Making the decision to put your child through any surgery is never easy. The thought of handing your heart over to someone else and releasing all of your control over their life is absolutely terrifying. Coming to the decision for our daughter to have a selective dorsal rhizotomy (SDR) surgery done has been no different. If you’ve ever had to make the hard decision for your child to to go through surgery, or even starting a new medical treatment, you are seen and heard here.

Making medical and/or therapeutic decisions about your child is not always easy. I hope that you have many people in your corner who support you and cheer you on. I hope that your therapy and medical teams grow to feel like family for you. I hope that you also feel comfortable enough around your team to speak your mind, ask lots of questions, and work together as a team. Even with all of the support in your village though, the questioning, judgement, and looks from others can still sting.

I see your looks.
I hear your tone of voice.
I feel your judgement.

Do you know what I feel? Hurt. Guilt. Self-Conscious. Doubt. And right now as we decided to move forward with this surgery? I am terrified.

We did not come to this decision lightly. Do you think I like the idea of putting my child through yet another surgery, let alone one operating on her spinal cord? That thought absolutely terrifies me. The thing is though, you don’t see the sleepless nights when she complains about her pain, the discomfort all day long because her legs are so tight, and how many times we have to reset her AFOs because she has pulled out of them. You are not the one who has to hand her off to surgeons and doctors just hoping that they can help her feel better and put all your trust in strangers and God.

Don’t get me wrong, I would love to hope that she could one day be able to independently move herself around this world without significant treatments and procedures like this, but I also know what our reality looks like. Our reality is that she has received early intervention services since she was born (and increased overtime due to delays), school-based therapies to help with fine and gross motor skills, outpatient therapies multiple times a week for OT and PT, aquatic therapy, hippotherapy, and chiropractic adjustments all on a weekly basis. At home, we incorporate therapy type activities when we can. At daycare, therapy activities are also included. She has access to her mobility equipment at home, daycare, and school. Ultimately, she is surrounded by support.

Short of taking away more opportunities for her to just be a kid, it’s about as intensive as we can get.

So at that point, what is a parent to do?

• You might consider supplements, at-home remedies, alternative treatments. Well, we do daily magnesium supplements, give Epsom salt baths and use magnesium lotions, and we go to weekly cranial sacral and chiropractic adjustments.
• You might consider medications. Cool, she is on them. We started Botox, granted I do not like the idea of her relying on these injections for the rest of her life to ease the pain and be more mobile.
• So what else do you do? Well, when a surgery like SDR comes along, you consider it regardless of how much it terrifies you. You research. You ask for opinions. You ask other parents who have been through it. And ultimately, you decide what the next step is for your child. Is everyone going to agree? Probably not, and when they don’t, quite frankly it can hurt.

When the decision is made by a parent though, whether you agree with the decision or not, your disagreeing opinions at that time are not helpful. I don’t know about you, but I’m already going back and forth in my mind even when I know something is the right next step. Doubt and anxiety creep in and suddenly I’m reconsidering everything we’ve decided. So when you blatantly disagree, and I can tell not only from your words but your tone and body language, it’s not helpful.

What do parents in this situation need? Not judgement.

Here are just some of my thoughts about ways to help me better in this situation.

1. Love on my child. She has no control over the cards that she has been dealt. She understands a lot, but she will not be able to fully understand what this surgery entails or could mean for her. Just love on her. Show her that you are there and part of our village.
2. Be kind. Always just be kind. It doesn’t cost you anything.
3. Ask how I am doing, how I am really doing. I’m the type of person that I will tell you I am fine at first. You’re going to have to probe me more to find out that deep down I’m a nervous wreck and that it breaks my heart that my kid has to go through this in the first place.
4. Give me a hug.
5. Offer to help, and when you do be specific with how you want to help. It means the world when you say that you are there to help, but quite honestly my mind is already going a million different directions I don’t even know where to begin with picking how you can help. So just pick something that you feel like would be meaningful and appreciated by you.
   • Here are just a few examples – Offer to bring supper, send a gift of money, buy groceries, fill up the car with gas, mow the lawn, watch the kids or pets
6. Pray for me, my child, and my family. Pray for the medical staff and surgeons who will have my child’s life in their hands. Pray for a smooth recovery. Pray for the best outcome for the surgery.
7. Check in with me. Honestly, I will probably retreat into myself during and after this whole process. I am managing so many things mentally that it’s overwhelming and it feels like I am burdening others by bringing it up. I may not talk as much when we see each other in passing. I may not text as much. Reach out and check in on me please.

Blooming where we are planted,

A CP Warrior’s Mama