A few nights ago I was getting Malachi ready for bed as Levi got himself settled under the covers. He was watching me get Malachi in his pajamas and I could tell the wheels in his little head were turning.

“Mom, can I ask you a serious question about Malachi?”

“Will your question possibly hurt Malachi’s feelings?”

He thought for a moment and then said, “No, I don’t think so, but I am a little worried about when Malachi dies…if they put him in the ground how will we know when he is having a seizure so we can help him?”

The heaviness of that moment hit me hard as I mentally tried to unpack the layers of his question.

In our home we have chosen to embrace conversations about death as they frequently and organically come up. I believe that every person is in a state of dying…some of us just get there faster than others. And in our world of unexpected medical surprises it feels as though we are constantly wandering in and out of the valley of the shadow of death.

I continue to reinforce with the boys (and myself) that the timeline of our lives is determined by the God, the author. And He won’t take us from this earth even a minute before our book is finished. And while I would like to say that this truth keeps my heart secure, I still feel it ebbing and flowing in our dark hours as I wrestle with very human emotions that forget about an omniscient God.

I took a deep breath, as I felt my head spinning with emotion and my eyes fill with hot tears. I also looked down at Malachi to gauge his reaction to the question and his eyes showed he was waiting expectantly for my answer.

Malachi and I are connected in inexplicable ways. In the same way I can sense him seizing three rooms away, he can sense even the slightest tinge of fear or pain in me and mirrors my emotions.

And I had to look away from Levi, hoping that he wouldn’t see tears in my eyes and put this topic into a category that shouldn’t be brought up again for fear of upsetting me.

I took a ragged breath and thought hard about my answer, asking the Lord to guide my words.

“Levi, we don’t have to even think about that because the moment Malachi goes to heaven he is completely and totally healed. You won’t have to worry about him having another seizure….he’ll be walking, talking, and running with Jesus. I think we need to think about Malachi in heaven, not the ground, because that’s where he will be!”

Levi’s sweet response was paired with a moment of remembrance, “Ohhh yeahhhhh- he’ll be completely healed!”

And that was all he needed to hear as he laid his head on his pillow and said “Goodnight mom!”

I looked at Malachi’s face and he was grinning from ear to ear at the conversation, almost as if it ignited his imagination into the things to come. And seeing hope so incredibly tangible in that bedroom…

Hope from a little brother for his older brother, dreaming about they day they will run together on streets of gold.

Hope from a young man that carries a unique cross each day, but has confidence he will one day get to soar on wings like eagles, run and not grow weary, walk and not grow faint.

And hope from a weary momma, knowing that there is a God who cared enough about us to give us a hope and a future through the death of His Son.

“Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight or glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.” 2 Corinthians 4:16-18

In all transparency, I left that bedroom and allowed myself to sneak away and cry for a few minutes. I spoke with the Lord, acknowledging that I can’t do this anymore. A “take this cup from me” moment. The amount of times I am desperately unequipped for the task each 24 hours carries is humbling beyond words.

But thankfully I serve a God who continues to work through my weaknesses. His grace is sufficient, and all we are asked to do is walk humbly with our God.

In less heavy news….

The boys have started back at school and are waking up with smiles each day!

Levi gets in the car every day just beaming about all of the things that happened at school.

I took his photo on the first day and as I left the room I heard his apologizing to his classmates saying, “Guys, I am SO SORRY my mom is so embarrassing!”

Malachi is doing half days and is getting to take Chemistry, Design, and some other really unique and age-appropriate classes. His amazing teachers have designed a schedule for him that allows him to be with his peers, and the joy on his face each day when we talk about school is amazing.

We have an agreement with the (small, private) school that I stay on site while Malachi is there so I get a few hours to complete remote work for my 3 part time jobs. Independence has become very important to 13 year old Malachi and this allows him some autonomy but also assistance from me when he needs it.

The boys have been cycling through their many appointments lately, including Malachi’s post op trip to Vanderbilt. His hips are healing nicely and he has a few more weeks before he is fully cleared for therapies again. This x-ray gives you an idea of the bon removal from his surgery, as you can visibly see the femur heads are now gone.

Levi lost another tooth. And he has been enjoying “front porch sitting” as he calls it to “watch the sunset”. I am not quite sure when he turned 80 years old, and not quite sure how to tell him that the sun sets behind him, not where he is facing, but he doesn’t seem to mind.

This is a transition month for us, but sometimes new routines breathe a strange new breath into me and give my brain permission to re-establish our normal.

Please continue to pray for our family as we navigate our new normal.

Sincerely,

Leah

We are officially 5 weeks out from Malachi’s hip surgery!

Malachi is still in recovery mode and not fully back to his peppy self, but we have been able to have some joyous moments sprinkled within the hard ones.

Sleep is still very hard for him and most nights he wakes up multiple times with a quiet whimper of pain. I have been repositioning him often at night and we still can’t find the best way to position him. His legs are now very loose and rotate in unexpected ways so we have to monitor his legs closely to make sure they haven’t turned in an awkward position.

With sleep being so limited, our 24 hours all bleed into each other with no definitive start or stop to our day. My brain has been so cloudy lately and my body is begging me to rest but we can’t seem to find a new groove for that rest. It feels a little like a twilight zone so we have been trying to break up the days with short adventures here and there. We have done several play dates with friends and he is rocking his switch adapted Bingo game.

We will head back to Vanderbilt next week for his post-op appointment and make sure everything is healing as it should. I don’t expect there are going to be any surprises from this appointment, but Malachi likes to keep us on our toes.

We have also been trying to keep Levi engaged and enjoying what’s left of his summer. The amount of birthday parties we have attended lately is WILD and I have been so grateful to have things on the calendar that he can look forward to!

He also had a great time at soccer camp with his friends.

Jake and I have been very intentional about spending one on one time with Levi, running errands with just him and giving him time to talk through things. He has been frustrated this summer, asking why everyone else gets to go on vacations, mission trips, cruises, etc and he is stuck at home. Tonight he asked me, “Mom, why did God give us such a hard life?”

I don’t quite know the answer to that one, but told him that God must see something in us that we can’t see and trusted us to take our hard life and use to honor Him. It’s a concept he may not fully grasp right now, but we are hoping the seeds we are planting in his heart will grow fruit later in his life.

Jake goes back to school in just a few short days and the boys go back in about two weeks. We aren’t sure yet what the school schedule will look like for Malachi but we are all looking forward to creating some new routines and things to be excited about.

If I am being perfectly honest with you, sitting down to write an update has been very hard for me. I keep staring at the keyboard, but struggling with putting these last few weeks into words. Life has been pretty discouraging lately. Watching Malachi’s prolonged suffering during this recovery has been hard on him and hard on my momma heart. I have been feeling a familiar weariness and helplessness deep down in my bones.

I have been reading through the book of Ecclesiastes and the amount of highlighting I have done is comical. There are so many truths in there that I have needed to hear.

“For with much wisdom comes much sorrow; the more knowledge, the more grief.” Ecclesiastes 1:18

I thought about my motherhood journey with Malachi and the many phases it has gone through. In the beginning we were fueled by a blind hope, believing that he would be healed and made whole. That he would defy statistics and prove doctors wrong.

Each new year in the medically complex world has brought new knowledge…and new grief. Sometimes I shamefully feel offended by unanswered prayers, like our faith isn’t big enough. And I hear echoes of the voices of others saying that my faith is not authentic enough to truly hear from the Lord.

With each new diagnosis, each new surgery, each new surprise the load that we have been given feels heavier and heavier. And the walk with that load feels lonelier.

And there are times where I feel guilt over the grief I carry, repeating verses like “Consider it all joy” to remind myself of the choices we carry within our moments of grieving. But the more we walk in this calling the more I believe that grief can be a healthy catalyst in the walk of a believer.

Grief can act like a refiner’s fire, bringing impurities to the surface that you didn’t know existed deep within you.

Grief can remind you of your humanity, the brokenness of this world, and the desperate need for a Savior.

“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18

God is able to prevent all the hurt and the brokenness. But sometimes the brokenness, the crushing, the diagnoses, the surgeries push our walk with the Lord from head faith to heart faith.

So today I am embracing the grief I am feeling as a process with the Lord and not a final end of a chapter. I am acknowledging the pain that it brings, and allowing that pain to bring me to my knees and call out to God to save us.

Please continue to pray over Malachi’s healing and pain. And for Levi as he sits sideline to hard things. Last week we visited a very loved elderly friend who is not in great health right now. When we visited she was sound asleep and didn’t look like the last time Levi saw her. He sat next to her without hesitation, telling her husband “She looks great!”

When we got into the car later he said “Mom, I told a little bit of a lie in there. I said she looks great and she really doesn’t.” I asked him if it was hard seeing her like that and he shrugged his shoulders and responded, “No, I have seen my brother like that lots of times.”

While God is writing some big testimonies for both of my boys, he is also adding chapters into Levi’s that I would naturally try hard to avoid as a mom. I am trusting in the author on this one, knowing that God is crafting something unique in Levi.

Thank you to all who have reached out to encourage me. Your prayers have been tangibly felt.

Sincerely,

Leah