Month: December 2024

It’s Because of That Baby

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This blog post is coming from a hotel room in Nashville! Malachi gets his casts off today and we had some very sweet family members gift us a night in the Opryland hotel as an early Christmas gift so we could make an adventure out of the trip!

The boys are over the moon excited to be in a hotel for the night and to have a slumber party as a family. It’s a bonus to be in such a cool place with so many fun things to see. Last night we were able to walk through an ice exhibit with some pretty beautiful ice carvings.

They even had some fun slides made completely out of ice! Side note- these are some of the hard things we have to navigate as parents. They would not allow any double riders so that excluded Malachi from being able to participate. So we have the option to not do the activity at all or to still allow Levi to participate and risk hurting Malachi’s feelings. Finding that balance is hard so we often avoid situations where we have to make that decision. But we also think it is extremely important to give Levi these experiences. So usually if we let Levi do something we will make up for it later by giving Malachi a special experience.

Malachi’s big treat was getting to go on a boat ride inside the hotel! They were able to use a ramp and tie down his chair onto the boat. Watching him take it all in was just so sweet to watch. He is legally blind, but with the low lights and Christmas decorations he was able to really enjoy the experience. There were also waterfalls and fountains so his eyes were as wide as could be while we floated.

Malachi is very excited to get his casts off this afternoon and we have promised him that he can pick out a pair of shoes for the first time ever. We will have a month off from Vanderbilt trips and be back in early February for his pre-op appointment for spine surgery #1.

The last two weeks have been busy with all the festivities Christmas brings! The boys had a Christmas concert, which they totally rocked.

They were wise men in the church play.

And lots of fun Christmas parties!

They made Christmas cookies for their therapy horses.

And much to Malachi’s delight, he got to hold our sloth friend Zoey for the first time! She turned one last week and Malachi got the chance to snuggle her.

I am actually working part time for the farm now (mostly remotely) so we get to spend some extra time around the exotic animals, much to the boy’s delight! They just got a new baby sloth named Dash that is just too cute for words!

Malachi has been so happy over the last two weeks and seeing his joy will always be one of God’s greatest gifts to my momma heart.

This week we celebrate the birth of Jesus Christ.

Before I became a mother I don’t know that I truly appreciated what the day represented. But after 11 years of experiencing trial after trial I have come to cherish the hope and excitement that this day represents.

There is a familiar Christmas song that words it so well…

“A thrill of hope, the weary world rejoices for yonder breaks a new and glorious morn.”

I don’t know that anyone can better describe “weary” than a medical mom. There have been so many holidays where all I can do is sit bedside from my very sick and fragile child. I am not necessarily tired, but I am weary, living in a circumstance that I cannot change.

But it is because of a baby many, many years ago that I can experience a thrill of hope deep down in my heart.

It’s because of that baby and who that baby grew up to become that I know that one day my children will be fully healed.

It’s because of that baby that I know our pain serves a purpose. And that there is a greater plan at play.

It’s because of that baby that I am reminded that His ways are not my ways and His thoughts are not my thoughts.

It’s because of that baby that I see the providence of God…that He is ALWAYS at work…even in the hardest seasons of my life. And that His plan will always come to fruition.

Christmas is a reminder to me each year that God had a beautiful plan written long before it ever came to be. The circumstances that I am in were not a surprise to Him. They were written by Him and have the ability to draw an audience for Him to display His power.

I am reminded of John 9 when the disciples asked Jesus why a man they passed was born blind. Jesus answered, “It was neither that this man sinned, nor his parents; but it was so that the words of God might be displayed in him.” And Jesus then healed the man.

The works of God will be displayed through each of our trials; may we all pray for eyes to see those God ordained moments and timelines in our own lives and trust that God is working all things together for our good.

Please pray for health over our family. We are entering a high risk season of sickness and we need Malachi’s health to stay strong in preparation for February’s surgery.

And in our next post we will get to show off his new feet!

Sincerely,

Leah

Don’t You Care If We Drown?

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Holidays can be hard for medically complex families. I have talked about this before but it is easy to forget events, hospitalizations, and surgeries when there is an ambiguous date on them. But when they fall on a holiday the memories tend to become a little bit stickier.

Because of this, Jake and I are slow to develop traditions as we recognize that we won’t always be able to fulfill them. It “this is what we do every Christmas Day” exists and then we can’t fulfill it due to a surprise hospitalization it makes the hurt a bit bigger.

But one family tradition that we do our very best to fulfill each year is going to pick out a Christmas tree. The absolute joy that Malachi has when we pick out a tree makes it something I look forward to so much each year.

Malachi can’t see the trees but he can feel them, so we roll him around the farm and find a few that we like, naming them on their location or a distinguishing factor. The “car tree”, the “spiky tree”, the “fluffy tree”.

Well, this year Malachi voted for the “tall tree”. And getting it home was quite the hilarious task in the wheelchair van. He giggled the whole way home with excitement.

We then tackled trying to decorate the 11 foot 11 inch tree on a budget.

Malachi’s favorite thing to do right now is sit next to his tree and look at the lights.

Levi loves it too but doesn’t sit still long enough to appreciate it haha. He got a bag of hand-me-downs with a snazzy new sport coat and boy has he been rocking it.

Last week was a busy one with ten medical appointments between the four of us. One of those was seeing the boy’s GI doctor. We discussed trialing keeping Levi off of his feeds at night to see if he is ready to maintain his weight through extra food calories rather than relying on g-tube formulas to do so. Not getting his feed bag ready every night is bizarre to me and such a (nice) change in my routine. Not to mention the nighttime incidents where the extension comes loose and formula spills all over him, his bed, and his carpet. I am really hoping he can tolerate the formula wean well and this can be the new permanent thing. We will do a follow up weight check in 3 weeks to see how he is doing.

Unfortunately for Levi this week was blood draw week. We have never done well with blood draws so I tried the method of telling him the night before, leaning on the “knowledge is power” mindset.

He started out strong in the chair and I was feeling hopeful! Then we slowly lost our momentum and required some help from Child Life to calm down. But I am seeing some new maturity in him, specifically in his ability to self regulate.

Levi is still struggling with my grandmother’s passing and will still burst out in tears at random times thinking about her. Yesterday we talking about her and he asked “Mom, do you think she is watching us now?” And I said “No buddy, I think she is worshipping God!”

He thought hard about that and said “I’m not going to worship God when I get to heaven.” I asked him what he thought he would be doing and he said “I’m going to go talk to Malachi!”

The first thing he wants to do is have an actual conversation with his non-verbal brother. How incredibly special and heart warming.

Malachi is officially on the basketball team at school and is especially pumped about having a jersey! I am so thankful that we found a place for him to not only be included but also fully embraced and valued for the individual that he is. They have worked hard to learn his signs and he officially trusts them enough to open up and be himself around them. School is the highlight of each day!

Over the last few weeks I have felt fear creep back into my heart. It is a feeling I know well, like an old schoolyard bully, with some seasons bringing large waves of it back in. It creates such a panicked frenzy in me…a true storm.

As we walked through the tree farm last week I looked at Malachi and had this sudden thought, what if this is his last Christmas with us? And the fear and sadness overtook me in that moment.

Mark 4 :35-41

That day when evening came, he said to his disciples, “Let us go over to the other side.” Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him.  A furious squall came up, and the waves broke over the boat, so that it was nearly swamped.  Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, “Teacher, don’t you care if we drown?” He got up, rebuked the wind and said to the waves, “Quiet! Be still!”Then the wind died down and it was completely calm. He said to his disciples, “Why are you so afraid? Do you still have no faith?” They were terrified and asked each other, “Who is this? Even the wind and the waves obey him!”

I haven’t doubted the presence of Jesus in our situation. But in my moments of frenzy much like the disciples I want to shake him and yell “Don’t you care if we drown?” It’s so much easier to find someone to blame for our chaos rather than acknowledge that sometimes the chaos is needed to produce growth in our faith. How can our faith grow if it isn’t challenged and tested to reveal its weaknesses.

I have attached the calm in my life to mean the presence of God. And oftentimes in the calm I feel and hear him the most!

But I have to also keep reminding myself that He is there in the storms. He is aware of the storms. And he is not surprised at all by them.

Storms are opportunities for growth in my confidence in Christ.

I still have a lot of work to do in fully trusting the Lord. But I am praying for confidence to choose Him, even when I cannot feel the presence of peace.

Sincerely,

Leah