Tag Archives: parenting with a chronic illness

New Adventure: Bio Mat

We ordered a bio-mat. Yes, we wanted an IMRS mat, but the cost difference is too great at this point in our journey, so we got the bio mat instead. We ordered ours through Scott, the Better Health Guy and he has been very supportive through the ordering and delivery process.

Yesterday we all spent a little time on the mat sans lights. The teenager used it full on, lights and heat and everything.

Today, I did the same. He told me that he slept better than he has slept in years. Craving that experience, I decided to try it myself. I used it on the second lowest setting. Lots of negative ions generating. I was on it for well over 30 minutes. Very, very relaxing.

Loved it. We will see what tomorrow brings. I’m going to put the little guy on it. Hopefully it will mellow the little chatter box out.

Blog This SH*#$

Thanks to a dear friend and fellow blogger, I’ve got my fingers on the keys, again. Not that the nudge will get me back to blogging regularly, but today, I will. And maybe tomorrow. Facebook and twitter just seem so much easier. So much faster. But I miss blogging. So here goes.

My sons were never vaccinated. I get grief about it from people quite often. But never from doctors. With the history in my extended family and with my kids living on the edge, it’s just a good thing that I didn’t do it.

But, the whole PANDAS diagnosis/research seems to volley around the issue of vaccines. What does an unvaccinated kid who gets a “strep on steroids” infection look like? How do we treat him?

The answer so far? We don’t know.

So, yesterday, I packed a rental car full of things to do and food to eat and went to see a doctor that seems to get both Lyme and PANDAS, at least a little bit.

The journey was worthwhile, as always. I made him laugh. The little guy made him laugh. He made me cry. All in a day’s work for a mom parenting kids who live on the edge. And he told me that you usually see a connection between a PANDAS diagnosis and vaccines. Not in my world. So it seems more complex, again.

Sometimes I forget how sick my kids are. Especially the little one. I just keep keeping on, and the doctor visits are highlighted with all the good. The “upward spiral” and the “good grades”. And other days, we look at the shadow. The under belly. The sh#%(.

My kid is sick. Some days, I just don’t even want to talk about or think about how complex his issues are. The hardest part is that so far, I haven’t been able to find anyone who really gets what’s going on with him. If I were a different kind of parent, I might just look at him, ignore the dark circles under the eyes and just keep keeping on. But I don’t. I push for answers. I push for him to get well. I hope that the teenagers frankenstein-looking lymph nodes doesn’t mean another flare is on its way, or that I’m too busy helping one kid that I’m playing ostrich with the life of the other. I search for treatments, money, the next great hope for a cure. Heading down to the lab to get some subclass deficiency and immune issue tests. But waiting until AFTER Valentines Day. Blood draws WIPE this kid out.

It’s not one thing. That, I know. If it were, I’d be selling some sort of MLM product that had cured us all. Instead, I’m back to the Rubik’s cube. Or just STILL HERE.

 

Things My Mother Tried To Teach Me

Ten years ago on Mother’s Day, I leaned over to my mother and said, “Happy Mother’s Day, Mama.” She replied, “Shit. I don’t want to die on Mother’s Day.” As if that would matter. Mother’s Day hasn’t been easy since that day. I want to celebrate being a mother and I want to celebrate my children, but having my mother as my mother was such a gift. It’s hard to see this day as anything other than her day. So, in honor of my lovely mother, I am going to post 20 things my mother tried to teach me. Some I learned, some I resisted, some where outright lies.

But she tried. And I love her, still.

1.) Horizontal stripes make you look fat. Vertical stripes make you look slim and tall.

She had this vertically striped dress that was so hideous though. What I wouldn’t give to be able to remind her of that fashion error. So, I’ll say, “Stripes are hideous, Mama,” and leave it at that.

And part two: Always wear patterns. We are a messy lot. You can hide the stains that way.

2.) The Supernatural does exist.

Sometimes, even in a church basement. I love that my mother was a charismatic catholic. I think that is why I love supernatural fiction and urban fantasy. Thanks, mom.

3.) Never speak in public. It’s scary. Could even be life threatening.

My parents were horrified when I joined the speech team in high school. Later, when I coached the team and she was dying (and I was sneaking off from her bedside to still coach a little bit), she wanted to make me buttons to give to the team. SPEECH SAVES LIVES. She believed that speech saved mine.

4.) Never leave the house without lipstick.

Ever

And always carry tissues. Sorry mama, I still haven’t mastered that one. My kids still use their sleeves. Or mine.

5.) Never pass by a restroom without trying to use it. You never know when you will find another one.

Believe me, she followed this one to the letter. Ask anyone. You just never know.

6.) Never leave a pan handle sticking out from the stove. It’s dangerous.

Cooking with an illness induced brain injury isn’t safe either, Mama. Just sayin’.

7.) Never lick a knife.

Not even a table knife. I live on the edge. I let my children lick knives. Even when they are taking blood thinners. It takes particular skill to cut your tongue with a table knife.

8.) God exists. Even if it feels like God has abandoned you, God likely hasn’t.

Yeah, mom. Not buying it.

and part two: It isn’t where you find God, it’s that you find God.

Okay. I’ll buy this one. If I find God in music and in children and in every breath I take that doesn’t cause pain, score one for you.

9.) Never put important things on high shelves.

Thanks, mom. I haven’t mastered this yet, but I need to, since I have one fully frozen shoulder, and one on its way. This never mattered to me when I was well. I was 5′ 8″ to your 5’4″ then, but now, you are right.

10.) There’s safety in numbers.

She didn’t like the idea of settling down with just one love interest. At least not for her children that were in high school. I kept telling her, “Mom, if I have four boyfriends, I look like a slut.” But she was right. It kept me out of trouble.

11.) My husband and son were the most amazing gifts in my life.

Again. Right. They drive me crazy, but she was right.

12.) That my father would have been proud of me.

I don’t know, Mom. It’s easy to make shit up after people are dead.

13.) That I needed to be a writer. I was born to be a writer. And a hospice nurse.

Okay mom. How about a chronically ill writer? Is that a compromise, because it seems a little like a cruel joke. But I guess you knew. Somehow, I would end up tying together sickness/dying with writing.

14.) Be fair. Don’t play favorites.

You weren’t very good at this mom. And you know it.

15.) Perms give you a sense of security no matter how bad they are for your health and well being.

You were so wrong on this one, Mom. Wrong. Wrong. Wrong. The last few years of your life, you looked great. I know you went perm free because of me, and for your health, but you looked great!

16.) Coffee enemas are wrong. Just very, very wrong.

Again, mom. Coffee enemas are the bomb. I can’t believe you wouldn’t go for it. “I’d rather die than do coffee enemas.” Yep.

17.) Don’t play with matches. Because my sister did and lit her dress on fire.

Thank you, Barb, for lighting your dress on fire. I would have learned the hard way. I did put a fork in an outlet in 4th grade. Wish you would have warned me.

18.) God has a plan for your life.

Again, really? To be 46 years old, have a mitre valve problem, and who knows what else going wacky in my heart. In addition, I’ve been carrying around a variety of infectious disease for a really long time. Not buying it, mom. God’s plan seems a little mean if you ask me.

19.) Don’t ever have a difficult conversation with someone after dark. Just let it wait until the morning. Then everybody can sleep.

Yes, mom. Brilliant. I wish I remember that more often.

20.) Stick by the people you love, NO MATTER WHAT. Even when you die, never leave them.
Yep. Your were right mom. This is the one that impacted me the most. You will never forget me. You will not leave me orphaned. You will never forget your own.

Happy Mother’s Day, Mama. I wish you were here. We could fight about the perms, Jesus, coffee enemas, and knife licking. And I would savor every word.

Choosing Legal Guardians

So, everyone writes a will, right? And, choosing guardians for your kids, you all do it, right?

It is often a sister, a brother, a close friend. People say yes, because it is highly unlikely that both parents will die.

What about our situation? Two years ago we started to get really serious about looking. Robert’s heart was doing bizarre things and I was blacking out with my blood pressure. Then we got caught up in the diagnosis, the treatments and then more diagnosis and treatments and we didn’t want to face the fact that we could both die, and that could was more likely for us than for most couples.

We’ve had a few volunteers for Aidan, but nothing on paper. We’ve had a couple of offers from friends of friends, nearing retirement, but with our isolation situation, we don’t see either of those couples very often.

So, it feels like we are back to square one. Our oldest son is 14, so in a couple of years, and with support from our families and friends, he could push for emancipation, and stay in the house.

We could send them to London to live with their “brother,” but as soon to be newlyweds, I don’t think that would be best for their relationship. Not to mention that fact that grieving the loss of your parents would really suck in another country, even if the people you are living with love you like their own, and you love them the same.

All of my siblings are all old enough to be or are grandparents. Robert’s siblings don’t have lives that would be served by dropping 2 kids into their laps.

I have a few friends who have offered to wash my hair, but take my kids? I can’t even imagine. Maybe the volvo mechanic. Or one of my physical therapists. Their dentist is a nice man, maybe him.

I’m don’t want my kids to end up in foster care because they are too hard to handle, or too medically fragile.

So, what’s a mom to do, except to stay in denial about it, continue to rest to get well (instead of fight to get well)?

That has to be my new mantra. I am going to rest to get well. Allow healing to happen rather than fight for it and push for it. Because I have no other answers.

How Can You Help A Mom With A Chronic Illness?

We all know how to do it when a friend has a baby, or when her mother dies. We support her, bring her meals, give her breaks from her children. We know what to do.

But when a friend has a chronic illness, we don’t apply those same rules. The whole idea seems to paralyze us.

I recently read a statistic that 50 million people live with an Auto-Immune illness, with 75% of those being women. I don’t know the stats on how many of those are mothers, but I’m willing to bet a whole lot.

So, how do we help each other? How can we, as a community, support those moms when they need us?

I don’t know what kind of help other people could use, but I’m interested in hearing from my readers what might help them as they work within their limitations. I’ve got a few suggestions.

1.) Don’t ignore the illness.

In order to put yourself in her shoes, you need to talk to her about her life. I can’t speak for every chronically ill mom, but I can tell you that my life is lonely. Overwhelming. Chaotic. Oh, and did I mention lonely? Most of my life happens online. Most of my interactions with people happen at doctor’s offices, physical therapy centers or through teaching. But I get worn out. When I get home and get the little guy to bed, I usually sit online or on the couch watching movies or more likely, episodes of sit-coms on dvd.

2.) Ask Questions.

This Chronic Illness isn’t catching. Really. Tragedy isn’t contagious. We don’t have bad luck. Talk to them about it. Ask them how they are. Ask them specific questions. “How the hell did your husband get it?” That is okay to ask. “I’ve heard Chronic Lyme isn’t real. What’s with the whole controversy?” Just ask. Please, please, please ask. “Why aren’t you well yet. . it is just “Lyme Disease,” right?”

3.) Include her in things.

She doesn’t have the energy to plan anything. So, invite her. Going to the beach with another family is a heck of a lot easier than trying to manage on her own. The same is true for any outing. Let’s face it, kids of chronically ill moms stay home a whole lot.

4.) Don’t assume that you have to help every day, or even on a frequent basis. Assume that little bits of help go a long way.

5.) Just because you haven’t been able to help out in the past doesn’t mean you can’t help now. Just do it. She isn’t mad. It is NEVER to late to notice her and to offer support. Never.

6.) Assume that the tasks of daily living and managing her own care are enormous for her. Come over and go through paperwork, fold laundry, help her fill out something in her mountain of paperwork. When your energy is limited, you don’t always have energy to open mail. Everything takes effort.

7.) Bring her a magazine. Buy her a month of netflix. Bring her a box of epsom salts for a nice bath. Amanda, a mom from my little guy’s pre-school brought me an Entertainment magazine two months ago, in the middle of the big bartonella treatment. I’ve read it dozens of times. And, I’ve enjoyed it.

8.) Loan her movies. I’m working on Arrested Development and Gilmore Girls, two series that Sarah M. has gotten me hooked on. They keep me company. Just make sure you come over and pick them up. Returning things and remembering where things came from is really stressful.

9.) Host something for her. This could be a clothing swap. A school supply drive. A family benefit event. A meal train. A playdate schedule. Everything takes 10 times more for her to do than it does for you, and she is always operating from an energy deficit.

10.) Offer to come over once a month, season, year to babysit so she can go out with her husband. Marriages take a huge hit when you have a chronic illness. In fact, few survive.

11.) Accept that her illness is real, that she lends no drama or exaggeration to her situation. Commit to your friendship rather than running away.

12.) Give her the gift of your time and commit to it weekly/monthly/yearly. Know your own boundaries. That kind of commitment helps you hold your boundaries and helps her have something to rely on.

13.) Send her a gift card, put money on her account at the grocery, send her cash in the mail. When you have a chronic illness, you can’t work with the same intensity that other people can. Budgets are beyond tight.

14.) Agree to call her friends. One by one, call them for a commitment. Pizza making night, once a season? Drop off your CSA veggies once a year, when you are vacation? Run to the co-op for her once a week? It isn’t how much you do, but the idea that she can count on something, to take some of the pressure off.

15.) Help her make new friends. Having a chronic illness doesn’t make you the homecoming queen of the neighborhood. When she is out in the community and people ask her how she is, she says, “fine”. No long stories about the MRSA infection or the mycoplasma. If you ask more directly, she will tell you, but she doesn’t like to focus on her illness, regardless of how hard it is to push it out of the sight lines.

Regardless of what you do, do SOMETHING. Her illness is likely invisible, but she shouldn’t have to be. I write this post from my perspective of a chronically ill mom, who is parenting chronically ill children, and who is married to a man who is in chronic pain as well. These suggestions apply to child-free women and men, and to chronically ill kids, fathers or partners of chronically ill spouses. Again, regardless of what you do, do SOMETHING.

Next post. . your ideas. If you have a chronic health issue, and are trying to parent young kids through it all, comment and let me know what would help YOU. And, if you are a friend of someone who is chronically ill, what do YOU do to help? Or, are you one of the friends who have run away? Help US all understand how our illness pushes you away. It is a complex issue, I know. Feel free to comment anonymously, and if you don’t want me to approve the post, let me know and I will just take the information into my next post.

Parenting While Chronically Ill

So, over the past year or so, I’ve written a whole lot about how hard it is to parent two chronically ill kids. But, I never really take time to talk about the other side. What it is like to be a Chronically Ill parent, period.

Sick kids aside, I’m having a hard time parenting.

I have a Master’s Degree in Human Development with an emphasis in Youth Spirituality and Creativity. I think most, if not all of the students I worked with for the years before I had my son, would tell you that I was damn good at what I did. I taught parenting classes, held teen parenting groups, taught crisis prevention and intervention. I worked with teen violent offenders, sex ed and I coached contest speech. I was good. I still am.

I thought I would be good at parenting. I think I was until I ran out of energy to be consistent.

We had a social worker over the other day to help us with behavior issues and structure. I’m a little resistant to their “time out” strategies, which were proven years ago to be an ineffective cooperation tool and steeped in punishment and shame, regardless of how sing song you make your voice.

I don’t like the idea of having people teach me what I already know how to do. It isn’t the issue, me not knowing how to be a good parent. The issues are physical. They have to do with no energy to parent.

I’m exhausted from being ill. I can’t get dressed without help. I’m too tired to work. I’m too tired to cook. And, I’m too tired to be a consistent parent.

How do I change that? What do I do? I know when I’m at my limit. Last spring I sent the kids to my in-laws and my brother for a week over spring break. But, getting help for people who are chronically ill is hard. My kids spend a whole lot of time alone. We are isolated. Like shut ins. We run necessary errands. Doctor appt. School visits. We rarely do anything fun. The little guy averages one playdate a week. I can’t go to pool parties and birthday parties and storytimes, so my son doesn’t get to. He isn’t getting the life that the big one had. We don’t have the resources to go to the museums, the parties, the shows, the parks.

I want to be in a place of abundance. Of joy overflowing. Of hope and belief. I’d like to find a balance between the sad, exhausting truth and the denial of Pollyanna. I just want it to be easier and instead, it gets harder.

My children test me, they hurt each other, they piss me off. I get mad, I offer consequences and I’m too exhausted to follow through. I make chore charts and med charts and I beg for their co-operation, and then I realize it is just easier to let it all go. . easier just to do it myself or to not do it at all. Easier just to beat up my body by doing it myself.

I can’t do it all, but I don’t know how to simplify. I work on getting help through my insurance, and it takes an acrobat and a track star just to get 1/2 half there. Half way there isn’t helping.

And this is not the life I want for me, or my kids.

I want my kids to go to the Zoo and the MIA and The Walker. I want them to go to Valleyfair, enjoy a family vacation (we haven’t had one since 2006), have their mom go to one of their concerts. I want my son to attend Kuk Sool Wan, or Karate, or Capoeira, or Trapeze class. But I’m tired. And the funds just aren’t there. This week, for the first time, the big kid rode the bus home from his choir rehearsal. I’m too tired. I just can’t keep it up.

And yet, my children deserve to be normal. They are fighting these infectious diseases with all their strength, and I so wish they could have more fun. But I’m tired. Parenting is so, so, so hard.

It’s the weekend, again. Come Monday morning I’ll see all the pics on Facebook. The lake visits, the parties, the BBQs with friends. I’ll see the adventures, the fun, the park times. I love seeing life happen. I love facebook, but I long for an engaged life. One that isn’t full of isolation and disengaged kids.

I want to be invited places. I want to go on dates with my husband (we haven’t had one in over two years–and you wonder why things are so hard), I want to go on a yoga retreat, or a silent meditation retreat, or just have a day to myself.

But this is my life. I’m just trying to be graceful and open myself to all the lessons, but it is so, so, hard when I can’t be the parent I want to be.

Kids are resilient. Even though the science shows that they will likely never be free of Lyme & co, I hope they will fully recover from the inconsistent parenting.

Next Post: Ways to Help A Chronically Ill Mom