Immeasurably More

I wish I could wear a camera all day and share the many sweet brother moments we have each day. While Levi can be a wild man towards Malachi, he is often very sweet and loves to be close to him at all times. We got this bath chair with some grant money last year so the boys could share the tub. Levi isn’t quite ready for a big boy bath yet so we set the chair up in the living room. They both love being so close and accessible to one another.

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Levi is starting to say Malachi’s name (he calls him Chi Chi) and hearing it is so beautiful. I happened to catch it on film for Jake and thought you would like to hear it too!

Our crew had a typical week, racing from one appointment to the next and praying for God to get us through the next 24 hours. That may sound dramatic, but that is our reality! Our life and energy level defies logic so we lean heavily on strength from God.

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This handsome six year old lost another tooth this week! This one didn’t get swallowed so he got to put it under his pillow and get some more chocolate.

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The beginning of the year is always a dicey time for special needs mom as we start over with deductibles and out of pocket maximums. Navigating the bills is quite a job and requires a lot of phone calls and double/triple checking…did they file through primary AND secondary? Should I appeal something they are saying isn’t covered? Last year we broke our record and hit our deductible by January 1st!

So much of insurance is playing the game and learning the ropes. For example, I have to order g-tube and oxygen supplies for the kids every month. Some things, like a specific tape, I don’t necessarily need every month. But if I don’t order it for 3 months they remove it from the list of available items and to get it again requires a doctor prescription (which equals about 3 phone calls for me). So I have a list of things I add to the regular items to make sure they stay current on our list.

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Malachi’s wheelchair is also up for replacement. The average “life” of a wheelchair is 3-5 years and we got his just over three years ago. We met with the Durable Medical Equipment provider (DME) this week to talk about options. They looked at his current chair and said that it was still the most appropriate chair style for Malachi. The frame looks solid enough and there is still enough room for growth so it doesn’t need to be fully replaced. We talked about my concerns with his positioning, especially his head and hips so we have a few minor modifications we are going to try to make to it.

It is in these meetings that I get unintentional snapshots of the future for Malachi. The DME was explaining the importance of good posturing and what we can expect later in life if we continue to choose Malachi’s comfort now over his body in the future. As we have explained to you many times, we always strive to give Malachi a full, happy, and comfortable life. Unfortunately that goal may be setting him up for more pain in the future as his body does what it wants to do right now. We could be more aggressive about posturing him, but I am just so worried we will be causing pain for him in the present, AS WELL as the future. The decisions we have to make can be overwhelming.

 

 

We have been trying to utilize Malachi’s g-tube more. For those of you that are not familiar with feeding tubes I will try to explain this a bit. Malachi and Levi both have the same type of g-tube, called a Mic-Key button, but we use them very differently. Here is a visual of the button.

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Levi is on what we call “continuous feeds”. He is hooked to a bag and a pump that feeds him in small amounts for 18 hours a day. We carry a small feeding backpack around at all times and inside of it is a bag of formula, ice packs, and a feeding pump that is programmed for a certain rate. We leave the extension (the tube that plugs into the button in his stomach) on at all times because it is used so frequently. We tape it onto his belly because he pulls at the tubing all the time. You will see this white tube coming out of the bottom of his onesie in nearly all the pictures I post. One of my biggest fears is him ripping the whole mechanism out of his belly so the tape gives me a little peace of mind as I can hear it rip off his skin when he is in wild man mode and get to him before he does more damage. If the tube gets pulled out undetected (like during their sleep) for more than 4 hours, they have to surgically put it back in.

Malachi has not tolerated pump feeds well but is adjusting to “bolus feeds”. This means that once or twice a day, particularly when we are on the road for appointments, I pull over and feed him through the tube which takes about 5-8 minutes for 6 ounces. I hook an extension tube into the button and put a giant syringe on the end. I fill that syringe up with formula and hold it up so gravity can take it into his tummy. Once the feed is done we unhook the extension leaving just a penny sized button on his tummy. I took this picture of a bolus feed in a Taco Bell parking lot this week to give you a visual haha.

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We were hoping having a g-tube would help with seizure management for Malachi, as the majority of his are triggered by intestinal discomfort, but unfortunately it has not made a difference. He still has the same amount of burps whether we feed him like normal or through his tube.

Changing gears here…

I have been absolutely BLOWN AWAY by God this week. There is a verse in the Bible (Ephesians 3:20) that says “Now to Him who is able to do immeasurably more than all we ask or imagine, to Him be the glory…”

A few months ago Jake and I had an encounter with a stranger at a restaurant. He walked over and said that God laid it on his heart to help our family. He gave us his contact information and told us to track him down over the next few weeks and walked away.

Jake and I weren’t quite sure what the man meant, but over the last few months I have been trying to set up a meeting with this very busy man. On Tuesday afternoon I finally got the chance to sit down with him and talk. I don’t want to go into details yet until things are actually progressing, but I want to tell you that I watched as God brought that Ephesians 3:20 verse to life right before my eyes. He used this very generous man to show me that sometimes God’s plans are sometimes so much bigger than anything we could ever ask or imagine! To God be the glory.

Time and time again we have watched God meet our needs before we even knew what they were. There is not a doubt in my mind that God is holding my family in the palm of His hand…and the undeserved blessings that He continues to send our way leave us speechless. I was literally speechless as I left this man’s office on Tuesday; and the presence of God was so undeniably evident in this situation. It brought Jake and I to tears.

It is through these unforeseen blessings that I hear God say “Leah, I see you. Your struggles, trials, and tears are never hidden from my view. And through it all remember that I chose you for this life, and I will equip you for the task. Just have faith that my ways are beautifully mysterious and trust that I will continue to care for you in this calling.”

I can’t wait to share more about this unexpected blessing with you all over the next few weeks. I know I just presented you with a movie trailer and left you hanging, but I promise more info to come when the timing is right! It will BLOW YOUR MIND and is such a testimony.

Please pray a hedge of protection around the boys as I am starting to develop signs of a cold. If the discomfort I am experiencing from it hits either of the boys then we are in for a long and miserable week. Help us pray the germs away!

Much love,

Leah

 

 

 

Delayed Miracles

On Monday we celebrated Malachi! He was giggling the second he woke up and clearly knew that is was his special day. I dug out his birthday shirt from last year and his favorite monster pants and he was ready to go!

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We had a jam packed Monday but I wanted to make sure we made it special for Malachi. After his physical therapy session we headed to the grocery store and I let Malachi pick out a giant balloon. Of course he chose Paw Patrol and giggled with anticipation as they inflated it for him. Levi is going through a phase where balloons scare him, which Malachi is very aware of and uses it to make him shriek and cry. We then went over to the bakery section and let him choose some cupcakes for us to share that night when Jake got home.

We put candles on his cupcake for the first time and turned the lights down so he could see them.

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And then he flipped the entire cupcake over with his excitement.

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We had one big cupcake left over and I decided to save it for feeding therapy the next day as I knew it would motivate Malachi! The boy’s feeding therapist is very animated and knows how to motivate Malachi; he always tells Malachi to use his “dinosaur teeth” to chew food. We were working at him eating him cupcake and Malachi crunched so hard onto the plastic spoon that it cracked. He froze and I watched a look of fascination come over him that he made such a loud noise with his bite. And naturally, he decided to bite down even harder, shattering the plastic spoon into pieces. I swiped his mouth with my finger as fast as possible but didn’t get it all before he took a big gulp, swallowing a big plastic chunk. Oops!!

So far he is okay but I have been watching him like a hawk. Levi did some major damage on the rest of that cupcake!

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On Tuesday and Wednesday Malachi went to school for a few hours. His class has been somewhat healthy lately so we decided to let him go!

Wednesday Malachi got to ride his horse and had the best session he has ever had. Even when it was over he was a bundle of energy. I love seeing him so happy.

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Our adventurous week continued on Thursday when Malachi and Levi got to take a “Thank You” cookie cake to the robotics and mechatronics class that adapted Malachi’s Wild Raptor for him. While we were there the boys got to see some of the robots the class is working on. We also left the Wild Raptor there so the crew can work on the step by step tutorial they are making so that other special needs families can have the info.

 

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Friday we made a trip down to the hospital for Levi’s synagis medication shot. These shots are extremely painful as the medication burns going in. It is always a miserable experience but we are grateful insurance deemed him worthy enough to get them this season. The shots are nearly $9,000 per season! He will get his final one in March, and we will be pushing for him to get approved next year as well.

We have thankfully stayed pretty healthy this season but on Thursday Jake came home with a cold. Friday night Levi started vomiting once an hour. For a typical kid you would assume it was a stomach bug, but with Levi even the slightest drainage dripping near his airway triggers his gag reflex. So we watched and waited to see what it was going to turn to. Around 1:30 in the morning he spiked a fever of 102.6 and I started to get worried. I cranked up his oxygen and gave him some fever reducers and he fell asleep laying on the living room tile floor. We were up and down most of the night with him vomiting pretty consistently but by Saturday morning the fever was gone and the vomiting slowed down.

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It never really turned into anything else and Malachi and I avoided contracting anything!  But it was a pretty sleepless weekend in our house between sick Jake and sick Levi.

My niece and nephew had a birthday party on Saturday that Malachi had really been looking forward to so he and I left the sickies at home and headed to the party. We talked on the way there about how there would be a bouncy house, cake, and lots of kids his age and Malachi was grinning with excitement. The party was inside a gym and when we got there I could tell that all of the noises (especially the loud blower on the bouncy house) were difficult for him to process. I tried to distract him by talking about the dinosaur cake but after 30 minutes he started to uncontrollably cry, something he does when he gets overwhelmed. I asked him if he wanted to leave and he didn’t answer me- which told me he really didn’t want to leave.

He put on a brave face but it only lasted 5 more minutes and he started sobbing again. When I asked him again if he wanted to leave he signed a sad little “yes”. It broke my heart to see him struggle…he clearly wanted to stay but his brain just couldn’t handle it. We didn’t stay long enough for cake so after I loaded him into the car I took him to the cupcake shop down the road and let him pick one out.

Oh sweet little Malachi. I made it through the whole birthday without shedding a tear, but this picture popped up in my Facebook Timehop a few days later and it did me in.

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Flashing back to those fragile days just overwhelmed my heart. Malachi and I still hold hands every night as he goes to sleep.

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What a journey it has been.

Sometimes I spiritually get into valleys and I forget to continue to pray for the big miracles. I look at Malachi and I want to see a healed child..but then I realize the monumental nature of my request. So I transition from praying for BIG miracles to praying for small baby step ones. Like praying that Malachi will be able to speak coherently. Or that his seizures will stop completely. Or that he will be able to hold his head up for long periods of time.

But then I always feel conviction over than mindset, almost as if my lack of verbalizing the big miracles is questioning God’s power and abilities. This week I am back on that mountaintop and praying for the big healings for both of my boys.

A story from the Bible keeps coming to mind. In Daniel 10 he describes a vision that he had of an angel.

10 A hand touched me and set me trembling on my hands and knees.11 He said, “Daniel, you who are highly esteemed, consider carefully the words I am about to speak to you, and stand up, for I have now been sent to you.” And when he said this to me, I stood up trembling.

12 Then he continued, “Do not be afraid, Daniel. Since the first day that you set your mind to gain understanding and to humble yourself before your God, your words were heard, and I have come in response to them.13 But the prince of the Persian kingdom resisted me twenty-one days. Then Michael, one of the chief princes, came to help me, because I was detained there with the king of Persia.

Like me, Daniel had petitioned God for a huge request and as this angel said, he had been sent by God the same day as that prayer. But due to some spiritual warfare the angel was delayed from making it to Daniel.

This week I have found myself pondering if maybe there is some major spiritual warfare going on right now that is delaying the answers to my prayers. But I am finding comfort in knowing that God’s will always wins. While the devil may delay, God always wins.

So I will continue praying for the big miracles. The unfathomable. The unlikely. Because my God can do “immeasurably more than all we ask or imagine” (Ephesians 3:20).

And a random side note- I stumbled upon a support group for Levi’s diagnosis! This is HUGE! Some statistics quote that in the United States, bilateral vocal cord paralysis happens in 1 out of every 1 million births. Connecting with other moms who can answer questions for me has been a blessing.

Based on what I have learned so far, I am absolutely positive we made the right decision for Levi in trying to avoid the trach. I have also learned that we are blessed that Levi has a voice…not many kids with BVCP are able to speak above a whisper.

Please join me in praying for big miracles this week. That Levi’s vocal cords wake up and start functioning as they should. That Malachi would walk on this earth and proclaim the glory of God in his own words. You know…the BIG stuff!!

Love,

Leah

 

Malachi is 6!

This week we were pleasantly surprised by two bonus snow days with dad! Snow days are always nice from a medical standpoint as they give me a guilt-free cancellation for therapies. The monotony of our weeks can get old so justified reasons to skip are always welcomed!

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We live in a very mountainous area of Tennessee and since heavy snow is rare, the roads are not treated like they are in the north. It is always highly recommended by news stations that if you don’t need to be out then stay home! We loved the suggestion and spent the day tucked in the house as a family. Jake and I even tackled another escape room and finished in an hour and a half! Progress haha.

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A friend took this photo from on top of one of the local mountains and I thought it was beautiful enough to be blog worthy.

Our miracle Malachi turns 6 years old tomorrow (Monday)! He is very aware of birthdays and is really looking forward to the day. We have a jam packed Monday so we decided to celebrate on Saturday. We took the boys to see the new Mary Poppins movie and thankfully we had the theater all to ourselves. It was Levi’s first movie and he did about as well as can be expected for a one year old. Malachi on the hand loved the experience. We sat in the handicap seats which are close to the screen and he tried very hard to watch most of the movie. Since he can’t see well I try to narrate things to him and he was very into any of the action scenes.

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He received some birthday money from some family members so we asked him if he would like to go pick out a birthday present. His eyes lit up and he eagerly signed YES so off to the store we went. We walked through all of the toys, books, and movies asking Malachi about different things we thought might interest him. He genuinely loved the experience and was so focused on picking out toys.

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We narrowed it down to a little kid dinosaur educational toy and a big boy scary dinosaur that roars when it is motion activated. He thought long and hard and finally signed NO for the educational dino and a big YES for the big boy one. He also picked out two new Paw Patrol movies. I think the excitement of shopping for the toys was even greater than the gifts themselves.

Sometimes I forget how aware and intelligent Malachi is, and moments like our shopping trip remind me of how typical Malachi is. He has some strong opinions, a big imagination, and such a sweet heart.

And I was reminded this week of his ability to be a master manipulator. The boys go to work each week with me (Mondays, Wednesdays, Fridays) and Levi insists on sitting in the big chair with Malachi. They were playing so sweetly I got out my camera to take a few pics and caught this hilarious sequence of events.

Picture 1- Levi was playing gently and everyone was happy.

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Picture 2- Levi pulled Malachi’s hair before I could stop him, and it made Malachi start to cry. Levi recognized that he hurt Malachi’s feelings and hugged him.

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Picture 3- Malachi realized that Levi would hug him when he cried and loved his new power over Levi.

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Picture 4- Levi checked to see if Malachi was still crying and Malachi tried to pretend like he was still a little sad (but was definitely fine).

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We have been tackling some big changes with Levi this week. Since Levi came home from the NICU he has slept next to me in his Rock N’ Play. It has a self rocking feature and plays music, but the best feature is that it is inclined (for his reflux). It has always brought me peace of mind as it keeps him tucked in a safe, cord managed position.

But when he sleeps flat he is much quieter with his breathing. He has a sleep study next month and we want to set him up for as much success as possible so we broke out the pack and play. It has proven to be quite the challenge, most nights this week ending in stand offs with him sitting up and staring at me while saying  “momma” over and over again. But each night takes less time than the last so we are making progress.

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The cord management stresses me out so I don’t feel comfortable falling asleep until he is completely asleep. I have been running it through his onesies to keep it from getting wrapped around his neck but he sleeps with three wires attached to him and lots of possibilities for danger.

He has been working on a new smile. And getting into EVERYTHING he can get his hands on or in.

The trauma of Malachi’s birth is still a struggle for me, but this birthday is proving to be exceptionally more difficult for me than normal. It was shortly after kickoff on Superbowl Sunday when I headed to the hospital with Jake, not realizing that my son would be born that night. Scenes from that night play over and over again on my head on repeat, especially with today being eerily similar to that Superbowl Sunday.

This photo was taken the night before Malachi was born. I was 24 weeks along.

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I know that many of you have been with me from the beginning and could likely tell the story of that night as best as I can, but the therapy of writing these blogs helps me through tough nights like this one, so just bear with me.

There was so much confusion. So many tests. So many questions. Malachi’s heart rate was being monitored and he was still doing just fine.

Then in an instant everything changed. My doctor walked around to the right side of my bed and reached out to hold my hand. I remember all of the false confidence I was storing up poured right out of me as I watched his eyes while he spoke. He explained that he thought I had a placental abruption and that I needed to be transferred to a hospital with a higher level NICU. He explained that Malachi was going to have to be born that night…words I never saw coming. I said “But he is too little…will he live?” And the doctor squeezed my hand a little tighter and said “If he survives the delivery there is a 50% chance he will survive. But we need to get you to the hospital downtown immediately.”

I was loaded onto an ambulance, Jake followed behind in the car, and a team was ready for me when we arrived. So many medical professionals were gathered in the room and started trying to figure out why I wasn’t showing the clinical signs of an abruption (bleeding).

And that is when it happened….Malachi’s heart suddenly stopped beating. The doctor attempted to move the bands around to find the heartbeat but after several failed attempts she said “Try it one more time.” I could sense the tension in the room rise and got a sick feeling in my stomach. After a few more seconds she said in a loud commanding voice “GO GO GO” and in an instant all the cords were pulled from the wall behind me and we raced out the door.

The clock above the door showed it was almost midnight. Malachi was born just 4 minutes later via emergency c-section. I will never forget the look on Jake’s face as we locked eyes one last time as I left the room.

We raced down the hall at a full sprint and I watched the ceiling tiles fly above me. The words from Job played in my mind and I prayed “The Lord giveth, the Lord taketh away, blessed be the name of the Lord.” Over and over again I prayed these words.

We made it into an operating room. Everyone was so busy prepping that they asked me to slide myself onto the operating room table and stretch out my arms. The doctor visibly chose where to make her incision and picked up the scalpel. She said “Ready to cut!” and started to bring it down towards my stomach. I spoke up and said “I will do my best to stay still but I can’t promise I won’t move…” and she screamed “Somebody knock her out!!”.

A nurse ran over with an oxygen mask and her final words before I blacked out were “You need to breathe this in as fast as you can…your baby’s not breathing.”

I woke up in a small room with a nurse by my side. She went and got Jake and I remember trying to make eye contact with him as he walked into the room, desperate to find out the outcome of Malachi’s birth without having to speak of it. Jake was fighting back emotion and stared at the floor tiles as he walked over, and my heart sank. I asked “Is he alive?” and Jake nodded yes. But his body language told me I shouldn’t ask any more questions, as my heart might not be ready to handle the answers to them.

Malachi’s birth was a result of a placental abruption that had been internally bleeding for several days, unbeknownst to me. We had even been to the doctor for a regular baby checkup the Thursday before and everything looked great. The doctor always boasted “You are the healthiest pregnant woman in my practice.” An honor I always wore proudly. I drank all the water, ate all the vegetables, and followed all the rules.

The massive blood clot that was discovered during that emergency c-section almost took my life as I lost a significant amount of blood. I was in the hospital for several days receiving blood transfusions and trying to heal from a very quick and aggressive vertical c-section. Malachi was born without a heartbeat and required 15 minutes of CPR on his 1 pound 12 ounce body. He was taken to the NICU, wheeled past Jake for a brief few seconds. I didn’t get to lay eyes on my firstborn for three long days. The pain of those days is something that I will never ever forget.

Early the next morning I asked one of my nurses how Malachi was doing, desperate to hear a good report. She replied “It doesn’t look good.” and left the room. I processed the thought that I may never get to meet my own child on this earth. And it broke my heart. Every time the door opened I braced, assuming they were coming to tell me that my son had died.

The ups and downs from his 4 month NICU stay were overwhelming and strengthened my faith in so many powerful ways. We learned during those hard times full of bad news to rely on God’s strength to carry us. I realized that the control I thought I had over my life was simply an illusion and that I needed to rest in the will of God.

Every day since that night has been a challenge, a test of my faith. Through Malachi I have learned what hope truly looks like. We have known disappointment, we have known true fear, we have known what it is like to pray that your son lives to see just one more day. We have believed in miracles, mourned over not getting them, and then chosen to believe in them yet again.

We have learned that God’s grace is amazing. And how generously He wants to give it to us. We have learned how important a RELATIONSHIP with God is. Not just knowing who He is or what He can do. We have learned to experience God.

I share this poem every year on Malachi’s birthday; it is something I wrote for him a few years ago and it helps me refocus as I fight through all of the hard memories that keep themselves stored in my head and heart from that night.

It was a breathtaking day in heaven as the father summoned the Son.
He wanted to tell him firsthand about something wonderful he had done. 
He took His commanding finger and pointed down at the earth.
Jesus looked and saw a young mother, seconds away from giving birth. 
“Why, Father is she so frightened? Shouldn’t she be filled with joy?
Shouldn’t she be celebrating the birth of her baby boy?”
“She worries about his future” was the Lord’s simple reply.
“She doesn’t know my plans, and that the child will live and not die.
She doesn’t see the footprints that the small boy will leave in his time.
She doesn’t know that his purpose on earth is not for her glory but mine.
The boy has a job to do, as I will slowly start to show.
He is my mouthpiece,” said the Lord “And everywhere he treads I will go.
Some children I create for the joy of the world, but this one is different you see…
This one has been crafted to be distinct; he has been crafted to be used by me.”

Jesus nodded as he understood the truth in God’s mysterious ways. 
He beamed as he remembered that it was his Father’s job to number the boy’s days.
They watched together as the boy entered the world and took his first desperate breath of air.
Then God chose his strongest angel warriors to be sent to watch over his care.
Every day the Father looks down with love at his uniquely crafted son.
And every day He is reminded again that he practiced perfection when he created this one.

What some may say is defined as “different” do not know the true meaning of the word.
But each time I gaze at you, my son, I see the flawlessly strong hand of the Lord. 
You are different, you are beautiful, you are one of a kind.
You are strong, wise beyond your years, and you are a invention from the Master’s mind. 
How can I be sad, how can I lament this special, heaven sent gift?
All I can do it thank the Lord that His plan for you has me in it.

So share your story and live your life with joy, love, and grace. 
And keep on smiling, my sweet Malachi, with a brightness that has seen God’s face.

 

It is just after midnight and the birthday boy and I are watching Bubble Guppies while he tries to fall asleep. He likes to listen to the keyboard while I blog on Sunday nights. I just leaned over and whispered “Happy Birthday” in his little 6 year old ear and the joy on his face brought tears to my eyes. What a blessing this boy is in our lives.

On this birthday we will choose to find all of the joy and continue to fight against my nature to focus on memories. I will let my heart mourn in private when it needs to mourn, but I want Malachi to experience joy today….the same joy that heaven experienced on that special night he was born. I am confident he spent some time in the throne room of God that night, being comforted by the angels as earthly hands brought him back to this earth.

Our life is a uniquely beautiful one. Thank you for giving me the chance to share it with each of you.

Much love,

Leah