With Mother’s Day just days away, I’ve been thinking about this role that I’ve had the privilege of holding for over four years now (because yes, I absolutely count the year I was pregnant with Grayson as my first Mother’s Day). I’m living my dream; I’m a mom to two beautiful, awesome kids, who challenge, exhaust, and delight me daily. They stretch my patience, my checkbook, and my heart. They are my reminder what is good in this world, and motivate me to make this world better, for them.
In the early days with Grayson, I felt like I was constantly being forced to make really hard decisions, but at the same time didn’t feel comfortable questioning doctors or more experienced special needs parents’ advice. I’ve lost count of how many tests we’ve run, medications we’ve tried, and the number of times he’s been put under anesthesia. Sure, there are things I regret, that I would have done differently had I known then what I know now. But I can honestly say that I did the best I knew how at the time. Sometimes, in my darkest moments, I panic that there are things I did or didn’t do when Grayson was a baby that would change how things are now. Logically, I know this isn’t the case. No amount of time spent on exercises or therapies is going to change what’s going on in his body at a cellular or genetic level. But still, I’m his mom. Why can’t I make life easier for him?
I know that there are people who disagree with decisions Ryan and I have made regarding the care of both of our children. I’m sure there are people who think we’ve put Grayson through too much testing, and that we didn’t try hard enough to keep him eating by mouth. We’ve been to two doctors appointments in the past few months where end of life care was brought up. This is something that is extremely difficult for me to even think about, let alone decide anything. We did decide a year ago that keeping Grayson happy and comfortable was our goal for his life, but what this means as far as concrete lifesaving measures, I don’t know. Of course I can say abstractly “what I would do” but really, we are going to have to decide some day what we will do. With our child. Our Grayson. It’s a lot different when you are holding and kissing the face of the child that these decisions will impact forever. And it’s gut wrenching to think that no matter what we choose, there will be people who will judge us for doing it wrong.
I want people to know that every medical and wellness decision we’ve made for our children has been with a lot of research, discussion, thought, and prayer. And instinct. I think far too often our instinct as parents is drowned out by the noise of the opinions of others. But I truly believe my mother’s instinct is God given and that God has equipped me to take care of the children he entrusted me with on earth.
These are my kids, and I am their mother. I am always willing to talk about what we do and don’t do regarding their care. I’m passionate about sharing what is working for us, especially with those who are struggling with a sick child. I know I’m a good mom, and I’m doing the best I know how with the knowledge I have gained in the past few years. I won’t let the implications that I’m a bad mom, because I’ve made decisions different than someone else did, hold any power. And I’ve come to realize what a precious gift it is to have friends and family love and support me, even when they disagree with choices I’ve made for my family.
And when it comes down to it, it’s all about these precious little people. They are worth the frustrations, the doubts, the sleepless nights, the hours of research, and the conflict. I would do it all again, and I will do it all again.