It has been a few years now, since my son received his chronic illness diagnosis.
I remember all the research the doctor referenced. The higher risk of lymphoma, the decreased life expectancy, the recommendation for a wheel chair. It is all seared into my brain, plain as day.
It has been a few years now, since we started treatments. Physical therapy, anti-malarial drugs, a reduced school schedule. It has all been very, very helpful. He has responded well, and has been an incredible example of courage and faith to me. (Seriously, this kid has chops.)
The treatments are working. We are so deeply grateful.
And in our check-up at the hospital last week, almost all the news was positive.
His doctor is amazing. She is encouraging to me, and so casually sweet to my son, I want to hug her. She is always quick to point out progress and to reassure me that we are doing everything we can – we are doing it all well.
But in this visit, she also had to remind me what “chronic” means.
Because even though the inflammation in his body has subsided significantly. Even though he can get out of bed most days, and have fun with us. Even though the wheelchair means he can go on field trips and even to Disneyland.
Even though he is doing so well, there are still parts of his illness that are progressing. In addition to his hip, his ankles and left knee are showing signs of arthritis. His eyes need to be checked again. We have to wait and see what’s next.
When my boys were babies, I was terrified as a new mom. I can remember telling myself over and over again,”This too shall pass.”
It made me feel better – like this experience of motherhood was just a temporary condition.
I had no idea that the babies grow up, but your mother’s heart never stops beating for them.
Sure the circumstances change. The issues change. What I fear is different. What they experience is different.
But it does not pass.
In fact, the part that I thought would pass, deepened. The reality of being a mom, the desperation to help, the frustration over not knowing what to do or how to help, the anger, the fear, the joy, the love, the calling – it has all grown bigger than I would’ve imagined.
Why “This Too Shall Pass” Is Not Helpful For A Special Needs Mom
My son has a condition that, unless it is firmly God’s plan to heal, will not pass.
“This too shall pass,” is not something I say anymore.
Why? Because it does not encourage me the way it once did. I no longer think it is even true.
I can’t live my life hoping to just make it through to the other side. I can’t live my life wishing away the reality that is today. I can’t live my life hoping for different.
I want to live my life with joy, right where I am.
In the midst of pain, I want peace.
In the midst of fear, I want faith.
In the midst of today’s messiness, I want love.
I want to cherish the moments I have with these boys. I want to be present in them – not praying for these moments to pass.
I can rest in the knowledge that God has us right where we are supposed to be.
I can rejoice in the promise that He made me these boys’ mom, and He knows them, just as they are. He knows me, just as I am.
He put us together with purpose and love.
No matter how tough it may be sometimes, there is no way I want this time to simply pass.
This post originally appeared here on Not The Former Things in 2016.