Tough Choices

Deciding what’s best for your kids is a tough job. It’s hard enough just figuring out things for yourself, but when you’re responsible for another little human, it gets even trickier. Each day as a mom comes with so many choices. Do I get my baby out of his crib when he refuses to sleep or let him cry it out? What school should I send my kids to? What’s the best sunscreen for their sensitive skin? If you’re anything like me, the feeling of indecision can be crippling. That feeling is multiplied when you’re caring for a nonverbal, special needs child.

As Gage approaches age 3, we are being faced with more and more decisions about what’s best for him. He’ll transition out of early intervention therapies and into the public school system this summer. I’m doing my best to stay hopefully optimistic that he’ll have a wonderful experience there. But the questions that come into play relate to whether or not he’ll get enough of what he needs. Will the PT, OT and speech therapy they do at school be enough? Will I know enough about what goes on when I’m not there with him? Will I be able to keep good, open communication with all his teachers and therapists at school? Once August rolls around and the new school year is underway, I hope I can answer yes to all these unknowns. Time will tell and I certainly don’t think his new school setting will hinder him, so I’m excited for what’s to come.

Thinking about what’s needed above and beyond school is slightly less exciting. I’m so grateful for a plethora of choices (water therapy, art and music therapy, equine therapy, etc.) but it’s hard to know how much or little we should be doing, and how exactly we’ll be able to do (and afford) it all. But still, there are so many possibilities that give us plenty to look forward to.

What’s much less exciting and much more intimidating is making decisions about Gage’s medical care. After Gage’s second birthday, we started talking more seriously with his neurologist about using Botox as a treatment option for his stiff muscles. We wavered back and forth about it for a while, getting input from his therapists, other parents and of course his doctors. Ultimately we decided to give it a try. Our original appointment was scheduled in December, but Gage got sick and we rescheduled for January. That morning as we were prepping for it at the hospital, Gage had his first seizure. At that point, our focus went in another direction as we scheduled an EEG and MRI to learn more about the potential for seizures to continue. We are still in the midst of all that, but also approaching the rescheduled appointment just around the corner. And I’m terrified.

The last time we had it scheduled, I felt like I had got to a good place and felt confident in our decision to try out this treatment. And strangely, after the whole seizure ordeal, we spoke at length with the doctor, learning more specifics about the procedure, and I was even more at ease that this is something we should at least try. But it was easy to say to myself, “yes we should do that,” when it was plans for somewhere down the road. Now that the appointment is so close, all my doubts are creeping back in. I spent some time over the last few weeks revisiting our plans with Gage’s therapist and doctor. We are actually moving forward with a slightly different treatment now, called Dysport.

To me, one of the scariest parts is that Gage will be sedated for the procedure. This allows the doctor to be more precise with the injections, working with a perfectly still patient.  Before our January appointment, I kept reminding myself that kids get sedated for procedures all the time and thinking of all my friends’ kids who have had tubes put in their ears or tonsils removed. I tried to brush it off as no big deal. When things ended up the way they did that morning, it was a huge reminder that Gage is different than all my friends’ kids. Somehow my fears seemed justified or rationalized, in the worst way.

And here’s where I put into words my biggest fears and doubts, rational or not. These are words I haven’t been able to say out loud or admit to anyone, but the fear is there and it is real, as evidenced by the tears that keep rolling down my cheeks as I type. I’m so scared that something will go terribly wrong and Gage won’t make it through. Or in a less extreme case, he’ll have complications that make things harder on him in the long run and don’t offer any benefit. And I’m afraid it will be my fault, because I’m the one who decided to go through with it. I’m struggling to get past the point of making the call on this one, with hopes for some improved range of motion and capabilities (could he walk one day with more movement allowed in his legs?), which all pale in comparison to simply having my sweet and happy boy with me each day. How could I ever reconcile with myself if an attempt to improve Gage’s quality of life does exactly the opposite?

The hardest part of this decision for me is the elective nature of this treatment. It’s not something we absolutely have to do. Our motivation for trying it lies in the possibility of improved outcomes, and wondering what might have been if we didn’t at least try. It also seems like a less invasive option than some other treatments. But there’s no guarantee it will make things better for Gage. Which I suppose is true of any choice a parent has to make for their kids. There’s no guarantee your baby won’t keep you up every night for their first 9 months (shout out to Caleb Louie) or your water babies won’t end up with a 3rd degree sunburn, despite your best attempts at protecting them.  So we just do the best we can, then we put our faith in God and trust that he is in control and will take care of us.

I hesitated to share this post, but with the appointment approaching tomorrow morning, I just can’t seem to shake my feelings of uneasiness. I’m writing today to ask for an outpouring of prayers over my precious Gage. Prayers that we are in fact making the choices that are best for him. Prayers that the doctors and nurses caring for him are blessed with wisdom, skill and expertise. Prayers that Evan and I will have peace of mind and comfort that can only come from above. Thanks in advance for lifting us up and walking this journey with us.