Hey Y'all,
I know it seems to have been forever since I've blogged and each blog seems to be starting out the same way "It's been so long...". The last three months seem to have been the craziest since diagnosis. Anabelle has had sporadic issues all throughout the last 2 years but these last three months have been the most crazy of all. It started with me waking up to Anabelle seizing. These were consistent seizures lasting over 3 hours. They were finally treated after an early trip to the ER and a stay overnight at the hospital. The doctors never figured out just why they happened. The seizures were most likely caused by her fever, but we couldn't find out what caused the fever. Then just two weeks later while I was out of town at a retreat, Anabelle started seizing again. Again another trip to the ER and we had them handled, but this time we knew why the fever had happened-- rhino virus. Anabelle was so strong through all of it and barely cried when we would have to give her added medication, chest PT or suction her nose. Then about two weeks later Anabelle's stroller was stolen from our car. Long story short, we got a brand new stroller bought by the kind people at the Deschutes County Sheriffs office, but it just felt like it was one more thing.
Not long after the stroller debacle was settled Anabelle started having unexplained episodes that looked like seizures but weren't responding to medication or showing up on an EEG. That was when I lost it. I have tried so hard to make Anabelle as comfortable as possible. This was unlike anything I had yet experienced and the worst part was that she was conscious through these episodes and just had this look of panic on her face that completely broke my heart. I hated that I felt like there was nothing I could do. Was this it? Was this the end? Is one of these episodes going to take her life? And how unfair to her to have to live like this. I was devastated for her and was finally feeling like "I'm done. Can this all just be over? Okay Lord, I've learned my lesson, it's time for a miracle!" It's been easy to fool myself into believing that because Anabelle has had no physical changes on the outside, that must mean her brain has not had anymore deterioration, but boy was I wrong! I felt defeated and everyone around me could see it on my face. Ronn asked "Are you okay?" and I lost it. You know that ugly cry where you can't even catch your breath, yeah that was me. I couldn't fix these episodes and the fear in my baby's eyes was truly killing me. I was done watching my daughter suffer. I just couldn't handle it anymore. I know I'm allowed to cry and be angry and get frustrated but I decided early on that Anabelle needs the strongest momma to take care of her and damn it if I haven't lived up to that task! Why can't I fix this? What good am I to her if I cant stop the pain? Ronn suggested contacting the MLD Discussion Email List and I said "no one can help, I've never seen anything like this in any of their kids" and he said "but it doesn't hurt to try does it?" He was right.
So I emailed the other MLD families and within minutes I got a response. "This is PAID syndrome, also called autonomic storming. Her nerves are firing because they don't really have a control center and this medication has helped us tremendously." I contacted her doctor right away! We started her on the medication and immediately the three-every-minute episodes were gone. Ahh, a sigh of relief, but now my baby has to be on one more sedating medication. I want so desperately for her to be comfortable, but at what expense. I often wonder if her smiles would come back if we weened off of some of her meds. Would it help or really just hurt? Why am I walking this tightrope?I'm not sure my balance is good enough.
People often wonder how I could believe in a God that would do this to my daughter. I don't really know how to answer that quite frankly, but here's what I do know:
-God is Sovereign. He has a perfect and complete plan. Studying Revelation this year with Community Bible Study has really taught me what having a sovereign God looks like. It looks like every intricate detail planned out. It looks like hope for no more tears and no more sorrow. It looks like justice, His ways are not my ways.
-God will work all things together for good. He has shown me time and time again the dramatic impact my daughter has made on the world. There will be people one day sharing their testimony and Anabelle's name will be in there, I just know it.
-God is faithful. Not once have I wanted for anything. Sure it would be nice for my daughter to be full and complete but that was not her path. It was not the path He designed for her. Before the beginning of time, God chose Anabelle for the work she is doing and has equipped Ronn and I to be her parents every step of the way.
-Jesus is coming soon. Whether or not it's in Anabelle's lifetime or mine, He is coming on a white horse and His name is Faithful and True. He will establish a new heaven and a new earth that will no longer have sin and pain. My daughter will be full, complete, whole and I will run and dance with her for eternity. And there will probably be people there that are only there because of the work that she is doing now.
That is what I know. That is what I cling to. It still sucks, I'm still sad, I know she will be gone sooner than later, but hope. BUT HOPE! Hope is what carries me through and makes my days just a little more bearable.
Thank You Father for Your everlasting love and faithfulness. You are the almighty and I know I can beat on Your chest as hard as I want and Your shoulder will still be a soft place to land. Thank You for Anabelle. I am blessed to be her mother and count it all joy that she was given to me. Thank You Father for considering me trustworthy for the task, and equipping me. Thank You Father for being a rock. Amen.
