knew immediately what was happening. Though she warmed up to the swim lessons and ended up having a lot of fun, on the way home she said the thing I had been dreading hearing. “Mommy, I want to go home.” It brought tears to my eyes instantly and it brings tears to my eyes as I type it now. To know what your child needs and not be able to give it to them is a hard thing to face. And I know, it’s good for kids to not get what they want all the time. But this isn’t a want, this is a need. She needs to be in her safe space. She needs to not have to do anything she doesn’t want to for just one day. She needs to be home. And I can’t give that to her-I can’t give it to myself. My heart hurts, I am exhausted, and I just want to give her what she needs.

The behavior continued throughout the day and into Friday morning. We had a good day but by dinner time Friday night she was on her last leg. She wouldn’t eat any dinner and I told her that if she wasn’t going to eat anything then it was going to be time to go up to our room and take a bath. She climbed out of her chair and into my lap and clung onto me. I wish in that moment that I could have just picked her up and taken her upstairs. But I can’t carry her anymore. I asked her if she wanted to walk or if she wanted daddy to carry her and she said neither. We sat for a few minutes and I eventually handed her off to my husband and as she screamed and tried to cling to me the tears streamed down my face as much as they did hers. He went up the elevator with both kids while I threw away our trash and wiped down our table. I quickly grabbed our laundry and headed up behind them and when I got to our door I could hear her still crying and screaming.

I was sobbing as I came through the door and she reached for me and said “you weren’t supposed to let go.” She was right. I shouldn’t have. I should have sat there with her in that dining room for as long as she needed me to. We snuggled up in her bed together and cried for a while. She eventually turned over and saw that I was crying and asked me why.

“Because it makes me sad that you’re sad.”

“But why?”

“Because I love you.”

“But why?”

“Because you are sweet, and kind, and funny.”

“But why do you love those things about me?”

“Because you’re my daughter and I love you.”

She laid back down in my arms, “I love you too mommy.”

We skipped the bath for the first night since we’ve been here, and just put on our pajamas. We read books until Fletcher was ready for bed and then she beat us in a round of the memory card game (no we do not let her win, she just beats us, repeatedly). She went to bed without a fuss and slept all night.

This morning, we stayed in our pajamas. I did not worry about what was on the iPad or how long they had been watching it. It’s not a pajama day at home but I hope it will suffice for now.

This journey has barely started and it is only going to get harder. I can’t outrun this challenge, and I can’t instantly heal the homesickness of a four-year-old. But watching her laugh as she beats us at her new favorite game for the third time in a row, I am reminded of how resilient we all can be. We hit the wall hard this week, but this morning, we breathed through the impact. And tomorrow, we will try again.

“Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.” ‭‭Matthew‬ ‭11‬:‭28‬ ‭

Matilda is thriving here at the Ronald McDonald House. She’s constantly making new friends and spends hours on the playground every day. There is a learning lab three days a week that she loves, she just started swim lessons, and she gets to go to the beach whenever mommy can muster up the energy. I knew she’d do okay with the transition, but I couldn’t have dreamed she would do this well.

She loves being a big sister so much. She is always putting her hand on my belly to feel Walter kick, singing songs to him, reading books, and introducing him to complete strangers:“This is my baby brother Walter.”

We’ve been going for walks at the end of the day to try and pass that last hour before daddy gets off work, when Fletcher is hangry, and mommy is exhausted. Today she also put her stuffed animals in the stroller, she said they are her “babies” and need to go on a walk too. She insisted on being the one that pushed the stroller for the whole walk.

She wants so badly to meet him, to hold him, feed him, and tickle his head like she did with her new baby cousin back in April. She is at the perfect age to be a helper, and I want that experience for her so desperately. We try to tell her that this will be different, and she replies with a quick, “I know.” But my heart aches because I know that she doesn’t know.

She just turned four—an age where I imagine every mom is grasping for those last little bits of toddlerhood and innocence. It’s a hard balance figuring out what to tell her. She’s smart, inquisitive, and doesn’t accept “we’ll explain when you’re older” as an answer. She’s been fixated on mommy getting “cut open” the last few weeks. She will randomly bring it up and say she doesn’t want it to happen.

One of the friends she made here at RMH had open-heart surgery last week. He showed Matilda his scar yesterday, explaining how they glued it shut and put bandaids on it to help it heal. Today, she overhead me talking about the C-section, looked up at me, and said, “It’s okay mommy, they’ll put bandaids on you and you’ll heal like Josiah did.”  I am so grateful for that little boy’s scar. I don’t want her worrying. I want her playing and just being four, even while we try to prepare her.

I just try to keep putting one foot in front of the other most days. But there are thoughts that stop me in my tracks and take the breath right out of my lungs. Most of them have to do with her.

The thought that instantly brings tears to my eyes, the one I truly cannot fathom, is having to tell my fierce, loving, four-year-old little girl that her baby brother didn’t make it.

For now, I am holding onto the image of her pushing that stroller, holding onto her fierce joy, and praying with everything I have that one day she gets to push her baby brother Walter in a stroller.

“From the ends of the earth, I cry to you for help when my heart is overwhelmed. Lead me to the towering rock of safety,” Psalms‬ ‭61‬:‭2‬

Yesterday, as we left the beach, a woman stopped me and said, “Congratulations!” with so much genuine excitement. She asked if this baby was our third and added a hearty, “Good for you!” It’s interesting—once you get to a third pregnancy and you’re already carting around an 18-month-old, people tend to say that less. Instead, you usually get, “Wow, you’ve got your hands full!” or, “How close together are they going to be?” It felt so nice to receive such pure, uncomplicated enthusiasm from a stranger.

Then, she asked when I was due.

I’ve stumbled over that question so much over the last month or two. What do I even say? Do I give his due date, or the date he will actually be here? If I say the date he’ll be born, people usually reply, “Oh wow, I can’t believe you’re that far along!” Then I’m left standing there, wondering if I should explain that I’m not that far along—that he’s coming three weeks early—but that opens up the CDH bombshell and that can be awkward.

I’ve never been someone who is sensitive to the weird comments people make to pregnant women. With my daughter, I got a lot of comments about how small my belly was. It made me nervous that she wasn’t growing enough (she was fine). Now, when I get those same comments, I know it’s because my baby actually isn’t growing enough.

Lately, I’ve started getting bigger, but it’s because of a condition called polyhydramnios. Babies usually swallow amniotic fluid and pee it back out, but Walter can’t do that as well as other babies, so the fluid builds up. The “I can’t believe you’re that far along” comments are slowing down, but the reason why is unfortunately not good.

When I see other pregnant women now, I pray that their babies are healthy. I wish I could compel them to appreciate how beautiful it all is—every ache, every swollen body part, every single kick. I am usually that “weirdo” who loves being pregnant. It’s not that I don’t love it this time, but it just comes with a heavy weight of mixed emotions.

It’s kind of nice being at the Ronald McDonald House for that reason. Everyone here knows something is wrong. They may not know the specifics—although, thanks to my socialite daughter, a lot of them do—but even if they don’t know the exact medical diagnosis, they know we are in a hard season. There is a strange, comforting grace in being surrounded by people who just get it.

“Each heart knows its own bitterness, and no one else can fully share its joy.” Proverbs‬ ‭14‬:‭10‬

(Eternally grateful to Karlie Jo Photography for the picture)