Five

The first time I heard the term "spirited" to describe my son was at his 1 year-old check-up. The pediatrician looked me in the eye and said "Listen...this is a good thing. Some day he will be a leader, he will do amazing things. But the toddler years? They are going to be impossible."

SHE. WASN'T. LYING.

If you know anything about our story, you know we have been through some ups and downs over the past number of years. That we have been on this endless search for answers to how to best love and help our child who lives life bigger than most people around him can handle. Who feels hard and expresses it. Who is loud and chaotic and huge and never, ever for one minute of being awake stops moving or talking or emoting. Who has a list of food issues that prevents us from really ever going anywhere social. Who needs a certain intense amount of tactile and auditory input to function well but if he gets too much flies over the edge on a dime. It's been exhausting to learn and fail and learn and fail and learn and fail again.

But one other thing she said to us and that has been repeated by a number of professionals over the years is that things might change at the age of five. That maybe some of the allergies and sensitivities will lessen or go away. That some of the chaotic struggle that defines a large portion of our interactions will become milder. That we will have, in a sense, come through. That things will be on the upswing. Not easy or solved, but manageable. (Until the teen years, of course. No one ever promises you anything positive about the teen years.)

And so for 3 and a half years I have had that number in my head. FIVE. We can make it to five. Even on those worst of days...when there have been hours of meltdowns and tantrums, when we have had to pull him from school and church is impossible and our other kids are being affected and we are feeling like failures...and we wonder if the next public meltdown will result in some well-meaning person calling CPS on us...FIVE.

We can get there.

And then over a period of a few days, we get some new diagnoses.

And suddenly, five doesn't mean anything. In fact, there is no new number. There is just reality.

The reality that this will likely always be hard. There might always be therapy. People will suggest meds and judge you for doing them while others judge you for not doing them. IEPs and 504s will now be a part of your life. School will not come easy. And the fighting and learning you have been doing for almost 4 years will continue. Possibly right up until he moves out as an adult. And, because you are a parent, even at that point, you will worry. How will these things affect college? Or his career? Or his relationships? (And today I cannot even get into the side of this that is further complicated by his beautiful black skin and how he will never be given second chances at anything in a world that will start to, any day now, fear him. That's a WHOLE other blog post that my heart can't do today.)

When "spirit" turns to something more and you have been holding on to the promise and hope of relief, it feels like a sucker punch, friends.

Many of my blogs end with some hopeful plan I have devised. Some way I have realized or seen God in the midst of things. But right now, friends? Right now, I really don't have much more to say. We got the diagnoses and then family visited and then my husband traveled and this is the first moment, almost two weeks later, that I have even had to wonder what I am thinking or feeling. To ask what's next. To figure out from where the fight is going to come when I feel so worn down.

As he melted down this morning and I slumped against a wall in exhaustion before 8 am had even hit, I remembered a bracelet that my dear friend gave to me a few months back. It says "We can do hard things." I ran to my room and put it on and read the words and shot her a quick text with those words and asked her to pray. I repeated "I can do all things through Christ who strengthens me" over and over and over until I believed it.

And I realized that I had to sit down and write today - to say the words out loud that I can do this, even though I don't know how and don't have a plan. I had to let go of "FIVE" and mourn its loss, even though there isn't anything with which to replace it.

I suspect in the coming days, God will point me to something. He will use a friend to speak life. I might permanently glue that bracelet to my arm, for goodness' sake.

But today, I come in honesty and say that I am sad and tired and hurting. I want so much for my son to have a good life, a life that is full of love and laughter and joy and hope.

And I don't, at least today, how how to give it to him.