I am not writing this today from a place of victory. A place of pure success. Or from a place standing as some kind of super-parent who has it all sorted. I am writing it from the stage of now. The midst of my story, the middle of my struggles and my motherhood. And although I'm writing from in the midst, I am also writing this because I have seen a lot in the past 10 years. I have had my life go from trying to "do it all the right way" to everything blowing up in my face in the course of a weeks time. I have seen what it's like to be truly humbled. To almost loose your mind. To have to dig so deeply inside yourself just to get through the shower. I am not so naive to think mine is the only story of life lived with a sick child or depression. But I do know that sooo often I wished I'd had someone who had been on this same path to talk to. Who had the same faith walk as I did and who had something to say that was relevant to how I felt in the middle of all the pain, anger, fear and frustration.
People all through our journey were kind to us. But they were also completely absent from the reality. Not that I fault any of them, of course! But they weren't the ones living it and without being literally in my family's shoes, it's a hard thing to understand. But every one of them understood love and that was what they shared with us. Love and prayers. And yet, I so longed for a person who had seen this all before. That person who had gone before me and made it through a reasonably sane person. I had friends that sat on the phone with me and so on. But over all, in Vancouver, I was alone. But that is so far behind us now.
The hard things, the 8 years of worry, fear, and anger. They have brought me here. The process of dealing and working through those things is where I am at now. I am not perfect. I haven't figured it all out. But I am here I am still standing and so is my marriage. So is my little girl, praise God, and I even dared to have a second baby, now 5 and beginning kindergarten. These were not things that just happened by leaving them to their own devices. They are parts of my story I have fought for and I have failed at and I have gotten back up again for another go.
Life with a sick child is beyond hard and so far from that lovely dream you have in your mind as a child. Wanting to be a mommy. There have been so many days I thought things would never be better. That I would never be good enough for this kid. That I just wanted to throw in the towel and say to heck with it all and run away. Yeah, not very mother-y right? But it's true. And I highly doubt I am the only mom out there who has sunk so deeply into depression that she thinks the world around her may be better off if she did run away. But guess what. The pull to be there and to get up and do it all over the next day, and the next, has never failed me. Even when I am fighting tooth and nail with my kids, let alone my own fearful and angry emotions, I am here. And it's truly only by the grace of God.
In the early days, after the crowds of support had faded away I found myself spending long days alone with a lethargic child and a huge city that I couldn't go into for fear of germs. I turned my back on the Lord because I was so afraid of what He would allow next into our lives. But in the end, fear was also what would drove me back to Him. So much fear. So much anger. So much time.
Today, as I said before, I am not perfect and I never will claim to be. But I am hoping that perhaps this post will find someone out there who is going through the tough times as I did. And as I still do.
Cancer wasn't the end for us. Cancer was followed, and even overlapped, by a rare form of epilepsy that has no real technical name. It's only been in the past 11 months that we have found ourselves with a little girl without seizures. Now we are struggling along with her through her major developmental delays. She turns 10 this year, but I have a little girl who is still ranging from 3-5 years in her mind. I have no clue how to do this. I honestly want it all to be over and her to be "normal" again. But the reality is, we have to fight this battle and push on each day with her.
My heart breaks when I see my 5 year old son catching on to everything so quickly, he has recently learned to ride a two wheel bike all by himself, and I am thrilled for him. But it may be something my girl will never truly know. Her life has always been different and so, ours has too. She only learned to write her name last year at the age of 9 and made some remarkable progress in her schooling. But she is still so far beyond behind. And it's hard not to feel that.
Now please don't get me wrong. I love my son. He is very intelligent and I am thankful we won't have that to worry about for him. I am also so proud of him in each of his steps in life. We celebrate him in these and are so blessed to have him in our lives. He is a brilliant brother to his sister and wise beyond his years on loving her. He has a very cheeky sense of humour and we often are having to give him consequences as it goes too far more often than not. He tries so hard and has so much ambition. He is wonderful. But he is also a handful, I am not going to lie!
As I am writing this, I feel so sad. Sad for the things that never were. Things that were hoped for but never actually happened for us with our daughter. So many firsts we have had with our son, that I never got to have with her and I feel cheated. And that makes me angry. So what do I do? How do you deal with this? How do I deal and live a so far from abnormal life? I love this kid so much it hurts, but I can't make it better. Make her catch up. I want her to be able to do everything all the kids I have watched grow up around her do. Be friends with them in a relevant way to them. Not feel like she is somehow a burden to others. She deserves so much better! So much more, just like every other child out there. But we are stuck here. We have no quick way out. And I have no idea how to do this well day to day. I have been doing it all for 8 years and am still not even scratching the surface of handling it well in my own eyes.
This, this is how I felt all last week. I was heavy with this memory. The burden of it. And although I have worked so hard on dealing with the whole ordeal of our family's adventures, I still found myself reliving so many emotions I thought I'd worked through and had handed over to the Lord. Here I was, so heavy with grief for the past. That's the only way I can explain it. It bogged me down and held me for an entire week. And I struggled with it, questioning God and asking Him if there was some purpose for re-visiting this all again? Then I went to church.
Yep, church. We have been pretty sporadic with attendance this summer and felt it was the perfect week to get back to our community of believers. We had one of the easier mornings getting out the door, not perfect, but better. We arrived and met with a much needed worship session led by the team of musicians for that week. From there, I was run over by a truck load of the Lord. I found the missing piece to the puzzle from the past week.
Our youth pastor, he has seen a lot of years in his short amount of time on this earth. And he drove home so many major points for me that morning. Points that I hadn't even known were some hotspots I still hadn't truly worked through but had only swept under the rug. Points about my past that I was embarrassed to call my own and really had no idea how to face without feeling like a failure from the start. It went even further back than my motherhood and I was blown wide open. Now you may think that this hurt. But truthfully I felt relief. Relief because the biblical heroes that were being talked about that morning were all failures. They had done sooo much wrong! Murder, adultery, distrust in the Lord, and so on. The list went on. But they still had faith. And that was the word we focused on for the remainder of the morning. The word faith in many different verses had been translated to be the same word in english, but from the greek, they had so many different meanings of that word. It was beautiful to see the men and women God used for His story weren't just goodie goods. I knew they were normal people, but honestly, they had some pretty low points. But God used them. And we actually hold them up in high regard in the bible "hall of fame".
If God chose to use them, He can use me too. Even with the past faults I have. I realized that although God had already forgiven me for my messes, I hadn't. I hadn't forgiven myself, not truly. And the way I handled my daughter's illness wasn't perfect, so what. God knew exactly how I'd handle it. I have learned so much from it all and since then. I have allowed myself time to actually invest in myself in the past year. I have taken better care of myself emotionally and mentally than I think I ever have before and I learned to do that from being at the end of my own personal rope. After making it to the lowest low, there had to only be one direction I was taking, and that was forward. I still have hard days. In fact this afternoon was a pretty rough one. But thats okay. Instead of sitting here beating myself up over it. I am taking a deep breath. Saying a prayer. Spending some time on myself and tomorrow, I will try again. And hopefully I will make a small step forward in my self healing that I have needed to do. I choose to have more grace. Grace for myself as I seem to be the only one that I have lack of it for.
