It was a beautifully slow week in our household so we spent most of it chipping away at our never ending to do list. As far as appointments go we only had therapies for the kids- horse therapy, aquatics therapy, and physical therapy. All local and manageable.
There are some hidden challenges to being a special needs parent that most people may not think about, and one of them is the mental anguish of the calendar. It is filled with therapies, specialist appointments, and surgeries. These appointments loom over me- I always have to keep them in the back of my mind as they dictate everything else we want to plan. It feels so good to mark them off the list…but that is where the mental anguish comes in. Each time we finish an appointment we immediately have to schedule the next one so they are never really “crossed off the list”. They never really end. Right now we are scheduled out through December.
So since we have a slow blog day let me take some time to tell you about Malachi. He is changing. I don’t know what wonderful God is doing in his little brain but we are connecting in a whole new way. When people see Malachi there are quick assumptions made like he does not know what is going on (after all, he is legally blind), he can’t understand what you are saying, he is just a shell of a child. But Malachi is so much more than a shell- he is a 5 year old boy that is trapped by a body that doesn’t function like it should.
Malachi has opinions. Lots and lots of them. He has likes and dislikes and will let you know them very clearly if you know what to watch for. He loves to communicate and gets SO excited when you understand his communication signs and listen to him. He craves being talked to like a typical boy and understands so much more than you would imagine. He wants to be in control of things, which is tough with a body like his. So when he does get that rare chance he knows he is BIG stuff.
Malachi wants to know where we are going next and who he will get to see. He wants details (just like his momma). He has an impeccable memory and routines make his exceptionally happy. His imagination lately has been so wild- particularly enjoying pretending to be dinosaurs, puppy dogs, and angry like Llama Llama Red Pajama.
Malachi is stubborn, just like his momma. He will do things simply because I told him not to. And he will smile sheepishly as he does it. But he is also incredibly sensitive and has the saddest crying face you will ever see. He gets in trouble a lot these days and has to be corrected often, which truly hurts his feelings. He also gets bored, and will do bad things to get your attention- like throwing himself out of his chair.
Malachi loves Levi. I know I say that a lot but the love there is so special and deep. This week I have been trying hard to give him the same big brother responsibilities a typical kid would get. I let Malachi help get Levi ready for the day, piling wipes, a diaper, and an outfit on his lap. As I change Levi I ask Malachi to hand me the ______ and he will slide them off of his lap and to me proudly. He loves to be a big helper and will puff his chest out proudly when I tell him what a good job he did helping. Here is a video:
God is healing Malachi. It isn’t in a grandiose and obvious way, but I see it. His mind is so sharp. He has been so sweet to me lately with lots of big hugs where he squeezes me as tight as he can and lots of impromptu kisses.
His favorite toys right now are his cars and blocks. He strategically will knock them off his tray to make them go BOOM on the floor. He thinks it is hilariously destructive and sometimes it wakes up little brother, which is an added bonus. And he is still the most joyful child I know, laughing at the simplest things and noises.
Oh my goodness how I love him! But I have to be honest…he breaks my heart each and every day. I watch him as he listens to his favorite cartoon shows as the characters tell the audience to do something, like pat your hands on your lap. And I see his little brain trying to communicate to his hands to do it. And I see his little hands move, but they don’t do what he is willing them to do. He just can’t. And my heart breaks to see him work so hard and not be able to do it.
Of course, that’s where I come in- running over to him and helping him pat his hands on his lap. Or do the “Hot Dog” dance from Mickey Mouse Clubhouse for the hundredth time. But seeing the giant smile on his face as we do the things his five year old brain really wants to do makes my heart swell in a good way.
Parenting a child with severe disabilities is so much harder than I ever imagined. I fight back tears on an hourly basis- pretending to be strong for him and reassuring him that he is perfect just the way he is. I can’t take time to mourn for his “different”. I have to be the strong one that assures him that he is able, he is valuable, and he is so special to God.
And then there is Levi. Happy, go-lucky, feet loving Levi. He brings such joy into our lives, filling so many small gaps in parenthood that we have missed with Malachi. We are like first time parents, googling things way more than I care to admit and always asking “is this normal?” I could sit and watch him play for hours. His facial expressions are hilarious and he already has a strong sense of humor.
He has enjoyed trying some new baby foods this week as long as he is in control of the spoon which ends up being a messy game.
I know we say this all the time and it sounds like we are just being overly religious, but we are so blessed by these unique boys.
And yes, Levi fell asleep in his swing like this- holding his foot up in mid air. So strange.
Oh goodness so many different directions to take the devotional thought tonight…
I have found a new flaw in myself this week. I have always known it was there but didn’t want to, or should I say didn’t know how to address it.
My heart has taken such a beating over the last several years. I don’t know that it is relatable to many of you, but when you watch someone you literally would die for go through suffering and pain it changes you. I can’t take their place, I can only step into the storm with them and hold them tightly, hoping they won’t feel the storm’s effects quite as much. But I watch helplessly as I see the storm sometimes win.
I feel so helpless like things are out of my control, which time and time again life has proven they are. And each day I wonder to myself if today is the day that things are going to dramatically change for the worst. Each and every day I have to wonder if this is the day I will find that my son has died in his sleep. Is this the day that Malachi will have “the” seizure- the one that takes away the sweet little 5 year old that gives me the tightest hugs his little brain can muster.
I have been living life waiting for the next disaster to hit. And oh my, is that a weary way to walk.
And to be honest, I don’t know that there is a solution to my problem. Sadly, all my fears are rational ones. One day that fear will become our reality…and like I have mentioned before I am torn between wanting my son to outlive Jake and I but also not wanting him to experience any excess suffering and pain, which many children like him have a tendency to do as they grow older.
So I have started to think this week about how I can combat this mindset, because deep down I know it isn’t healthy and it definitely isn’t the way God intends me to walk through my day. And this week he reminded me of something huge:
Malachi is not mine. He belongs to God. And while life tells us we should be on this earth for ____ number of years in order to live a “fulfilled life”, that is a standard that we have created, not God.
Malachi’s story has somehow managed to touch millions of people. There are not many immobile, non-verbal five year olds who have impacted the kingdom of God in such a big way….without speaking a single understandable word. Through his story we have been given the unique and wonderful opportunity to tell you all about our God. God has packed a lifetime of impact into these last five years for him- how beautifully powerful is that?!?! And how blessed are we that we have had a front row seat to watch God work?
And when I remember these truths my mommy heart starts to mend itself.
I really don’t know that I will ever get past this, but when those moments of fear hit I need to stop them in their tracks and refocus on the TRUTH and the beauty of Malachi’s life.
I know all that isn’t necessarily applicable to you, but this verse is:
Ephesians 2:10 “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”
Have you ever stopped to think about the day God created you? How He spoke you into being. How He took the time to handcraft you, as unique and special as you are?
And He also prepared things for you to do in this life. What are those things? Have you spotted them yet?
God didn’t create us with the goal being to live a long life, or have a bunch of kids, or become wealthy. He created us to do good works…things He has specifically chosen YOU for.
My prayer is that He continually leads each of us to those good works and gives us the strength and courage to attempt them, knowing they have been specifically designed for us.
Please pray specifically this week for Levi’s sleep study on the 31st. There is so much weighing on the results- if he fails this study we will have to trach him. Please join me in praying for a miracle that his vocal cords wake up before then and begin functioning as they should. And pray for sweet Malachi, that God will continue to reconnect the broken pieces of his brain. And pray that God gives Jake and I supernatural wisdom to be able to navigate the decisions and needs for these two special blessings.