So very worth it.

There have been thoughts swirling around in my head for awhile that I wouldn't normally make room for on this blog, but I thought it might be cathartic for me, perhaps a little healing.

I've been living in the world of Down syndrome now for five years, and I have this notion that many parents, specifically moms, of kids with Down syndrome have this need to convince others that Down syndrome is the greatest thing on earth. It's so great that nobody else can understand how great it is, so we have to constantly be telling people about it's greatness. I've been one of these moms, but it bugs me. Because, guess what? Sometimes Down syndrome sucks.

When talking with other moms, we can sometimes empathize with one another and acknowledge that certain things are tough. But when facing the outside world it's somehow not okay to be vulnerable. I actually think there are some legitimate reasons that we do this, one being that the abortion rate in cases where there is a prenatal Down syndrome diagnosis is so high (reportedly 70-90%), and we can't imagine life without our precious ones, and don't want anyone else to miss out on life with a precious one like ours, so therefore we don't want to at any point risk influencing someone to choose termination should they be in that situation. We also expect everyone else to work hard on behalf of our kid, not harder than us, but hard. Teachers, therapists, doctors, relatives, friends; we need these people to be on our side, so in no way do we want to come off as complaining and give anyone else an excuse to lower the bar. Also, I hate pity. Hate it.

Of course there are great things about Down syndrome: lessons learned, opportunities given, relationships formed. But once in awhile I need to sit in the sucky parts.

I've been having a tough time with Myles lately. He's fiercely independent in certain areas and needs to be reigned in, which he hates, but when we try to get him to be independent in other areas he won't move an inch. His behavior can be challenging, communicating with him is frustrating, and there are so many times I just don't understand him. I've heard it said that you can love so hard it hurts, and that's how I feel with Myles. I love him as only a mom can love her precious baby boy, and want so badly to take away his challenges. I want to understand him, to calm him when he's anxious, have spoken conversations with him, extend him more grace, help others see him like we see him. I want to be his mom without feeling like I'm failing him.

Myles had a particularly hard time going to school the other morning. He generally likes school once he's in the classroom and settled, but getting him there is tough. He resists going in the classroom, rejects whichever teacher is there to help him, and wants us to go through the morning routine with him. But we don't. We say our goodbyes and leave, even if it means he's crumpled on the floor like he was the other day. So many emotions flood me in these circumstances. Mostly sadness, but also embarrassment, which then cycles into guilt...he doesn't want this to be happening either.

After leaving the school, I called Gilby to give him the morning drop off report and process everything I was feeling. A conversation that of course ended in tears for me as my sweet husband encouraged me with all of his positivity and depth of understanding I sometimes cannot get to amidst all my emotions. As I ended the call, my precocious two and a half year old chimes in from the back.

"Whatcha sad about, Mama?"

A question that makes me want to cry more. "I'm just a little sad because Myles had a hard time going to school today."

She processed what I had said and offered her thoughts. "I think Myles is probably being a good boy with his friends at school."

Even she understands what mama needs to hear.

And so it is. When I meet with new parents on this journey with Down syndrome I never, ever tell them it is easy. But I do always tell them it is worth it.

So very worth it.