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