What a busy few weeks we have had!

Levi loves school and never hesitates to get up and go. He likes the routine and structure it provides and it has turned him into a social butterfly.

Levi repeated preschool this year, a decision that we didn’t take lightly. He is such an intelligent kid! Levi has cerebral palsy and his muscles don’t always cooperate, particularly with his fine motor skills. This year we added in some extra classes and therapies to address these needs and he has been making huge gains!

I check him out of school early on Mondays to take both boys to horse therapy, one of their favorite parts of the week. Levi rides solo with the therapist helping him from the ground. Malachi rides with the therapist holding him and works on his stretches and strength building. He loves trotting the most!

Our soccer league launched two weeks ago and all four of us have been having such a fun time getting to know the players. Coach Malachi helpthe practices with a button whistle we bought for him, and Levi gets to practice with all age groups (coach’s son perks). By the end of the practice days Levi is asking to go to sleep, which is very rare haha!

Last year Levi wasn’t very interested in actually playing soccer but loved the social aspect. This season we are seeing an excitement in his little eyes.

The league is run as a ministry and most of the profits we get from concessions and registration fees ($20 for the season) go toward sending the teens that volunteer to youth camp in the summertime. This year I am “paying” (contributing towards camp fees) a teen to photograph the games and she caught this gem of a photo.

I asked Levi what he was doing and he explained that he was pulling up his sleeve to show off his muscles and said that the big kids (teenagers) do it all the time.

Stepping down from youth ministry has been a hard transition for our family. The teens were an extension of our family and opening our home to them was something we looked forward so much. Thankfully discipleship doesn’t end with a title change and those relationships are still very real and present. They have grown up alongside my boys and are a big part of their lives!

It has been invigorating getting to do small Bible lessons with the soccer kids! We are sharing the gospel piece by piece each week and they have been so attentive. This is the primary reason we do the league, and the ministry opportunity there has taken away some of the uselessness I have been feeling lately.

Tonight our little Levi was asked to be a ring bearer in the wedding of some sweet friends. He immediately got anxious and told them no, but obviously changed his mind rather quickly- overcome with excitement!

Malachi has had some ups and downs with his health over the last week, requiring oxygen for several days. The bigger he gets it seems the longer the recovery. But we were able to wean him off of the extra support yesterday.

The insurance issue continues to loom over our heads. Too many details to try to type and explain, but it has been a continued battle. I *think* we made some progress last week towards a resolution but today (the 19th) marks the deadline for a final determination.

The special needs mom community is a special one. We all “get” each other. We understand the potential chaos that each hour holds and we understand that sometimes it is the most mundane and mild thing that can set us into a tunnel of grief. Phone calls and texts often go unanswered and the grace we have for one another is such a gift, recognizing that priorities have to trump social time for mom.

But when those phone calls and texts do happen it is such a gift. The reminder that there are others traveling a similar, complicated road helps me feel less alone.

When Malachi’s Chick-Fil-a post went viral several years ago God gave me the gift of a online community of friends with medically complex children. And sometimes they write things that bring tears to my eyes as I see such a reflection of myself in their words. In a world of feeling unseen, through these moms I feel seen.

One of these moms, Kara Dedert, posted something last week that has been playing in my mind. After she and her husband counseled with an ethicist about the care of their medically fragile son the man told them “We are always called to prolong life, but not to prolong death.”

There are so many gray areas in our world. And there are an incredible amount of differing opinions on what is moral, ethical, and right.

In the medical world we are asked to make decisions that mimic the role of God. “Would you like for us to continue lifesaving care for your son?”Had we nodded no in that room 11 years ago the doctors would have allowed inevitable death for Malachi.

And that is why I am so thankful for a sovereign God.

When I look back over the last 11 years with my Malachi I never view it as me prolonging his death. And truthfully I don’t see it as me prolonging his life. I am not that powerful or equipped. Yes, we have met his needs, in the same way that any mother meets the unique needs of her child, but Malachi is here because God chooses for Him to be.

John 10:10 “The thief comes only to steal, kill, and destroy. I came that they may have life and have it abundantly.”

The Greek word “abundant” is perisson, meaning “exceedingly, very highly, beyond measure, more, superfluous, a quantity so abundant as to be considered more than what one would expect or anticipate.”

Malachi has life, and he has it abundantly. Not because of anything I have done, or prolonged, but because of the plans of God for Malachi’s life.

And in turn, I have been given an abundant life in having the honor of being Malachi’s mother.

I have been given overwhelming moments of grief that have led me to overwhelming moments of comfort from God. I have been powerless and have seen firsthand the need for God’s mighty power and trusting in Him. I have been given moments of great sadness and now more easily recognize moments of indescribable joy. I have been given the opportunity to fight against my selfish nature and practice sacrificial love every minute of every day.

Yes, Malachi has life! But I am so incredibly grateful that God has gifted Him with an abundant life, a life that points others to Him.

Much love,

Leah

Let’s start with a few snapshots from our week that are pretty self explanatory!

Our season of calm has ended and this week kicks off the go-go-go! Three years ago I received a calling from God to start a Christ-centered children’s soccer league in our small town. Our first year was complete chaos, like trying to herd cats, but was so much fun. Last year was also a refining year as we tried to find out the best balance for each age group.

The league starts up again this week and we have 99 players registered. We have the opportunity to do a Bible lesson with them during the halftime of each practice and game in our six week season, and I have been prayerfully seeking the Lord on what to share with them this year.

Truthfully, I am incredibly excited about this season. It brings back memories of my teaching days, getting to meet all the new children and trying to learn their names quickly. There is always such a buzz of excitement in the air, and the chance to share the gospel is just the cherry on top.

We also have an adult league that began after the new year that will be wrapping up tomorrow with a championship game. And on the same thread, our outdoor high school boys season is about to begin. So throughout the week we end up spending most of our evenings and Saturday mornings coaching soccer. But it is still something we enjoy doing as a family and the kids love tagging along to all of the practices and games.

Today our Malachi is 11 years old. Malachi’s birthday not only marks the celebration of the day he was born, but stands for God’s graciousness in victory over death.

Most of you have been reading for awhile, but just in case you are new…here is a 90 second video of our sweet warrior!

Malachi was born at just 24 weeks gestation due to a placental abruption. I internally bled for a few days, forming a giant blood clot that went undetected and by the time we went to the hospital we were already past emergency status.

They transferred me to a hospital with a higher level NICU and within 20 minutes of arriving Malachi’s heart stopped in my womb. We raced to the operating room and Malachi was born without a heartbeat. They started CPR and continued for 15 minutes before getting a pulse (20 minutes is the protocol limit). He was 1 pound, 12 ounces and had bilateral grade 4 brain bleeds due to his traumatic birth, and the doctors warned us that the prognosis wasn’t good.

But here we are, 11 whole years later, and I am overwhelmed with gratefulness to God for the journey we have been on. My 1 pound 12 ounce fragile son is now looking more and more like a teenager!

Malachi is an amazing boy. He has double portions of so many admirable qualities and he has taught me so much in the last 11 years. In so many ways he has become a role model to me, reflecting so many Jesus qualities.

I read a quote this week and smiled as I thought about it in context of my Malachi. “May my suffering help make Jesus famous.” -Pastor K. Moran

Malachi’s life shows proof of a Creator. You can’t look at his life and not find a God story.

I often say that we are uniquely blessed. Yes, our life is extremely challenging and looks very different than most. But we also get the opportunity to practice serving others on a hourly basis and to experience what pure, unconditional love truly looks like.

I have had a whole lot of experience with conditional love in my life. Rejection when standards aren’t met, and removal of love when it isn’t easy. But Malachi’s love is so unconditional and pure and such an example to me of grace upon grace.

This weekend we celebrated Malachi BIG TIME! On Friday night we made the drive to Atlanta to surprise him with a trip to his favorite Medieval Times castle/show. This was the one he was knighted at last year and when we pulled in and told him where we were he squealed with joy!

He even got a personalized birthday card on a scroll from the queen! His joy that night was genuinely contagious!

This morning was a rough one for Malachi, and it is highly probable that him having some special treats at Medieval Times (lemonade and some chocolate dessert) had something to do with his seizure increases today. He had 4 pretty large seizures before the end of church, wiping out his energy.

After service we went to our favorite local restaurant and when we walked in they all had birthday hats on their head. They had prepared a surprise party for Malachi, complete with Spider-Man decorations, presents for both boys from all of the staff, and so many sweet surprises.

When I saw the efforts they put into the surprise I was overcome with emotion and had to fight back tears. I thought back to those hard conversations that first week of his life, and to see the ripples he has created in this world and the amount of people he has impacted brings me to tears.

We spent the afternoon resting and trying to build Malachi’s energy back up from the hard seizure morning. Then we had a small celebration of our own with a few fun presents for him to open.

It was really difficult to assist Malachi with the whipped cream game and get a photo, but he also took one to the face and loved it. Lately I have been trying to prioritize being “present” for quality moments with Malachi instead of trying to document them.

We ended the night with Crumbl cookies and a movie rental and Malachi still has that sweet smile on his face.

The day that Malachi was born I felt my faith in God grow legs and start running. The words that I had memorized began to connect with very real moments in very real ways. The “knowledge” that I had about God began to truly be seen and known firsthand rather than secondhand.

It was the day that I realized that I am not enough. And I will never be enough. But faith is believing that HE is enough.

We can’t know the mysterious ways of God, and it would be incredibly arrogant to try to figure it out. But as I sit here tonight next to Malachi there a few verses and thoughts that keep popping into my heart.

Ephesians 2:10 For we are God’s handiwork, created in Christ Jesus to do good works that God prepared in advance for us to do.

God has not only created Malachi, but He has created Him with a purpose in mind. And I believe that God is using Malachi as His mouthpiece. “Works” don’t have to look the same from person to person and often the works that God requires of us are immeasurable.

Exodus 4:11-12 The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord? Now go; I will help you speak and will teach you what to say.”

Abilities are not a pre-requisite to do the work of the Lord. Willingness and obedience are. God knows your limitations and will display His glory and power through them. Sometimes we are called to tasks we can’t physically achieve apart from His help, and God does that for a very specific reason!

John 9:3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”

Sometimes we have to stop chasing the “why” and accept simply being a vessel, a piece of pottery for the light of Christ to rest in to be put on display. And that is exactly what my Malachi is. I see the light of God shine through Him.

Oh how beautiful are the mysterious ways of the Lord.

Thank you, God, for another year with Malachi. And thank you for the many lessons you continue to teach me through his life and testimony.

Much love,L

Leah