Every mom I know has said it at one point or another – I just want to get this right for my child.
Yesterday, my son’s doctor told me it was time to make a decision.
He continues to lose way too much weight.
His antibodies are getting lower and lower.
The trend is not good. We need to treat before he gets something worse.
She is a very, very good doctor. Although it is not her specialty, she humors my son when his behaviors interfere with her exam. She laughs at his jokes, even when they are not remotely appropriate for the setting. She is gracious and kind – to him and to me.
She also only sees the immunological implications of his treatment.
I see it all. I see what it will take to do weekly subcutaneous injections or monthly on-site infusions. I know what will happen to the treatment plan if he has a mood episode this fall. I see all of it.
She trusts this, which is why she’s telling me it’s time to make the decision.
Feeling the weight of all of it, I looked at her and said, “I just want to do what’s right for my child.”
Every single mom I know has thought it and even said it at one point or another, special needs or not.
When it comes down to it, it’s what we all want – the confidence that what we are doing is best.
It starts on day one of motherhood. A newborn trying to nurse, doctors recommending an extra treatment, not knowing what to do.
We go through the years, trying to figure out diets and discipline, school options and sleep strategies, all echoing the same heart in all of it – I just want to get this right for my child, my children.
I Just Want To Get This Right For My Child
I thought about it all night long. What to do, when to start these new invasive treatments, how to help my son prepare.
Here’s the thing – None of it feels right.
No thirteen year old boy should be doing any of this.
No teenager, finally getting back on track after three years of medical and emotional turmoil, should be in this situation. But this side of heaven, sometimes right is more about figuring out what is the least wrong.
This morning, I will make the phone calls. I will schedule the appointments and confirm the insurance coverage. I will do all the things on the list the doctor left for me.
More importantly, I will hug my son. I will smile and laugh with him. We will take his dog for a walk and maybe even swim later.
I will enjoy him and tell him how much I love him, how impressed I am with him.
Because I just want to get this right for my child.
My son was recently diagnosed with CVID, a primary immunodeficiency. If you’d like more information about this diagnosis, I highly recommend this resource.