Stomach Acid. Inspiring, Isn't it?

It's 4:20am and I have just spent the last 20 minutes gargling and rinsing after waking up lying flat with a mouth full of stomach acid. You see I fell asleep on a stack of pillows practically sitting up, but gravity had it's way with me last night. It's been happening frequently on my vacation because I forgot to pack my wedge pillow. This time it was so awful, I'm too freaked out to go back to sleep.

I have to admit, I don't follow all the rules of Reflux. I have coffee in the morning. Occasionally I eat onions. Last night, I had Ice cream. I usually do not eat at least 4 hours before going to bed. I was planning on staying up to watch the movie Paul with my brother, but I crashed while I was putting my son to sleep. He's on the tail end of his separation anxiety phase and until he's completely asleep, he's got a death grip on my arm.

He's about to start the school year next week. He's progressively getting better and will soon have no problem falling asleep on his own. I know I'm supposed to just let him cry himself to sleep, but I just can't. To be honest,I have separation anxiety as well. He stays with his dad every other week. I hate joint custody. I feel like I'm cheating or something because he's with his dad 2 weeks out of the month. Shouldn't I be enjoying my free time?

I think the root of the problem is that deep down I feel like I will be making up for time I haven't lost yet. Let's be realistic: I have two progressive diseases. I plan to live another 60 years and although I don't believe in God I can still hear her laughing.

I'm afraid of what I might miss, so that extra 8 hours a day I spend with him while I'm sleeping will somehow make up for it. I also take every opportunity to drop some knowledge on my son. He has a great vocabulary for a 7 year old. I don't give him nick names for private parts when he asks me where babies come from. I tell him the truth about how he came into this world 8 weeks early, but it's a happy story because I got to meet him 8 weeks early. It's amazing how one can learn to spin a story about an event that scared the shit out of my family, into an amazing story of how strong I believe this little boy is.

You see, although my health is an ongoing sometimes soul suckingly depressing fact of my life, I am one of the lucky ones. We all know someday we are going to be gone from this world. Anything can change in a minute. No different that a completely healthy person stepping in front of a bus. But for me and probably many like me we are very aware we are living on borrowed time. Every minute is a gift. I've squandered my share, but to finally get to my point, I use every teaching moment I can with my son. I also forgive myself for giving into his separation anxiety issues at night when he goes to sleep.

This started out as a rant about Reflux, but like any good therapy session, it shined daylight on the underlying issue. Not my son's separation anxiety, but my own. I make any moment I can a teaching moment and just for now, it's okay to indulge myself by listening to him sleep at night. This phase is in it's transition with him. He will be going to bed on his own anytime, but just for now I'm going to take advantage of the extra hours I get with my son, even though he's asleep, because every moment is a gift.

Normal Mom

Happy Friday Everyone:-)

First, I want to apologize to those with Sarcoidosis for not mentioning I have it in the following story about my son. Scleroderma is more noticable in me and this is the true story. I'm not sure if mentioning one disease to my son at a time is the right idea, but 2 seems a lot for a 6 year old to handle. I haven't quite figured out how to tell him that part of it. I will keep you posted. Really, I think Scleroderma would be interchangable with any disease in my story. One disease isn't worse than the other. They ALL suck.

I posted a picture on Face Book of myself holding my son. The reason- I always felt self conscious when holding him the way I had to because of the condition of my fingers. I’m still self conscious, but I’ve come to a place where it no longer bothers me. The self consciousness is more like- stare if you want, I’m busy.

Before I had my son, I had stopped touching other people except for handshakes. I’m completely the opposite about handshakes. I love sticking my hand out just to watch someone’s reaction. Cheap entertainment for me, but I digress. My interest in touching stopped sometime in the 90’s. I’m not sure when, but one day I just stopped touching people. I shake hands when I meet people, but anything close or intimate- not so much. Simple things like putting a hand on the shoulder of a friend when she was crying or upset felt useless or fake to me. I was much better with hugs.

I didn’t really notice my aversion to touching others until the first time I held my son. I picked him up so awkwardly, I was afraid I was going to drop him. I touched him, and my heart broke when I realized I could touch him with my knuckles, not my fingertips. There are ways I could touch him with my fingertips, but to pick him up or hold him, I had to use my knuckles. I never missed touching anything until then. I became worried I wouldn't be able to do the things a normal mom could do. I became depressed about it and didn't even realize my behavior had changed. I was told constantly by friends, family, my son's pediatrician, and my shrink how good a job I was doing at being a mom but I just wouldn't buy it.

Now that my son is 6, I look back and here's what I do know and I want every mom to know, disabled or not. There is no such thing as a normal mom. I thought my son was adapting to my disabilities, but the truth is he didn't have to adapt to anything because I'm the only mom he knows. There was so much I put into my head about what I couldn't do, I forgot that there was so much I could do, especially in public. I made myself feel like a freak show and would miss out on simple activities so I wouldn’t draw attention to myself.

Kids don't judge. My son never thought anything was wrong with me. I allowed my mind to make a bigger deal out of things than they were. Every parent has something different about them. It could be hard to spot or in plain sight, but there's always something. Sure, disabled parents have personal obstacles and for most, those obstacles were there before they were parents. And really, parents who aren’t disabled have their obstacles too- so right there, the playing field becomes level. Disabled or not- parenting is challenging, frustrating, painful, smelly and will scare you right out of your shoes(Wow, I really had to work to clean up that last one. Thank you, Dr. Seuss.) Wanda Sykes used to talk about what parents told her about having kids, "yeah... but there worth it." She had no children at the time and called it a conspiracy by parents to recruit more parents. She was right. I think if all parents knew exactly how tough it was to be a parent, the human race would've been extinct a long time ago.


Now, I'd be making a huge omission if I did not mention my son noticed my hands were different at a very young age. I think it was before he could talk. He would take one of my hands and try to straighten them. Sometimes he would catch me off guard and it would hurt like hell. I would gently loosen his grip and tell him, "Mommy's hands don't work that way." His curiosity was satisfied with such a simple answer he would move on to something else. As he got older, he started asking questions. The answers started out simply "That's just the way Mommy's hands are" then became, "Mommy has Scleroderma.", followed by a simple explaination. Once he had that 75 cent word in his vocabulary, the questions became more complex, but at weird times. It was actually kind of funny watching him wrap his head around it. This was a typical conversation,

"I need to sit on the couch, this floor is not very comfortable."

He'd ask, "Mommy, is it because you have Scleroderma?"

"No Honey, it's because the floor is cold and hard."

About Scleroderma, I kept my answers simple and honest. I did not want to worry or lie to him, but simple worked well and still works today. That short attention span kids have really comes in handy sometimes.

When he was 5, I laid it all out for him. I sat him down and explained Scleroderma the best that I could and made sure he knew I was going to be okay, no matter what. It took him a while to process it, but I think he understood then and understands it now as best as any 6 year old can.

Short story long, I posted the picture because a person with finger contractures holding their kid with no make up on (Warning) is rarely seen. So there you go. Check it out. Parenting

Thanks for reading.
For more reading:
Parenting and Disability: Disabled Parents' Experiences of Raising Children
(I haven't read this yet, I just found it on Amazon. If anyone has read it, leave a comment about it. Thanks)
Foundation for Sarcoid Research
Scleroderma Foundation
Scleroderma Research Foundation

Big Changes for my Little Guy

I guess he's not so little anymore. He starts 1st grade tomorrow. I rearranged his room. We went to the store last night and I gave him a budget to buy toys. He picked them out, we brought them home and he got to open one. The rest he will get to play with AFTER he goes through his toys and picks out what he does not play with anymore. The, "I'll buy you new toys" thing no longer works. My little ADHD guy needs to see the toys as a reminder when he looses interest in cleaning- which is about every 20 minutes. When he gives up, he goes to the kitchen table, asks me if he can open them,I remind him to get back on task and he does. We'll see how long this technique works.

Custody and Luaus

So a few weeks ago in mediation, my ex decided to try to get full custody of our 6 year old son. He told the mediator because of the severe contractures of my fingers, he felt I could not take care of our son. He could provide no conclusive evidence as to why other than, "because I say so". He managed to make the mediator angry, to my amusement (later). So a judge ruled in my favor for joint custody one week after mediation. My ex apologized on the way out of court, not to his credit- just to my amusement. So that's that.

On to a Mother-Son Luau at my son's school tonight. I'm wearing short sleeves and I am very self conscious about it. My hands look like out of place drumsticks on to end of my arms. If it was any other event, I would put a long sleeved t-shirt under my dress on, but what kind of chicken shit would I be wearing a long-sleeved shirt to a luau? That's no example to set for my son, right? So, despite my groans about it, I'm just going to go for it. For the record, I really, really don't want to. I feel like I'm jumping off some cliff all in spite of my own vanity.