Wheel of Fortune is one of Gillian’s favorite shows. Vanna White wears pretty dresses and Gillian loves pretty dresses. Every night before bed Gillian watches an episode. We sit in anticipation waiting for Vanna to walk out in her pretty dress so we can see what color it is. In a few episodes she has walked out in a pantsuit and Gillian gets so irritated that we end up deleting that episode and moving on to the next one. Once we get through talking all about Vanna”s pretty dress we move on to the contestants. Gillian has to know each one’s name so she can cheer them on when it’s their turn. She gets so into it! She even likes to call out letters with them. She’s just helping them fill in the blanks. If someone lands on “lose a turn” or “bankrupt” she responds with an “oh man, that’s okay Bob (or whatever their name is)” while clapping for them. When the puzzle is finally solved she hoots and hollers for the person who won. An episode of Wheel of Fortune is quite the exciting ordeal in our house.
I feel like life with Gillian and all her diagnoses is like playing a game of Wheel of Fortune that may never end. This adult child of mine is very complicated and I’m often told by doctors and therapists that she’s like no one they’ve ever worked with before. Some like the challenge of figuring her out and some just can’t handle it. (It depends on the day which group I fall into.). Every so once in awhile we get to add more letters to Gillian’s long list of diagnoses and every time we do my hope is that we will be able to solve the puzzle. Unfortunately, the puzzle usually just becomes more challenging. We recently got more letters, we even got to “buy a vowel” to throw in there. It always seems like once you get a vowel or two up on the board the puzzle becomes easier to solve, not this time.
We recently saw one of Gillian’s specialist to talk about her severe anxiety disorder and the possibility of trying new medication. (So far we have tried 8 different meds and she has had an adverse reaction to all of them.) That’s all the appointment was supposed to be about. I wasn’t looking to add new letters to the puzzle that day. We’ve got enough to handle already. Chris and I sat there with the doctor and talked for 30 minutes straight telling her all that had been going on with Gillian lately and her anxiety. We gave her detailed stories and described in depth scenarios where Gillian had become completely out of hand. She listened, asked some questions and then sat back in her chair and asked, “Does anyone in your family have obsessive compulsive disorder?”. Chris and I looked at each other trying to figure out the answer and then replied with a “no”. It took me a few seconds to realize what she was implying here. I finally asked, “Are you telling us that Gillian has OCD?”. She immediately replied, “yes”.
After we finished talking about our newest member of the family, OCD, we talked about a few more scenarios we’ve had recently with Gillian. The doctor immediately said, “She has separation anxiety”. Wait, what?! I didn’t come in here to buy anything and I definitely wasn’t looking for the two for one special! But I got it. Yay! (That’s sarcasm right there for those who couldn’t tell. Lol).
Now, the way my mind works is that when it gets a new problem it finds the solution. I go into head down and move forward mode. I know that later I’ll be able to process the feelings and emotions but for now we need to get down to business. We talked with the doctor about new medications we could try and about how this will be a lifelong battle we will have to fight for her. See, that’s the thing with Gillian, she doesn’t have the kind of brain that can help her cope with and fight mental illness. She can’t use the tools that most of us can to calm our anxiety or to talk ourselves down from an obsession. That’s why we have no choice but to find the right medication that can help her brain do what she can’t do. We, as her parents, are the ones who have to diligently remember to give her all of her meds ever single day. We are the ones who have to keep a close eye on her to see if she is having any adverse reactions to a new med and then make sure to report it accurately to the doctor. We are fighting this battle for her that she can’t fight. At times it can be completely overwhelming. Especially when you start questioning whether or not you are making the right decision or reporting the right reactions you are seeing to the doctor.
We walked out of the doctor’s office with way more than we came in with- 2 more diagnoses to add to the list, a new medication to try and a very heavy heart. Fortunately we had an hour drive home where my brain and my heart could collide and start processing. It didn’t take long for the feeling of being overwhelmed to wash over me and for the tears to fall. The questions started pouring out, “Is this just going to keep happening for the rest of her life? Are we just going to keep getting diagnoses to add to the list? Will we get one thing under control just in time for something else to come out? I’m suppose to give people hope but how can I do that when I’m feeling so hopeless?” Tears and more tears streamed down my face as my heart, once again, aches for this child of mine who can’t help herself and as it feels completely overwhelmed and incapable of trying to do it all for her. I sat, staring out the window, with my tears and my thoughts for awhile. Then the music that had been playing this whole time started breaking through into my head.....
“All the poor and powerless, all the lost and lonely..... will know that You are holy.....and all will sing out hallelujah, and we will sing out hallelujah. And all the hearts who are content And all who feel unworthy. And all who hurt with nothing left, will know that You are holy.... shout it go on and scream it from the mountains. Go on and tell it to the masses that He is God!” I couldn’t help but chuckle at first at these perfectly timed words piercing straight into my soul. God, you always give me exactly what I need exactly when I need it. There was my hope! There was my reminder of the hope I have for me and the hope I have to give to others! He is God. Period. That’s it. That’s all I need to remember. HE IS GOD! Tears of pain turned to tears of worship and remembrance of who He is. He is God and God is good. Even in the midst of diagnoses and medications and heartache, He is still good. He is still God. That was something that my heart and mind could easily process. That was something that I could grasp on to. He is God is what I will shout from the mountaintops for all to hear!
There’s still an unsolved puzzle to deal with though. Gillian’s list now looks like this..... left hemiparetic cerebral palsy, intellectual disability, epilepsy, sensory processing disorder, polycystic ovarian syndrome, severe anxiety disorder, separation anxiety, and obsessive compulsive disorder. Fortunately, when I deal with professionals or other special needs parents I can say- CP, ID, epilepsy, SPD, PCOS, SAD, separation anxiety and OCD. These are the letters I use when I’m trying to solve the Gillian puzzle. They add up to a whole lot of nothing. Actually that’s not true. They add up to a whole lot of me needing Jesus. A whole lot of time spent on my knees crying at my Saviour’s feet. A whole lot of learning how to be completely selfless. A whole lot of love for this adult child of mine. I’ve realized that’s it’s no longer about trying to solve the puzzle. I actually don’t even think that there is a puzzle to be solved anymore. It’s about shouting form the mountains that He is God even in the midst of new diagnoses, new meds and whatever else may come our way.
___________________Here’s a link to the song I quoted above. “All the Poor and Powerless” by All Sons and Daughters. https://m.youtube.com/watch?v=ieOL4X3nk2c
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