Dear Loved Ones,
We have now been home a full week, and more than anything else, I think it’s safe to say that Josh and I could do g-tube feedings in our sleep if we had to. There have been so many “new normals” to get used to in the past week, and so I am just glad that one of those is becoming more familiar. I would never wish for a child to have to be fed through a g-tube, but I am so very thankful that that little device allows Tage to get the nutrition he needs. Apparently, it is working, because the pediatrician was very impressed yesterday to see how well Tage continues to gain weight. He still needs to gain more, but he is no longer way below the percentile chart for weight…he’s in the 3rd percentile now. Woo hoo! And I’m pretty sure he is carrying it all in his cheeks!
We are also grateful for our beginning meetings with First Steps this week to begin therapies that will help Tage develop. God has used this experience already to make me more compassionate to parents who have kids with special needs. I thought I “got it” just by working in the elementary school setting, but wow, it is so different when it’s YOUR baby. There are so many doctor appointments, therapists stopping by the house, phone calls from home care nurses, phone calls from home care suppliers, phone calls from medical bill collectors, and all the while, I’m feeding Tage every three hours, making sure I got all the right medicines for each particular feeding, trying to distract him while I feed him so he won’t pull out the tube for the third time today, checking on the load of laundry from the mess he made when he pulled the tube out this morning, and washing all the feeding stuff so it’s clean and ready to go for next time. Then, we get on the floor to practice the things we’re learning in therapy, cleaning his g-tube area, changing his diaper, changing his outfit (again), and then it’s time for another feeding. When it’s finally nap time, I set him in his crib, close the door, and come down the stairs while realizing that my shoulders are up to my ear lobes and my neck has record knots in it. So this is what it’s like to have a child with special care needs. This is all still so very new for me. It is exhausting. We are exhausted. We still cry every single day and wonder how we will ever make it through this season. I don’t know the answer to that, but we are trying our best to just take it one day at a time.
Here’s the raw truth: the hardest part for me right now is that Tage himself is the reminder of what we are going through. I love him so, so very much, but watching him all day and seeing his weaknesses breaks my heart. All. Day. Long. It doesn’t change my love for him one bit, but it is exhausting. This is not a pity party, but just truth…because that’s the only way I know how to write. I’m learning how to enjoy my son, to look deep into his eyes, all while knowing what is going on in his brain stem and not allowing that to be my only focus for the day. He is a delight and a gift. I wonder if this is how God feels about me — as He watches me and all my weaknesses — and yet He loves me with an exhausting love because I delight Him.
We do continue to pray for a miracle, and your notes and messages that you’re believing God can do miracles, too, lifts us up. The lyrics that have resonated most with me in the past two weeks are from a song by Tenth Avenue North called “Worn”. Here are some of them:
I’m Tired I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
I love that last line: that all that’s dead inside can be reborn. Leigh’s Disease means that Tage is being affected by brain tissue that is dying, but the Lord, Jesus Christ, defeated death. Dead stuff is no match for Him. He was dead, and He came back to life. He brought multiple people in the Bible back to life. He brings dead marriages back to life. He brings dead relationships back to life. He can bring dead brain tissue back to life. Nothing is impossible with God, and we know He can do it.
But even if He does not, we will continue to serve Him.
Show us your power, Lord. Have mercy on us, we pray. Help us to trust You.