Last night was another tough one in this 16 year journey. Another night of lost sleep and tears. Where was the grace to keep going?
I (Erica) feel like the words came best when talking with a friend recently. “I have had an infant for 16 years”. That aspect alone is what feels exhausting. There is never a moment where we just “do life” without considering the enormous weight of Kennady’s disability. Every trip in the car, every dinner with friends, every trip to church we are deciding if we want to try and pull it off. Night time is when there isn’t even a “can we”, it is just “do”. Kind of like Yoda, “there is no try, only do”.
Last night, after I had tucked her in, set up her bipap (like a cpap) and turned it on, the wrestling began. Trying to get the mask to fit right and not leak. The mask that helps her to breathe and get a good nights sleep. The mask that mocks my efforts to get it all right.
I had started the process at 10:30pm, shortly after going upstairs I looked at the monitor and saw her fighting the mask, and the mask leaking. Dragging myself back down the stairs to reposition the mask, I thought I had it all situated, dragging back upstairs to make sure the boys were in bed. After getting the boys tucked in, I went to my bed and once again found her mask leaking. Back down the stairs to reposition the mask, again. Back upstairs to try and crawl into bed, because this 40 year old body needs a good nights sleep to function without my head spinning. Shortly after dozing off, quickly approaching 11:30, through the monitor I can hear the mask leaking again. The frustration is overwhelming. I just want to sleep. I go back downstairs to work on the mask. Kennady is settling into a good sleep, but the mask isn’t staying where it needs to in order to work. I adjust it, and wait. Maybe this is the one that did the trick… Headed back to bed. 11:45, mask leaking. I go back downstairs to adjust the mask, or possibly burn it…
I reposition her, reposition the mask, and it leaks some. I finally bent over on the side of her bed, putting my head in my hands and cried. I was so frustrated. I just wanted to sleep. I just want to not worry about her safety as she sleeps.
Standing there, head in my hands softly crying, I heard the shuffle of feet and the gentle hand on my shoulder. “What’s wrong, momma?” I quickly walked with him out of the room so that we don’t wake her up. “Nothing is wrong with her, I just want to sleep”. He just hugged me and told me he loved me. That’s it. No trying to fix something that he knows he can’t fix. Just being there for me.
I wonder how these moments will shape my kids. What do they see when we are weak? What will they remember when they are grown? Do they realize that God is working through them to actually be a part of His solution? In this literal dark hour, God used one of my kids to bring me light. He delivered an allotment of God’s grace that was just enough for today.
Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:8-10
My heart hurts with love and compassion. There are no words that I can say to make it better, except “how can I help? I love you all!”.
Love you too!! ~Erica
I visualized u going up and down so tired about to fall asleep but the momma wasn’t going to rest until her child was comfortable and safe. I’ve seen that scene many times in my life.
Ms Kenna forever young.
My friend Erica Steel I love and miss our talks and the awesome friendship we shared. ♥️
Love you, Wynnel! <3 Erica
Your grace is truly beautiful. I love you!
<3 Love you! ~Erica
Thank you for sharing this very raw moment. I love you so much.
Love you so much!! <3 Erica
Thank you so much for this, Erica! As I struggle with a currently non-verbal son who seemingly can’t stand sleep, I understand being exhausted. Even now. But God’s grace.
Praying for God to give you the strength and peace you need. <3 Erica
Erica thank you for being real and allowing us into your weak moments. When we are weak He is strong. My children are grown now but it reminded me of a time when my two youngest were 2 and 3 1/2. I was going through a divorce from their daddy and I was devastated but I had 5 little ones that I had to still function as a mom for. I remember several evenings when I would get their dinner served and retreat to the bedroom while they ate. I would throw myself face first into the bed and try to muffle the sobs I had held in all day. Several times my Abby and Ana would come into the room climb on the bed and lay on my back and pat my back. No words exchanged. They literally covered me with a blanket of the Lord’s grace until peace came. They are now 22 and 21. All five of my children saw many displays of my weakness over the years and it has created a very special tenderness in our relationships. Our children get to see the Lord’s glory in our joys and struggles and that is an awesome thing! Bless you Erica and family.
Thank you so much for sharing your story, Patricia! God is so faithful to us, especially in moments when we feel overwhelmed. <3 Erica
All the love to you. and your sweet boys.
Love you!! ~Erica