Oh boy, adjusting to posting every two weeks has been more difficult than I imagined! So much has happened over the last two weeks- the good, the bad, and the challenging. If I am ever late on posting that means we had a house full of teenagers until very late haha!

Good reports: Malachi has been raising his arm over his head! This seems insignificant but after ten years seeing such purposeful movement is so huge. He has been very proud of himself each time he successfully does it.

This week we received a package from Make-A-Wish and Malachi was so thrilled. He giggled as we unveiled each new item and talked about the trip. On a scale of 1-10 the excitement right now is a solid 100. Both boys squeal with delight each time we talk about it. We will be leaving for Orlando in one week! I can’t wait to share the details of our trip with you all when we get back.

May is always a busy medical month for us as it hits several of our big specialist appointments. But nothing negative to report from any of those, praise the Lord!

Challenging reports: Levi’s school year is coming to an end and we have been making our final decisions regarding next school year. We have officially made the decision to have Levi do another year in preschool with some pull-out services to try to concrete some basics. Levi’s fine motor restrictions make handwriting, coloring, and other things more of a challenge. The gap between him and his similar age peers is a pretty significant one, so navigating that new reality has been a something we have spent a lot of time and prayer on.

We try so hard for normalcy, so each time we aren’t able to achieve it a little piece of me mourns. But in the bigger picture milestones can be achieved outside of the normal timelines. So we will continue to focus on forward progress and be thankful each time that happens.

And now for some of the bad reports. Thankfully we are through most of the trials we have had over the last two weeks so I guess I could slide them into a different category now.

Malachi takes three seizure medications twice a day and he still has uncontrolled seizures (formal diagnosis: Lennox Gastaut Syndrome & Intractable Epilepsy). He is extremely reliant on these seizure medications for quality of life. One of the medications (Epidiolex aka FDA controlled CBD) can only be ordered through a mail order pharmacy and the timing is very strict for re-orders. We scheduled our delivery 10 days before he would run out but when delivery day came it did not arrive. I started making phone calls the next morning and they assured me it was on its way and to call back if it didn’t arrive the next day.

Very long story made short….the package was lost by UPS. This realization by the companies involved happened at 4:00 on a Friday. I immediately called the epileptologist office but the on-call doc’s solution was to take him to the ER if he started having breakthrough seizures. We spent hours upon hours on the phone trying to find a more reasonable solution, but in the end Malachi had none of this medication for nearly 4 days. The breakthrough seizures hit strong on the following Monday evening (15 large seizures in 1.5 hours) and we still didn’t have any replacement meds.

I ended up going to a local CBD dispensary and trying to find something comparable to give him until the medication arrived. And that was enough to get the seizures to calm down and put a smile back on his face.

There is definitely some holes in the process that need to be filled. Today I met with the epileptologist and discussed some solutions to prevent this from happening again.

The emotional toll this situation took on me was a significant one. Malachi’s quality of life was most definitely affected. He wasn’t able to sleep due to discomfort and watching him suffer without a reasonable solution to turn to was really, really challenging for us all. It brought about all of those feelings of helplessness, and as a mom that is one of the hardest pills to swallow.

Discouragement is always lingering in the shadows of our life, and when I have on my negative glasses I can find it pretty quickly. And the more discouraged I got the more useless I felt as a mom.

I spent time reading in Ezekiel this week, revisiting the prophecy in the valley of dry bones from chapter 37. The Lord takes Ezekiel into this valley where he is surrounded by piles of dry bones

Thus says the Lord God to these bones, ‘Behold, I will cause breath to enter you that you may come to life. I will put sinews on you, make flesh grow back on you, cover you with skin and put breath in you that you may come alive; and you will know that I am the Lord.’ So I prophesied as I was commanded; and as I prophesied, there was a noise, and behold, a rattling; and the bones came together, bone to its bone. And I looked, and behold, sinews were on them, and flesh grew and skin covered them; but there was no breath in them. Then He said to me, “Prophesy to the breath, prophesy, son of man, and say to the breath, ‘Thus says the Lord God, “Come from the four winds, O breath, and breathe on these slain, that they come to life.” So I prophesied as He commanded me, and the breath came into them, and they came to life and stood on their feet, an exceedingly great army.

I love this chapter as it paints such a vivid picture. And this week it served as a much needed reminder to me that without the Spirit of God within me I cannot function as a soldier of God…even in my mothering.

John 15:5 I am the vine, you are the branches; he who abides in Me and I in him, he bears much fruit, for apart from Me you can do nothing.

I pray that God continues to fuel me with His presence and gives me clarity to turn to Him for life when I have crumpled into that valley of dry bones. When we are feeling empty it is a great reminder that we may have partially disconnected from the Vine.

Please be in prayer for us as we prepare for a big, exciting week. Pray specifically over health for our family and that the memories we create will be lifelong ones we can look back to. Pray against the spirit of discouragement in me as we venture out of our bubble.

Much love,

Leah

This weekend we had the privilege to go witness my brother, Andrew, being baptized in Atlanta. It was a special time and it was a blessing to see him respond to promptings of God and choose to pursue Him unabashedly.

Andrew wrote out a testimony that was read during his baptism and, with his permission, I want to share it with you. Hearing it reminded me of the call to declare the works of God, as we read in Psalm 71.

Psalm 71:15-18 My mouth will tell of your righteous deeds, of your saving acts all day long—
though I know not how to relate them all. I will come and proclaim your mighty acts, Sovereign Lord; I will proclaim your righteous deeds, yours alone. Since my youth, God, you have taught me, and to this day I declare your marvelous deeds. Even when I am old and gray, do not forsake me, my God till I declare your power to the next generation, your mighty acts to all who are to come.

Andrew’s story:

My name is Andrew, and this is my story. This story isn’t one of radical transformation from a life of sin but will be relatable to someone here today. Growing up in a Christian home while attending a Christian school K-12th and Christian University trained me how to be a Christian very well….maybe too well, you can say I was a classically trained Christian. Unfortunately having an understanding who Jesus is can sometimes be used against Him as we never truly emulate Him by leaning in. This is where religion meets spirituality. Being Christ-like and a Christian seem the same on the surface, but for me they are different. “Christ in me” is what I was missing. I knew who Jesus was and He knew me, but I still kept Him at a distance. As an adult going through the motions I thought, “I’m good, I am covered” but wasn’t fully exemplifying Jesus in my marriage, as a father, or as a friend.

I recently went through a difficult trial and unsuccessfully tried to climb out of it on my own. At my lowest point when I was teetering on the edge about to fall, Jesus grabbed me with both hands and pulled me back into Him. He held me with His loving arms, spoke directly to me and performed a miracle in my life. After living 38 years in black & white, when I looked up I started seeing color for the first time…..and let me tell you, it is beautiful.. The beautiful component is that every time I get consumed by fear or guilt, He reminds me that “I am forgiven.” The immense pressures and pain of life can always be met by the rushing waters of grace. Today I proudly proclaim: “I’m not here for blessings, Jesus, you don’t owe me anything. I just want more of You.”

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What a blessing it is to hear the ways God is working in his life, and changing generations to come. I hope hearing his story was an encouragement to you today, wherever you may be in your walk with God.

We rarely leave our “bubble” so a trip to Atlanta was a pretty big deal. The boys were the most excited about staying in a hotel room. But leaving our bubble means we enter a world of people that don’t know Malachi, and it is so easy for me to forget how much we tend to stand out. Even though I know it is coming I still experience second-hand embarrassment at all of the stares Malachi gets, not necessarily for Malachi’s sake but for the sake of the starers.

And each time we get the looks of pity I always think to myself, “If you only knew…”

So this week’s post will be all about finishing that sentence.

If you only knew how amazing Malachi is. He is so intelligent and intentionally funny. He has a sense of humor and likes to play jokes on people. He is the best secret keeper, and treasures the opportunity to keep a secret with a sly little smirk. He works so hard at all that he does and loves a challenge. His memory is genuinely impressive- we can play the first three seconds of a song and he can choose the correct one from a multiple choice list. He is opinionated and feisty but also filled with such tender love for others. He approaches life, even the trials of it, with such a positive attitude and his bravery is unmatched.

If you only knew how happy we are. Yes, there are so many hard things. But there is such a purity to our life. I get to connect with my son in a wordless way as our hearts communicate and beat in sync. I get to relish the simple joys of watching my child progress at his own rate. New parents watch for milestones and hang onto them with such pride. We will get to do that for a lifetime with Malachi, celebrating tiny victories each and every day.

A few weeks ago Malachi started wiggling his foot independently from his leg. This is the first time he has done this and I was so incredibly happy as it means his brain is making new connections. In our world there is always something to celebrate!

If you only knew the richness of faith and hope that this life has cultivated. For some faith is a choice, but for us it is a necessity. I am completely and utterly reliant on God to sustain me, and He has never failed me. I get to watch Him work in ways that can’t be attributed to anyone else. And getting to be a supporting character in a beautiful Bible story is such a gift.

The last two weeks have been requiring a lot of self-denial. And my attitude about it wasn’t the best. There were things that I wanted to get done and our medical routines didn’t allow it. I caught myself building up resentment and it kept bursting out of me in bursts of anger.

Then the Lord put a verse in my heart: “This is My commandment, that you love one another, just as I have loved you. Greater love has no one than this, that one lay down his life for his friends.” John 15:12-13

When I read this verse as a child I always viewed it as literally dying for someone else. Like jumping in front of a bullet meant for another. But God has been showing me that this verse also can mean sacrificing your quality of life to improve the quality of another’s. It requires the love of Christ to treat someone as more important than yourself.

Raising Malachi and Levi have brought the Bible to life and put actions to the words on its pages. This is probably one of the biggest blessings this calling has offered me. It is a refining parenthood journey, exposing so many flaws and failures. But it is helping to conform me into His image, and I am thankful for the help in practicing true surrender.

If you only knew how much this life has unlocked community and allowed us to feel the love of strangers. In fact, just today I came home to find a large bag on our porch filled with summertime activities for the boys from a stranger. These little things- simply being seen and thought of- have been such an encouragement over the last decade. We receive emails and letters from all around the world- hand painted pictures of Malachi, notes of encouragement, and devotional books from people we have never met. This life has allowed us to see people rally together to bless a family, and has created such a humility in us as the receivers.

But even more than the tangible blessings of community, we are also surrounded by prayers. And knowing that an army of believers is joining us in prayer is so incredibly powerful.

If you only knew…you wouldn’t be able to look at us with eyes of pity, seeing the true gift we have been given.

I could keep going on and on and on. But then it would just feel like I was bragging about how amazing our life is haha.

Don’t let me deceive you- there are still hard moments every hour. But I am training my eyes to focus on the blessings, and trust God to carry me through the hard. Sometimes complicated messes yield richest blessings.

Please be in prayer for my boys as we face summer surgeries. Please pray health over all of us as we prepare for Malachi’s Make-A-Wish trip in a few weeks, that nothing will prevent this from being a memorable, amazing time for him. His excitement is building each day and I can’t wait to see how he handles the week.

Much love,

Leah