Anchor of Hope

It’s been a month since my mom died. I’ve pushed myself too hard to stay busy and not feel what I know is just below the surface. I went to state volleyball, I painted my kitchen…I’ve done anything to be too busy to feel.

My relationship with my mom was complicated and I know my grief from losing her will be complicated as well. And in my heart, the wound from losing my little sister, has just begun to close. I don’t want to relive the pain of grief. I want to stay too busy to notice the pain and I want it to be over when I slow down.

I’m overwhelmed as a special needs parent in this moment too. At a time when my emotions need my attention, the emotional side of a rare and fatal disease is straining my beautiful children and they need me more that I could have ever imagined they might need me.

All of these emotions are exhausting and now I know I’m too tired to stay too busy. It’s time to slow down.

A week ago I was in the adoration chapel. I had told Jesus everything on my heart. After reading, I prayerfully journaled. This is what I wrote down.

God is after our dependency, not our perfect discernment. I don’t have to know what I am supposed to do or how long it will take. I only have to depend on God.

The Lord doesn’t promise the removal of darkness but the assurance of his guidance in the midst of it.

Psalms 37:24 “May stumble, but he will not fall, for the Lord holds his hands.”

John 1:5 “the light shines in the darkness, and the darkness has not overcome it.”

I don’t need to be moving forward, I just need to stay where I am until whatever it is He wants for me, right now, is finished. I need just to depend on Him.

He is working on my heart, shaping it even more to be the person He calls me to be.

As I wrote these things in my journal, I looked up and my eyes fixed on this stained glass window, only one of two in the chapel.

It is of the fifth joyful mystery, The Finding in the Temple. The child Jesus remained in Jerusalem without telling Mary or Joseph. Mary and Joseph had to return to Jerusalem and find Jesus. Jesus stayed to teach in the Temple. He stayed where He was to finish the work.

It was a powerful realization for me. Even Jesus had to stay where He was at times. I am where I am supposed to be. I can’t skip this part or the next. My heart will be a better heart when the work is finished.

Max’s Birthday

Today is your 13th birthday, but the story of you started years before that.

It was just me and dad and Lexi. We were happy but something was missing. Lexi and I especially thought so. We convinced Dad too, that we needed a baby, that we needed you.

13 years ago you were born at 10:03 pm. You weighed 10lbs 3oz and were 23 1/2 inches long. Just as we were laughing with you last night, I’m don’t know how you ever fit in my belly the last month. The nurse at the hospital that day thought you might have broken the record for longest baby born at Mary Lanning.

Max Joseph Vertin, 2005

I should have known then that you would always be the one to break the mold.

You are brave and funny and interesting and wonderful, but life for you is not without struggles. Living with Duchenne is a challenge, but you do it with strength and humor and love.

The list of things that Duchenne limits for you seems endless and yet, you’ve tried everything you wanted to. The fact that you love the stage so much and can share yourself so freely is greater than anything I could have dreamed for you. I smile every time I see you perform, especially for the private performance those of us lucky enough to be your friends and family get to see at home or out to eat or at a ballgame!

Father Christmas in Narnia, 2018

I remember a day during the summer you were 4. We had just spent the day in Omaha where you were diagnosed. After travel and tests and all else we endured that day you were exhausted. You slept the entire drive home and continued to sleep throughout the evening. For what seemed like hours I held you as you slept and I wept.

Summer following diagnosis, 5 years old

That day, I was told that boys with Duchenne stop walking at age 12. We both know that not walking will not be the end of the world, just a change in ours; but today you turned 13 and you are still walking. The expectations that specialist put on you so many years ago, never defined you. You have always had the gift to just be you. You are the truest person I know.

We are doing things that have never been done before. You and I both know nothing we try is guaranteed to help, but you try anyways. You also blaze a trail for your younger brothers. You are braver than you will ever know. Sometimes I’m scared and you are the one whose lead I follow.

And son, I’ve never seen a middle school boy be embraced so warmly by teachers and peers and friends. There is magic about you. Your smile, your laugh, your wicked since of humor. People can’t help but love you.

Max and friends enjoying the county fair, 2018

But on this day, your 13th Birthday, know that their isn’t a soul that loves you more than I do.

Happiest Day to you, my beautiful boy!