It feels like we are in a new season within our current season. This journey has never been easy yet lately it’s been exceptionally hard. Joey has been healthy as far as viral and respiratory infections go but it seems GM-1 has been getting the best of him and we’ve witnessed more of a rapid decline over the last 6-8 weeks. We rarely see him smile or hear him laugh anymore, swallowing has become increasingly more difficult and junky and congested seems to be his new normal. It is and has been hard to watch. Very hard.
A couple of weeks ago Sam and I felt it was time to tell our oldest son, David (4), about his brother’s prognosis. Up until our conversation he had not been asking us much. He gladly joins his brother for the 10,000 monthly doctors’ visits (slight exaggeration), patiently waits at the chiropractor’s office, regularly offers to prime Joey’s feeding tube prior to feeds and makes sure his stuffed animals are included when Joey needs a breathing treatment. David has accepted all of this as normal and we have been comfortable letting him set the pace, letting him come to us with questions when he is ready. However, watching Joey and the progression of this horrendous disease over the last couple months prompted us to have the most difficult heart-to-heart conversation ever with our innocent, perfectly native four year old.
With tear-filled eyes we shared with him that there is a reason we see doctors and therapists on a weekly basis… Joey’s body isn’t working the way it should which is why he can’t walk, talk, eat or see anymore. In a little while his brother will die and go to Heaven. And while Heaven is God’s home; the best place we will ever know, it will be very, very sad because it means we won’t see Joey until we are all reunited with him in Heaven again. We will miss him terribly, but God gave us tears and each other and somehow, someway everything will be OK.
Simple words sometimes make for the most profound conversations. It’s these simple, heartfelt conversations with my oldest son that have brought most comfort lately. We talk about what we will do, about Joey’s new body; how he’ll be able to play, run and wrestle. We talk about all the candy and ice cream we will eat and the toys we will play with. “When my worry is deep within me, your comfort brings joy to my soul.” (Psalm 94:19) Although it’s not what I wanted there is something precious about sharing your pain and sharing it with your children. Our new bond has brought joy and comfort to my soul.
Somewhere along this journey I have come to accept that Joey will most likely leave us, that God will bring him Home, it’s watching him suffer that has become increasingly more difficult. The helplessness and pain that comes with it is beyond what I can bear, yet God gives Sam and I what we need for each day. Not more, not less, just enough to get through. We will never give up praying for a miracle, but have accepted our son’s prognosis. We plead for mercy – suffering can be suffocating, however, watching your baby battle a fatal disease takes it to a whole new level. For all-the-in-betweens – the questions, doubts and the day-to-day stuff, we ask for peace… the kind that passes understanding.