#NaBloPoMo Day 29: I Really Don’t Know What I’m Doing

A few weeks ago, I asked for suggestions on topics to write on, and my friend B left this comment:

I would appreciate any insights you have on balancing (hate the word, cause it’s not a thing, but can’t think of another at the moment) raising a child with special needs alongside your typical children. I don’t even know what I’m asking. Maybe conversations you have with C and N regarding how their roles and responsibilities will always be different than what you expect of G. Or the angle you take conversation wise when C or N realize G never really “gets into trouble.” Etc.

I’ve been thinking about this since she left the comment, trying to come up with some eloquent words or great insight on this topic. And the truth is, like so many other things in parenting, I don’t know.

I don’t know how to raise two children alongside their older sibling who will never be able to play with them, have a real conversation with them, or fully participate in all our family activities.

I don’t know how to explain to my little kids why their big brother can’t walk or talk. We talk a lot about how Grayson’s brain has a boo-boo, and his brain can’t tell his legs to walk or mouth to talk. They know he’s “sick” but how do I convey to a 4 and 2 year old that Grayson’s “sick” is different than when they get sick?

I don’t know how to balance parenting kids with such vastly different needs. I think the hardest part is very rarely can I “parent” them all together, at the same time. Logistically, I have to compartmentalize them into {Grayson} and {Charlotte and Nolan}, and one of those units is usually having to wait, or be by themselves. And Charlotte and Nolan get frustrated because getting Grayson changed and ready to do anything or go anywhere takes a lot of time. And when I’m playing with the younger two, Grayson is always nearby, but by himself. It’s kind of like living with kids but also having a perpetual newborn, in respect to the time and attention he takes.

I don’t know how to truly teach my younger kids how to have empathy for Grayson. Thankfully, we aren’t having the issues we were dealing with a few years ago, but the special needs siblings who live in my house do not behave like the idealized “full of empathy and compassion” siblings I read and hear about. I cut them a lot of slack though; they are still really little, and I know Grayson isn’t as “fun” as their other sibling. Neither of them bat an eye with his retching, drooling, and spastic movements- it’s what they’ve always known. I just try to involve them in as much of his care as I can- they fetch diapers and bibs, put his glasses on his face, and help his bus driver push the button on the remote for the lift.

I don’t know how to really explain all the extra help and attention Grayson gets. Having additional caregivers in our home has always been normal for the kids; Grayson has had night nurses since before Charlotte was born. We have therapists in our house 4 afternoons a week, plus nurses almost every night. And when we don’t have extra people, it’s mom and dad taking care of his every need, because he can do nothing for himself. That’s a lot of adults giving undivided attention to a child and then his younger siblings being expected to do a lot of things on their own. And of course, there’s pushback. And I know that Charlotte especially logically understands that Grayson cannot dress himself and she can, but still, to her, the difference in expectations isn’t fair. And she’s right- there’s nothing “fair” about any of this.

So yeah, I don’t really know what I’m doing. At all. But what parent does? Most days, I feel spread thin and that I’ve failed somebody. I love all three of those kids so much, but always worry if I’ve given each of them the individual attention and love that they need for that day. I guess as parents, in whatever circumstances we are in , we just do the best we can with what we know, and hope everyone turns out all right in the end.


#NaBloPoMo Day 28: December Reading List

After I finish #NaBloPoMo (Three.More.Days), the next installment of my 30 Day Challenge Project is to read every day for 30 days. Hopefully will reinstate a habit that I can carry on much longer than the next month. I used to be a voracious reader, but in the past few years, my reading has dropped off considerably due to competing time-sucks. Also, I know reading makes one a better writer, and I very much want to continue to improve my writing.

I picked December for my reading month for several reasons.

  1. There’s more downtime and I’ll be “on vacation” (ha) for a chunk of the month.
  2. Social media in December is hard for me (comparison is the thief of joy and all that…) so this will be a good reason to cut back for a few weeks and focus on reading more than scrolling
  3. Amazon had some killer deals the past few days and I am stocked up (honestly, for several months).

Here are 11 books on my list to start to tackle next month: any must-reads I need to add?

The Hate U Give by Angie Thomas (I’m currently listening to this one on audio).

Just Mercy by Bryan Stevenson

Searching For Sunday by Rachel Held Evans

This Is How It Always Is by Laurie Frankel

Little Fires Everywhere by Celeste Ng

Blessed Are The Misfits by Brant Hansen

The Art of Memoir by Mary Carr

At Home In The World by Tsh Oxenreider

Leaving Church: A Memoir of Faith by Barbara Brown Taylor

The Disabled God: Toward A Liberatory Theology of Disability by Nancy L. Eisland

Elenor and Park by Rainbow Rowell (bought this on Audible months ago and haven’t listened yet)

#NaBloPoMo Day 27: Zoo Lights

We were invited to the Houston Zoo’s Dream Night- a special night for special needs and medical kids and their families. 

The lights were beautiful but honestly, it was a really tough night. All 3 kids were really tired, and Grayson fell asleep even before we got there. All three of them are usually in bed before 7:00 and we were at the zoo until after 8:00. The other two kids did ok until the last 30 minutes and they completely melted down. We are driving home now, listening to over-tired sobbing in the back seat. 

It’s always such a hard call for us- wanting to do all the opportunities available to us, especially ones where we can include G, but also recognizing our family’s limits in this season. 

I’m so disappointed. 

#NaBloPoMo Day 26: The “Forever” Punishment: An Update

I wrote an article for Scary Mommy a month ago about taking TV away from my kids “forever” after I lost my temper one afternoon. It was published this morning. You can read it HERE (but if you are offended by colorful language, just skip it). Since I wrote the article a month ago, I wanted to give a present-day update on our TV habits since then.

We made it about 7 weeks with no TV/screens at all. As the days passed, it really did get easier. The kids stopped asking for TV completely, and the good habits I wrote about in the article continued. We were plowing through piles of books, drawing and creating like crazy, and playing outside more than ever.

But then, keeping TV away from the kids started to be more about just making it another day than actually benefitting them. And in some moments of the day, it really was punishing me. Charlotte has long since forgotten about the actual incident that got it taken away from her to begin with, and as all parents of young kids know, there are just times when you need space and for the kids to just be quiet. And still. In particular, when Grayson has therapy, I need the kids to be calm and out of his space- and a digital babysitter is a lot cheaper than a human one.

So, for about a week now, we’ve been letting the kids watch about 1 movie or show a day that we choose. We had our Monster party last week and they’ve watched several Christmas specials. What I didn’t expect was how little they would care about what was on the screen. They detoxed, reset, and now the TV just doesn’t hold the appeal it used to. One day last week, I had put on a movie, gone to do something in my bedroom for a few minutes, and came out to this:


These sweet babies were more interested in their library books than their movie (insert all the heart-eye emojis here).

So yes, kids TV is a part of our lives again, but a much smaller part. I’m looking forward to Christmas movies and snuggles with my babies this month. And creepy YouTube toy videos are still banned (forever! for real!). I actually came across this article last month as it was being shared around social media and it totally freaked me out. It’s long read and not very well written, but has some crucial information for parents of young kids on YouTube.

In my case, a less than stellar parenting moment actually turned into a really good change for our family. But I certainly will be more mindful of the realistic implications of my punishments from now on.


How not to watch TV

#NaBloPoMo Day 25: Assorted Thoughts

I’m at the point in #NaBloPoMo where I feel like I’m going to be limping to the finish, and trying to come up with topics to write about feels impossible anymore. So, instead of a cohesive blog post today, here are some assorted random thoughts.

  • I’m having a bit of a vulnerability hangover today from my post yesterday, which, as expected, got a variety of reactions.
  • Ryan took Charlotte to a high school football playoff game today. They left at 8:45 am for the game that started at noon. I was laughing when he texted me at 11:45 to tell me Charlotte said she was ready to go home. Cgameday
  • Something is off with Grayson today. He was up retching a lot last night (and we didn’t have a nurse) and today has just been really restless and whiny. Usually his Veggie Tales and me holding him makes him happy, but those don’t seem to be working today. It’s like he can’t get comfortable, and his tone is super high today. GSat
  • We have been home all day and Nolan has not played with one toy, but he’s kept himself busy. He’s currently sitting on the floor arranging scraps of paper and fuzzy pompoms. This reaffirms that we have too many toys and don’t need any more. Nolanbackpack
  • I finished the kids’ Christmas shopping yesterday, and am feeling so good about the Want/Need/Wear/Read format we are doing this year. Even though what poor Grayson needs a mattress pad- not very exciting. I’m always a little sad when it comes to him and holidays.
  • I can’t decide if I want to do Christmas cards this year. Last year I didn’t, and really didn’t miss doing them.
  • When are we going to put our Christmas decorations up? Ugh.
  • Laura Tremaine posted this on IG yesterday and it really resonated with me. weird

Happy Saturday everyone!

Dear Anonymous

Dear Anonymous,

You left this comment today on one of my blog posts from a few weeks ago.

This explains a lot. You spend your days listening to bitter “Christian” feminists and politics. You are what you eat. It comes out in your writing and countenance. Turn off the bitter feminists, close the computer, take a long fast from political talk shows and open you bible and read. Just take the word and read. You will be a lot less bitter and a lot more joyful. You will put less trust in people and how they walk out their faith. If you spend all of your time watching and commentating on how everyone else is walking it out all wrong then you will miss a wonder relationship with redeeming God who guess what – loves those people too. Could you also have compassion on the people who irritate you the most? Could you pray for them instead of blast them on social media everyday? Take the word and read. Make your daily diet his daily bread.

First, thank you for your feedback and for taking the time to comment. And, as I said in my reply, several things you write make me think I know you in real life, and I wish you would email me so we can have a real conversation about the points in your comment. But, in case you don’t feel comfortable doing that, I wanted to address what you said here, because I’m sure you aren’t the only one who feels this way about some of my writing.

I don’t want to get too defensive here, but you seem to think you know a whole lot about my life and how I spend my days, and how I should be spending them instead. Since I have 3 small children (1 who requires infinitely more care than the average seven year old) and two part-time jobs, please know that I really don’t spend my entire day consuming political opinions. My little people are really needy, and surprisingly, don’t want to listen to bitter feminists with me (Charlotte insists on early 90s pop in the car, and who says no to Ace of Base?).

But, to be fair, when I have free moments, I do listen to podcasts, read the news, and check Twitter. And it really frustrates me when people say the answer to is to not be involved or informed about politics, or as you put it, take a long fast from political talk shows and open your Bible and read. No. Of course, as a Christian, reading my Bible should be a priority to me, and you are right, I need to open it more. But Jesus calls me to so much more than that. There is so much at stake in our country right now, so many lives at stake.

Not involving yourself in politics (especially at this point in history) is a sign of PRIVILEGE, not virtue. If you are not paying attention right now, it’s probably because regardless of what happens with this administration, you won’t really be affected. If you aren’t poor, gay, Muslim, transgender, an immigrant, disabled, or of another race other than white, you are more privileged than you realize. Those of us who are or have a child that fits into one of these categories, really can’t afford to shut off the news and bury our faces in the Bible all the time. And if I am going to be a light in the world, and love my neighbor as myself, I want to know who all my neighbors are, what their needs are, and how I can stand up for justice for them.

I don’t know how to respond to your use of the word “Christian” in quotation marks- obviously, there are women who you don’t consider to be real Christians. All I can say to that is you are missing out on some really smart, brave, beautiful Christ-followers who challenge me daily. And there is room at the table for lots of ideas, lifestyles, and interpretation of scripture in the Body of Christ. I won’t be boxed in anymore to thinking that that table isn’t open to all.

As for your accusation that I’m bitter: Yeah, you are partly right on that one. I’m bitter that the Church that raised me has turned its back on everything I took from it as sacred, all for political gain. I’m bitter that a political party is more concerned about protecting the rights of a 6 week old fetus than ensuring my 7 year old child gets the medical care he needs to survive. And I’m bitter that 81% of the people who claim the same beliefs as me voted for and continue to support a man who brags about sexual assault, threatens nuclear war on Twitter, and bullies other Americans to the point where I won’t expose my children to him. Yes, I’m bitter that I need to hide the President of the United States from my kids.

But here’s the thing, Anonymous. You say I need to be more joyful. For who? For myself, so I can just go on living a comfortable life, while some of my friends and neighbors literally can’t sleep at night because they are so worried about their families’ futures? Or for those of you who are uncomfortable, or tired of me being angry? Is that who I need to be more joyful for? I’ve already been ghosted by a few friends who I guess can’t handle it. And I suppose that’s ok, although it really hurts. And I think we really need to become more comfortable with women being angry. It’s socially acceptable for men to be angry (even in the church) but it is not acceptable for a woman. Too often, we are made to feel like we should just shut up, put on a smile, and go into church pretending like we have the perfect, blessed little life. I’m tired of the facade and I’m tired of being made to feel like my righteous anger is a character flaw.

And as for having compassion for those who irritate me the most. I am trying. I really am. I’ve written extensively about making space for other points of views, following people online of all different political and religious stances, and practicing empathy with those with those of whom I disagree. I make it a point to have respectful but hard in-person conversations with people I disagree with. I don’t always get it right, but I am trying. And as for “blasting them on social media every day”, I hope you do email me to clarify what you mean. I try really hard not to personally insult people on social media, and most of what I post is pictures of my kids (because they are super cute).

I’m sorry if this came off too ranty. And thank you again for commenting- my favorite part about blogging is the dialogue and conversations it starts. But come on, if you are going to shame someone in the comment section, at least have the guts to use your real name.

#NaBloPoMo Day 23: Thanksgiving

Happy Thanksgiving! I hope that your day has been full of blessings and good food. We have had a good day, except for the fact that I pulled something in my back this morning while eating toast (yes, really) and have been in terrible pain all day. But the turkey was good, the kids were relatively well-behaved and were all in bed before 7:00 pm, so I’m calling it a win.

I have so much to be thankful for. My family and home, obviously, but countless other things that I too often fail to express my gratefulness for. These include:

Friends who continue to support me and bear with me through this really weird and confusing season in my life.


Podcasts, blogs, and social media. Say what you will about social media, but it has allowed me to be exposed to so many different kinds of people and ideas. I am a more critical thinker, smarter, and more empathetic because of who I have met and discovered online.

People who can disagree without taking everything personally.

Jesus, who is so much different than the Jesus in the confined box I knew all these years.

My jobs. I love working and the work that I do. Thankful for the flexibility they give me to have a really good balance between work and home life.

Amazon Prime

Medicaid, the program that enables us financially to keep Grayson at home with us and provides the equipment, therapy, medications and care to ensure he has the best, most comfortable life possible.

My children’s teachers. There is no better feeling than leaving them for hours at a time knowing they are loved, cared for, and learning.

Grayson’s nurses and therapists. These women are in our home nearly every day, and all love G and want the best for them. And they are all just genuinely great human beings.

Anxiety medication

Happy Thanksgiving!




#NaBloPoMo Day 22: Making Monsters and Memories

I’m not much into the show and tell mommy-blogging anymore, but we had a really fun afternoon with our best neighbor friends, so I wanted to do a post to preserve the memory.

The kids have been out of school all week, which makes for a lot of hours to fill during the day. My sweet friend who lives two doors down is about 3 weeks away from having her third baby, and her other two are close to Charlotte and Nolan’s ages, so I just have so much empathy for the exhaustion she’s going through. We’ve been trying to have the kids play a lot together, but when we let them just “free play” there is always a lot of intense arguing and a lot of tears. So we decided to have an impromptu Monster-themed craft and movie “party” this afternoon to give the kids a fun few hours but with some structure. It was really easy to throw together and they loved it.

First, we had them paint bags their favorite colors and name their monsters.

FullSizeRender 3

Then, they glued on their monsters’ eyes, tongue, teeth, horns and feet.



Then we filled their monster bags with popcorn, and they settled in to watch Monsters Inc., which none of them had ever seen.




Their attention spans aren’t very long, so we paused the movie halfway and did another craft.



They played outside for a few minutes, then (sort of) watched the rest of the movie.


These four can fight and argue like bitter enemies, but they actually love each other so much. I’m so thankful for their sweet friendship, and that we have such great neighbors.


Purity and Politics

Following the news the past few weeks, as it has been for the past year and a half, has been a shocking, sad, and emotional experience. I’ve been especially disappointed by Christian leaders who again and again have traded decency and justice for political gain.

It first became clear last October, when the Access Hollywood tape was released and then-candidate Donald Trump bragged about committing sexual assault. When that wasn’t a deal-breaker to the culture and leaders who shoved messages of purity and modesty down my throat throughout my teenage years, I knew. I knew I’d been lied to. That all their messages about “saving myself” and “not causing anyone to stumble” were just about power and control. All that sexual purity bullshit doesn’t matter when there’s a political office to be won. Never mind that a whole generation of us who bought their purity culture narrative carry around baggage and shame to this day because of those messages.

There’s been an avalanche of secrets finally being told, lies uncovered and men being outed for the horrible things they have done to women. This is a non-partisan problem, but it’s been so disheartening to see the Christian leaders who supposedly have the moral authority in this country bend over backwards to defend Roy Moore, a pedophile who is also running for a seat in the United States Senate. Last week, Franklin Graham tweeted,

“The hypocrisy of Washington has no bounds. So many denouncing Roy Moore when they are guilty of doing much worse than what he has been accused of supposedly doing. Shame on those hypocrites.”

Who is denouncing Roy Moore who is guilty of doing worse than harassing and assaulting teenage girls? Who? 

Back in August, Dr. James Dobson endorsed Roy Moore, saying,

“I often ask God to raise up men and women of faith who will govern the nation with Biblical wisdom. I believe Judge Moore to be such a man for this time.”

Dobson has not withdrawn any support of Moore since the recent allegations. Clearly, to these men, there is nothing worse than having a Democrat in political office, even if that means electing a sexual predator instead, as long as he’s a Republican. It’s disgusting.

I don’t want to care about Franklin Graham and James Dobson. I went to one of Graham’s rallies in college and even then, it creeped me out how his whole schtick was to get the most college students down for the alter call to be “saved”. And I’ve held a grudge against Dobson since I was a kid and one of his books told my mom not to let me play with Barbies (ironically, because of their bodies).

But I do care because these are men, along with men like Jerry Falwell Jr, Eric Metaxas, and Robert Jeffress who continue to push their political agendas in the name of Jesus, and so many people are falling for it. Meanwhile, there are thousands of women across this country saying #metoo (and now #churchtoo, which is even more heartbreaking and infuriating) and looking for support and healing. And when some of them look to the Church, they see these leaders defending the indefensible again and again, instead of standing up for the victims.

This morning, Rachel Held Evans posted a tweet that sums up everything I’ve been feeling for the past 18 months:


We have to do better than this, and be better than this. Christians and our leaders should be shouting louder than anyone about the sexual assault problem in our country. We should be refusing to support men like Donald Trump and Roy Moore, regardless of their political party platform, judicial appointments, or the economic advantages we may get from their policies.  And we have to teach our daughters about their sexuality in a way that doesn’t shame them or allow it to be used as a means to control them. Starting now, there should be #nomoore, and NO MORE.

#NaBloPoMo Day 20: Toys

We have too many toys. It’s really unbelievable how many we have accumulated in just over 7 years of having children in the house. And it seems no matter how many I purge, the amount of toys never seem to be at a manageable level. Last week, I bagged up probably 80% of the toys in our playroom, just to put away for awhile, or until one of the kids asks for a specific one. So far, they have not.

The thing is, they hardly play with the toys. They like little trinkets, and cardboard boxes, and art supplies. They build with their wooden blocks, and Magnatiles, and wear the dress-up clothes. The rest of the toys just get dumped and scattered, day after day.

With Christmas coming, I’ve been doing some serious thinking about how to give the kids a “magical” Christmas without adding more toys that won’t be played with once the novelty wears off.

This year, I am determined not to get overwhelmed by Christmas. The holiday season is definitely not my favorite, mostly because reality never measures up to expectations. The kids aspect of Christmas is incredibly stressful for me, because it seems like for most of the year, I am constantly trying to minimize/purge/organize and then it all falls apart with a haul of new toys. Of course, the actual opening of presents is exciting, and of course it’s fun for them to have new stuff, but then, the playroom fills up quickly and the purging process starts over again.

I think this year, we are going to try the Want/Need/Wear/Read strategy (I love how Kyla has implemented it for her family). I like the idea of just 4 gifts from Santa/Mom and Dad- it seems manageable on my end and I think the kids will still get to experience the excitement of Christmas morning. I also want to do some experience gifts- both C and N need swimming lessons and Charlotte wants to take karate.

So…talk to me about toys (especially for preschoolers)

  1. I’ve read several times that the less toys kids have in their playroom, the longer they will play. If you find this to be true, how many do you have and what are they?
  2. What are the best toys you have? Our go-tos are blocks/Magnatiles, dress up clothes, and art supplies. What am I missing?
  3. What are some good alternatives to toys that are actual tangible gifts that kids could open on Christmas? I love, love books, but we have a ton, and we get 20+ books at the library every week, so I’m not sure if spending money on a lot of books is what I want to do.

What is your kid gift giving strategy at Christmas? Do you struggle with too many toys that no one plays with?