Happy New Year! I don’t typically make a New Year’s resolutions, and I’m still not sure this qualifies as one or not. I typically declare that in whatever new year I’m entering, that year will be BORING and have zero medical drama. And each year, the medical drama is worse than the year before.
So this year, I’m making a different goal for myself. I can’t change my circumstances medically. Making these silly declarations does nothing and I can’t control it. But I can control me. So this year, I’m going to find something to be thankful for each day. I want to fill my heart with gratefulness of what I do have going for me. Maybe then the medical drama will be easier to handle.
I also want to start blogging more. I did it a lot years ago, and even once published a book! I love to write, and I need to get back into it. I’m also going to set a goal to republish my book. My publisher went out of business, and all of their books went unpublished. I started the republishing process, but never completed it. I want to complete that, hopefully soon. I’ll share more about that hopefully in a very soon blog post.
So I’m starting this new year with gratitude, and my first blog post in this new year, I want to talk about how grateful I am for how BIG my God is.
As many of you know, my daughter Cora has severe brain damage. She has something called Periventricular Leukomalacia, and all of her problems really stem from that. She had a feeding tube for 2.5 years, she has Childhood Apraxia of Speech, she has pretty far-reaching mental and developmental delays. She’s 6 years old, and despite all of her problems, she’s also very “normal.” She likes to play with dolls, to dress up like princesses, she loves to dance and run and play and laugh. She loves her family fiercely. She’s a fireball of emotions, and loves passionately and also gets very angry passionately. She’s a fighter, but I think had to in order to overcome many of her life’s obstacles. In the past year, she started taking karate to kind of get some of her fighter spirit out in a constructive and healthy way.
As a result, though, of her brain damage, we spend a lot of time at Children’s Hospital, and other various places, getting testing and therapies done in order to help her be the best version of her possible. There is actually no one I’ve ever seen work harder than Cora, and I always teach my children that hard work ALWAYS pays off in the end.
Several months ago, in preparation for her IEP meeting at school, we had IQ and developmental testing done at Children’s. It was VERY extensive so that we can get Cora the best help possible now that she’s in school. This testing was done at the beginning of September. Her IEP meeting was set for the last Wednesday in October.
Some weird things happened with getting the results of that testing, and I never had a meeting with the psychologist who performed the test. She got sick, and our schedules never lined up to meet and discuss before her IEP meeting. So I had to request those results from Cora’s official medical records at the hospital. Cora and I drove up there the Friday afternoon before the week of her IEP meeting and picked them up. The results were 50 pages long! After I dropped a copy off at school for the psychologist to begin preparing for the following week’s meeing, I went home, and spent the better portion of 2 hours reading through them.
And to say these results were the most devastating words I’ve ever read in my life is an understatement! This psychologist spent 50 pages basically saying that Cora’s IQ is so low she’ll never really amount to anything and our only hope as a family is to seek family counseling.
I was D*E*V*A*S*T*A*T*E*D!!!!
That first night, I just cried and cried. At one point, I locked myself in the bathroom because I was afraid that the amount of my crying would scare the children. I’m not sure I have ever cried so hard in all of my life. It felt as if the air had been sucked from my lungs and I would never truly take a deep breath ever again.
Through my tears, my anger at God started coming out. I’ve always believed that God already knows what’s inside my heart, so He’s going to get whatever is in there. I vowed a long time ago that I’d never stop talking to Him, even if that meant He got my anger. I asked God why had He done this to me? Why would He put this on my marriage and my family. I argued that I haven’t done anything wrong, so why punish me with this? I then asked why He would allow such devastating brain damage happen to a child. She’ll have problems her whole life, and she’s still an innocent. How could He do this to her? What hope do we have?
At one point, I started in on God, too, about how He wants us as humans to have a relationship with Him. He wants us to confess our sins and ask for forgiveness and ask Him to live in our heart. We have to have some level of understanding about the cross and the forgiveness of sins and all that. What if this child never understands any of that? How would she ever come to any sort of understanding of God and then go on to make a decision to be a follower of Him. How could He make a person that absolutely cannot be saved? It just wasn’t fair.
I raged and yelled and threw temper tantrums like this for four days straight. I couldn’t even sit through church on that Sunday. Looking back, I think I knew how sinful I was being raging at God like that, and I felt way too exposed sitting in His house. I really was like a toddler throwing the biggest tantrum of her life.
On that Monday morning, I called my mom and told her everything. I cried A LOT, and of course the first thing she jumped on was I should not talk to the creator of the universe like that and I need to get on my knees and apologize immediately. She was taught to show reverence at all times because He’s God. You just don’t yell at God! And she’s really not wrong in that. But I believe it a step further. God is my Heavenly Father, and I have a relationship with Him, just as I have a relationship with my earthly father.
I continued raging at God all day Monday with no real resolution. Mom wasn’t able to talk me down from the ledge, but honestly just knowing that I can talk to my mom about this and she can handle whatever I throw at her gives me comfort. And then taking that a step further, at least knowing this now that I’m out of the anger, God can handle whatever I throw at Him too. As great as my mom is, God is infinitely better.
Tuesday came. The day before the IEP meeting. I woke up after another rough night’s sleep. I hadn’t slept well being so upset any of those last few days. I think a good way to describe my feelings is grief. I felt like I was grieving a death, which sounds stupid because no one died. Actually, since this whole incident, I’ve learned that this is a type of grief. It’s called “chronic grief” and it’s something often felt by parents of special needs children. We’re grieving what our child isn’t or will never become. We’re grieving our own hopes and dreams for the child. We’re grieving that our child isn’t like her peers and may never be like her peers.
Well, I woke up Tuesday, and the sadness was gone. But it was replaced with anger. I was angry at myself, mostly. I had wasted 4 days crying and yelling at God. It dawned on me that I used to fire people from working with Cora and with us for talking like that. I don’t allow language in my home that says “she’ll never do this” or “she can’t ever learn to do that.” I don’t allow my children to say that can’t do something or they’ll never do something. “Can’t” and “won’t” and “never” are bad words, if you ask me. I literally once fired an occupational therapist who told me that Cora had a feeding tube because I was taking the “easy” and “lazy” way out of feeding her, and if I would just make her do it, then she’d do it. The Momma Bear in me awoke that day, and I yelled for that woman to get out of my house and never come back.
But here we were again. This “expert” saying that Cora won’t amount to anything and our “only hope” is to seek family counseling. WHY WAS I ACCEPTING THIS?????? I have fired people for less, and I wasted 4 days of my life that I’ll never get back grieving what some “expert” says.
I immediately hit my knees, and I was in tears of HUGE apology to God, and let me tell how BIG my God is! As I was saying the words, I felt His big loving arms wrapped all around me, and he said, “You are forgiven, and you were forgiven before the words left your lips. You are my child, I love you, and there is NOTHING you can do to change that.”
As I laid there in quiet, God then started speaking truth into my heart, loud and clear. (By the way, if you’ve never heard God speak to you, maybe you’re not being quiet enough in his presence to hear him. Trust me, He’s got things to say, and you’ll know when it’s really from Him.) I think it’s amazing that he let me go as long as I needed. He let me get my anger out and he remained completely silent. I think sometimes it feels like God is silent, and it’s because He is because He’s allowing us to talk. I doubt He’ll talk if we’re not willing to listen. Well, I was finally in a place of being ready to listen.
Isn’t she a beauty?
God started reminding me of who HE is and how big He is. He told me to look at Cora. REALLY look at her. She’s a beautiful little girl, maybe the most beautiful little girl I’ve ever laid eyes on. He said, “She is fearfully and wonderfully made. I didn’t mess up when I made her. I created her with a purpose in this life. I promise you she has a future and I will never harm her. That report from Children’s did not shock or sadden or scare Me like it did you.”
Then God got kinda heated with me, which I needed (just like my earthly father would have probably been with me if I yelled at him for 4 days!). He said, “Angie, are you going to believe in the gospel of Children’s Hospital, or are you going to believe in MY gospel?” As they say… BOOM. The hammer got dropped right on me, and I had my face in my hands.
God went on, “I MADE her exactly how she is, and I chose you to be her mother and her to be your daughter. That was not an accident. Look at the first test that came out of Children’s. It told you that she would never walk or talk or eat on her own, and look where she is now! And they are a GREAT hospital! I want you to keep using them for what she needs. But put your faith and your trust in me. I have a plan in all of this, and I’m going to make something quite beautiful in her AND in your. If you’ll let me.”
Oh boy, yes, I’ll let you. Then he dropped another boom. He said, “And as far as her being able to understand salvation and me, what makes you think YOU understand me fully? She understands me now in her own way. She doesn’t fret about her future and you shouldn’t either. I hold her future and I hold yours. Trust me with that, and I promise you, my plans far surpass anything you can dream.”
So for my day 1 of the New Year, I’m grateful for how BIG and LOVING my Heavenly Father is. Truths I do know about Cora is that she’s overcome everything they said she wouldn’t already. Her speech is delayed, but it’s there, and it’s improving all the time. She’s kind and nurturing with children smaller than her and she loves animals a lot.
I don’t know what Cora’s future holds, but I know who holds her future, and I’m okay with that. Will she have challenges? Yep. We all do. But my faith and my trust is fully on the One who created me and her.