Our sweet baby Malachi turned 8 this week!
It is hard to believe that 8 years have gone by, but as I reflect on those years I can’t help but realize how blessed we are. More on that in a bit.
We have a strong willed, opinionated, resilient, and kind hearted warrior. He communicates so much to us in his own way, whether it be his sign language cues or his eyes rolling when he is annoyed with me. You never have to wonder what Malachi is thinking…ask and he will guide you to his answer.
In fact, Malachi stayed very very angry with me for most of his birthday, which I felt terrible about. I had told him that we would make the trip down to the Chattanooga zoo to see his jaguar friend for his birthday. Unfortunately the day before the check engine light came on in the van and instead of going to the zoo I had to take it to the car shop to make sure it was road worthy. I explained to Malachi that we would go to the zoo next week, but the disappointment proved to be too great for him to let it go. He stayed angry most of the day, lightening up a bit when dad came home.
We spent his special day unveiling little surprises throughout the day…punch balloons, silly string, decorations, presents, and even a chocolate milkshake. We had some friends come by and bring a very special and thoughtful present for him when he is in his chair. They also brought their dog, which perked up his spirits.
And we spent lots and lots of time on the PLAYGROUND! Yes, it is fully assembled and it has been such a big blessing already in our lives. We weren’t able to leave the house much this week but having the playground right outside gave them an adventure to look forward to every day.
Special needs motherhood is tricky. So many times I have mentally envisioned something that will be “perfect” for Malachi only to have the idea totally flop. Then I have to deal with disappointment and regret, which makes me a bit shy about pursuing other “great” ideas that my mind comes up with. You can’t predict what will work or not work with Malachi until you try it. I was worried that my excitement over the playground idea might prove to not be as amazing as my mind imagined.
But I have been so pleasantly surprised that this playground is proving to be even more amazing for the kids than I ever imagined it would be. Malachi is in his happy place when he is swinging, and seeing the two of them do something together so easily makes my heart swell.
As I watched them on the swing this week I flashed back to a specific meeting with Levi’s doctors where I was talking to them about the visions and goals I have for my children. They were pushing very hard for me to sign off on a trach for Levi, something that would bring a whole new level of complication to our world. I remember explaining through tears that there weren’t many things that they would be able to do independently together, and I wanted to preserve those things as much as possible. I will never forget the blank and cold eyes of the doctors staring back at me when I shared my dreams of them being able to swim together and play together device free.
I couldn’t help but think about how far they have each come in their medical journeys. We aren’t exactly device-free but they can play together free from machines, wires, and cords. I don’t know how many years this machine freedom will last, but I am so thankful that these early years for them are as normal as we can make them. As they were swinging this week together I walked close to push them and Levi held his hand up and said “No, good”, clearly not wanting me to interrupt their special brother time.
We are so thankful to the work crew that helped make the playground come to life. They have spent countless hours preparing the space and assembling it all, and the gift of time is so impactful to our crew. Jake is capable of doing these things, but time with projects takes away respite time for mom and time with the boys. Malachi’s seizures ramped up again this week and many nights I was getting 3 hours of sleep. Jake being able to take them for an hour after work to let me nap is vital to me being able to be caregiver.
After Malachi’s angry birthday day I promised him we would let his birthday extend into next week. We are getting a burst of warm weather and plan to have some friends over to play on the playground. He will also get to go to the zoo on Monday after horse therapy.
We have a busy week ahead with lots of appointments in 2 days between the two of them, but thankfully many of those are scheduled back to back. Each boy will see the neurologist, the cerebral palsy clinic, horse therapy, and virtual feeding therapy. And then we will head back to the hospital again bright and early Tuesday morning to see Malachi’s neurosurgeon to check on his shunt. This is an annual appointment, and I think he is due for some imaging on the shunt (CT or MRI) but I don’t think they will allow Levi in those areas with COVID so we may have to plan those for another day.
Levi had some homework this week from his feeding therapist to try to eat a McDonalds happy meal. We have never had a child that eats typical food so it was the first time I ordered one as a parent. We tried the chicken nuggets and while he enjoyed the taste and taking a bite out of each he wasn’t able to swallow it. But he was very excited about the box of goodies.
Malachi had another fun surprise last night when the neighbor friends brought a guinea pig over to meet him. Malachi can’t control his body very well, but we watched as he focused so hard on opening his fingers and being as gentle as he could be with the animal. It took so much effort for him, but it was truly amazing to see. He was so happy!
Levi has been a very typical three year old this week, swinging the pendulum of toddler emotions. Now that he has playground time in his day, he also has to deal with playground time ending each day when momma says it is time to go inside.
But he is also quick to move on.
This week I have been thinking so much about perspective. We live in an area tucked in the mountains. At the base of the mountain where our house is we may get a dusting of snow, but a 15 minute drive upwards will take you to several inches of it.
As I stared at that snowy mountaintop this week while I basked in the sunshine at the base I thought about perspective and how much it can change with just a few miles. I could call up a friend that lives just a few miles away that could be completely snowed in.
C.S. Lewis has a quote that I love: “What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”
That mountaintop covered in snow it such a good representation to me about the day Malachi was born. From where I was standing that day I saw tragedy. I was overwhelmed by the circumstances around me and terrified of what I was seeing. I was the “sort of person” that could only see the darkness of the situation and clung to the statistics and facts the doctors were speaking over my son.
But today I am at the base of that mountain and I see what a blessing Malachi has been in our lives. He has changed my faith and challenged my preconceived notions of what a blessing in life truly is. I am the “sort of person” that sees the handiwork of God in even the most destitute situations. Through Malachi I have been given new eyes.
The mountain that we face with Malachi is the same giant mountain. But our journey has taken us to a place where we can look at it from a different perspective and admire it’s beauty instead of focus on it’s daunting presence in our lives. The mountain hasn’t changed, but we sure have.
I have faced an incredible amount of mountains in my life, most of them before Malachi was born. The Bible always talks about our faith having the ability to move mountains and portrays them almost as a negative thing. But God has been showing me over the last 8 years that some mountains are not meant to be moved. Some mountains are part of God’s landscape for our lives and their presence in our lives is meant to be embraced instead of feared, as they remind us of our need for a guide.
I lift up my eyes to the mountains— where does my help come from?
My help comes from the Lord, the Maker of heaven and earth.
He will not let your foot slip—he who watches over you will not slumber;
indeed, he who watches over Israel will neither slumber nor sleep.
The Lord watches over you—the Lord is your shade at your right hand;
the sun will not harm you by day, nor the moon by night.
The Lord will keep you from all harm— he will watch over your life;
the Lord will watch over your coming and going both now and forevermore.
I know many of you reading this are facing mountains in your life that you have grown to hate. But maybe it is possible that you are seeing that mountain from the wrong perspective. Continue to pray over that mountain, declare it to be moved. But also continue to pray that, should God choose to not move your mountain, that He gives you a fresh view of it as He plants your feet in a new spot on it.
Today I am thankful for Malachi’s mountains. I am thankful that through this winding, unpredictable journey that we are on we have come to know God on a deeper level…all thanks to a 1 pound 12 ounce baby born without a heartbeat who has never spoken a coherent word.
Happy 8th birthday to our warrior Malachi. And thank you Lord for choosing to share him with the world another year. What a gift you are to the world.