Last night, there was a little knock on my shower door. It was bedtime and I assumed it was one of my munchkins trying to find a reason not to be brushing their teeth. That’s a normal occurrence around here you know, the avoidance of bedtime. I’m entirely certain why, as I’m counting down from the moment my alarm goes off at 4:45am to the minute my eyes close.
Anyways, I was done, so I shut the water off, grabbed my towel and opened the door. There was Audrey, eyes red rimmed with tears, “I tired of it. I’m really tired of it” she said, looking up at me. I didn’t have to ask what she was tired of, I knew. I know, me too.
So I knelt down, wrapped my still water covered arms around her and let her cry, fighting back my own tears. And as I did I felt an overwhelming sense of urgency that we needed to pray. Not just me, not just Corey or my Mom but we needed to ask everyone we knew to pray for and over our Audrey last night. So I kissed her forehead, wiped her tears and sent her to ready for bed.
Then I called Corey in and told him what I’d felt and within minutes we were sending messages, updating social media and doing something I rarely ever do – sharing our struggles & asking for prayer.
Once the girls were ready for sleep, we sat on Audrey’s bed together, laid our hands on our girl and prayed. Each of us taking the time to thank God for His incredible grace in our lives, for her strength, for Bethany’s love of her sister, for the tests that weren’t bad and for the future she has. And can I tell you something? As a parent there is little else that will shake you to your emotional core harder than hearing one of your children pray over her little sister. Oh, how sweet the hearts of the children God has given us.
We kissed our babies goodnight and then came downstairs to pray, plan and talk some more.
I hesitate often on sharing our health journey and struggles on social media. I never want to seem dramatic or attention seeking. In fact, I desperately need to be the polar opposite to those things and so I do my best to keep the majority of it private. We all have those friends who overshare, who complain all the time, who us their challenges or the challenges of their kids to collect unnecessary attention, and I don’t want to be that.
I want, no I NEED to put my trust, our trust in Jesus and not in social media & the attentions of others. I truly believe it’s so easy to let Google, Facebook, Instagram and everything in between that the cool kids do that I don’t know about because I’m “old” now, become our God. That attention can feel good in the moment, it gives physical response rather than waiting to see/hear what God will do, it can be satisfying if we let it and I’m determined not to go there.
However, last night I believe I was being called by my God to use those platforms to ask for help. To share with the people who do truly love us and to ask for prayer. We need help, we are struggling so much deeper than I’ve shared with nearly anyone, especially last night and we needed to ask for the prayer. There are times people I love share their struggles and ask for prayer and I’m so thankful they did. As family in Christ we can’t fulfill our responsibility to love one another and pray for each other if we aren’t given the opportunity. That was being pressed on my heart last night, and so I listened.
If you saw that message or received our text and prayed – thank you. From the bottom of my heart and soul thank you for loving our girl, our family and praying. It means so very much more than you’ll ever know.
Audrey’s body isn’t doing well. In fact, it hasn’t been doing very well the past few months. Her fatigue has begun taking over again, in a way we haven’t seen in years. It is making getting through school difficult and some of her favourite activities nearly impossible. The fevers are trying to sneak back in, thankfully they’ve remained low and none have over taken her little body or landed us in the hospital.
A few years ago she also started to develop “spots” or little lesions on her skin. We’ve watched them on and off, they’re a type of petechia and we’re seeing Dermatology at BCCH for them, but again nobody has a clue what they are. In early March they did a biopsy of one of them from her hand in an attempt to figure them out. We also received the funding for her 4th level of genetic testing. Those blood tests have been taken and shipped out of country, in search of answers.
Up until recently those lesions were a few at a time, but right now they are exploding all over her little face and arms. They end up like open sores, and are leaving her face red and scarred. She “worries” at them too, picking because she wants them to go, but even the ones she can’t reach are open sores and leave scars. We’re covering her in every cream, both prescribed and natural that we can in a desperate attempt to stop them.
We’ve watched the food she eats, changed soaps and are trying, but nothing is working.
The hardest part though, the part that lead me to that request for prayer yesterday was the joint swelling. Since December Audrey has had 4 boughts of different joints in her hands and feet swelling. They cause pain, sometimes lump and immobility. Sometimes they last a few days, other times, a few weeks.
Right now, we’re in the middle of the worst episode of swelling we’ve seen. This time it’s attacking the joints in her right (dominant) hand. She’s unable to properly hold things, including a pencil, cup or jump rope and Audrey is hurting the majority of the time. This weekend she just carried around an ice pack or a heating pack, switching between the 2 trying to find relief.
It’s hard. Actually it’s horrible and we have no idea what to do. Last night after having to try hard to get through her school day and then through the gymnastics class she refused to miss, she couldn’t take any more and the tears fell.
They were justified.
I’ve been on the phone and placing emails, contacting a few of the “big guns” we see at BCCH trying to line up some help. We have to find out what’s happening in her body. I need someone to tell me how to fix this, how to offer her relief, how to make it better.
If you see our Audrey on a daily basis, chances are, other than seeing the sores on her skin you’d never know she’s struggling. You may notice how pale she gets or how sunken her eyes are, but you’ll generally see a light from her. She’s got spunk and sass, and sweet and cheeky spirit and a beautiful helper’s heart.
She’s a fighter and I’m so glad that she is, God’s going to do something great with who she’s becoming through all of this, I just know it.
Again, if you prayed for our girl last night or you’re praying now, thank you. Your thoughts, prayers and compassion are so greatly appreciated and we love you all so very much for them!