Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, October 24, 2007

Many hats

Like many moms, I wear many hats. Household engineer, chaufer, pooper scooper, etc. One of my other hats is psychiatric care nurse. This is an old post I wrote 2 years ago, shortly before my son turned 17. A friend of mine asked if I would repost it, which I am with permission from my son.

If you don't yet have kids of your own, I want to warn need to go back to school! If you already have kids of your own, start taking night classes. You should be focusing your new training on a masters in psychiatric medicine. That is because as a mom, nobody tells you that you need to be prepared to deal with these kinds of issues...just in case.

My 16 year old son has, among a long list of other things, schizophrenia. When you go in your child's room and you find that he's writing letters to the "sleep demon" voices in his will instantly make the hair on the back of your neck stand at attention.

I bet nobody has told you there may come a day when that beautiful baby, the one who greeted you with huge smiles in his crib each morning, would one day threaten to chop you into tiny pieces as you slept.

I bet nobody has told you that little boy who was so proud of himself when he learned to take those first steps would one day use those same feet to run away over and over again, leaving you at home to worry in the dark. Is he cold? Is he hungry? Is he alive? Did he finally find the bridge he's been talking about? I bet nobody has told you that some kids attempt suicide at a very early age, and that when they go to bed at night you don't know if they're going to get up again in the morning.

I certainly never thought my morning ritual would include the emotions it does now.

Each morning, when it's time to wake my son up for school, I stand outside his bedroom door willing myself to open it. I open it slowly, holding the knob firmly to have something to hold onto should I find the worst.

Because of the angle of his bed and the way he sleeps, his foot is the first thing I see every morning, and every morning the first thing I check for is the color of that foot. Is it blue? Grey? Does it flinch if he hears me?

I step around the tall dresser that is right by the door, too see if his face is showing as he usually sleeps with it covered. If I can see his face, I wait before I say anything. I want to see him......its the only time he is at peace...when he is sleeping. Sometimes if I look closely I can see the baby he was 16 years ago.

But most of the time I can't see his face so I'm forced to say his name. Softly....I say it softly...I want him to remember my voice is not always harsh and frustrated. Sometimes it is soft and loving...."Tyler....Tyler...." I hate that he doesn't hear me right away. It adds yet another moment of fear. "Tyler, are you awake?"

The moan of a sleeping teenager brought back to consciousness is music to my ears. But I'm not out of the woods yet. I have learned.... from a very difficult experience of course... that the "moan" can mean he's so drugged from an overdose of something that he's unable to speak, and that I have just minutes to call an ambulance.

I have to get him to talk.

"Do you have anything going on after school today?"

His answer, though mumbled, lets me know all is right for the moment, and I can go on with the rest of my day.

Unfortunately, I have been known to let my guard down too soon, like today. No, he didn't try to hurt himself. Instead he threatened to hurt me. To put an end to MY suffering. With eyes clearly possessed by something evil and very foreign, he stared me down and dared me to challenge him. Instead I locked myself in the bathroom and called the police and an ambulance to take him away.....again.....

What I would give to have that smiling toddler standing in the crib waiting for me. What I would give for that.......


My son went on to spend a year in a secure psychiatric facility learning to live with this disease called schizophrenia. A year of phone calls "They're killing me! You abandoned me here! You're the worst mother in the world!" to be followed the next day with "I understand why I'm here. This is the right place for me and I'm getting better." The cycle is vicious and difficult for everyone involved.

He'll be turning 19 in just a few weeks. He no longer lives at home. He does have a job and talks about finding another. He has the same hopes and dreams that every other 19 year old has. As is common with schizophrenia, at the moment he is "well", but can at any time swing into the world of intrusive thoughts and delusions. He's trying very hard to live a normal life, and I'm very proud of all the hard work he's put in to get where he is.

Update 2009: My son's life continues to cycle through good and bad phases. He's turning 21 next month. In the spring of 2009 he attempted suicide, and almost succeeded. Found in a puddle of blood, he was taken to the hospital where he stayed for several days. We were able to convince the courts to order a 6 month commitment. During this time he's been through both drug and psychiatric treatment. His commitment is over soon, and he'll be on his own again. So far he's taking his meds, which allow him to stay in this world (both physically and psychologically) hold a job, and get along with people. He calls me a couple times per week just to check in. I love that! I pray for him every single day, and remind myself God loves him even more than I do.

Update 2010: My son is doing very well right now! He's holding a job for the longest ever (4 months!) and living in a townhouse he rents with 4 other adults he rarely sees. Something that is good for him. Right now, life is good, and we hold on to the good times with everything we have!

1 comment:

Anonymous said...

Leah, I am having trouble posting. Thank you for writing into my post. I would like to get into contact with the friends of yours whose daughter passed from strepB who won the lawsuit. My email is and home phone is 830-997-6291. Thank you so much for posting to my page. How did you find it? Tanya