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.
6 thoughts on “Doing and Choosing the Best I Can”
1) If you make a mistake with your kids, God will hold you and Ryan accountable, not another person.
2) If someone else makes a mistake, they will not be there to clean up the mess – trust me, I learned the hard way on this one.
Bottom line, God entrusted your and Ryan with these precious gifts and you two get to make the choices. Other people need to get right with God and get off your backs.
Too bad that don't make vaccines for a**holes!
Are people telling you that you have not made the best decisions for your children?!?! That makes me seething mad. That makes me want to punch someone in the face. Seriously.
I hate that feeling, of being judged for my parenting. In the last few weeks my inlaws have utters the phrase, “that isn't how we raised our kids,” to me three times, using their judgy voice. THREE TIMES. I know it was three times because each one stung. I know they judge me for working outside the home, for sleep training my kids, for sending my daughter to the school she is at. They think we should make all the same decisions they made, but we can't. Our circumstances are different, THE WORLD is different. Our kids are different. I know, in my brain, that we're doing the best we can with what we have at our disposal. Still, it hurts to think that people we love judge us as doing it wrong.
You are right. You ARE a good mother. And you make every choice out of love for your children. That is all anyone can ask. You are doing a fabulous job, and it infuriates me that anyone would ever dare to suggest otherwise.
Loving your kids is the best way to make the hard decisions. With that love, you will always make the right one one for them. I have been reading your story for a while now and can read between the lines that you love with everything that a mother has. Remember that just because some one else says it, it does not make it true. Keep the faith!
End of life care… God, I just hate that for you. I'm so sorry that you're being faced with that.
You are the best, God-chosen parents for your kids. We all know that, and so do you.
God makes no mistakes. None. And He sent Grayson to you. Of all the women in the world He chose YOU to be a mom to that precious baby boy. And I believe He knew the choices you would make before He sent Grayson to you. Grayson is BLESSED to have you as his mother. Don't let ANYONE take that away from you. Not family, not friends, NOBODY. You keep trusting God and asking HIM what He wants for Grayson. He never fails. Blessings!!
A mother knows her child best and does what is best for them. Always. None of us know the answers or the future and we are just doing the best we can. I am so sorry if people have been judgmental, it is wrongly placed, and I think that often judgement means people need to be looking in and not at others…