Where We Are and Where We Will Be

I haven’t posted in weeks now. When Gavin was in preschool I was pretty organized with this blog and keeping up with all changes, big and small. Since winter arrived, we all made it through both the gloomy, soul-searching days and the exciting, snowy days. Today I find the need to just push the words out through my fingertips and make sense of it all.

Gavin has been in ABA therapy more consistently now. Today actually starts the first day of a more solid schedule. One of his therapists left the center in December so January became an unpredictable month. Now he is back to going to ABA Monday through Thursday beginning at 9 AM and sometimes ending at noon or 3 PM. This is creating issues with his “nap cycle” as I feel like calling it. So we are dealing with that as things feel right, or wrong. The important thing is that his therapy is becoming more consistent. I know it’s all working for him when I see him clapping in the car and listening to us better.

But in other ways, he is not used to it all yet. He is scratching us at times and getting very frustrated. He wakes up in the middle of the night, sometimes almost screaming, and there’s nothing more hurtful for me right now than feeling depressed in those hours. And not just because of knowing how confused and upset Gavin feels and not knowing how to tell him it’s okay, and him resisting me holding him. It’s the overall feeling of the unknown future.

For each year that goes by, I could make a list of the different supplements we have tried, the results of blood tests we have ordered with a handful of different doctors, the notes I have of how long he slept, what he ate, and a picture of the still unsent boxes that contain urine tests and squishy gel packs that have never been frozen.

Gavin is four. Four. I cringed when it was almost time for Valentine’s Day. I knew there weren’t any special plans at the ABA center for the holiday. But I did know that at his preschool, if we was still going there, that he would come home with a paper heart and a pouch of Valentine’s. The lack of these little things crushes me inside. But lately I have to ask myself – is this important for me and our family to experience, or is it important to him? The truth is, it is not important to him. It’s selfish of me to even get sad about these things. Of course I want to experience all of these beautiful, sweet childhood moments just like I did with our oldest son. Of course I want them with Gavin too. But what is most important is getting to the bottom of everything else he is actually feeling. He is often frustrated and seems helpless. He stims and taps and hums and groans. His brain is misfiring. His immune system is overfiring. Gavin doesn’t need a pocket of Valentine’s cards, and I don’t either. We can get those Valentines when he is better and when he knows what they are. I need to help him be healthy, to be aware, and he needs more than ABA therapy. He needs a pocket of miracles.

Or an infusion of stem cells. Gavin is four and this is our year for it. I can’t wait any longer. I kept hoping that if took calcium pills for six months that he would stop poking his eyes so hard with his fingers that his eyelids flip inside out. I kept hoping that if he took fish oil and digestive enzymes and broccoli extract and silica drops and zinc picolinate and only had gluten free bread and only drank Fiji water, and gave him B12 injections, that his body would be functioning and clear and his brain would follow. It just isn’t happening. There’s also a chance that he might have PANS/PANDAS, or metal toxicity that needs detoxing and chelation, or bartonella, or lyme, or strep, or a continuous infection of some other kind, that a multitude of more expensive and stressful blood tests could find. Or we could just jump into an IV infusion of stem cells here in the US and just find out if we see any changes. Step one. Then we could get more infusions. Then if that actually miraculously works, we could look into extracting his own healing stem cells from his own bone marrow, at facilities in another country. It really sounds like another rabbit hole, but of a different kind. And this rabbit hole has the same foggy and mysterious map as all of the other things we have tried.

You cannot always wait for the perfect time, sometimes you must dare to jump.

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