Wednesday, September 30, 2015

The 2:00 a.m. Brain

As any parent of a child with special needs can tell you (and probably any parent can tell you), there’s always a chance you will wake up at 2:00 a.m. with a kind of fear in your heart. It’s not every night, thankfully—not even most nights, truly. But at least for me, it does happen with some regularity, and it’s never fun.

I start my post with that paragraph simply to say that this has been a season of 2:00 a.m. wakeups for me. Don’t get me wrong—it’s also been a season of lovely new adventures, measured growth in development, and plenty of time to play and have fun.

A couple weeks ago, we entered back into the school year routine. Matthew is doing two preschool programs right now: the school district developmental preschool in the morning and then an intense autism day treatment preschool program each afternoon. The autism preschool requires six hours each week of involvement from our family, which we are thankfully spreading between Aaron, my parents, and me. However, the drop offs and pickups, the transitions, and the shuttling from one program to another has left me feeling extremely worn out.

So why do we do these things? Because we continue to have such high hopes for our boy. The progress is slow (always) but it’s there, which is encouraging and hopeful for me.

I must admit, if I’m being honest, that I’ve spent much of the past week wishing our story with Matthew was different than it is. My heart turns toward jealousy when I see all the photos on Facebook of children coming home from China who have normal development—who adjust well and start speaking English and fit right into the family routines and family life. I grieve the loss of the child I hoped would come home—my third child, a kiddo who could develop normally, learn to talk, and now be a typical four-year-old.

Instead I spend my days with a child who barely acknowledges me—who struggles to communicate his needs and soothes himself with autistic tics like hitting his head, hurting parts of his own body, spitting on his hands and smearing the spit into his hair, or throwing toys with great force. We have dents in our walls and woodwork, a pile of broken or destroyed toys that sit on a shelf until we finally shuttle them to the garbage can, hoping our big kids don’t see the destruction their youngest brother has wreaked on their favorite childhood toys.

We’re seeing signs of stress on our older children right now too—earlier this week when I asked her to quiet her piano playing, my daughter said, “Why don’t you ask Matthew to shut up instead. He’s the truly loud one in the family.” I was slightly aghast at her reaction, but I also identified with the feelings she expressed. Four of us in our family spend our days tiptoeing around the fifth—keeping the house quiet when he’s sleeping, adapting our routines to make sure he can watch his favorite television show or eat a meal when he’s hungry. Unfortunately Matthew has very little tolerance for delayed gratification—probably because he doesn’t have enough language to really understand what it means—so we pick our battles carefully. We do tell him “no” regularly—but it’s always a battle to help him understand. Re-directing his attention is our only real hope of success.

Sometimes the big questions loom—who will our boy be as he gets older? What delays and challenges will he outgrow and what will stay with him for his lifetime? How do we do some of the “normal” things our family likes to do, like traveling and eating meals at restaurants? (We haven’t had a meal out together since Matthew was about two-years old). Is it okay to continue with some of those things we love, even if it means leaving Matthew behind? Will he be sad or impacted? Does he even know?

Right now, during this particular season, it’s impossible to leave Matthew unattended for even a minute. Maybe that doesn’t sound like much of a big deal—a normal thing with raising children—but by the time my big kids were about three, I could be doing things in other parts of the house, trusting they would come find me when they needed something. Matthew is almost five and we have been attending to him in a very intense way since he came home from China. Destruction ensues when we don’t keep our eye on him. He’s also become very demanding in terms of our attention. This is actually a good thing—he’s learning to value social interactions—but in the normal routine of life, after a long day of work, it feels really overwhelming to me some days.

Some days I cry for no reason. Well, actually for good reason: the weight of this life feels very heavy upon my shoulders. It’s easy for us to feel isolated and alone.

It’s hard even to write these words—I’m such a “glass half full” person in general. But I also feel called to be honest about our journey—to tell the truth when it is hard. Recently I’ve read a couple posts from adoptive parents who are walking a similar journey as we are. Each time I stumble upon something like that, I feel buoyed and encouraged by someone else’s shared experience.

I do know that it’s not even as hard as it could be around here. I think of kiddos who are battling childhood cancer or a parent who is caring for a child like Matthew on his/her own with no partner beside. Some children spend their lives in wheelchairs with mobility issues or are prone to very violent, destructive behavior. These are all very hard stories, and I feel deeply for anyone walking a hard path.

But when our family story feels heavy beyond what I can tolerate, then I find myself awake at 2 a.m. worrying about the little things. How will I get through today? What will tomorrow bring? Will this be my life and my story forever?

I know these questions don’t have concrete answers, and they probably aren’t even the most helpful questions to be asking all the time. But I wasn’t expecting so much grief and loss in this adoption journey. I wasn’t prepared for the jealous twinge in my heart when I look around and see other families and their “easy” adopted kids. In some ways it feels random and unfair to me—why did they get a kid who is easy while mine is so very difficult?

And yet I’m the first person to say I don’t believe life is “random” or “fair.” I do believe in the Holy Spirit’s calling, and I believe in a God who equips us for the challenges we face. Some nights, around 3:00 a.m., I finally remember these truths and begin to breathe into them with my body, and a kind of loving presence fills and covers me until I fall back asleep.

It’s that loving presence that helps me survive each day right now. It’s that presence that soothes me like a mama, teaching me how to soothe my boy. And even when all else is extinguished, there remains a tiny flame of hope in my heart—burning quietly but steadily, even at 2:00 a.m.

It’s a season, I keep telling myself. This too shall pass.

Oh how I hope those words are true.


  1. Sigh. I can't even imagine what you and your family live with each day. I do know that your love for Matthew shines through. I am praying for all five of you.

  2. Thank you for your honest words. I am sending my love and prayers.

  3. I also am walking your path, unexpected, overwhelming and depressing as one of our adoptions went the same as yours. We knew in China our child was more severe then we could handle so we are hanging on, but are debating about not continuing long term which brings shame, sadness. For my family, it is becoming more then we can bear. We feel long term the effects on the rest of our kids, our marriage its too much. Since we have many other kids, we feel our child would be better served as an only child. We just are stretched too thin and we know it. For us, its either we really look at this option, or hope that something changes and fast. Its a hard thing to look at other peoples stories and not just feel sick, why us has crossed our thoughts daily and we also wake up in panicky moments at night too. We have even talked about separating our family, through different housing types, like buying a duplex and have talked about the probability of our marriage not making it. For us, this isn't ok. God doesn't put two people together to tear them apart, prior to this, we have had major trials in our decades and decades of marriage, so we are a strong couple. But still, it has taken its toll and we feel our marriage matters to us more then trying to hold on to a life, we just know can't be sustained. Every family is different in what they can handle and I am both inspired and awed at your tenacity and drive to help your son. Its nice to see another family with the same story, working it out. For my group, its likely not going to be the case. If I just had a few kids, it would be ok, but there is no way to help our child develop when there is no time. We were expecting a minor SN and got a severe one. We weren't even approved for this nor would any right minded social worker agree that this need would be a fit for our family composition. Just sad all the way around. Thank you for sharing so candidly your story, while the guilt we feel over all of this weighs heavy on our hearts. We know God has a plan, and we in the end likely will just serve as a small point in our child's life, that God allowed us to do for a season. It is so unfair, but God will bring beauty from ashes for us and for you. Again, Thank you for sharing your struggles. I used to be so positive, now I am so beat down, but am getting more peace daily on what needs to happen next.