School has started and our house has been a busy buzz of transition.
Jake teaches at our local high school, teaching Geometry, Dual Enrollment (college algebra, trigonometry, statistics, geometry) with the local community college, and a Technical Calculations math class. This is year 16 for him!
Levi and Malachi are each doing a hybrid style this year. Levi is enrolled in virtual public school and attends in person classes at a local Christian school. School does not come easy for Levi and we are navigating exactly what his his needs are and how to address them to allow him to be successful. The biggest challenge for him right now is his fine motor skills and he struggles to write. This struggle affects several facets of his education and he can get a little frustrated in the classroom.
He hasn’t had the smoothest start to his school year, shedding tears over being away from mom (a struggle every year after his surgeries). He has been an anxious mess so we can definitely use the prayers for a peace to come over him.
Malachi is officially a 6th grader, homeschooling with me this year and attending the same local Christian school each afternoon for specials with his peers. He is in choir, band, PE, handbells, and storytime. This is the first time this school has enrolled someone with higher level needs so we have an agreement that I stay on site while he is there.
Malachi’s excitement was off the charts leading up to his first day. As we drove over he grew very quiet and when I asked if he was a little nervous he signed yes. I dropped him off and as I watched him switch classes, surrounded by his peers, I became overwhelmed with emotions. I snapped this photo when Jake asked him how his first day went.
We have done formal school before with Malachi and his teachers were amazing. But he was isolated in a room with other students with disabilities all day- there wasn’t a true inclusion model. Malachi’s cognitive skills are that of an 11 year old and the older he got the more I desired for him to be immersed in the world and content of his age group.
Malachi is non-verbal but has so many thought and opinions. I do my best trying to “hear” him but sometimes I struggle with these big decisions. I try to put myself in his situation and think about what I would like if I were an 11 year old again and make decisions accordingly.
I have shared this before, but I read an interview several years ago that really resonated with me. The article introduced a man named Martin Pistorius; when Martin was a 12 year old he developed a severe sickness that rapidly deteriorated his health and mental condition and he fell into a vegetative state.
Several years into this illness Martin’s mind began to “wake up” but no one around him knew because he was unable to communicate. By age 19 he was aware of everything around him but still no one knew.
“However much I tried to beg and plead, shout and scream, I couldn’t make them notice me.”
Martin’s first impulse was to turn off his thoughts, since he saw no point in having them in the first place.
“You don’t really think about anything,” Martin said. “You simply exist. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish. It was terrifying at times. What really got to me was the complete and utter powerlessness. Every single aspect of your life is controlled and determined by someone else. They decide who you are, what you eat, whether you sit or lie down, in what positions you lie in, everything.”
One of his caregivers noticed that he could use his eyes to respond to her words and doctors sent him for testing which confirmed that he was conscious and aware of his surroundings.
In his late 20s Martin learned to use a computer and went on to graduate college with a degree in computer science and started his own web design company.
Martin went on to write a book called “Ghost Boy” about his experience of being trapped inside of his own body. Martin’s story has impacted me greatly and his perspective is such a gift for moms like me.
It has made me protective over his experiences and the people I allow him to be around, making sure that there is a respect there for the person that Malachi is, not the person we think him to be.
Last week I was walking through Home Depot with the boys and a stranger approached me and said “I am so proud of you for bringing him out in public. Most moms would keep him at home, away from the world. But the world needs to see kids like him.”
I had very mixed emotions in that moment, recognizing that her intent was to encourage me. But I also quickly filtered those words through the ears of my 11 year old son and when I did that they stung a little bit.
Our society has made such amazing progress in the last few decades in regard to individuals with disabilities. But we still have so much to learn on making this world a more inclusive place for all!
Back to life updates…
Our soccer season has launched! All four of us thoroughly enjoy this time of year.
Adjusting to new schedules is a little complex for our crew. I have been titrating medications, trying to get both boys on a reasonable med schedule so Levi doesn’t have to have meds administered while at school (something that he is embarrassed about this year).
Then there is the sleep schedule struggles. Levi has adapted pretty well to going to bed early, but Malachi locked in to 3am bedtimes all last week. Levi’s feeding pump has to be turned off at 6am and we have to be up by 7. We are running on fumes most days but I am hoping for progress this week.
In order to get Malachi ready to be out of my reach/interventions during the school day we have started all of his respiratory regiments back- nebulizer treatments, cough assist machine, and shaky vest before he gets his morning feeds and medications. The process to get him “safe” to be at school takes a little over two hours right now. It all has to be done in a very particular order to keep him from vomiting up his meds and feeds during the process. I am sure this routine will get easier but the thinking and timing required right now in my very tired momma brain has been a lot!
He is also entering teenager land and needs to have showers at least every other day. He has never been able to sweat, but that is changing and if we don’t keep hygiene on the top of the priority list he gets some pretty intense acne. Showers for Malachi are a process all on their own!
This week I started gathering some stacks of things to take to Goodwill and opened up those boxes I have continually ignored for the last several years. As I sorted through the items one by one I reached the bottom of the box and pulled out a pair of tiny shoes.
I bought these tiny shoes shortly after I found out I was pregnant with Malachi. As soon as the test read positive I knew in my heart that it was a boy and his name would be Malachi, “God’s Messenger”. I went to a consignment sale to purchase some clothing for my nephew and spotted this tiny little pair of shoes and they were my very first mom purchase.
We later used these shoes in my pregnancy announcement photo and he came very unexpectedly just a few weeks later.
As I looked at these shoes again this week I couldn’t help but feel a mix of emotions. I had the sentimental “awwwww” moment that most moms get looking through baby items. I had a laughter moment, realizing that we never actually put Malachi in these shoes. And that was following by the deep pang of sadness as I processed the grief in the layers our journey. These simple shoes represent so many things in my heart.
I put them aside to donate them. Each day I walked by them I visited a different emotion. Each day as I processed each new emotion I watched the Lord speak quietly to my heart.
Psalm 40:1-6 “I waited patiently for the Lord; And He inclined to me and heard my cry. He brought me up out of the pit of destruction, out of the miry clay, and He set my feet upon a rock making my footsteps firm. He put a new song in my mouth, a song of praise to our God; many will see and fear and will trust in the Lord. How blessed is the man who has made the Lord his trust, and has not turned to the proud, nor to those who lapse into falsehood. Many, O Lord my God, are the wonders which You have done, and Your thoughts toward us; there is none to compare with You. If I would declare and speak of them, they would be too numerous to count.”
The Lord replaced the story I had written for one of His own. And getting to unfold this story day by day for the last 11 years has deepened my love for the Father and His mysterious ways.
If I would declare and speak of them, they would be too numerous to count.
Those tiny shoes have served as a reminder to me that God’s is able to do immeasurably more than all we ask or imagine (Ephesians 3:20) and to trust that His plans for our lives are far bigger than our own.
I might have to hang onto them a little while longer.
Much love,
Leah
