What a fun and full week we have had! The weather here in Tennessee went wild so we went from 70 degrees and flooding to several inches of snow. Our school system actually shut down due to the large amounts of absences due to sickness which meant Jake was home with us Wednesday through Friday.

We tackled all of our usual therapies and one trip to the hospital to meet with Malachi’s neurosurgeon. Thankfully these appointments are pretty boring as his shunt has been working beautifully from when it was placed seven years ago. During our recent ER visit they did a CT scan to check the shunt function and it was working well. These visits with neurosurgery are now annual which is a blessing.

Levi has some serious anxiety with any and all doctors. It also doesn’t help that his specialists all share the same floor of the hospital so all of the rooms look alike. There is a fire truck in the main waiting area for the kids to play on, which sets my spidey senses tingling when I think about all of the germs on that thing. I have even contemplated bringing gloves and sanitizing it myself one day while we wait, but then I imagine I would get some pretty odd looks. Or some legit high fives from some of the other medical mamas.

I have convinced Levi that it is super cool to wear medical gloves when he is at the hospital. He wears them for the majority of the time we are in there haha.

This week we will head back to the hospital for a visit with Levi’s pulmonologist. We will spend the days leading up to the appointment playing with the stethoscope at home, trying our best to prep his little anxious soul.

Malachi’s birthday was on Tuesday and unfortunately we had 6 appointments that day. But in between each one I did my very best to make it a special day for him. We went out for lunch with grandma, went to Target to pick out a toy with some birthday money, went to see the new Frozen movie with dad after work, ate chocolate cake, and opened up a few gifts at home. He was very aware and excited that it was his special day!

He has been able to wear the same birthday shirt for 3 years now! We are getting our money’s worth.

 

Malachi absolutely loved going to the movie theater and clung to the storyline. Levi, on the other hand hated every minute of it so he and I spent most of the movie running in the hallway.

Several months back I spotted a gift for Malachi that I knew he would love. It is a giant rubber chicken and when you squeeze him it screams for 45 seconds. Yes, you read that sentence correctly and yes we are crazy to buy such an obnoxious gift but he loves his big red chicken. He is even able to push it with his arm and get it to make noise all by himself!

Actually, we all love the big red chicken. There is something goofy and silly about stepping on him and hearing him squawk that brings a smile to all of our faces. I took a video for you, but be forewarned that it is an awful noise:

We also got a small trampoline for the play room that can hold the weight of Malachi and one of us.

His buddy at church gave him a new book about dinosaurs that makes noise.

And he loves playing with his new pet snake that he picked out at Target with his birthday money. He is such a particular little boy with big opinions about what he wants.

Levi has been a live wire this week, overjoyed to have Jake at home with us. He still has a slightly runny nose and whenever he has any postnasal drip he vomits frequently. Last night was the first night he made it without vomiting. This is always a bit stressful for us as aspiration is a concern.

He ate a non-toxic marker this week, so that was fun.

And he hijacked our friend’s ice cream cone. He was very proud of his accomplishment on that one.

We are trying to get him to wear his feeding backpack so we don’t have to chase him around with the bag. He is not a fan.

We have been working hard on manners, particularly saying please and thank you. I took a video of his progress for you to enjoy:

I have told you before about his tender heart toward other kids with special needs. There is another little girl at church who is a superhero like Malachi and Levi is smitten with her. He gets right up in her face to love on her and give her hugs and kisses. She isn’t always up for the invasion of personal space, but also seems a bit amused.

Yesterday we woke up to snow! We took the boys out for a few minutes to let them check it out.

As I watched the boys play in the snow I couldn’t help but take a deep breath and soak in the special life that God has placed us in. As the snow fell on the trees and covered them I felt like we were in our own little bubble, and it was such a safe and secure feeling. You never realize how valuable that security is until you go through a time of not having it.

Seven years ago Malachi was fighting hard for his life in the NICU. I don’t use those words flippantly.

Six years ago we were back in that same hospital in the PICU where we almost lost him again to influenza pneumonia.

Two years ago we were in the NICU in Cincinnati with Levi, caught in a cycle of hope, disappointment, and determination to keep trying.

Our lives with these boys have had so many moments of unpredictability and unknown. But as the snow fell on their smiling faces my heart felt such relief. That moment was a glimpse at the life I always dreamed about. It was a moment void of medical complexities, hospitals, and fear…just two boys and their dad playing in the snowy woods.

The truth is that we live a life of heartache. Yes, there are so many beautiful moments and so many positive things to focus on. But oh how there is so much heartache. The bad news hits us in the face while the good news is something we have to actively and desperately search for and create. It is not an easy world to navigate emotionally.

The Bible talks in Psalm about “A crown of beauty instead of ashes, oil of joy instead of mourning, a garment of praise instead of a spirit of despair.”

Seven years ago I was covered in the ashes as we watched Malachi fight for his life, helplessly sitting by his bed and praying that God would spare him. I don’t know that I can accurately describe the weight of the spirit of despair to you. I pray you never have to experience the heaviness of that load.

This was the first photo I ever shared of our sweet Malachi with the world. I was gripped with a reasonable fear that he wouldn’t live and I wanted him to be remembered for his strength, so I refused to post a photo of my very sick warrior.

We have sat in the ashes many times in our clumsy walk through parenthood. We have had to find contentment dwelling in the spirit of despair as we fight hard battles with our boys.

But over the last seven years I have caught glimpses of the crown of beauty, I have felt the hopeful and refreshing drops from the oil of joy, and I have touched the fabric of the garment of praise. We have yet to truly seize and take hold of these things that the Bible talks about, but oh how we have seen just enough of them to find hope in the journey.

And maybe we aren’t meant to grasp those things until we get to heaven.

God has unraveled the strings of our dreams and used them to create a beautiful tapestry that tells a much more beautiful story. We can’t see the final product yet, we can only watch as the needle moves, some of the stitches more painful than others. But His vision for our family is being fulfilled.

I wrote a poem for Malachi several years ago for his birthday and it spoke to me this year as I read it, reminding me that Malachi was created to be used by God and to bring glory to His name. I know I have posted this for the last several years, but it paints a beautiful picture that my heart needs to focus on each February.

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.

May God continue to use Malachi to do mighty things! And praise the Lord that He stays close to the brokenhearted, binding up our wounds.

Much love,

Leah