It has been a rough few weeks around here.
Understatement. Let me try again –
It has been an overwhelming, scary, frustrating, and stressful few weeks around here.
I have been depressed, angry, desperate, and defeated – all within the span of one afternoon.
My son has been in bed almost exclusively for two months, the result of unexplained joint pain and fatigue that just doesn’t add up.
My husband and I have been doing our collective best to just to try to keep up some sense of normalcy, for both of our sons and for our own hearts.
In the last two weeks we have learned some new things, and in the last two weeks, we have been completely amazed at how much actual medical professionals sometimes don’t know. In the last two weeks, I have slowly but surely come back to this realization –
There is no doctor that will be able to just fix this.
When Doctors Don’t Have The Answer
It is exactly what happened with his autism diagnosis. After getting the diagnosis, no one said, “OK, here is how you do it.” It took months of me trying this and trying that, going to this doctor and going to yet another therapist –
It took months of me trying this and trying that, going to this doctor and going to yet another therapist.
It took months to piece together the puzzle that would give my son some relief and a chance to enjoy his life again.
I guess because this has to do with his body and not his brain, I thought it would be different. I thought there would be an easy answer, a next step, a treatment plan, and a medical professional to take charge and help him.
It seems silly now, almost naive.
Because the truth is, my son’s brain affects his ability to interact socially with the world. And the world includes doctors that might be able to help him.
He is 12 years old. The doctors expect that he should be able to answer their questions about symptoms, pain levels, and lifestyle changes. They expect that his mother would not be the one speaking for him, filling in the blanks, and communicating even the most basic information on his behalf. They expect that he will help them, help him.
And yet, that is just not possible.
So they prescribe a medicine I am not sure he will be able to take, and order blood tests that cause him to physically fight me and the phlebotomist. They examine his joints and diagnose what they can prove based on his body and not his mind.
Mostly, the doctors wait. They figure at some point it will get so bad they will finally have the information they need to medically “fix it”.
It doesn’t seem like enough.
But the truth is, I needed the reminder. I needed to remember what I write here on the blog all the time. I know this child, better than anyone else in the world. I know what is his normal, and what is not. I know what works for him, and what requires more effort than it should. I know when he is happy, even when it’s not obvious to the rest of the world. And I know when he is sick and needs help.
Somehow, in the middle of all of this, I forgot. I forgot that God made me his momma – that He is equipping me to mother him and to care for him. I forgot that I have a job to do, and that I have the strength to do it. I forgot that in my deep love for this child, there is an irrevocable Spirit in me that keeps going, keeps trying, keeps loving.
This reminder has been oh so good.
Once it finally sunk in, I woke up last week ready. Ready to find another doctor that might help. Ready to order the wheelchair we need to get him out of the house more, without aggravating his arthritic joints. Ready to research diet changes and essential oils that might alleviate some of his symptoms. Ready to try every means possible to help him take yucky medicines that will help his pain levels.
Ready to fight for my son.
“And let us not grow weary of doing good, for in due season we will reap, if we do not give up.” Galatians 6:9
Shawna Wingert is a former training and development professional turned education specialist, and has homeschooled her two children for the last ten years.Shawna has written four books about homeschooling unique learners and has been featured in homeschooling discussions on Today.com, The Mighty, Simple Homeschool, My Little Poppies and Raising Lifelong Leaners.
You can find her online here at DifferentByDesignLearning.com.