October 29th marked a year since Norah's first surgery. I wish I could say she has recovered well and life is back to normal, but I'd be lying. She had two other surgeries after that due to complications and then had her 8-plate removed from her knee early this year. She will undergo Ankle surgery soon along with leg lengthening. Some surgeries are major, some are minor. But as I've said before, for her, they require the exact same thing. They trigger the same memories for her. We go through the same process, to the same place, wear the same gown, take the same meds, sometimes we even have the same nurses! All those things are the same for her. In a household where we are adamant about keeping her routine, this would be a very good thing. But in this case, it's a terrible thing.
To the PFFD parent who may be facing similar struggles, the Mom pulling her hair out while your kid recovers in a Spica or the Norah fan who wants to help and support her, this is why I write this, to teach the parent to the left of me, the way the parent to the right taught me (Shout out to you, Taylor, Charles, Havalyn and Kristen) and to let anyone and everyone around me know more about Norah. Because you know what, she is special. She is unique and fights a unique battle; battles no one even knows about. Parents on our support page are fighting battles we haven't fought yet, battles we may never have to fight and battles we've already fought. Thank you to those parents around us for helping us through Norah's surgeries. Thank you for your detailed posts and blogs so we could prepare. Thank you for brainstorming issues that arise after surgery and helping us sort through them.
We didn't see any signs early after her surgeries. Typically if a child goes through trauma, their regression may begin 6 months to even a year after. I thought I just had a "difficult" child. I was constantly trying to figure out what was causing her behavior, especially since she had already recovered physically. I re-evaluated every single thing I was doing and made it my mission to change my own behaviors. After making quite a few changes in our household, reading, studying and even taking classes on it, quite a bit changed for the better. But, there were so many other things not adding up. Our usual FANTASTIC sleeper suddenly needed lights on, one of us helping her get to sleep or even staying with her "to keep her safe". Friends close to her suddenly became triggers to bad memories. She reverted back to younger behavior. She was so easily startled, upset or hurt. She'd even exhibit physical symptoms like headaches, muscle aches and frequent fevers. She went from regulating her emotions, taking a breath and counting through it, to not being able to calm herself and asking me to help her do it. Everyday I am asked if we're going to the doctor. Every.single.day. Every car ride or trip, she is afraid and needs a detailed explanation of what we're doing and where. The only place she trusts we're really going without an issue, is Mimi's house or with Nana. She knows they don't take her to the doctor, so it's safe and always fun. I can remember when she was quite obedient which seems like so long ago. Originally, I chalked it up to the "terrible two's and trying threes" but deep down, I knew something was off. Why were all the other kids at the playdate happily playing but she was clinging to my leg, or screaming at other kids? Why did her best friend suddenly become her enemy? Why did my kid who refused to snuggle for the longest time, suddenly need constant snuggling begging for me to always keep her safe? She was and still is constantly in fear that the event will reoccur (and it will) which in turn causes her to lose trust. If we as her family can't control those events, then why would she trust us? In her mind, we didn't keep her safe from it. People, places, smells can all remind her of her time spent in the hospital. She remembers so much, it actually blows our minds sometimes. Recently, she asked me about the trumpet Grandma bought her back in February of 2014 and proceeded to tell me where we were and how she got it. It just goes to show how much they remember. She can actually tell me who bought her what and when as early as her 1st Christmas. She knows patients by name from her first hospital stay. (I know, crazy) I investigated everything from ADHD to Sensory Processing Disorder. I drove myself crazy, letting my anxiety fuel all these random ideas and theories because I just wanted an answer.
It was so obvious. She's been through more in her three years of living than I have encountered in my thirty years altogether. The average child goes to the Pediatrician, gets a shot and a checkup and is on their way. Some aren't as fortunate and see other kinds of doctors, and to those parents.....I feel for you, I do. Our daughter has been cut open more times than she can count, been immobilized multiple times, stayed in the hospital multiple times, has her own walker, has her scars named, been on more drugs than I care to share, missed events, holidays, playdates, and quite frankly too much time to just be a freaking kid. Of course she's traumatized. She can't even go to the "shoe helper" without being terrified and he is just fixing her shoe! Of course she's angry and regressing. I almost ignored it, telling myself,"It's a phase, she'll outgrow it." But she isn't. And it is proven in children who experience any sort of trauma, that if it is left untreated, the probability of more psychological issues arising later in life, increases dramatically. A traumatic experience can damage a child if left unspoken about so we decided to be proactive and get ahead of it. I am so thankful I actually listened to my gut. We want her to build resilience so she can face what has already happened and what will continue to happen. "Miss Lindsey" works with Norah now each week to help her sort through all of her triggers and emotions. I am thankful for that. I was never prepared after surgery for this. I was never prepared for the trauma she would encounter or how it would affect her, but I am thankful for help. I'm comforted knowing there is a plan for her.
We are in the midst of preparing for next year while dealing with this. Usually, I share a post after a Paley appointment, but our last appointment wasn't what we were expecting and I have just been trying to process it. We knew there would be an ankle surgery at some point for her, but didn't expect it to be done at the time of her lengthening surgery. Even though I knew it needed to happen, I felt really shocked and defeated in that moment when they told us. We were anticipating her walking the next day wearing her fixator, which is typical, but she will be immobile for 6 weeks in a cast for her ankle. I keep going back to carrying her at age 2 in a Spica for that amount of time and thinking of doing that with a 3 year old not only in a fixator but a cast just sounds terrible. We rented a home with a pool so she could do therapy, only to find out we will be staring at that pool for the first month and a half before she can get in. Kicking myself for that one. I'll save the details for the next surgery and what they need to do, in another post because it's just too much here.
For now, I am asking with the most genuine heart and warmest plea, forgive us. Forgive us when she snarls at you. Forgive us when she says, "I don't like people". Forgive us when our way may not seem sensible or right. Forgive us when we mess up and let her win and forgive us when we are not patient with her and should be. Forgive us when we have to leave or need to arrive early before you're ready, to get her adjusted. Forgive me when I disappear for a while. Forgive us when we are not okay, but should be (most people don't know the half of it) and forgive us when we need you too much. Be kind to the child who melts down in public....you don't know if the battle he's facing is just over a piece of candy or if he is facing another battle. Teach your child about disabilities even if they don't have one. It's okay to ask. I love when kids are curious and it gives me a chance to explain it in front of Norah or listen to her explain it to them. However, I'll add it is not okay to refer to it as "cosmetic" (this hurts) or comment how "that's a great idea to make her taller!" That's just stupid. If you see a child that appears "different", either ask a basic question or smile and keep walking. I'm not big on politically correct terms and frown at the constant criticism going on for not referring to things the right way or with the right terminology, but that one gets me. It is so far from cosmetic, I think that's why. Fellow PFFD parents and families, parents in general, family to us near and far, friends, people I have never met but are reading....let this either be a tool you use in your PFFD journey or a tool you use in your relationship with Norah.
I am sharing a link below if you are interested in reading. It not only gives you information if you think your child may be struggling to recover, but also gives information on how to help them through it. These are all very basic things that we also have learned in Play Therapy as well.
http://www.wikihow.com/
I'll write about the details for her next surgery in an upcoming post.
As always, thank you all near and far for your support and blessings to you and your families!
-Nikki
