I've been mulling over this post for over a month now, and I'm finally sitting down to give it my best shot. I struggle with what I post because as you know this blog is public and the whole world can see it. You all get glimpses of our life with three beautiful daughters with Down Syndrome, but obviously I don't share everything! In the end (so long as I hit publish) I decided to write this post thinking maybe it would help another family who may be in the same type of situation. The things I decide not to share are for the privacy of our children, and I always write keeping in mind that my girls will likely read these blog posts one day. I never want to say anything that would hurt them.
It's definitely no secret to readers of this blog that Zoya has always struggled with anxiety, as long as she's been a part of our family, and without a doubt, I'm certain she struggled with it during her orphanage days. What will "fix" this anxiety? Time and Love, Time and Love, Time and Love, right? Time and Love have made a world of difference for Zoya, there's no doubt about that. She's made SO MANY STRIDES in the three years she's been home. She has far surpassed many goals that others have set for her and raised the bar on herself many times! She is so very smart, and friendly, and loving, and one of the most amazing souls you'd ever meet. But as we inched toward her "three years home" celebration, it was time to face the fact that time and love were not enough to "fix" her completely. Time and Love could not completely take away Zoya's anxiety. Time and Love taught Zoya that she can trust her parents. Time and Love allowed Zoya to become more confident and improve her self-esteem. Despite all that, Time and Love were not enough to take away the anxiety that, many times, ruled Zoya's (and our) life.
Over the past 3 years we've struggled right alongside Zoya with anxiety and fear that paralyzed her at times. Yes, every child has fears, but this went above and beyond what was typical for a child her age. Things like fear of indoor trees and plants, fear of stuffed animals, fear of chairs....each and every fear we came upon, we worked through and continue to work through. The intensity of her reactions was so out of proportion to the trigger. Anxiety began ruling our lives. It was more stressful than we allowed ourselves to believe. It had just become such a part of Zoya that we just dealt with issues as they arose. Maybe people who know us would be surprised to learn of all this because we just began adapting life to avoid triggers, or using 100 exhausting strategies to curb her anxiety in public. Those that know Zoya well though, would agree that she struggled with anxiety.
Over and over we tried to figure out the reason for this anxiety and these fears. Having no birth family history, we have no idea if there is a family history of anxiety disorders....so it's quite possible that may play a role. I strongly believe the Lord put us in a position to see things during our adoption of Zoya.....things that still wake me up at night.....images of children being violently abused....an image of a sweet tiny boy having his head beat into the wooden floor repeatedly.....children from her very own groupa....at the hands of the very same people we had to hand Zoya over to at the end of our visits (taking a break to bawl my eyes out here). I know the Lord let us see those things so we could better understand Zoya (once we came to terms with the fact that Time and Love wouldn't just magically make all the anxiety melt away). At the time we didn't understand why the Lord would allow us to see those things that would forever steal a piece of our hearts. Now, I'm certain we saw those things to be able to better understand the root of Zoya's anxiety diagnosis. Looking back on any of the pictures from Zoya's orphanage, you can see many many indoor plants and huge stuffed animals-two of her fears. I can only venture to guess why she was so terrified of sitting in chairs for the first 6 months home. The point is, I know in my heart that Zoya's traumatic past shaped her brain in ways that can't always be undone easily (or ever). Coming to that realization is not very fun. It was a lot easier (and naive) to just believe that Time and Love would fix it all.
We worked tirelessly to try and help Zoya with her anxiety. Shawn and I sat down and wrote a list of all of Zoya's anxiety triggers and strategies we'd used to try and help her and it was then that I realized her anxiety was taking on a life of it's own. Several months ago, we decided to seek out professional help (we had seen a child psychologist in the past, but at that point we were still under the impression that Time and Love would be enough to make it all go away). We found an awesome group of professionals (therapist and psychiatrist) who took the time to get to know Zoya, listen to our concerns about her anxiety, and come up with a plan to help her. Zoya was officially diagnosed with Anxiety Disorder. While this was a huge relief (knowing we weren't crazy), it also made us so sad. Nobody wants their child to struggle, and clearly Zoya was continuing to struggle with anxiety daily. Actually hearing the diagnosis out loud didn't change Zoya, it just confirmed to us that Time and Love did not take that anxiety component away from Zoya. It made us so sad to know that she had to struggle so much with debilitating anxiety.
Zoya has been able to work through specific fears and overcome them, but it almost always seems that a new fear arises in place of the old fear that she overcame. She made huge progress during her dance season with strategies such as deep breaths, headphones, social stories, etc. BUT, the anxiety never went away. It manifested in other ways. To see your child acting hysterical at the sight of a gift bag with a stuffed animal sticking out is both maddening and just plain sad. Maddening because I just wish she could turn off the anxiety, maddening because she was freaking out over harmless (in my mind) stuffed animals, indoor trees, etc. And sad because what child is so afraid of stuffed animals that they cry and shake and pace for 45 minutes after seeing the thing? I know I'm not doing a great job explaining all of Zoya's specific fears that come along with her anxiety, but that's not really the point of this post. The point is, her anxiety was so bad that it began really interfering with daily life for her and for us. Sure she had many great moments throughout every day but we never knew at what moment the anxiety would kick in and take over. She was being held captive by anxiety.
The therapist and psychiatrist both agreed that the intensity of Zoya's anxiety was too high to benefit from most strategies that are typically used for children with anxiety. She couldn't even begin the Gradual Exposure process because the intensity of her anxiety was so high. Her brain had been setting off false alarms telling her she was in danger so long that the thought of facing some of her fears was enough to cause huge anxiety. That, paired with her developmental delay, made traditional cognitive behavioral strategies more difficult and less effective for Zoya.
Part of the treatment plan they suggested was medication. If you know me at all, you know (even though I'm married to a pharmacist) that I'd prefer not to use any medications on myself or my children unless I've tried everything else first. I'd prefer, especially, not to use this type of medication on my almost-5-year-old. The thought made me crazy. We looked back over the pages of strategies we'd used that we wrote down. Please don't leave suggestions for how to help with anxiety naturally (believe.me.when.I.say.we've.done.it.all!!!!) I tried to convince myself that her anxiety really wasn't so bad that she needed medication. But all it took was a single episode of her anxiety to remind me that this WAS a medical condition that was causing Zoya's quality of life to be impaired. It was our job as her parents to do everything we could to give her all the tools she needed to have the best life possible! So nervously (and after much research and consulting other parents who've made the same choice for their children) we made the tough decision to try medication. I definitely cried as I gave her the first dose.
The difference it has made for Zoya is miraculous. She is on the teeniest tiniest dose, yet it turns the intensity of her anxiety down so much that life has been much more enjoyable for her. We learned that a little bit of anxiety is a good thing (haha) and until we got the dose right, we had a fearless and frightening 4 year on our hands). Her confidence has soared. Her anxiety is not gone, but many days go by where I forget that it was ever such a huge issue! It makes my mama heart so happy to see her interacting more, exploring more, enjoying more. I'm not saying this is the answer for every child in Zoya's situation, but I can confidently tell you that it has improved Zoya's life greatly! Has it taken away her anxiety completely? No, only the Lord can take away her anxiety completely, and I have no doubt He is fully capable of doing that, but it has made a world of difference for her!
I know by posting this we'll face critics, but those critics don't know our child, and it's not their job to make decisions for her, so those people don't matter. It's my hope that this post might help other families in the same situation, and to give you some more insight into what an amazing child our Zoya girl is and how much she's overcome!
Dance, baby, dance!