Jude Meets World

We went to the pool yesterday. The YMCA, in fact. They have a swim night for families with disabled kids, which includes us, and so we went. The whole way there we listened to Jude yelling wanna go to the pool? Can we go to the pool? Can we swim with dolphins?

When we said there were no dolphins he screamed. Okay, fine, dolphins. We get there and it is so, so fun. All three boys are having a blast and we know like half the families in the pool from Jude's school, and we are having family time, all together. Priceless.

Then it is time to go home. Jude has to be drug out of the pool screaming. Screaming, Screaming, Screaming. All through getting dressed, all the way home. Goes to bed screaming. Fun time is over. He just can't deal.

He woke up this morning, and asked for the pool. No pool, Jude.
Screaming. Throwing stuff. I have to sit near him and wait while he sorts it out. Talk to him. I know you're angry. I know, you wanted the pool. It's okay. You will be okay. You can calm down, Jude. You are angry, and sad, but you can calm yourself down.

This is the sort of thing that makes me want to hide with Jude, never come out. The image of Boo
Radley, hidden in the basement, haunts me. I feel like a failure. I feel sorry for my other two sons. We can never do anything as a family, I think. Why bother.

You know what? Next time we go to the pool there will be less screaming. And less the next time,
too. And we will go. Because I am brave, and I am strong, and my son will not be hidden away,
and he will learn, and he will grow, and we are a family, and God walks with us, through the valley of the shadow of death, and to the YMCA, and the grocery store, and the park. Jude is going to figure this out, and if his learning process is a little loud, well, the world will just have to adjust to him. Just a little. Get out your earplugs people, here we come.

Signs and Wonders

I am bathing Eden, trying not to look at his swollen knee. I can hear Jude shrieking down the hallway, hear the frustration in Don's voice as he tries to calm him down. Sage comes in, wanting to tell me something, and I snap at him because I am really, truly on overload. I bury my face in a towel, and beg God. Please, a sign, a spark of hope. Show me everything will be alright.

I look around. No burning bushes, no shafts of light. Oh well.

Bertie the Bus got left outside, that is the source of Jude's shrieking. I hand Eden off to Don with instructions to towel dry and head downstairs to the yard. I get outside and poor Bertie is sitting, all alone, on the bench, looking forlorn. Forgotten.

God, I am losing it.

I go inside, and Neil, my pastor stops me. Hey, he says, I have something to show you. Let me get this book. I stand there while he searches for it, thinking that Jude is screaming upstairs.

He gets out a book called, "Holy Listening."
He opens it to a highlighted page.

This is what I read:

"When a formerly autistic child was asked what parents were for, she replied, 'They hope for you.'"

I stand without speaking, and then begin to sob. Neil is used to this sort of display from me, he has known me a long time. I hug him and head upstairs.

Jude is sitting quietly on Don's lap, and Eden is next to them, wrapped in a towel with serious retro '80's hair, and they are watching Winnie the Pooh. Sage is sitting on the floor reading, and I look at them, and I think I am surrounded by signs and wonder and gifts and mercies, and I forget, only counting the bad things, listing them, forgetting the miracles that are right in front of me each and every day.

American Gladiator

There is no lounging around in pajamas. I have to get up, get the coffee going, and jump in and start calling doctors and therapists and fill out paper work and write a social story and make sure we have enough medicine to make it over the holiday weekend.

Silly me, I was thinking we could go to the park or something.

This is not how I pictured motherhood. The whole swimming upstream thing gets old. I get tired, so tired, of being resourceful and networking and planning, planning, so we could get through the day with a minimum of screaming and bleeding and flapping and bruising.

The biggest battle, though, what makes me a true American Gladiator, is self pity. It chases me, hounds me, sneaks up beside me and taps me on the shoulder. It is a snake in my sleeping bag, a tiger in the trees, a hungry lion looking to devour me. A pushy salesman trying to get a foot in the door. I musn't hesitate, I have to say no.

The trouble is, most of my friends are not going to tell me to knock it off. I can trump their hard luck stories everytime. So I have to be my own security guard, or in about 20 minutes I turn into a combination of Veruca Salt and the creature from the black lagoon.

I used to force myself to read articles about Africa, Haiti, Beslan. I would read stories on the Bleeding Disorders website about kids who would love to have the freedom and ease of movement that mine do. It is true that most of the world does not have the access to medicine and therapies that we are blessed with. I remind myself that it is an American perspective to feel I have a right to healthy kids, a vacation and car that never breaks down. But then my neighbors take off on a sponatenous weekend trip to the water park and poof! I am starting to turn all slimy and whiny again.

When Job found out that his children had been killed, he fell to the ground and praised God. Acknowledged that He was in charge, and ultmately it all belonged to Him.

Now, I realize I have a ways to go before I can compare myself to Job, but I think that could be my starting place. God is good. He is in charge. He created me, my husband, my boys, and He loves us. That is the beginning of putting things in order, and making sense of what feels like suffering.

Perspective, sanity, order. Eyes to see. The best weapons a girl could have. So maybe I can relax, just a little. Have some coffee, and ignore the doorbell no matter how many times that pushy salesman rings. Go away. We are just not buying today.

Bleeding

So, if your son gets cut, will he just keep bleeding? Like, until he dies?

No. I get asked that, all the time.

Cuts stop eventually. It is the bleeding you can't see that does the damage.

Eden has had a bleed in his ankle, in the spaces between his joint. Not a big bleed, but a tiny leak that gives him a little limp when he walks. A grimace when he jumps. He runs, though, undeterred.
That's my boy.

More than anyone I know that physical beauty and perfect health are not what makes life fulfilling, but looking at my golden boy running in the sun makes me happy, and it is hard to think of his joints being wrecked and ruined by a slow insidious leak. So off to the hospital we go.

He looks good, says the ER doc. I hate to stick him, but if the hematologist says we gotta treat..
he shrugs. He looks good to me, too, but for all my boldness and knowledge I am afraid not to believe the blood doctor who says we have to treat or Eden may not be able to run again, ever.

It is the small internal wounds that sneak up on us, and cause us damage. We thought we could keep running, that we could ignore the nagging pain, but it eats away. We need blood to heal us, to make us whole. I look at my sons, and this is my legacy to them. I have always known I was incomplete, needing someone else's blood and life to make me whole. It hurts like hell to watch my children as this realization hits them, but there it is. The truth is everyone around us is just as broken. Perhaps we are fortunate that we have no illusions. Sorry, babies, no illusions for us, but there is love, and healing, and peace. Some kisses and ice cream, too. That is what your mama has to offer, and all I have is this little mustard seed to tell me it's enough.