Today, Eve had a surgical consultation and we are moving forward with a g-tube (feeding tube). This is our second consultations with testing in between and we will have one more test before the surgery. Many small decisions have lead us to choosing a feeding tube for nutrition and medications for Eve. Thankfully she can continue to eat by mouth, which brings her great pleasure. I wish this decision was easy and without concerns, but Eve’s unique medical needs make even this decision not a perfect solution. Only time will tell if the positives outweigh the negatives.
I was thinking about this place we are in, as I was driving home from the appointment. So much of my life parenting a child with medical complexities and special needs is about figuring out these “not perfect” situations. It’s hard to know which decision is right when each presents risks, complications and worries. Each medication added may tip the scales in the wrong direction or the side effects may be more than the benefits. Or when considering things like school placement, sometimes none of the options are a perfect fit and we try to find the okayest choice we can live with. We bend, we compromise and we arrive at the solution that leaves us wanting more for our child. Sometimes there are no perfect choices.
One thing I realized today as we discussed the options with our medical team is that we have to go with what feels right when the evidence balances out on both sides. I’ve learned to trust my Mommy gut pretty well and I can usually find a path that feels right. Sometimes the decision doesn’t end up the way we hope for, but we know that the decision was made with the best of intentions and it may serve a purpose later on. Many times the decision will be the right one though and that is always my hope.
Parenting a complex child doesn’t come with a road map, we make our own trails that at times will merge with others, but most of the time it can feel isolating. When there are no perfect choices, you find which one brings you the most peace. That is usually the right one.