Part of being a mom is keeping a close eye on the calendar and planning all the things, and for medical moms that include medical appointments, prescription refills, surgeries (and the pre-op and post-op appointments that come with them), and so much more. Our calendar has been wonderfully slow and “normal” this month but as I look forward to next month I feel the bubbles in my belly already starting to stir.

Between May and June we have over 25 medical appointments and 2 surgeries. Levi will go to Cincinnati at the beginning of June for his summer airway surgery and Malachi will go to Vanderbilt two weeks later for his hip surgery. A lot of preparation goes into surgery weeks, and if you have followed us for long you already know that Malachi’s routine surgeries often end up being everything but routine. Yes, we have to prepare logistically for these weeks but the bigger challenge is prepping emotionally as a family. We have to prepare for physical pain, for hard conversations, for separations, and for spiritual warfare.

So for the next few weeks we are cramming in all the family fun. Walks in the evenings, board games, family movie nights, and mini adventures.

I have been putting in some extra hours at the farm and the boys have been joining me and getting to meet some of the sweet new babies.

Malachi has still been struggling with his breathing, which has been exacerbated by his newest molars making their appearance. Because of this he has not been able to attend school and he’s not too happy about that. I am hoping we can get him stabilized this week and back to his routine. The discomfort is also keeping him from getting a good night’s sleep. But oh boy does this kid love board games! We aren’t able to leave the house much with his loud breathing, so we have been filling the time with lots and lots of games.

Levi is doing well and is taller every morning it seems. He really loves school and is soaking in all the things he hears. My favorite Levi story from the week is from one day he joined me at the farm. I was working in the shop when some Spanish speaking customers came into shop. Levi heard them talking and his eyes lit up, excited to hear something he has been learning so much about at school. When they came up to the counter to pay for their items he casually chimed into their conversation, “Cuatro, Cinco, Seis” (4,5,6). Obviously this was completely irrelevant to their conversation but they were the only Spanish words that came to his mind in the moment. They very graciously chuckled and I was so grateful for their kindness. Then he leaned forward and continued, “Leviticus, Numbers”. Apparently he thinks those are Spanish words as well. I wish we had a video of the moment and my horrified reaction after. Oh Levi.

Luke 5:24-25 “Then Jesus turned to the paralyzed man and said, ‘Stand up, pick up your mat, and go home!’ And immediately, as everyone watched, the man jumped up, picked up his mat, and went home praising God.”

I have been reading in the gospels lately and came to the story of the men lowering their friend through the roof to the feet of Jesus. This story grips my heart in such a special way now that I am the mother of a child with disabilities. The kindness of the friends, the grace and mercy of Christ, the visual of seeing that miracle take place….imagining the reaction of that man’s parents brings me to tears.

The mat, a large piece of the identity he had carried for so long- Jesus didn’t ask him to cast it off. Instead he told him to pick it up and go home. Sometimes the very things we are known by, even the hard and arduous things, Jesus can heal and turn into a testimony of Him that we are called to carry.

That mat that showed so much brokenness now was used to display God’s glory. What a reminder!

Please pray for our family as we enter another season of hard things.

Sincerely,

Leah

Spring break has come and gone and tomorrow our family will be back to our normally scheduled chaos.

Jake teaches in a different school system than the boys and their spring breaks happened to be on different weeks this year. For Jake’s week off we tackled some much needed home improvement projects and spring cleaning. One of the more noteworthy ones is Levi getting a bedroom update.

When we began building our home in early 2017 we were a family of three, and by the time we moved in we were on the edge of being a family of 4! We designed the home with Malachi’s needs (present and future) in mind and he has his own special room with several touches that he will need in the future. Like a ceiling track option when he is too large for me to carry, and special electrical touches to help with machines/ventilators in the future should he need them to live.

Malachi started in that room but with his epilepsy and nighttime seizures he is not safe to sleep alone right now, so we have set Levi up in that room. It is still used for Malachi’s medical needs, diaper changes, and equipment but the other half is Levi’s special space. I have Levi down to night feeds only for 2 hours each night right after he falls asleep (usually 11p-1a), and I need him in the closest bedroom to the living room so I can hear his pump alarm. He moves so much at night that it often kinks and I have to go in and untwist the tubing so the feed keeps running. In the last hour I have had to go in 5 different times and fix his tubing. They have started making them differently and the tubing is so much weaker and floppy.

Malachi and I share what will eventually become Levi’s bedroom, a standard bedroom at the other end of the hall that has a queen bed in it and a sleeping chair for when Malachi is recovering from surgeries and is uncomfortable laying down.

When life gets EXTRA complicated and Jake and I need to be able to switch out caregiving in shifts we move furniture in the living room and set up a portable, adjustable bed in there for Malachi and use the couch for a parent to sleep on.

All that to say…the common theme in nearly each scenario is that Malachi is often the priority. And sometime that carries guilt when parenting Levi. He deserves to feel like a priority, because he IS a priority too! So we spent some time over break creating a more personalized special space for him. He got a new bed frame, a basketball hoop, a nightstand, and space to play. He is happy as can be, but we have already found that we have to create new rules haha…like when I found a bag of pepperonis and mini marshmallows in the nightstand.

We have also stepped out of our comfort zone and signed Levi up for a local outdoor soccer league.

Yes, he has played in our league for the last 5 years but we are on the field with him and able to monitor his airway firsthand. We talked to him at length about advocating for himself and recognizing when he is getting to a dangerous place with his breathing. He still requires more breaks than his peers and being able to verbalize the need BEFORE he is breathless is vital.

We have enjoyed watching him play soccer in this league but we are also very much enjoying watching him advocate for himself. There is something so scary, fun, and entertaining about watching your child grow up.

And I must admit that there is something very freeing and enjoyable about just showing up to a soccer practice/game and just sitting on the sideline without coaching.

The boys had their spring break this past week and we spent most of it at the house dealing with some major allergies. The pollen count where we live is shockingly high and it has messed with all of us. We took trips to the doctor to make sure it wasn’t something more and tests confirmed that allergies were the culprit. Malachi ended up on oxygen most of the week, requiring suctioning often, as he couldn’t clear the junk in his lungs and throat. And Levi ended up with an ear infection. I developed another sinus infection and Jake is still battling.

I am so incredibly thankful for the medical supplies we have at the house to handle life. Before we had home oxygen we would have to take Malachi to the hospital each time he needed supplemental oxygen and stay several nights/weeks. But now we have the freedom to hook him up when he needs it and resume life as much as circumstances will allow.

This weekend we had family over for an egg hunt and game night. We don’t often do traditional holiday things, but egg hunts were one of my favorite things as a kid so we thought it would be fun to hide some eggs in the back woods. Levi acted like hunting his 10 eggs was an absolute chore so I don’t have any fun photos for you of his grumpy self.

But Malachi had a blast! He had signed the night before that he wanted the dogs to help him hunt again like last year. We have learned the hard way that Tuck will open the eggs as he brings them over, as he knows they may contain candy. But Shiloh retrieves them gently and delivers them to Malachi like it was the job he was born to do!

Malachi loved the adventure of driving his little truck deep into the woods and finding each of his eggs. He genuinely had the best day and was all smiles most of the night thinking about it.

Last night before bed we tried a new tradition where we put two Easter baskets on the table and put a heavy rock in each on to represent the sin and the heaviness it brings. I had Levi go find 2 red shirts from the closet and we used them to represent the blood of Jesus covering those sins with the death on the cross. Overnight I replaced the rocks with a present in the basket so when they woke up they would find the gift. We talked about how Christ also gave us a gift on that resurrection morning when he walked out of the tomb…the gift of salvation!

And today we celebrated the resurrection of Jesus. We walked through the ministry, death, and ascension with the boys and explained how important the fact that Jesus was resurrected truly is! I asked Malachi if he believed in Jesus and all the things we had read and he signed a very hearty YES!

We talked about Christ’s nail scarred hands and Levi asked me “Does Jesus still have the marks on his hands and feet?” I had to stop and think about this for a minute, as I am not confident scripture clearly answers that question. I told him I wasn’t sure, and asked him why he thinks Jesus had them when he came out of the tomb.

Levi smiled really big and confidently said “Because our scars tell our stories.”

And I couldn’t love that answer more.

Much love,

Leah

P.S. Sometimes I write these blogs and worry that I am only presenting myself as a theologically amazing mother. And please hear me say that I am flawed and imperfect in many ways. Evidence of that can be found almost daily in Levi’s embarrassing conversations with others….like this morning when he asked someone at church if the person next to them loved Jesus. She answered yes and Levi replied with “Well, you can’t tell it by the look on her face.” And last week’s conversation with a college age girl with a low cut dress on: “Are you sure that dress is appropriate?” Parenting is one of the most refining adventures.