So many of you know me because of Christian. This blog is about Christian. Christian has a Facebook following of over 300,000. Christian is recognized in public almost every single time we go out. Everyone who knows me via social media probably knows me only because of Christian. It's a wonderful thing to be able to share our journey with so many friends who support us and carry us along the way, who celebrate when we celebrate and mourn when we mourn. It's so encouraging to know that thousands of people are on their knees in prayer when Christian is under anesthesia in the operating room. I am the happiest person ever to be known only as "Christian's mom." :)
I wanted to write about the juxtapose I have often found myself in, being pulled between wanting to do all the things and be all the things for my kids and not having enough time in the day to do them. So often my life has to revolve around Christian. It's a guilt that I'm guessing every special needs parent knows who also has a typical child, that guilt of knowing that you do things for your disabled child that you don't do for your typical child. It's that little voice in the back of your head that nags at you when you can't believe you just heard yourself say "You have to wait because your brother needs me right now," the one that gets louder when you lay your head down at night. It's that unsettling feeling that never quite leaves you alone, in fact it reminds you often that you have spent so much more time investing in your disabled child, in teaching and coaching him, in showing him how to do things like take off his socks, in wiping the drool from his face, in caring for his g tube sight, in administering pain medications, in doing every single thing the therapist asked you to do this week, in sitting through hours of doctors appointments and therapies. It's a realization that I can recite Christian's social security number by heart, and I don't even know the first number of Chandler's, and that when someone asks me Chandler's birth date, I always start to say Christian's because I've had to write it so many times on so many forms and that it takes a moment for my brain to stop and catch up.
I have this fear that if a stranger simply saw those things, from the outside looking in, and didn't know anything else about my family, they would conclude that I love Christian more than I do Chandler. It's simply not true, but it's a hard case to prove based on my actions alone. The fact is, Christian just NEEDS so much more from me than Chandler does. At 9 (almost 10) years old, Christian needs more from me than Chandler does at 7 years old. It has always been this way and I suspect it will always be this way. Christian still needs me to hold his hand to walk anywhere that isn't inside of our home. Christian needs my guidance at every moment when we aren't in a familiar place. If I take the boys outside, I can let Chandler walk around the yard and play. Of course I have to watch him but I can do it from a distance. But with Christian, he can't walk freely through the yard because he can't see the fire pit that he's about to walk straight into, and he can't find his riding toy if he's looking for it. He can't distinguish which way brings him towards his swing set and which way is towards the road. So when we are outside, Chandler gets to play and be independent with just my watchful eye, while I stand by Christian and guide his every step. I have secretly sometimes been slightly jealous of moms who bring their kids to a playground, take a seat to rest, and let their kids play. I have never been able to do that. A trip to the park for me means following Christian around, helping onto and off of equipment, and physically ensuring his safety every single second we are there.
The guilt that arises from the amount of time I have spent caring for Christian versus caring for Chandler is probably not as bad as I perceive, but there is definitely a dispargement. And I can't help sometimes but be reminded and then feel some guilt for it. The fact of the matter is, if Chandler needed me to walk him through the yard, or spend hours each week working on therpay tasks, or sleep on an upright chair in a hospital for days at a time to be by his side, I wouldn't hesitate to do it. He just doesn't need those things and Christian does. But at the end of each day, that guilt still tries to creep up.And to be honest, no matter how much I do for Christian, I never feel like it's enough either. I always wish I would have done one more lesson, pushed for one more bite, spent one more hour. It's a never ending and damaging cycle. I'm not sure that there is some secret recipe for not feeling mom guilt. I think we all face it. (But if you know a secret, fess up! Inquiring minds want to know!) What I do know is that each day I give my all to my boys, despite that voice telling me I will never be or do enough. And that listening to the lies I tell myself about my inadequencies as a mom will only cause me and my boys harm. They are not helpful! I know that I am a flawed and imperfect human by a loooooong shot. I know that I have so much room for improvement in many areas of my life, including parenting, but I also know that God called me to be the mother of my children and that He has spent the last 10 years (plus) equiping me to be the mother that they need. I'm not going to casually say "I am enough" without some qualifiers, because, if you took an honest look at me, I am so not all my children need and I have SO much lack in me, but I am given enough through the grace and mercy of God to parent them well, and THANK GOD, where I lack, He already knows. I'm not going to say "I am enough" in a way that conveys that I am everything I need to be and have reached some peak of being. But I will say that the beauty of trusting God with my children is that He is more than enough to make up for my lack. Whatever mess ups I make, they are not so big that God can't still work through me, call my children to Him, and work his purposes out for my children as well. Many years ago, a thought came to me about Christian's vision impairment. Christian's vision impairment has always been and probably always will be a sore spot for me. I was thinking on it one day and the lack that Christian, and our family, experienced from this, and a thought came to me. Christian doesn't need his vision. Would it be handy to have? Absolutely. But does he need it? No. God has some big purpose for Christian's life, and if Christian needed his vision to be able to accomplish it, then Christian would have his vision. God's purpose for Christian is not somehow now hindered because Christian is blind. God knew at the beginning of time that Christian would be blind, and I'm positive He planned accordingly. God has or will equip Christian with everything he needs to fulfill His calling on his life. In that same way, how will God not equip me for what He calls me to do? He will. He does. He gave me my boys and called me to the minstry of mothering them. Surely He will be there to help me through. I have seen evidence of this so many times over the years. He continues to equip me to be the mom my kids need at each stage of life. He equips me for everything He's called me to do. And each time I start feeling that mom guilt, I remind myself of this, ask for grace and wisdom, and keep pressing forward, despite how I feel. I keep pushing forwards towards raising good, God fearing men, towards leading my children towards Jesus and not away, towards building a relationship with them that lasts, towards showing them who God is and how much He loves them. All while trusting that God will see my lack and will fill in those gaps with his good grace. So through the exhaustion and stress of this messy parenting this, we must continue to press towards the mark for the prize of the high calling of Jesus Christ.