In the last twelve hours, our lives have been turned upside down yet again. Toby is going to need surgery to fix a VEPTR rod that has come off. He's in pain, his back is bulging, his cheeks are flushed; it's hard to see your child in pain. We've been through this before (Photos from December 2012)
This is basically what his back looks like right now. I often chuckle when I open the Time Hop app on my phone this time of year. As I scroll, there are photos and reminders of all the past surgeries. October and November are tough. I cry out to God, "Why does this always have to happen this time of year?" This will be rod surgery number twelve in the past three years. He's needing heavy pain medications to be comfortable and not complain.
I am reminded of something our orthopedic surgeon said to me last year,"With VEPTR, you have to prepare yourself for a tsunami of grief." I know this and yet it sneaks up on me, unaware. Today the surgeon told me, we have at least 8 more years of this until he can stop growing and fuse his spine together. Life has been so stable as of late, I thought maybe we wouldn't have anymore "unplanned" complications. this wasn't in my plans, only two growth surgeries a year. I was wrong.
Now, that we have a preteen in the house there is another aspect to this special needs journey: a young man's questions and opinions about a situation that is also turning his life upside down - upsetting his plans. How do I help him understand that God is faithful even through this? He even asked me what Toby would be like without VEPTR. I can't imagine, he would be a shriveled boy, digestive issues, pneumonia; I can't imagine. The alternative is much worse than what we face now.
What is the lesson to be learned here? My mom thinks maybe God is asking me to slow down. We have been moving 100 miles an hour since spring. Even though I don't realize it, she hears it in my voice - the exhaustion and sometimes the sadness, the pressure of being overwhelmed, of always trying to get it all right. Mom's intuition: I'm thankful for her insight. Maybe I do need to slow down? (So, we did today - we are baking today, school has taken a back burner).
I still don't quite understand why it's this time of year; when we face holidays and the barrage of winter birthdays of four members of our family. The time of year when I want things perfect, presents, parties, celebrations of "God with us". The past several years, I am always playing catch up instead of being ahead of the game. A time of year that I would rather be giving back to others instead of on the receiving end. I worry that our friends will tire of our trials and run as they may be asked to give to us yet again. I hate being needy.
By no means will this be a major surgery for Toby; we've been through much worse. He should be in and out in a day. But, I dread the process, I dread the bucking up for his sake, and the grief and sadness that paralyzes me later. I dread the feelings of uselessness and not wanting to do anything when there are responsibilities to fulfill.
Then, I look back and remember all the times we've been through this. God's story has been woven through time and time again. His love, His faithfulness, His sustaining. I couldn't do this without Him. I am guilty of sounding like a broken record, of the theme of this journey - verses that God gave me long ago in the PICU when Toby held on to life by a thread:
Psalm 40:1-3 "I waited patiently for the LORD; And He inclined to me, and heard my cry. he also brought me up out of a horrible pit, out of the miry clay, and set my feet upon a rock, and established my steps. He has put a new song in my mouth - Praise to our God; Many will see it and fear and will trust in the Lord."
But, maybe Mom is right. I do need to slow down - to enjoy the moment and let the unimportant things go. Mom's usually right. I pray that many will know of God's love and put their trust in Him. I am thankful for those that know our journey, and hopefully see this in us:
"Never once have we ever walked alone, never once has He left us on our own. You are faithful, God, You are faithful." It's a good time for me to slow down and remember His faithfulness ever present each day.