RA and Me

I wrote a post a while back about having chronic illnesses and being a mom. Chronic Conditions and Momming was written before my rheumatoid arthritis diagnosis.

1. My older sister has lupus and we had the same rheumatologist at one point. Once we discovered this, we thought it was hilarious. There’s a lot of rheumatologists in Louisville, and we ended up with the same one?

2. My grandfather had severe RA. He died in 2016 at the age of 83. His hands were curled up from the severe joint deformities. He took medications for it, but still had issues that weren’t able to be reversed.

3. I am currently taking a mild medication daily. I had to wait for my thyroid meds to be regulated before I could start RA meds. That sucked but things are good in this area. (Short version: I’m on Levothyroxine due to a partial thyroidectomy in 2017.) Joint pain is REAL.

4. My biggest issues? Joint pain in my hands, knees, and hips. Like many others, I’m super stiff in the mornings and it takes at least an hour to loosen up. Hot showers help. Moving around does help but also hurts. Eventually, the stiffness goes away. Usually. If it doesn’t, then it’s a bad pain day, which leads me to #5.

5. I don’t like taking pain meds. They make me tired and nobody has time for that mess. I usually won’t take them unless I can barely move. I’ll use a heating pad, massage, stretch, etc. The pain meds I do have, however, are non-narcotic.

My doctor is pretty smart- probably not a good idea to prescribe a recovering alcoholic hardcore narcotics. She probably enjoys having a license to practice.
Rheumatoid arthritis sucks. I hate missing out on things because I’m tired, hurting, or both.

Pic with Cameron

It’s possible to live life with chronic conditions. I have two. Some days are just worse than others. I can get through them with humor and my support system.

If you have a chronic condition, how do you get through it?

Adjusting to a New World

Many parents, myself included, envision parenting as this wonderful adventure in which kids develop at the pace they should, play instruments and/or sports, learn to drive, go to prom and all that great stuff.

But what happens when those things are altered because of a special needs diagnosis?

Cry a little

The Big Change

Some parents find out about their child’s diagnosis before or right after birth, in cases of Spinal Bifida, Cerebral Palsy and Down’s Syndrome. I know parents of kids with these diagnoses, and it has been life changing for these families. All of them have other kids without any special needs.

The adjustment is hard. I cried my way through Lily’s evaluation for First Steps the day before her first birthday, even though I knew something was not going right. I knew she needed more help than what I could give her. That story can be found in Special Needs Round Two . When her diagnosis of global delays was given, I was even more devastated. The blame game began. It took a lot of talking with Lily’s speech therapist, Denise, to realize that it wasn’t my fault that she was developmentally delayed. We are in the process of getting Lily re-evaluated. At ten, she is still showing signs of issues that we thought she had grown out of. Cross your fingers for us- we may need it.

In Julian’s case, it’s been a tougher road. His psychiatric nurse practitioner, Ann, once said that we have adjusted wonderfully as a family to Julian’s needs. I almost hugged her. I explained to her that it has not been easy and it remains a somewhat rugged path. My question is: Why not adjust? Julian is wired differently and that’s okay. If we didn’t adjust, he would feel badly about himself and I couldn’t bear the thought of this. It would also cause so much chaos for him that he doesn’t need or deserve. It would do the same for the rest of us. Why do that?

He needs the ability to feel okay about who he is, quirks and all. We’ve enjoyed watching him grow and finally develop a sense of humor. Every kid needs that, with or without a diagnosis. In a home with medical issues, this is a necessity.

I have made many mistakes in raising Julian (and his siblings). Even after reading up, trying many different things, therapy for both of us, getting Matthew on board and lots of burnt dinners in the process, things remain interesting. Julian is now 12 and puberty is kicking in.

Learning that your child has a medical and/or physical special needs diagnosis is complex. Some parents grieve the life they feel their child “should have had”. This is a rough one for me, as I’ve never done this. I can see this happening with kids with severe medical problems. A high school friend of mine has a child with spinal bifida and she lives a full life. Instead of being devastated and staying in a hole as some might, Shelly and her kids go out and do all kinds of neat things. Ryan is eight, and she is one of the coolest kids ever. She’s a tiny fighter. Some parents, like myself, are devastated and are not sure where to go next. Some fall into the “research pattern” and find all kinds of information to know exactly what to do.

This can be a great thing- I have read up a lot on Julian’s diagnoses and it didn’t hurt to work with kids with similar issues. (It did physically hurt some days, but that’s another story. I learned a lot from that job.) Some parents, sadly, go into denial. This can be damaging to everyone involved, and I highly recommend seeing a therapist, church member, or another trusted person. If it’s your partner, this can get really bad quickly, and I definitely know the pain of where it can go. Please do what you can to change that path. Talking can help. Easing your partner into information, appointments, and other things can help. Just don’t force them, because that can make things worse.

I recommend reading up, asking questions, and getting all the help from the medical community you can. The more information you have, the more empowered you feel to help your child. Julian’s been very lucky- he has had a great team from day one, because I wouldn’t let him have anything less. I’m a proud mama shark.

Never give up

It’s okay to feel different things- don’t let anyone make you feel different. Julian was diagnosed almost seven years ago, and some days I still feel overwhelmed. As of writing this post, I’m about to battle it out with his school over his IEP because it’s currently not being followed. Some days are better than others. Some days are absolutely great, some are so bad that you want to devour a liter of Cherry Coke, a bag of salt and vinegar chips and call it a day. (Okay, maybe that’s just me. I didn’t do all of that, but I considered it.) If you’re overwhelmed, write it out. Get someone to help you sort out your feelings.

Making The Best of Things

Daily life also changes. Depending on the diagnosis, your child may need assistance with everything, or nothing at all. This can become time-consuming and require an overhaul of your routine as you knew it. Food may need to be altered due to sensory issues- I live in a house with two kids with sensory issues, and I gave up on those battles years ago. Julian won’t eat french fries if he can see the potato skins or if they aren’t super warm. Lily won’t eat anything that resembles soup, any pasta that isn’t spaghetti, mainly because it looks different. Julian actually had a meltdown once over the shape of pasta my father in law used for dinner. These changes can be irritating to make, but they are necessary for the world our kids live in. I’ve learned to look inside Julian’s mind a bit, probably because of my work, and try to see the world as he does. It can get hard, but it’s worth it. Explaining this to others can get even harder, even your partner.

Small steps

It takes time to adjust- it won’t happen overnight. It takes time to learn how your child’s machines work, or how to get the wheelchair to fit in your van. Give yourself space to make those mistakes. I completely screwed up Julian’s 12th birthday party by inviting too many people, which cause him to shut down at the end, but I’m pretty sure he still likes me. He used to get mad at me when I would hold onto him with a death grip in parking lots and large stores, but he had a bad record of eloping. It was terrifying to have to run after a very fast 5 year old, especially in a parking lot. He was seven before I let him walk more than a foot or two away from me. (I never used a leash because I hate those things.)

If you’ve got a kid who takes things literally, you have to change how you talk to them. For example, I once told Julian to drop the jar of jelly he was holding after he was told not to eat anything. I was making dinner and he didn’t need to eat so soon before.

He dropped the jar.

Major mom fail.

Thankfully, the jar was plastic. That would have been an awful mess otherwise. Matthew and I have had to re-think things before we say them, because Julian thinks differently, and so does Lily, to an extent. We are still trying to figure out her thought patterns. She doesn’t quite think on a 10-year-old level, so we have to tread carefully.

Super parent

Final Thoughts and Tips:

If you have to buy things to keep your house, kid and car safe, do it. You’ll thank yourself later.

It really does take a village. I have friends that have kids with all kinds of physical/ developmental disabilities. A few have kids with autism, and they have been so helpful when I’ve needed them.

Being a parent of a special needs kid will make you a different person. I’ve fought for Julian since day one. Lily’s issues haven’t required so much of a fight, but I would do the same for her. It makes you tougher and less likely to take people’s crap.

Breathe and find something that makes you laugh. Comedy will get you through anything.

Get a binder and organize all of your kid’s paperwork. Julian and Lily have their own binders.

You are not alone, and get help if you need it. Take time for you, because your kids need Mom at her best. If you’re tired, sad and cranky, that’s not your best.

If you have other kids, let them be involved in adjustments. It’s not easy to be the sibling of a special needs kid. My kids have been pretty good about Julian, but it can get hard for us as parents. Cameron and Lily have a post about this in The Siblings’ Turn

Allow your child to live their best life. If they can do it- let them. My friend Laura Leigh’s son, Levi, is seven. He is in a wheelchair due to Cerebral Palsy, and he is an awesome kid. He smiles for days, gives his younger sister Presley wheelchair rides and loves school. I let Julian run cross country in the fifth grade and he loved it. We have a rule that his diagnoses aren’t excuses for not behaving. He does have bad days, but he doesn’t get to say, “I’ve got autism, so I get to act like that”, “I forgot my ADHD meds, that’s why I’m like this today”.

Most of all, love and accept your child the way they are. It might sound weird that I wrote that, but it is saddening that many parents don’t. Acceptance and love matters- it’s everything.

Quotes courtesy of Pinterest

Recommended Reading: The Spark: A Mother’s Story of Nurturing Genius

Twin Mummy and Daddy

Raising Boys and Girls: The Differences

My boys were born in 2005 and 2006. I thought I’d never have a daughter and felt a small amount of sadness.

A small change occurred in 2008 in the form of a little girl, Lily. She even got her own post, My Dream Girl

I didn’t think there were many differences between raising boys and girls- at first. I must have been in a sleepy haze or serious denial. Now that I’ve caught up on a few years of sleep, I’m much wiser.

Ladies First…

Zoo pic

Lily at the Louisville Zoo, Summer 2018

I was once a little girl. I couldn’t have been that difficult to raise, right? I asked my mom if I was as dramatic, loud and messy af as Lily is. We call her room “the kid version of “Hoarders” because it’s never clean for more than a day. My mother told me yes, I was loud (I’m still loud at 35, no shocker), dramatic, but not quite at her level of messy.

THANKS, MOM.

Puberty has come for us and the current situation is buying bras. I had to get her a real bra recently, not just the cute sports bras. Yikes. She’s 10. Is this a thing? I skipped training bras and went straight to regular ones.

We’re a bit gentler on Lily. She’s more sensitive than her brothers and still may be developmentally delayed. (She is getting evaluated very soon.) That requires a different mindset. I have to teach her different things- to know her worth as the woman she will become, how to say “no” and not feel bad, caring for others (as in a family, should she have one) and many other things. The boys will get the same lessons but obviously slightly tweaked.

Lily loves clothes and has shown interest in makeup which is a great thing. I can’t wait to see this develop. This is just a glimpse into the fun parts of raising a daughter.

The Boy Brigade

Arch pic

Cameron and Julian in the cart at the Arch

These guys have been full of adventure since birth. They have really lived up to the hype of “boys get into everything”. Once Julian was able to walk and talk, the joint adventures began. They have rode in laundry baskets down our stairs, made a slip n slide on the kitchen floor, slid down the driveway on sleds, gotten injured together (Julian ended up with staples in his head) and many more things.

Now they team up to see who can annoy Lily and Mom the most.

Most of the time, the boys are low-maintenance and I appreciate this. Sometimes. I don’t appreciate them wearing the same socks for four days in a row, using their bed as a trash can or any of the other many gross things they do. Ew. My boys have shared a bedroom since Lily was born. They’re cool with this, probably because they can stay up late, talk and plot to take over the universe.

Science center bubble

Julian making a bubble at the Louisville Science Center

Being the mom of two boys has lowered my shock factor. At this point, if someone isn’t bleeding, broken a bone or the house isn’t on fire, I’m good. As of writing this, two out of the three have occurred- no worries, my house has never caught on fire. Boys have been much easier to raise- they do get mad, they cry, but with a lot less drama involved.

Well, with one. Julian and Lily participate in what I call “The Petty Olympics” to see who can fight over the smaller things. This, of course, is when Mom is done for the day, maybe even the week.

We feed them, keep them clean, medicate them (both are on meds- Cameron takes one for migraines and SVT and Julian has his ADHD meds) and love them. I think they’re doing pretty well. Keeping them clean is a bit interesting- their showers are destroying our water bill. Lily needs a bit more to keep going but some kids do. We’re okay with that.

Magic house pic

Cameron at the Magic House in St. Louis

I’ve been very lucky to been able to have these kids. All jokes aside, they complete my life.

Do you have kids of both sexes? What differences have you seen? If you don’t have kids, what do you think?

Twin Mummy and Daddy

Brilliant blog posts on HonestMum.com

Happy Birthday, Shortstack Blogs!

One year ago, I created a blog. I had no idea if I would stick with it, or just write a few posts and let it fade. I love to write and I’ve always wanted to do something big with it so here I am.

Zoo day

Zoo day with Julian and Lily

Progress Report #2

I haven’t made a penny from this blog. I haven’t gone self-hosted. Why? I’m focused mainly on getting views and loyal readers. I’d rather have that right now. I’d like to know people are reading my work than make money and not have people care.

I write about heavy topics. I know my writing voice is not for everyone and I’m totally okay with that. I’m not for everyone. I do think about my audience when I’m writing. I do appreciate the comments. It hasn’t been easy to build my audience- like most writers, I struggle with confidence. I almost trashed a few posts but put them up anyway. Weirdly enough, those have been some of my best-read posts.

My stats are going up- one month, I hit almost 1200 views. I’m at over 500 likes on Facebook and almost 900 on Instagram. This is growth. I’ve slowed on my guest posting due to the kids being on summer break. The memes I post are no joke- it’s been an interesting summer. I do plan to get back to outside projects once they go back to school- the cats are much quieter. They are great writing mascots.

Sleeping cat

Miss Purr.. sleeping as usual

My posts have gotten longer and more in depth. This is thanks to research, growth in my writing skills and lots of thought. I try to give lots of info without being boring. I’ve been working on my graphics to make those more eye-catching- people like that.

I do have goals- I set new ones every three months. They include posting to mom blog sites once a month, working on a secret project, a course with Savannah from Millennial Mrs. and Mom, along with other things.

I didn’t realize how far my talents go until I started being approached by other bloggers to collaborate on projects. Wow. Me?

My Blog Is a Toddler

I have a one year old blog. It can’t walk or talk but I’m sure WordPress can throw tantrums. I started this blog as a way of helping others- mental health and suicide prevention and awareness. The parenting part… obviously I have a lot to say there, because this is not easy.

I wish so much I didn’t feel the need to write about suicide. There is a heaviness, a hole in my heart that will never be fixed. I write about it so that others know they are not alone. Grief is a horrible thing- losing someone to suicide is something that is difficult to put into words.

I write so that hopefully others think again- I lost a few that didn’t. I write so that people have information to pass along to others if they need it. If one person thinks again, or my mental health related posts help in any way, then I have fulfilled my purpose. I think Jake would be proud of me- he always encouraged me to do what makes me happy.

September 1 is coming quickly and there will be a very special post on September 4.

There’s more to come this year. Thanks so much for reading my blog. I appreciate it more than you realize.

Life Lessons

The words I will never forget #lifelessonsfromjake

The Summer Vacation Recap

It’s been an interesting summer so far at the Sanders house. Sleep has become Cameron’s favorite activity and Lily can finally see her bedroom floor. Julian turned 12 on July 18. I don’t have any pics from the party because it was probably one of the worst ones we’ve ever had.

Staying Home for the First Time

I’ve never been home full time for a summer with the kids. I’ve always worked. This is a whole new adventure for me. Before school let out in May, I started a list of ideas to keep the kids busy. I knew this wouldn’t be an easy task with three kids who have various interests.

It’s a Big City Out There

Louisville is big, and there’s a bunch of suburbs, and that’s where we are. There’s a lot to do, but it can get expensive.

Enter the Cultural Pass. This is offered through our local library and it’s free, so I snatched three of them. Each kid requires one, and I get in free to each place because I’m Mom. Yay. We went to the Louisville Zoo (minus Cameron, because he had a migraine), the Louisville Water Company, and the Louisville Science Museum. We took a cousin and met Sara there with her husband and daughter, Bella. (She and Lily are besties.)

We also went to Henry’s Ark, a free petting zoo about a half hour from home. We love this place. It’s small so it’s not overwhelming. There’s even a few cats. Once we were here and I was horrified at hearing a peacock make noise. This time the peacock was quiet. There were baby ducks everywhere and everyone loved them.

Lily is the last kid in elementary school. The school has a sensory garden and every summer, families help take care of it. This is the last year that we get to help out and it makes my heart a little sad. There’s lots of water and some weeding involved. It rained a lot during our week, so we only got to the garden a couple of days.

We have also been seeing some free movies during the summer like:

  • “Angry Birds”
  • “The Star”
  • “The Emoji Movie”
  • “Boss Baby”
  • “Despicable Me 3”

We also saw “Uncle Drew” for Julian’s birthday.

What’s Next?

School starts in just over three weeks and that makes my mom heart very happy. In fact, we are going school supply shopping later this week. School starts August 15.

What’s next is our long awaited trip to Daytona Beach, Florida. We leave August 4 and will be there for a week. Is Daytona Beach ready for us?