Yesterday we saw Grayson’s Mito doctor to discuss whether or not we should move forward with hip reconstruction surgery. I was fully expecting Dr. K to make the decision for us- to tell me definitively yes, he needs this, or no, it’s too risky. After waiting 2 hours past our appointment time before we saw her, I was exhausted, starving, and ready for answers. 

I think one of the hardest things about raising a kid with medical issues is making decisions for his care that have risks, unknowns, and no real “good” options. 

This has been an incredibly hard week. Mercifully, in the past few months, Grayson’s disease and health issues have been in the background- always there, but not the focus of our thoughts and worry. He’s been stable- no major illnesses, no hospitalizations, and it’s been months between seizures. We’ve really been cruising right along with him (or so we thought).

Tuesday he had a routine appointment with his PM&R doctor (physical medicine and rehabilitation). Although I had several things to address with her, I really didn’t think this was going to be a “big” appointment and even briefly considered rescheduling because I have been so sick (pregnancy) this week. There’s never any warning at these appointments as to which ones I find a waste of time and parking fees and which ones knock me flat.

Lately, I’ve felt like Grayson has been more uncomfortable than usual. It’s hard to get him into a position where he looks comfortable, and even when he’s in his chair, he doesn’t last more than a few minutes without whining and squirming. The tone in his body is so high- he’s stiff as a board and his body fights getting into a sitting position; he arches his back and straightens his legs when I try to get him to sit anywhere, even on my lap. And he leans to the right anywhere we put him.

I brought all this up to the doctor and we at first discussed some options- increasing his Baclofen (a medicine he takes for spasticity), Botox injections, or surgery for a Baclofen pump, which would bring the medicine directly into the spine. Then she asked me if he’d ever had any x-rays of his hips. Yes, over a year ago before his SPML surgery. She went to the computer to try to find it, couldn’t, but found an x-ray done in December in the PACU to confirm his GJ tube placement.

The x-ray showed two major issues (neither of which were brought to my attention in December). The first is Grayson is pretty severely constipated- his colon is distended and his abdominal cavity is filled with “old poop” were her words. She felt his abdomen and confirmed this is still the case. The second issue is his right hip is completely dislocated. When she showed me on the x-ray I felt sick to my stomach.

I feel so horrible/guilty/sad about both these issues. Grayson poops every day, so I had no idea constipation was an issue. In fact, almost all the Mito kids we know struggle with this, and I’ve always felt lucky that he didn’t- or so I thought. The hip dislocation shocked me too- the SPML surgery a year ago was supposed to prevent this. I almost started crying right there in the exam room.

Our short term plan is to do a bowel cleanout at home this weekend (3 days of non-stop poop- anyone want to join us?!) and see how much this relieves his discomfort and positioning issues. Once we do this, we will reevaluate in a few months the Botox and Baclofen options. We have an appointment next week with an orthopedic surgeon to discuss our options for the hip. Our doctor seemed to think the only long term solution would be to do hip reconstruction surgery, which would be major and invasive. I want to avoid this if at all possible, especially since Grayson doesn’t walk and doesn’t require weight bearing on his hips (that and his spasticity were most likely the reason this happened). A major surgery equals major risks for a kid like Grayson, and we will really have to evaluate the risk vs. benefits of surgery. I’m not sure what (if any) other options there are, so I’m trying to wait until the appointment to really obsess about this. If you pray, could you please pray for clarity on whatever decisions we need to make for Grayson regarding his hips? As always, we are only concerned with his comfort and quality of life, but sometimes how to achieve that isn’t quite clear.

Since Tuesday, I’ve been a mess. The emotional toll of all this, combined with my awful nausea and vomiting that seems to be getting worse rather than better, has just about done me in. I had a mini-breakdown at my OB appointment this morning, and realized I’ve been disconnected from this baby- all I’ve been focusing on is how awful I feel. I don’t think I was supposed to have an ultrasound today, but after I tearfully told her everything that was going on with me and Grayson, my doctor took me into the ultrasound room and said, “Let’s look at your baby.” I’m so grateful she did. I saw my baby that 4 weeks ago was just a blinking dot on the screen and now actually looks like a baby. He or she was wiggling and moving like crazy, had a perfect heartbeat, and was measuring once again to the day- 11 weeks, 2 days. Life truly is a miracle, and never gets old, even the third time around.

I’ve gotten away from writing about the day to day happenings of life, and want to get back to doing more of that again. I know in the years to come, I’ll appreciate my efforts at documenting the every day, normal details of our family’s life. 

I haven’t written in what feels like a really long time. The truth is, for the past three weeks or so, the internet has been a really, really demoralizing and hurtful place to be, and I’ve been trying (mostly unsuccessfully) to distance myself from this crazy vaccine war that’s raging on social media.

I don’t want to publicly discuss my position on vaccines and the decisions Ryan and I have made for our family, with the full support of our pediatrician. I am more than happy to talk about it privately for anyone wanting to engage in a respectful conversation, but in my experience, internet debates go nowhere and many times escalate to nasty very quickly.

It’s the nasty I’m concerned about.

WHY do people think they have license to be so cruel just because they are behind a keyboard and computer screen? Why is it ok to literally tell a stranger that you hate her, that she is a horrible, selfish mother and should have her kids taken away just because of a choice she’s made for her family? Why do people think it’s acceptable to wish harm on someone’s child because she thinks his mother is a crazy anti-science idiot (but has no clue the journey that family has been on or that family’s medical history)? It’s bullying.

It’s been said a million times, but it probably needs to be said a million more: we are all doing our best. The medical decisions we’ve made for our family (especially Grayson) are the result of hours of research, consulting with medical professionals, prayer, and intuition. I have many friends who have done the same; some of them vaccinate fully on the CDC schedule, some selectively or delay, and some don’t vaccinate at all. We all love our children fiercely and are doing what we feel led to do. You don’t have to agree with, or even respect someone’s choice, but no one deserves to be the target of hate speech. And really, do hateful words ever change anyone’s mind or bring them over to your side? No.

Please just know any time you post a snarky comment, meme, or article that attacks a group of people (on whatever issue, not just this one), it’s hurtful. And just because you didn’t write it, doesn’t mean you aren’t being unkind by posting it. A video featuring magicians screaming obscenities at parents who don’t vaccinate their kids isn’t funny, nor is it an effective means of changing anyone’s mind. It’s mean. Surely you yourself wouldn’t scream obscenities in my face, so why would you post a video for me to watch of someone else doing it? As Glennon Doyle Melton so eloquently says, “If you aren’t kind on the internet, then you’re not kind.”

And for the record, posting your views online on whatever issue you are passionate about is fine with me. I love to read other people’s views on a variety of topics, and honestly, social media has been amazing at opening my eyes and even changing my mind on several things- when it’s done respectfully. But belittling and lashing out at someone just because she parents differently than you do (and even if you believe her parenting decisions are dangerous for whatever reason) is wrong.

I’m really at a loss what to do with my participation in social media, and even blogging, right now. Facebook has been such a positive in my life for so many ways- a lifeline at times- but right now, it just feels like a hostile war zone. I’m also so protective of my blog and it’s been my therapy for many years now, but I’m a little scared and resentful about it right now. It just doesn’t feel like a safe place to be anymore. And it’s started creeping in to other parts of my life- this week I’ve found that I’ve felt like a failure in many areas of parenting and have been dwelling on those (oh, Charlotte’s had way too much screen time and has eaten far to few vegetables…)- and I’ve been beating myself up over these things instead of celebrating and enjoying the many, many joyous moments of our week. The internet is getting to me, and not in a good way at all.

I know all I can control is my reactions, and I am ultimately accountable and responsible for anything I do and say, online or off. I probably can’t change anyone who is determined to be nasty, but I need to figure out how to limit my exposure to it.

But please, I beg you, whatever you say, or post, just be kind.

Dear Charlotte,

Happy Birthday! We’ve had a full two days of celebrating you, and you are really digging the attention, presents and CAKE. Yesterday, we started the day with a breakfast party with your Grammie, Uncle David (with whom you share a birthday), Aunt Hannah, Theo, and Uncle Peter. Aunt Hannah surprised you with these adorable Daniel Tiger cake pops. You polished off two of those at breakfast.

Then, after an afternoon visit from Aunt Robin and Megan, we had a second family party with Grandmommy and Dear, Aunt Brittany and Uncle Tim, and Cooper and Quincey.  You got loads of presents, dined on tacos, and of course, birthday cake.

Today, your actual birthday, was also full of friends and fun. Mommy had Bible study this morning, so you got to hang out with your church friends at Sonshine class, and then this afternoon we went to another friend’s house for more cake and play.

For your birthday, Mommy and Daddy gave you a set of magnetic paper dolls, a few books, a nice set of wood blocks, and a BIG GIRL BED! Although I’m nowhere near ready for you to sleep in it just yet (you do great in your crib and have never once tried to climb out) it’s nice that it’s there and set up for when you are ready to transition.

Charlotte, at 2 years old you:

• Weigh 27 pounds
• Wear size 2T clothes, size 5 diapers and size 5 shoes
• Are a very good eater, although vegetables are not your thing
• Sleep from about 7 pm- 7 am with one afternoon nap
• Love Daniel Tiger
• Talk all day long, and are now speaking in 3 to 4 words sentences
• Have started pretend play, especially with your baby dolls and in your play kitchen. It’s adorable
• Love to color
• Tell me, if anything isn’t working the way you want it to, that it’s “broken and needs batteries”.
• Have a strong will and feisty personality, but are generally agreeable and obedient.

Charlotte, this is the last of your monthly letters, and the last of me trying to capture some good pictures with these monthly stickers. I hope that when you read these some day, you will know how much I love you and how special and treasured you are. I love you sweet girl- Happy, Happy Birthday!

Love,
Mommy

I realized on Friday that Charlotte was exactly, to the day, the same age Grayson was the day he was diagnosed with Leigh’s, eleven days before his second birthday. That kind of baffles me.

How is Charlotte already that old? Time is so strange- it seems like we went through so much more and it took so much longer for Grayson to reach two years than it did Charlotte. And I guess it did. When I think about all the doctors appointments, therapy sessions, diagnostic tests, hospital stays and surgeries we crammed into two years, on top of just the life changing event of becoming a parent, I’m kind of amazed that I made it though that time with any kind of sanity intact.

During Grayson’s first two years, it seemed like I was always waiting. Waiting in doctor’s waiting rooms, waiting on huge test results and a diagnosis, and waiting on phone calls to schedule more doctors appointments and diagnostic tests. And then there was the waiting that never produced the results I was waiting on. I don’t remember the exact age he was when I realized Grayson would never sit up on his own, but for some reason, that particular milestone was the one I focused on for so long. I thought, if we just do enough therapy and exercises at home, get him bigger, and get him stronger, surely it will happen. And it never did. And unfortunately, today, Grayson’s spasticity in his waist/trunk has gotten so severe that it’s really difficult to even force him into a propped sitting position.

Maybe that’s why those first two years with Grayson seemed so much longer than Charlotte’s first two years have- his development moved at a snails pace and therefore so did time. With Charlotte, the speed that she changes-both physically and cognitively- just astounds me . And maybe I also needed time to move slower with Grayson so I could process everything that was happening and deal with the emotions that came along with that.

We don’t do much waiting anymore when it comes to Grayson. On any given day, his life is extremely routine and predictable, or it’s the complete opposite. On a normal (not sick and in the hospital) day, his routine and schedule varies very little, which keeps him calm and stable. This is why I find it difficult to blog about Grayson these days- every day is mostly the same. He isn’t learning new things, meeting any milestones or saying funny things. He still goes to the doctor a lot more than a typical kid, but it’s nowhere near the amount of appointments he had when he was a baby. And the vast majority of his appointments are boring and routine, in contrast to before when we never knew what we were going to find out every time we drove down to the Med Center.

Grayson won’t be with us forever, so for now, I am mostly fine with the slowness and routine of his days. We do a lot of sitting and snuggling on the couch, and in the midst of toddler craziness and general life busyness, I’ll take as many of those quiet, slow moments as I can get. Grayson is always my teacher.

A few weeks ago, this article was circulating- a letter to siblings of special needs kids telling them how amazing they are. It really is a feel-good, idealistic letter, and contains everything I hope and pray for Charlotte as she grows up in a family with a unique sibling situation.

Then I read the comments. Never read the comments. While there are many parents and siblings of special needs kids who absolutely loved the article, there were of course those who hated it- who felt it was unrealistic and didn’t address the real challenges faced in these sibling relationships. There are a lot of comments from siblings who grew up to suffer from anxiety and depression, and who felt “invisible” in their families. To be honest, it shocked me and kind of made me feel sick to my stomach.

At this point, I can’t imagine Charlotte feeling invisible. She is the opposite of invisible. If anything she demands and gets WAY more attention than her brother. She gets at least 6 hours a day of one-on-one time with me while Grayson is at school, and even we are all home, it’s the Charlotte Show. I know part of it is her age, and part of it is her outgoing, energetic, sociable personality.

Charlotte adores her brother, and anticipates what he needs. Just this afternoon, the first thing she did when we got home from school pickup was bring Grayson his ipad, his chew-stick, and a blanket in case he got sick. She really does have a tender heart towards him.

Case in point: I mean…have you ever seen anything so sweet?

It makes me, and I think most special needs parents, uncomfortable when people call me Super-Mom or tell me they have no idea how I do it or that they could never do it. Yeah, you could. There’s nothing special about me- I just love my kid and do what I can to give him a good life. Same with Charlotte. Yes, I hope the experience of growing up seeing what she does and will see in the future will give her an appreciation for life, an empathetic heart, and a desire to serve others, but I don’t want her to feel added pressure or expectations because of who her brother is. And I never want her to feel invisible or that she matters less because she is healthy and will have less physical needs as time passes.

It’s hard for me to imagine how Charlotte’s life and personality will really be shaped by her role as a special needs sibling, and it’s scary to think that the experience could affect her in a really negative way. But just like everything else, I’ll take it one day at a time, pray a lot, and treasure the moments of the special bond these two share.