Religion and the Chronically Ill Parent

This post is inspired by Mama Kat’s Writer’s Workshop.

Prompt #1. Throwback Thursday: Choose a photo from a previous June and write a poem or a blog post.

9780763624460_p0_v1_s192x300

This picture dates back to a post written in June of 2011, when my son was four and a half years old. We had picked up this book at a library book sale along with a copy of the same children’s bible I had when I was a child.

Back then, due to various illnesses and conditions I had never taken Tyler to church, except for his christening. In the post I wrote about how I would have to somehow find a way to get myself together and start taking him to church, or else how would he learn about his faith?

Fast forward to the present and I have seldom taken Tyler to mass. I’m either too physically ill or mentally cannot get my head together to get there. Tyler does go to religious instruction and has made his First Holy Communion and Penance, but not surprisingly, he HATES when he is taken to mass during the few times he is taken during classes. In fact, he is near terrified of church. Riddled with anxiety and highly sensitive he is scared of the statues and stained glass, thinks the music is sad and can’t stand the smell of the incense which is sometimes burned. He keeps asking the teacher when it will be over.

I know if I was taking him to church he would be used to it by now. Every Sunday I watch mass on the internet but he refuses to watch with me. He also will not pray on a regular basis.

The classes have done him some good, however, as he does believe in God, Jesus, angels and Heaven.

Personally I have made my peace with the fact that God understands that I would go to mass if I could and does not fault me for it. I feel my faith is strong.

But I was raised in the church, went weekly up until I got sick, and sang in the children’s choir and folk group. I believe faith is a strong resource for people in dealing with life’s difficulties.

But is what I am giving my son enough? Will he have these tools as he grows older?

Many chronically ill parents have enormous guilt over not being able to do as much with their children as they like and church is just one of those things.

I just have to hope and pray that the little I can give to my son is enough.

My Blogaversary!

Inspired by Mama Kat’s Writer’s Workshop. Also part of my first time Friday link-up with Being Fibro Mom!

1. Throwback Thursday: Choose a photo from a previous May and write a poem or a blog post.

On May 19, 2009 I wrote my very first blog post and seven years later I am still chugging along! I won’t say going strong because some of my illnesses have caused me to stop writing for a period and I’ve lost readership, but I am trying to come back!

A lot has happened in seven years, some obvious, some not so, some things I never thought would happen. Tyler is almost ten years old but will always be my little boy, although I am no longer rocking him to sleep!

Most of the things that I didn’t expect to happen were the bad things. In 2012, I attempted suicide and was diagnosed as having bipolar disorder. I have been hospitalized a total of four times, twice for depression and twice for mania.

Also in 2012, with both of us collecting Social Security Disability Insurance (SSDI), we moved to Ohio, where my husband grew up, because of the lower cost of living.

In December of that same year I left my husband of ten years. He also has bipolar disorder but his episodes at that time included anger and rage. I don’t judge women who stay with abusive husbands but the first time an incident happened I immediately began making plans to leave. I also didn’t want Tyler to grow up in an abusive household.

I never imagined I’d be living in Ohio, I really miss New Jersey, but I own a small home and Tyler is happy here. My ex-husband has come a long way, we both have, to the point where we are friends and we even took Tyler to Disney World together a couple of years ago.

I also am blessed to have a wonderful boyfriend whom I met the day I left Grant!

The mission of my blog has never changed: to write a blog geared towards parents with disabilities and chronic illnesses and to write about the challenges we face raising our children. I hoped I’d be able to break down the prejudices towards disabled and chronically ill people who do not appear to look sick. And I also hoped to show people through my life how to be a better advocate for you and your family’s health, whether you are ill at present or what you need to know should something like this happen to you.

As I said, I don’t have as many readers as I used to but when I get a comment from someone telling me they are going through the same thing, or that I have given someone hope, or even when they give ME advice, it makes it all worthwhile!

Birthday_cake_with_6_candles

One of a Chronically Ill Parent’s Worst Fears

I had a pretty good Mother’s Day. Jacques made chocolate chip pancakes and other goodies and Grant came over and of course there was Tyler with his precious Mother’s Day gifts! I had hoped to be able to go for a walk after brunch but I was too nauseous.

With me being nauseous since September, Tyler has had to put up with a lot. I’m in bed a good deal of the time and I usually nap for awhile to sleep through my upset stomach. Sometimes I can’t take him to Tae Kwon Do so Jacques takes him and sometimes I can’t bring him to school. It’s been a long time since I haven’t been queasy and able to do something with him, since February in fact. Sometimes he lies in my bed with me, just to be close to me, even if I am sleeping.

Yesterday Tyler had his last night of religion classes. There was to be a mass and then refreshments to mark the end of the year. Even though I was in bed when Tyler came home from school I guess he thought I was coming. Close to the time when it was time to leave he told me to get out of bed and get ready but I told him I was too sick to go.

It was the first time Tyler ever went hysterical over me not being able to share something with him. “You’re always sick!”, he said. “You’re never able to do anything with me!”

Tyler was so upset, I promised him I would try harder, that we had the summer coming up soon and we would have fun at the pool and doing other stuff. That seemed to make Tyler feel better.

But to be honest, I don’t know if I will be able to keep those promises. It’s easy for someone to tell me to suck it up and get over it, but they are not living in my body.

I’m scared to death that I will disappoint Tyler. Sometimes just standing up is out of the question. What will I do?

Tyler came home early from religion class because he told the teacher his mom was sick and he wanted to be with me. He apologized profusely for crying and yelling but really, why should he apologize? “I know you didn’t ask to be sick”, he said.

I’m worried that I am scaring Tyler for life. That these will be the only memories he has when he looks back on his relationship with me.

Tonight I am determined to take him to his Tae Kwon Do class. This means sedating myself so I can sleep through the nausea and drinking coffee so I’m not too groggy from the meds. I will focus only on getting him to this class. I have to.

Are your kids at the point where they resent you and your illnesses? How did you handle it?

IMG_1790

A Walk With My Son

Every Sunday, on the weekend day I have Tyler for the whole day, I’m usually too sick to do much of anything, let alone get outdoors with him. He winds up spending most of the day on the tablet and I wind up on the couch, feeling guilty.

On Saturday night I asked God if he would make me feel well so I could take Tyler out. There are some rare days that I am not queasy so I know it is possible. I was doing pretty good on Sunday, no stomach issues, and so I asked Tyler if he would like to go for a walk in the woods. He replied, “Yeah, alright!” and I told him I felt good now but that even if I didn’t later I would still take him. The temperature was going to be over 50 degrees!

The whole morning he kept asking me, “How are you feeling? Do you still feel good?”

Before going on our walk we went to Jacques’s church where they were having a spaghetti lunch. As soon as I walked into the banquet room I felt that it was way too hot in there. (Sweating and low grade fevers are also some of my symptoms.) I started to get nauseous and had to wipe my face off with my napkin a few times. I felt miserable. I said to Tyler, “I might be feeling too sick to go, honey.” “But that would mean that you lied to me mom” and I knew he was right.

When I got outside I was suddenly freezing because I was so soaked from sweating inside. We dropped Jacques off and drove to one of the Cleveland area’s many parks. My temperature equalized and I felt better and not too queasy. We parked the car and took one of the park’s trails that I knew would be one of the shorter ones because I was not sure how long I would be able to walk. I am out of shape and have asthma and Tyler, due to his delay in gross motor skills, doesn’t have the stamina to last long either. We are a perfect match!

Tyler had to stop and say “cute dog!” to every dog owner walking and wanted to pet them.

“Can we hold hands?”, he asked me. “Of course!”, I said, knowing that this was a moment to treasure, that someday he’ll be a teenager who won’t want to be in the same room with me!

There were lovely falls on our walk and on the way back I pointed out to Tyler that people had thrown in coins to wish on. He wanted to do it too but I hadn’t brought my purse with me. Then he got the idea to wish on sticks. “I wish for more sticks!”, he shouted. I asked him to get me one. As I threw it in I said, “I wish for more walks with my son.”

If you are a parent with chronic illness you will know how much this day meant to me. And if you are a healthy parent, be grateful how easy it is to just on the spur of the moment decide to go to a park.

Either way our kids won’t be young forever so these are indeed days to treasure.

IMG_1706

IMG_1707

Results of My Challenging Week

I first wrote about this here.

Last week Tyler had full day summer camp and Grant and I decided he would spend the whole week with me since the camp’s location was closer. The week passed quickly, thankfully, and Tyler really liked his camp!

After camp on Monday I took Tyler to the pool so he wouldn’t feel like he was missing out on his beloved water slide! He had therapy on Wednesday and I told him I would take him to the pool afterwards but it was late and he decided he wanted to catch up on his video games! I was exhausted so I didn’t fight him on it!

We did have a couple of nights of trouble. I am trying to get Tyler to sleep in his own bed but lately his fears and anxiety are getting worse. He insists on sleeping with the light on and he got up with nightmares. I tried to settle him down but the sleep medication I take made me so groggy that I could barely stay awake to comfort him! I felt awful about it, but if I don’t take the sleep med I will never get to sleep and then I won’t be good to anyone.

Two days later the nightmares happened again and he wanted to call Grant so I let him. We tried using the techniques his therapist is working on with him to calm him down and they did work. But I was still very groggy. Grant was mad at me. He called me a bad mother, which hurt a lot. I believe I am doing the absolute best I can for Tyler. The next day Grant apologized.

These past two nights he has slept through the night so I am hoping he just had a bad few couple of days.

So I made it through the week! Grant and I let Tyler have a couple of weeks off from school to decompress but now we’ve got to work in speech, occupational and physical therapy activities into his day, along with reading and flash cards. Plus he is still taking Tae Kwon Do. It’s a lot for any parent to do, let alone someone who is chronically ill!

I’ve actually had a couple of bad days where on Saturday I napped for four hours during the day and on Sunday I slept for three. I can tell it’s not from depression and I worry that I am developing a tolerance to my medicine for my hypersomnolence. But it’s only been two days so I shouldn’t freak out, right?

I am not a perfect parent, no one is, and I am not a bad mother, I am a sick mother. Sometimes I have my doubts but Tyler still says I am the best mom in the universe!

photo copy 43

Tyler after his Tae Kwon Do tournament last week, which was a victory for him…and me!