I love you because you have Cerebral Palsy- A letter to Malachi

My dear Malachi,

It is the year anniversary of your Cerebral Palsy diagnosis. That day changed my world. First it filled me with grief to know that you may never sit or walk and that I would not see you reach milestones that most babies reach. Many of those things I took for granted. My heart twists in pain knowing that things would be much harder for you as you grow. This human world is not made for people in wheelchairs and walkers. Malachi, I’m sure you can see that people that have full use of their bodies take them for granted all the time and abuse them. I had a difficult time with the “fairness” of it all. As the year went on, oh how you endeared yourself to me and your Dad and to everyone one around you. You truly live up to your name “messenger of God” because you remind all of us how carefully He created us to be just who we are. One day, I hope you will know the intensity of a parents love for a child, the great desire it is for them to have the best for their lives. Oh what turmoil I have been in, wanting so bad to see you walk, but accepting you for exactly who you are and nothing more. I’ve learned to rejoice in what you CAN do rather that feel sorrow for what you can’t. It has only been the past two months that I have realized that I don’t love you DESPITE of your Cerebral Palsy, but I love you BECAUSE of it. There are so many things you do that you would not do if you did not have CP. There are so many lessons that I have learned just by watching you triumph in the face of seemingly insurmountable difficulties. I love you for YOU. Just the way you are. And here are some examples:

I love you because you taught me that “It’s Not About Me”. Around the time you were diagnosed with CP I was having a very difficult time personally. I found myself face-to-face with doubt about wether or not people liked me, what people thought of the ministry I was doing in Belize, the all consuming dread of not feeling accepted….blah, blah, blah, me, me, ME! The day you were diagnosed, that all went out the window. Those feelings were so minute, so trivial, so self-centered that they just did not matter anymore. It’s amazing that when faced with a trial the cares and concerns we have are sifted and the problems that should not even be problems fall away. I looked at you that night and I knew “It’s not about me”.

I love you because of your floppy head- Your head control has improved greatly from when you were a baby, but it is still “floppy”. How darling you are when you turn your head and it cocks to the side and you look at me with those big blue eyes, batt your never-ending eye lashes and grin sheepishly. It’s very endearing, and you do it not only to me but to everyone. I wish some days you could control your head because it would make life easier for you. Even so, you use it to your advantage, like when you eat, you flop your head to the side and bring it down to the tray and start scooping food in your mouth. How resourceful! You figured out a way to make it easier to feed yourself. I laugh and it does not last for long does it? I want you to practice eating the “right” way. Oh son how I love that floppy head!

I love you because God used you to show Daddy and I that missions truly is our heart beat- When we received your diagnosis, many people thought that we would come home and stay home. Many people wanted us to stay home in the USA. After much prayer and consideration, we realized that God wanted us to continue, and that his call on our lives has not ended and that He wants us to help spread the gospel to all nations. At times we wondered if we got the right message from the Lord. After a while, we knew we did. God knows what He is doing and we have put complete trust in Him. Malachi it is encouraging to us that God would still call us to cross cultural missions knowing that life would be more challenging for us all. God is using you to teach us so many things!

I love the way you crawl- You use your left arm and bring it under your chest/torso to push yourself forward and you also use your toes to scoot. I posted a video of this and since then you have gotten more efficient! What a joy it is to see you mobile. It takes much determination and stick-to-it-ivness to figure out how to crawl with a body that does NOT want to crawl. You, my dear, are AMAZING to watch.

I love that you are teaching your sisters to love everyone- I am happy that your sisters will grow up feeling comfortable around disabled people because they feel comfortable around you. I love that they are learning lessons through helping you and beginning to understand why you can’t walk or do other things in the same way they can. I love how they include you in their games even if they are running around. You are teaching them those things and as a mom it’s a beautiful thing to watch unfold.

I love the way you clap- When you first clapped it was ever so slightily, but when I saw you do it, I knew I was witnessing a miracle! Through the months, you have learned to do it even better. It’s a slow motion clap that makes no sound, and it is so adorable when you do it because you say, “Yay”. It is amazing to see you try an succeed.

I love your vulnerability- You are a toddler now, but because of your delays, you are very dependent on us. You still have the innocence of a little baby. You completely trust that people will care for you and in that you have an openness about you like that is unlike I have seen. You allow us to hold you and snuggle you, you put your hand on our faces and goo-goo and ga-ga, you smile and it lights up our lives and anyone else around you. Parts of Your personality has been shaped by your disability and it is an absolutely precious one.

When you were in the NICU, I would stand by your warmer with bible in hand, I bent my head as close as I could to you, put my hand on you and read Psalm 139. I especially wanted you to hear:

13 For you formed my inward parts;

you knitted me together in my mother’s womb.

My prayer for you Malachi is that you would grow to believe this with all your heart. More than Daddy and I love you, God loves you so much more. He created you for a purpose, above and beyond we can even fathom at this point. He is your creator, and He knows what He is doing. I trust Him with your care, I trust that He made you just the way He wanted. One day I hope you will trust that too and put your faith in Jesus. I love you for who God created you to be, I love you because of who you are becoming, I love you because you are my son, I love you for exactly who you are.