There are weeks that I feel overwhelmingly blessed by God…this week has been one of those weeks!
Aside from some temperature regulation issues with Malachi both of the boys have been healthy and happy. Jake had the day off on Monday so we did what we typically do on slower days- take the boys into town. I know that sounds very “Little House on the Prairie” but it is a thirty minute drive to the nearest big town so to us it is a big adventure. Jake and I received several gift cards over the holidays so it doesn’t take much prodding for us to head into town for a nice meal together! The boys both absolutely love any adventure outside of the house and I don’t have to cook so it is a win-win for everyone. I am also able to run quick errands into stores without having to unpack the wheelchairs, strollers, and children.
Tuesday was a rookie “tubie mom” catastrophe day. It was a long day of appointments so I packed enough gear and food to get the boys through 7pm that night. We made the one hour drive to Malachi’s orthotics guy to pick up his new AFOs and on the drive I noticed a faint smell of formula. Levi had spit up in his car seat a few days before so I assumed it was a leftover stench and tried to ignore it. But then I saw it…his feed bag had tipped over in the front seat and spilled 12 hours worth of formula into the cloth seat. Aside from the obvious mess there was also the issue that he now didn’t have any food for our jam packed appointment day.
We made the hour drive all the way back home to refill his feed bag, clean the front seat, and repack the bag of spare clothes that came into contact with the mess. Then we had just enough time to race 45 minutes away for the next set of appointments. I am waiting for a hot day to tell me whether or not I got all the formula out of the seat…cross your fingers for me.
Here is a photo of Malachi’s new orthotics. Not a huge fan of the white but he definitely wanted the Superman ones so we are going to make it work.
Our boy was a rockstar this week on his horse! We are still making our list of pros and cons on the Epidiolex and use therapist input to help us see the changes. His PT is worried about his decrease in head control but his hippotherapist was thrilled with how vocal and interactive he was on the horse this week. This sweet photo popped up in my Facebook this week (it is from 3 years ago):
Jake celebrated a birthday this week- it is hard in our world to take the time to celebrate us. The boys and I ordered him a giant cookie cake and bought him an escape room game for us to play at the house. The goal is to solve the codes in 60 minutes….it took us 150 minutes to solve the “easy” one but we enjoyed the challenge haha.
Levi is starting to grow a pretty legit head of hair!
He is getting stronger day by day. He is still not crawling but he is so close! We head back to the eye doctor this week to talk about surgery.
Malachi celebrates his 6th birthday next week so we are brainstorming ways to celebrate. Last year we were in the Ronald House in Cincinnati and we didn’t get the chance to celebrate him like we wanted. It doesn’t take much to bring a smile to his face but we want to do something special. I wish you could have seen Malachi’s face this week when he got a balloon from the grocery store- uncontrollable giggling! And for the record, Levi is going through a “scared of balloons” phase haha.
I have been hit this week with waves of nausea as I have read news headlines about New York’s Reproductive Health Act.
Section 2 of the bill creates a new Article 25-A of the Public Health Law (PHL), which states that an abortion May be performed by a licensed, certified, or authorized practitioner within 24 weeks from the commencement of pregnancy, or there is an absence of fetal viability, or at any time when necessary to protect a patient's life or health.
Much of this bill is not new information. The concept of abortion absolutely goes against my beliefs and has always made me sick to my stomach, but seeing it be celebrated has brought a whole new level of sadness. As you already know, Malachi was born unexpectedly at 24 weeks gestation…a point in the pregnancy that he could have been legally aborted.
During the emergency c-section I lost 1.5 liters of blood and almost lost my own life. It was a traumatic birth and a day that will forever be burned into my heart and mind.
If I knew then what I know now…
That my son would be severely disabled.
That I would never sleep a full night again.
That the feeling of helplessness and defeat would overwhelm me daily.
That Malachi will grow into an adult that still wears diapers.
That the probability of me burying my child is overwhelmingly high.
That the mental, physical, and emotional toll this life takes on my body is almost too much to bear.
That the weight of parenting a special needs child takes a toll on marriage.
That life would never be what I dreamed it would and riddled with disappointments and unmet expectations.
…I would absolutely do it all over again. Without hesitation, without regret.
Malachi is God’s child. And God designed him for this earth.
Abortion is not God’s plan. And the pain my heart feels as I watch these celebrations over unspeakable evils is just a tiny fraction to the sadness God must carry over our fallen world.
2 Peter 2:11-12 “Dear friends, I urge you, as aliens and strangers in the world, to abstain from sinful desires, which wage against your soul. Live such good lives among the pagans that, though they accuse you of doing wrong, they may see your good deeds and glorify God on the day he visits us.”
I am finding so much comfort in this verse as it reminds me that we are aliens and strangers in this world. This is simply a temporary place we are passing through, with our end destination routed for an eternal life with God. This world that we are in is riddled and plagued with sin and darkness…but this is not what we were made for.
So what are we called to do in this temporary life in a fallen world? “Live such good lives among the pagans that, though they accuse you of doing wrong, they may see your good deeds and glorify God…”
We are to speak through our actions. We are to be different. Self-denying. Living for His glory instead of our own. We are to live counter-culturally.
Romans 12:2 “Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.”
I have been praying that God would unfold more of His calling on my life and lead me to the opportunities to pursue it. I feel that God has given our family a testimony that is meant to be shared, as our lives have stamps of God’s glory written all over them.
This almost feels narcissistic to type but if you ever need a special speaker for your Bible study or event please let me know- I am not an excellent public speaker but would love to allow God to use me as a mouthpiece to share our story with your group. I feel like God is opening a new door for me to pursue so I am walking forward in obedience. Contact me at: firstname.lastname@example.org
Thank you for being faithful in prayer for our family. We have felt so loved this week by random acts of kindness from strangers, an avenue we know God uses to remind us of His provisions. We are blessed so much more than we deserve. God is good.