During this Christmas season, we all get overwhelmed with all the “things to do” to have the most “perfect” Christmas. “Perfect" is subjective, isn’t it? My perfect is likely both similar and different to yours. One of the biggest differences is that my little guy won’t be sharing his biggest desires for the holidays. Nonverbal is tricky; not wrong or bad, just tricky.
Guessing what he needs or what might be wrong is an art. You start with the basics and you overthink everything all day long. It’s not that this is hard, you just desire to bring the needs of your child in the fastest way possible to them; sometimes that feels unachievable and sometimes its like a hole in one. However, even with the unachievable, you never stop trying. There will even be times that you’ll never know what was wrong and you’ll never have fixed it. Seeking peace over the known and unknown is a constant prayer of mine.
This is why the perfect Christmas is a big desire for families like mine. We spend every day hoping we have it right. While we have some communication, it’s all what we program for Hudson to be available to him. All communication is good and I am prayerful that is just the start of more doors opening. Just think about needing a simple hug after a rough day, you ask. I bet you get it, too. I hug Hudson all the time because he can’t ask… and honestly, these hugs are just as much for me.
Because I can’t buy every toy on the shelf, I really rely heavily on Hudson’s team of therapists. They guide me on toys they have at the centers that we don’t have at home. If you have met Hudson, you know his iPad is his true “blanket of comfort”. I want him to enjoy more than a screen and for him to have motivation outside of electronics. It’s a struggle. He loves his movies; so much so, that three iPads have taken baths with him. True story. So one great Christmas present idea is iPad insurance!
Hudson smiles and laughs more than anyone I know. This is the best communication and completely universal. I know he is happy, I know he feels loved. Hudson makes every day feel like Christmas.
Even before Hudson was born, I sang “Silent Night” as a normal part of my mommy-singing playlist. It was right in there with “Rock-a-bye Baby” and “You are my Sunshine”. It always felt right for me to sing this. As I reflected on the words, it’s always been important that my children have these lyrics known by heart.
Silent Night, Holy Night All is calm, all is bright Round yon Virgin, Mother and Child
Holy Infant so tender and mild Sleep in heavenly peace Sleep in heavenly peace Silent night, holy night Shepherds quake at the sight Glories stream from heaven afar Heavenly hosts sing alleluia Christ the Savior is born Christ the Savior is born Silent night, holy night Son of God, love's pure light Radiant beams from Thy holy face With the dawn of redeeming grace Jesus Lord, at Thy birth Jesus Lord, at Thy birth
This song has been sung a thousand times on my lips. And with my two older children, the sweetest memories of cuddles and rocking and kisses fill my head and my heart. But, when Hudson was born, the lyrics had a new take for me. I love all my children equally, but singing this song to Hudson in the NICU made the words even more needed. The whole song. Especially words “love’s pure light”, “Thy holy face”. When we remember whose children we are, we ALL are, we can sing with the Heavenly hosts, “Alleluia”. Hudson was my tender and mild infant that had to fight to live. God made him. God knew he would have an extra chromosome long before I did. God makes no mistakes.
Mary did you know? Mary got to kiss the face of God. Wow. Beautiful. Perfect. And that is how I felt kissing Hudson.. my gift with radiant beams, from God.
Hudson was born with medical challenges, with intellectual challenges and with both seen and unseen challenges… and he loves life. Our children who were born with disabilities aren’t affected by the challenges they face in a negative way. Why does the world seem so clueless to the beautiful within my child? Hudson was born with a great responsibility to be bigger and stronger than his disabilities. He is better and kinder in the life he was given than many who will never face most of what he faces. To be loud and bold isn’t an option, but rather a must. He has to be heard; nonverbal is not unable to communicate. You have to take time to see what he is saying. It’s a joyful sound, music to your ears, when you hear him.
While I desperately pray for nights of conversations and lists a mile long of Christmas wishes, I am so very grateful for my silent nights. Hudson is here, he’s alive. He has dreams and hopes and I get the privilege of watching him work hard to get where he can communicate this to the world… however he can. With the dawn of redeeming grace, our EXTRA silent nights are perfect.
