I’m a mom of 2 bigs (well step mom actually) and 3 littles. If I’m real, I’ll admit that it isn’t always hearts and flowers. Sometimes it is really hard. Sometimes it feels as if I fail in more ways than I succeed. This past week was one of those weeks when all you can do is sign and press into the Lord. My heart is heavy, and yet I have such peace. For that I praise God!
So, tonight I’m getting real. I’m putting it all out there and trusting God to use it for his glory. I’m also asking if you are from my town, please don’t use this as gossip, or a reason to treat my buddy different. And for all of us, my hope is that instead of “feeling sorry” that we use this post to remember that each of us has things at home that are hard, and if we’d all link arms and talk about them a bit more openly, we wouldn’t all feel like we have to be perfect parents of perfect kids, we wouldn’t feel like we are epic failures because we don’t look as perfect as that family over there….
My son Carter struggles. In big ways that impact all of our family in big ways. And up until now, we’ve not shared alot. Mostly because he already gets picked on some, and struggles with friends alot. And we were fearful that knowing he had something that others perceived as “wrong” with him, might just make that worse. Maybe, just maybe by us being open, it will prompt each of us as parents to encourage our kids to be sensitive to kids who may struggle socially love like Jesus would. Maybe. Either way, I have always known that we would share publicly when God made it clear we should.
I was sitting at a weekly time of prayer and worship on Thursday and God totally called me out on my “protecting” heart. Who am I protecting, me, or him? And who could I help if I got real and honest, instead of trying so hard to make everything seem “normal.” And why do I struggle so with having a child that struggles so? I sat there with tears streaming down my face as I heard the Lord’s heart for my Carter, and how what I mean for his good might just be more for my own desires.
I want to start out with this verse that has been ringing in my heart since Wednesday when we saw the neuropsych in Sioux Falls –
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. – James 1:17
Tom and I had infertility for 3 years before we had our twin boys, and nearly lost them at birth with breathing complications. To say that we understand what a gift from God children are is an understatement. But, this has been ringing true in my ears for so many reasons. (One of my favorite photos from when they were younger!)
My sweet friend Liza at work has been walking through the tough place of having a baby that isn’t “perfect” in the worlds eyes. As they struggled through NICU stuff and now the aftermath of appointments and hearing hard stuff, my heart breaks for her. She is part of what was on my heart when I was praying on Thursday. And God wants her to know her sweet baby Will is perfect. Yes, he may have physical “conditions” but he is perfect, and at 2 months old I’m guessing she could list a million reasons why he is. And God wants her (and maybe you ) to know that even in the scary times and the times when our hearts are a bit sad because things aren’t looking like we had asked or planned or imagined, that He is bigger and will use this for his glory. He will also build us up in ways we couldn’t ask, plan, or imagine.
Let me tell you about my Carter, and how I think he’s perfect. He honestly has the BIGGEST heart. He cares so deeply and is moved in emotion in ways that make his mama so proud. He is the kid that gets upset when he sees other kids upset. He takes everything in and processes and asks great questions. AND He prays like no one else and has since he was young. (we called him pastor Carter at 5 or so!) I could go on and on. The point is, there are so many good things about him, that I can’t imagine him any other way. (Did I mention that he is pretty smart too?)
So, all that said, here’s the real part. Nearly 6 years ago we were at a place with Carter that was scary and hard. Since that time we have been to so many play therapy sessions and psychologist appointments, and medicine changes that counting seems pointless. I can’t tell you how many nights I stay awake crying just wanting to help my little buddy. We mutually decided not to talk about it too openly, because we didn’t want Carter labeled and others to treat him “differently.” Because to us, he is perfect.
Over the course of that last 4 months we’ve asked hard questions and sought further opinions. You see, at 5 Carter was diagnosed bi-polar. (yes, you did read that right 5.) I won’t go into all the details as to what was happening at that point, but just know that it was extreme in order for them to attach that diagnosis that young. Sometime after that, ADHD, and this past winter we added depression to the mix. My sweet boy takes 5 meds twice daily. And this mama was struggling with making sure we were making wise choices. Marty our incredible play therapist suggested we get some further evaluation. This week held the results of Carter’s 4+ hours of testing. As this doctor talked about Carter’s IQ (this kid gets his smarts from his daddy!) she told us what a neat kid he was (uh – yea… we know that part:-) And then she told us that in addition to the other diagnosis, he struggles ALOT with extreme sensory issues and anxiety and that he has Asperger’s disease. Asperger’s is a mild form of Autism and relates specifically to social skills. (still working at digesting what exactly that means.)
We left that appointment, not shocked, but instead surprisingly at peace. You see, over the years, we’ve come to realize that Carter is great just the way he is. Yes, we still pray healing over him and do everything we can to help him, but instead of being sad because he isn’t “normal” I’ve found a place where I can see the blessing in the difference. Yes, this will mean more appointments and hard things that Carter doesn’t love doing. But, at the end of the day he is the answer to SO MUCH prayer, and he is a blessing. (As is his perfectly “normal” twin brother Caleb!)
Here’s the hard part, the real part. I lack patience with him – way too often. I get short and crabby and sometimes make quick remarks that I know aren’t said in a way that is pleasing to the Lord. And I can see his eyes get sad and his shoulders slump. Blah – it’s just plain hard and sometimes I’m just selfish. There I said it!
And Carter, well, he’s getting old enough to process different and ask questions. On our way to these appointments he just let it all out and cried and said “mom, I don’t want to be disabled.” I’m telling you, he is so far from disabled. He swims like a pro and plays football with so much heart and skill, and on and on. But, he also lives with the real struggle of mental health issues, and realizes how it makes him different and how other kids see it. As I blinked back my tears, I reassured him that he is anything but disabled and that he can do whatever he sets his mind to. Carter doesn’t know names or diagnosis. He knows that he struggles and needs medicine to help him. He knows that if he misses his meds he feels different. (Please, for his benefit, don’t share any “diagnosis” stuff with your kids until Carter is at a spot where he is ready to process that with us!)
All of this very long blog post is an act of obedience to the Lord. I’m taking off the mask and getting real and vulnerable. I’m not looking for sympathy, or accolades on what a great parent I am. I just really feel like someone out there needs to know that they aren’t the only ones walking down this road. That the times they feel alone, like no one else walks a path like they are on, that many of us do, and just have been holding back. I’m not ashamed of Carter, or of his diagnosis. I just don’t trust the real world so much. But, I do trust my savior. And he says it’s time, well then, it is time. It’s time to be real, and to talk about this, and trust him with the rest.
If you want to connect and be real, I’d love that. We aren’t perfect people at this house, and we don’t live in a perfect world, but we will – one day – because Jesus is our perfect savior. That is the hope that we hold onto as we take one day at a time!