On Releasing Control: my son's autism and all the feelings

I sat on the floor staring at him. Liam was crouched in a corner clutching a drink cup. My heart hurt. He wouldn’t let me close to him while there was even a sip of his precious beverage remaining but once he had finished he popped up and ran to join his brother in the back room to watch television. As music from Curious George drifted through the house my tears came. The tears grew into sobs and I sat in my living room, letting myself have the luxury of a small breakdown. When the tears passed I lay down right where I was and drifted off to sleep for just a few minutes.

There is so much “expert” advice out there warning against sharing the hard times of parenting children who have autism. The fear is that one day the child will read what you’ve written and be hurt or offended. But the thing is, I love Liam so much my heart aches when I look at him. He is so often a joy to be around. He is silly and mischievous and playful. He has come so far over the last two years. Yesterday he was running around the house with his truck but partway through his solo play he decided he wanted James to join him so he found James’s truck, asked me to help him get it, then brought the truck to James so that they could race around the house. Two years ago I couldn’t him to pay attention to me for more than about 30 seconds. He is doing so well.

The morning of my breakdown we had a well-check for Liam. Despite how far he’s come and the progress I see in him, whenever I am forced to compare him to a typically developing four year old I am reminded of how wide the gap still is. We sat in the waiting room, the three kids and myself, balancing the clipboard in my lap attempting to complete the developmental survey for Liam that for most kids is perfunctory. Yup, yup. Suzie is doing all of these things. Yea, I’m pretty sure I saw her do that last week. It went a little different for me. No, he’s not doing that yet. “Liam, can you tell me which circle is the smallest?” Liam: blank stare at the the waiting room television. I guess that one’s a, “not yet,” too. In every area of the survey—communication, problem solving, social-emotional, fine motor, gross motor—he was below typical. In some areas, like motor skills, he may have had the skills to complete the tasks but not the communication ability to understand the task. To add insult to injury we couldn’t even complete the hearing and vision screens they usually do at the four-year well-checks because he can’t reliably label his letters. Then we spent what felt like forever waiting for the doctor. I had to breastfeed the baby while trying to keep the boys from breaking a limb jumping off the exam table or destroying the expensive medical equipment.

I left completely wrung out. Liam cried off and on the whole way home, angry that he had gotten shots. By the time we pulled in to our house both the boys were crying and yelling at me. I attempted to bribe them into the house with the promise of television. No luck. I poured myself a coke and downed it. I poured myself a second coke and re-attempted to bribe them. Success. James hopped right up on my bed to watch television. Liam came in and cried for a drink. I offered him some juice. He cried harder, great big crocodile tears streaming down his face. He picked up my coke took a sip. The tears slowed. I reached to take it back and he turned away from me, crying again. He ran into the living room and wedged himself between the couch and chair, everything in his body language screaming, “Don’t touch me!”

As he finished my soda the sadness and guilt pressed in on me. Sadness at the ways he is still so far behind. Guilt over letting him drink such an unhealthy beverage. Whatever you might be thinking of me for letting him have it, know that I was judging myself six ways to Sunday in that moment. I just didn’t have the heart to take it from him. I spent the morning confronting all that he can’t do. All that autism has denied him. In that moment, however illogical the rationale, I couldn’t take one more thing from him.

It’s been seventeen months since he was diagnosed with autism. The news caught me off-guard. He had been receiving services related to his speech delay for seven months and none of his therapists expected an autism diagnosis. I know that the label of “autism” doesn’t change one bit of the awesome kid that he is. He is still my sweet Liam, full of laughter and joy. But convincing my head that nothing has changed doesn’t necessarily convince my heart. I needed the chance to let myself feel sad about the delays Liam has. To feel sad and frustrated that I don’t know how to meet his needs or address his wants because our communication isn’t happening on the same wavelength.

For so long I’ve been stuffing my feelings, trying to convince my heart to feel whatever my head said it was supposed to feel. But that’s not working anymore. I want, I need, to let myself feel. Sometimes I feel angry. Sometimes I’m sad. Sometimes I’m happy or amused. So many times my feelings don’t make sense and I don’t want to apologize for that anymore. My feelings are my feelings. I know there are people out there thinking, “But! In your anger do not sin! Feelings should always be in submission to the Lord!” and those people are right… but in this moment I’m going to trust more in the power of the Lord to transform me—including my feelings and my thoughts—than I will trust in my own power to control myself. 

If that means that sometimes my feelings are a little out of control, so be it. 

That’s sort of the whole point.

What My Son's Autism Taught me About #BlackLivesMatter

I want to start by saying that having autism is not the same as being a person of color. The two experiences are apples and oranges. Quantifiably they are impossible to compare well and the point of this post is not to quantify anything but to draw some comparisons and share how my experience raising two sons with autism has opened my eyes to the reality of privilege in the US, the frustration of personal experiences being discredited or mistrusted because they aren't shared by the listener, and the emotional gut reaction to "one of our own" being a target of violence. These realities have been true of me in my journey as an autism mom and I think they are shared by many people of color. What makes these two journeys similar is that they are experienced by people on the "outside" (more on that later); what makes these two journeys different is too long a list to detail but there is one important difference that I want to highlight: autism is considered a neurological disorder. There is nothing disordered about black and brown skin.

Privilege is such a tricky thing to write or talk about. It carries an enormous weight of baggage such that the average listener can have a visceral gut reaction to the word. But it doesn't have to be that way. Acknowledging the presence of privilege is not to say that any one particular person is racist or exclusionary. For the purpose of this post I will say that it is the delineation between an event, service, or commodity being developed with or without you in mind (it is so much more than that, but this one aspect represents a way that autism families experience it). For instance, our family recently attended Vacation Bible School at our church. We reached out to the organizers to make a way for Liam, who has communication and potty training delays to be included; Nathan served in his classroom to be his personal helper. The event was not designed to accommodate an individual with Liam's needs so we had to work to find him a place. He would most likely not have been able to attend if one of his parents had been unable to volunteer, a demand which was not placed on most of the families who attended. On the first night VBS kicked off with a Family Fun Night complete with face painting, inflatables, and a shaved ice truck. Despite the work we had done to include Liam and both Nathan & I being present, that first night was a disaster for us and we had to leave early. Liam desperately wanted to go on an inflatable but the line was long and he was unable to tolerate the wait. Rest assured we are working with him to develop waiting and turn-taking skills but that was simply not the appropriate time to hammer in those still-developing skills. Afterward I suggested to one leader that in the future we provide "Special Needs Passes" for families that have kids with special needs. Such a pass would allow families to proceed to the front of lines. Such a pass would have allowed us to join the activities of that first night. Here's an example of privilege at work: the night was designed with the "typical" family in mind and since our family is not so typical it wasn't something we were able to participate in. Please know that the leader I spoke to about the special passes was very receptive to the idea. I know that some of these issues are growing pains and not the "fault" of any one person. WHICH IS WHY THIS IS A PERFECT EXAMPLE OF PRIVILEGE. No one intended to exclude our family, but without intentional effort to include our family, it was inaccessible to us.

I share pretty openly about my experience raising sons on the autism spectrum. Since ASD is so thoroughly misunderstood and misrepresented by the media people often have a hard time understanding the specific difficulties we face. In many ways the challenges of autism seem like exaggerated versions of the challenges all parents face. So when I share about the meltdown Liam had over his hair getting combed, it's not uncommon for me to hear something like, "Well, that's something all kids struggle with." On the surface, that's true. A child having a hard time getting their hair combed is not rare. But this is where a careful listening ear and some trust can go a long way. When I say, "meltdown" what I mean is that he was INCONSOLABLE. That morning we attempted to comb his hair for approximately 30 seconds. He cried the whole way to school and for at least an hour after he got there. Sometimes I feel this pressure to word things in just the right way, to share just the right stories or my experience as an autism mom and my role as their advocate will be discredited. I can't help but think that people of color must often feel similarly. We place a burden on them to educate us on what they experience then we don't really listen. We accuse them of pulling the "race card." We label them as the "angry black person." We discredit their experiences and their rights to advocate for justice and equality. It is so much easier for me to appreciate the reality that I don't have to share an experience with someone to validate it than it was before I began this journey as an autism mom.

The autism community feels pretty connected. When a child with autism goes missing we are the first to share Amber Alerts. We follow each other on social media to encourage one another and share thoughts and ideas. When tragedy strikes an autism family it reverberates through our community. So in the fall of 2014, just months after my boys had been diagnosed with autism, when there were a few particularly nasty instances of bullying against individuals with autism, I felt the fear and pain in my gut. During the slough of ice-bucket ALS videos, people went through the trouble of collecting a bucket of urine and feces just so they could dump it on someone with autism. A girl lured a fellow high schooler to a party so that her group of guy friends could gang up on him and beat him till he had a concussion. In the latter instance it seemed as though the people involved would not have charges brought against them for their hateful violence. My heart and mind cried out for justice. I felt sick to my stomach, full of fear and anger at the thought of that being my James or my Liam in 10 years. At around the same time the Eric Garner and Michael Brown cases were all over the media. And then I understood. At least in part. If people were targeting kids with autism and not being brought to justice and this was more than one isolated incidence.... I would be in the street. I might riot or tear something down. I would most definitely protest. I would make sure people knew. I'm not saying any of those reactions are the most sensible or moral things to do. I'm just saying I wouldn't stand for it. The Momma Bear in me would be wakened. I would be angry. And I hope, I really really hope that you would be angry with me. Would you stand with me? If kids with autism, kids just like my James and my Liam were being brutalized for no good reason with no legal ramifications, WOULD YOU STAND WITH ME AND CRY OUT FOR JUSTICE?

And this is why I have to speak out. This is why I have to stand up and say, "This is not okay. This is not right. I will not remain silent as this evil is perpetuated." Because for the first time in my life, I understand just a tiny part of the fear and frustration of a black mother. The #BlackLivesMatter movement is a cry for justice. I hear those words as a cry of pain and fear and anger, "We are being brutalized without justice. We can't, we won't continue like this. We are people and we matter." I speak the words as a cry of solidarity, "We won't continue on like this. You are people and you matter. This must change."

I have been hesitant to publish this post for a few reasons. 

1) I'm not a person of color so I really have no place telling you what they think or feel. 

2) I don't want my voice to keep you from listening to an actual person of color (for too long white people have adopted a savior complex that we can fix or save disenfranchised and oppressed people groups). 

I decided to go for it for a few reasons.

1) There are people who know my kids or other individuals with autism who can relate to my words but who have a hard time understanding the #BlackLivesMatter movement. This post is meant to invite those people in and share perspective.

2) What I really hope is that if you find yourself with a new understanding and wanting to know more, that you would begin to intentionally listen to the voices of people of color. Read their books, follow their twitter accounts (@austinchanning, @breenewsome, @mskathykhang are people I follow whose voices I value)

3) I have been afraid to write something as pointed and detailed as a blog post. Despite sharing articles and writing Facebook statuses I have been afraid of what the response to a blog post might be. I think that fear is based in what other people might say or think about me and not in what the Lord has to say about me or what he might be calling me to.

Annia Hope

Just over one year ago we found out that I was pregnant again. So much has happened in the last year and I just wanted to share about my pregnancy, how we chose her name, and my birth story.

The Pregnancy

Having suffered the loss of two pregnancies the year before, I was terrified from the moment the line showed up on my at-home pregnancy test. Over the next week or two I wrestled with the Lord about what it meant to trust him with this tiny life. I remember him saying, "She's in my hands. And by the way, so are you," (it was kind of a joking way to remind me that I don't have any real control over my life much less the lives of my kids). Eventually I came to the place where I could say, "Lord, I know that you are powerful enough to intervene on my behalf and keep my baby safe and healthy. But I WILL NOT STAKE MY HOPE IN YOU AS A GOOD GOD ON YOUR WILLINGNESS TO DO SO." I still wasn't able to fully relax until our anatomy scan around 20wks. Seeing her healthy and whole was such a relief. Then, as we approached my due date my fear was renewed as I have friends who have lost their babies during birth. Obviously I was relieved when birth went smoothly, but more on that later.

I couldn't eat eggs or drink coffee for the first 8 weeks of my pregnancy. I was nauseated all of the time. I started craving savory things which was weird because I'm usually all about sweets. One of my most persistent cravings was for black olives which I've never actively wanted before (I still want them even now!). As a pregnant person you never want to complain because you know that so many other people want to be pregnant so badly, but at the same time, pregnancy is hard. It was so helpful to have a few close friends that I could be honest with about how I was feeling.  

Her Name

Lots of people have asked about her name. They've wondered if it's a family name, how it's spelled, how we came up with it. The truth is simple and some might say it's strange. I know it feels strange to say and I know that many won't understand.

The Lord named our daughter.

Being that we were scared during so much of our pregnancy, we prayed for this baby a lot. Sometimes when we prayed together we would leave space in our prayers and ask the Lord if he had anything he wanted to share with us about this tiny life. We were surprised when, in his mind's eye, Nathan saw the letters "A-N-N-I-A". We looked up the meaning of the word, "inexhaustible grace". I wish I could say that over the next few weeks the name just grew on us and that's what we went with. But that wouldn't be completely honest. Now I can say that I love her name, but it honestly became a point of surrender to the Lord. 

There were two other names that I liked a little more than Annia Hope. They were family names that I had picked out when we were pregnant with James. I would often ask James, as a ploy to manipulate the situation, what he thought we should name the baby and he almost never picked Annia from the list I gave him. Eventually I realized that it was easier for me to theoretically surrender this child to the Lord and his purposes than it was for me to allow him to name her.

It was easier for me to surrender this child to the Lord and his purposes than it was for me to allow him to name her.

In some ways "surrendering" her to the Lord can remain theoretical. In some deep part of me I continue to doubt the Lord's presence and hold on my life so surrendering her to him can remain abstract and without any real substance. Allowing him to name her affects her for life. She will carry that name forever. It was significantly harder for me to say yes to that. 

I don't remember when I came around but eventually I surrendered. Annia Hope. Inexhaustible grace. Hope. Two things that I struggle with. They signify my continued belief in the Lord's goodness. My re-definition of him as a good God who is full of grace, one that I can hope in. And her name represents the shift in my heart that remembers that "grace" and "hope" don't always equal happy earthly endings. They mean eternal goodness and healing of the heart. Ushering in the kingdom of God on earth. This is the grace that I hope in.

Her Birth Story

First, some history. When Liam was born I showed up to the hospital at 6am and he was born at 8am (they broke my water and he was born within 5 minutes). So when I found out that I was Group B Strep positive and would need to show up to the hospital 4 hours before delivery to begin antibiotics (to protect Annia from contracting it during delivery) I was nervous about my timing.

James was born 14 days before his due date and Liam was born 9 days before his due date. I was prepared for Annia to arrive on December 1st even though her due date wasn't until December 23. I wanted to be ready. I put all of my plans on hold and made sure everyone knew that all plans were subject to the imminent arrival of our daughter.

The closer we got to my due date the more convinced I was that I would be pregnant forever. There's a first time for everything, right? There are medical anomalies happening all the time, surely this baby was never coming out. I was miserable. And also trying to soak it in because Nathan & I had decided that this was going to be our last biological child. 

Eventually I just decided that the wait would be easier if I assumed I would be pregnant forever. We planned to host Christmas Eve brunch and have my parents over for Christmas dinner. On the 23rd I had some consistent contractions and put my parents on standby to hightail it to Greenville to watch our kids so we could go to the hospital. Then the contractions went away and we all went to sleep. Christmas Eve came and my parents, my siblings and their families (minus my brother's family--we missed them though!) all piled into our little house for food and presents. That afternoon my sister and I went walking around Target to try to get this baby moving. My parents had originally planned to return to Raleigh for the evening to spend Christmas morning with my mother's parents but I asked them to stay the night just in case. At dinner time my contractions started to pick back up and were fairly regular, about 10 minutes apart. I felt confident it was the real thing and decided to go on in to the hospital so that I could start my antibiotics as soon as possible.

When I got into triage at 8pm I was 3cm dilated. They decided that if it was real labor it was still early and that I should return home to labor there and come back to the hospital if my contractions picked up. Frustrated and discouraged, I returned home.

My contractions slowed down some then gradually picked up during the night. Liam was fighting some kind of bug and running a fever. Nathan was having to get up and check on him repeatedly so I finally suggested that I would go labor and rest on the couch and that Liam could sleep in our bed with Nathan. That worked until around 2 in the morning when I felt a little pop. My water was broken and leaking. There wasn't a huge gush because her head was so low the fluid could only leak out around it. I knew that things were going to pick up so as soon as I was sure that it was my water breaking I woke up Nathan, told my parents we were leaving and called the doctor. 

We got to the hospital around 3am and I was in a lot of pain. We waited in the lobby for about 20 minutes and my contractions were about 3 minutes apart at that time. Eventually the receptionist started to get a little nervous and called the nurses from triage to hurry up and get me. We made it to triage where they had me change into their gown and pee in the bathroom. I'm sort of amazed I could do that on my own. They checked me immediately and I was completely dilated! I remember saying, "I want drugs!" She regretted to inform that there would be no time for that.

They wheeled me to the delivery room on the gurney and I was in such a daze I have no idea who we passed or how we got there. I do remember having to get off the gurney on to the other bed in between contractions. I'm pretty sure I laid in the crack between them for a minute because it was just too hard to move. They kept saying, "Try not to push!" and all I could think was, "haha, you're crazy. This baby is coming out and you're not gonna let her fall on the floor." 

I remember saying things like, "I want this baby out!" and, "Is it like 80 degrees in here?" 

Natural childbirth is a lot like a roller coaster. You're standing in line looking up at this big ride thinking, "Yea, I can handle that." You get closer and closer and get nervous but convince yourself it'll be good. Then you get on a strap in and as you go up that first huge ascent, you start to panic. "Oh shit. Oh shit. Oh shit. Why did I think this was a good idea?!" But at that point it's too late to back out. By the time the pain of childbirth is so intense you are desperate for drugs, it's too late. You're committed and you just have to ride it out. 

By the time I got to the hospital, it was too late for drugs and I just had to ride it out. At 8lbs 9oz Annia was a full 1.5 pounds heavier than Liam at birth and let me tell you, I felt it. They brought in a doctor I had never met before to catch the baby but my doctor got there literally 2 minutes before she was born at 3:54 Christmas morning.

She was beautiful and healthy and latched on to nurse within minutes of birth. Because of the Group B Strep we had to stay in the hospital for 48 hours to monitor her. It's funny, when she was born she had a little pustule under her tongue, about the size of a mike & ike. When my sister who is a nurse came to visit I knew that she would be intrigued by that little anomaly but by that time it was gone. It had busted and disappeared on its own.

While we were in the hospital Liam continued to fight his bug. Nathan had to leave the hospital to take him to the after-hours night clinic where they said his ears were clear but checked for strep. We asked my nurse sister to come stay with my parents and the kids to help with Liam. The next day Liam's ear drum ruptured and she took him to our pediatrician who confirmed that he had a severe ear infection. It was so stressful for me to be in the hospital with our newborn knowing that Liam was so sick at home. I felt like worst case scenario he would get severely dehydrated and wind up in the hospital. Not being able to see him or take care of him personally, I had no idea whether that was a real possibility. Thankfully he perked up with the antibiotics and quickly returned to himself. 

James was thrilled to welcome her home and we were so excited that my parents were able to meet her before returning to Nigeria where they live as missionaries. A few days later Nathan's parents were able to travel from Virginia to meet her and help us for a few days.

Annia Hope is now 4 months old and thriving. We have been blessed with a grace that is inexhaustible even when we don't understand it and we hope in a God who knows the end of all of our stories.

1 in 68

1 in 68 is the most recent statistic released by the CDC for the prevalence of autism among kids. This specific number was calculated in 2010 based on kids who were born in 2002. The statistic is even higher among boys although many people suspect that there are many girls who are going undiagnosed because they can fake social interactions and fit in, making it difficult to determine they need evaluations.

When one child in a family is diagnosed with autism the likelihood of his or her siblings also being diagnosed increases. In our family James and Liam have been diagnosed as having autism. Their younger sister is only three months old and it is too early to know whether she will also fall on the spectrum.

April is Autism Awareness Month. Last year our diagnoses were fresh and I was surprised to learn that there is a significant amount of disagreement within the autism community about whether an "Awareness" day or month is helpful. Many people advocate for an "Acceptance" day as an alternative. Many of the bloggers I follow chose to opt out of the conversation this year because it raises so many strong emotions in cyber-space.

While I agree that some of the "awareness" dialogue is harmful because it elicits fear rather than understanding and it can be hurtful to individuals with autism (making them feel de-valued as people, the very LAST thing I want to do), I think we should be careful not to throw the baby out with the bathwater so to speak.

I think that autism awareness is a chance to educate the general public on warning signs so that they can get their own kids evaluated when necessary and more kids will get access to early intervention. James is a much happier kid since we've gotten his diagnosis because I can meet him where he is instead of forcing him to comply with my brute force (as I was doing before we found out that he has autism).

I also think that we need more autism education so that employers will consider hiring individuals with autism to be integral parts of the workforce. Unfortunately 35% of young adults with autism have never had a job or received post-graduate education after graduating college. I think the workforce could truly benefit from having individuals with autism in some key places given their attention to detail. 

In addition to employers being more aware, it would mean so much if more parents and kids knew how to talk about autism. I was recently at my sister's house and our kids were all playing outside together. My 3y/o, Liam, who struggles with communication and play skills pretty significantly, took my 4y/o nephew's matchbox cars to the back yard and was driving them through the mud and dirt. My nephew was a little upset that his cars were getting dirty and my sister handled it with so much understanding and aplomb that I needed to share. She said, "Liam feels more comfortable when he has a car. We don't want him to feel anxious outside, do we? We can always wash the car off later but this just helps him to feel comfortable playing with us." Of course my nephew responded that he didn't want to play with Liam, he was playing with James, but now he has some groundwork for understanding and playing with kids who might be different in the future. Heck, we're pretty much assured of him playing with my kids in the future. My sister's response to him actually helped me put into words why Liam is so attached to cars (he gets a little lost in people games but he knows how to play with a car) but more than that it showed such understanding and acceptance of who Liam is right now. Of course in the future I will try to teach Liam how to ask to play with the cars, how to accept if a friend says, "no," and how to be comfortable playing without cars. But he's just not there yet and that kind of teaching is better set in a therapy session or when we are at home and can handle other environmental factors. But when we are visiting cousins or having a playdate, it means so much to just let Liam be Liam.

No matter if April is Autism Awareness month or Autism Acceptance month, the reality is that autism is an incredibly misunderstood disorder affecting approximately 1% of the population. Which means if your church or school or community has more than 100 people in it there is likely to be an individual with autism present. And the question is, how will you respond when they show up? Will you take the time to learn their strengths or brush them off as weird because they aren't socially adept? I can't wait for James to have his own voice in the world but for now hear the cry of a mother who aches for her children to be accepted as who they are--sweet, joyful, intelligent kids.

Autism for us means James finding the "line of symmetry" on his pizza slice. Hugging people he's just met. Reading early. Distress when people don't follow the rules. Apologizing to the staff at the bowling alley for stepping over the foul line. Floppy arms & messy handwriting. Excited flapping. People commenting, "He seems so normal!"

Autism for us means Liam has a very difficult time with communication. Asking, "I want cookie," at 3yrs 8mos for the first time. Celebrating when he said, "NO! My turn." Confusion, frustration, feelings of inadequacy when I have NO IDEA why he's upset or what he can't communicate to me. Singing "Let it Go." Lining up cars. Sweet smiles. Jumping off the couch. Hiding under the blankets together.

Autism for us means big hugs. Big smiles. Innocence. Pure joy. Trains and cars everywhere. Avoiding large crowds (no big Easter Egg Hunts). Bringing a child's leash because I can't risk them running into the street. Panic. Worry. Tears. Getting kicked out of preschool. Trying new preschools (terrifying). Seeing them thrive in new settings. Bonding with other parents over things no one else would get (melt downs about shopping carts for instance). Celebrating milestones. Chucking parenting advice (especially anything titled, "get your child to (fill in the blank) in 3 days!" hahaha). IEP meetings. Drowning in paperwork that needs to be filed. Endless research and learning.

Autism for us means a different normal. The same intense love for my kids. The same worry about their futures. But set in a different context. My hope is that April's focus on autism will begin to remove the stigmas and misinformation surrounding autism so that my boys and other people with autism will be accepted for who they are with unique talents and abilities.

http://www.autism-society.org/what-is/facts-and-statistics/

Liam upset because he wanted to ride his "cycle bike" and he didn't understand that we had to dri ve to the Greenway to ride them.

Our family wearing blue on April 2 for Autism Awareness Day.

 

James finding his line of symmetry .

Cora Ann

One year ago was Cora's due date. She would've been one today (or around today). Missing her doesn't diminish my love for Annia and loving Annia doesn't mean I don't still miss Cora. The heart is complicated.

We miscarried in July just a few months after losing Samuel. I don't believe the Lord caused it to happen but I do know that he used that awful, heartrending loss to do a powerful work in me. I'm a better person for Cora's time on earth. Her short life wrecked my view of God and upended all of my preconceived ideas about how he works. My faith in him is stronger now than it ever was before.

I recently had a moment in the middle of a study on parenthood where I just sat back and realized that I am thankful for Samuel and Cora. For a long time I wondered why the Lord even let us get pregnant if we were just going to lose those babies. But now I think about how their value as people isn't less because they spent such a short time on earth. What a narrow view that would be. We will be a family with them in heaven.

My heart has been changed by each of my five children. My body has too. I carry stretch marks and extra pounds from the three kids who are still here. But those marks encourage me to admire and value my body. My body grew humans, birthed them, and fed them. That. Is. Amazing. And also... my body didn't grow two humans. It lost them. My body couldn't keep those two babies inside. Sometimes I feel like my body betrayed me.

Today I'm sad. I'm sad that I'm not planning a birthday party. I'm not making a special cake for my special girl. I'm not celebrating milestones like her first steps or first words. 

Instead, I'm looking at the one picture I have of her, an ultrasound print from 6w6d, just a day or two before we miscarried. I'm writing her a letter and asking the Lord to give her a hug and kiss from her Mama. I'm shedding some tears and ignoring most everyone. I'm thankful for the people who remember what this day means to me and text me to let me know they're thinking of me. And I'm planning to buy a few cupcakes to remember her "birthday" with her father.

I love you, Cora Ann. Mama misses you.

Death to SuperMom

I have a confession to make. I've been lying. If you have seen me in the last week or two and have asked me how I'm doing, whatever variation of, "I'm okay," "Doing alright," "Hanging' in there," or "Alright but tired," I've given you, it's been a lie. Most of the time I feel like I'm barely hanging on.

There are so many reasons for this, it's hard to explain what's wrong. It's been a difficult week logistically. Liam had a stomach bug the same day that Nathan had minor surgery so I was taking care of all of us... no small feat with a nursing infant. I'm tired, physically and emotionally.

There are times when I barely even notice the boys' differences. Their autism becomes part of our normal and it disappears into our routine. But there are other times when their differences seem to glare at me in the midst of a playdate and I'm overcome with sadness at how difficult the world is for them to navigate and how it's even more difficult for the world to understand them. I'm in a season of the latter, overwhelmed and saddened, always in love with my boys but mourning the reality their lives might not be what I had dreamed they would be.

The deep, swift current flowing under the surface is what this month means to me. I feel like so many of my blog posts are spent recounting the past and sometimes I worry that people may tire of that, urging me to just move on. The problem is that the past has shaped me and it's impossible to express myself today without the background of yesterday. So bear with me at least once more because I can't look at the calendar without thinking about where I was last March or the one before that. Two years ago Easter came early, the last weekend in March, and it was the weekend we miscarried our baby Samuel. A few months later we miscarried again and the due date of that baby, our sweet Cora, was March 18th. Last year, the day before her due date Liam was diagnosed with autism.

So when I tell people how I'm doing "okay," I'm basically lying. I'm not doing ok. My house is a wreck. With the exception of a few weekly church events I look like a wreck. I'm barely keeping up with house work and homework and the mom-guilt just keeps piling on. But it feels too complicated to get into how I'm really feeling when we're calling to each other from across the church foyer or greeting one another at the entrance to the women's conference. In the midst of this down season I've received a few compliments on how patient I am with my kids or how I must be SuperMom because I do x, y, z. And if there's one thing I know without a doubt it's that I'm not a perfect mother, I'm barely keeping things together. This whole thing has gotten me thinking about compliments and SuperMom. And I've come to two conclusions.

We need to change how we compliment one another. And SuperMom needs to die.

When I receive compliments and you tell me I'm SuperMom I just shrink into myself. "SuperMom" makes me feel like I'm not really being seen. "SuperMom" makes me feel like an attempt to debunk that perception will only be seen as false modesty. "SuperMom" makes me feel more alone and isolated than ever before.  (By the way, it's not like I'm hearing these comments all the time but I've heard them enough and spoken with a couple other moms who feel the same way and I feel pretty comfortable generalizing the sentiment).

When you tell me how patient I am with my kids my mind immediately recalls all of the times in the last 24 hours that I've completely lost it, "Stop. Stop. STOP. STOP IT JAMES I'M SERIOUS, WHY CAN'T YOU LISTEN?!" But I appreciate what people mean, I just wish SuperMom would stop getting the credit. She's not real, she makes me feel un-known and alone.

I've also realized that when I compliment other people I mean well but if I'm truly being honest, sometimes there's an element of envy undermining the community that could be built by such a gesture. "You're so patient,"... I wish I was that patient. "I love that outfit!"... I wish I had an outfit like that. "You're home is beautiful,"... I wish I could afford a home like that.

May I humbly offer an alternative? What if instead of offering blithe comments on how great people are, we endeavored to reaffirm the ways that people bear the image of God? What if instead of saying, "you're so patient," we tried, "I can see how much the Lord loves your kids when I watch you with them," or instead of, "you have such a nice home," we looked beyond and affirmed how we can see the Lord's heart for hospitality in them? Or I told my autistic son how I can see the Lord in the way James values steadfastness and order? 

Then, when I receive a compliment, agreeing with the person gives glory to God, not myself. Yes, the Lord does love my kids through me and he does that even when I'm not great at expressing that love. Yes, the Lord does value hospitality even when I don't. And when I extend a compliment it releases me from the temptation to feel envy because I'm acknowledging that the person I'm complimenting bears those qualities because they bear the unique reflection of the image of the Lord... And I bear a different unique reflection.

For me this is about SuperMom. For you it might be SuperDad or SuperWoman. You don't have to be married or a mom or a woman to know this struggle to be the perfect version of you. But if Jesus lives in you, that SuperPerson needs to die. SuperMom tells me I'm not enough that I will never measure up and if people really knew the real me I would be alone and unloved. But the Lord tells me that she has no place here because he has made me to reflect his image to the world.

And that image is beautiful.

Pursue the Passion: The Lord's pursuit of me

This weekend our church is hosting its annual women's conference. The conference is called "Pursue the Passion" and this will be the third conference that I will have attended since I started coming to Covenant Church two and a half years ago.

Two years ago I was mostly new to the church and I sat with people I didn't know very well. Those women would grow to become close friends but I felt lonely and broken at the time. To be honest I wasn't very impressed with the speaker but I could feel the Lord doing a big work in me. When I left the conference I knew that the Lord was calling me to die to the mother that I always thought I would be. I had this image of myself as someone authoritative, who brooked no disrespect, who would not tolerate second-time obedience because only first-time obedience was acceptable. And many of you with kids who are reading this are probably saying to yourselves, "Yea, how'd THAT work out for you?" and the truth is, it wasn't working out for me. I was carrying around a great deal of shame because I thought I was a bad mom; we were getting reports from James's preschool that he was acting out, not listening to direction, and not responding appropriately to discipline. This conference was a turning point for me and in many ways I think the Lord was preparing me for my journey as the mother of kids who have special needs. Just a few weeks later James was referred for an evaluation which would eventually diagnose him with autism. Parenting a child with autism requires a different, more humble approach. The do-it-right-now-because-I-say-so-I-don't-care-what's-wrong-with-you thing is a disaster when the child you are rearing sees and hears and feels the world differently than you do and can't verbalize that something is literally causing him pain. Dying to the mother I always thought I would be gave room to let the Lord shape me into the mother he would have me be, which in turn lets me give room for my kids to become the people the Lord made them to be.

Last year this conference came in the midst of my break from the church. I was hurting and grieving the two miscarriages we had had the year before. I was unsure about whether I wanted to attend the conference. The unimpressive speaker from the year before coupled with the $35 admission fee (quite a hit to our meager budget) had me leaning toward staying home. But a friend who does some work for the conference had been given 4 tickets and offered one to me. I decided to attend but I made sure that I would be sitting with a woman who was safe to me; she knew I was having a hard time trusting the Lord and she was also in a hard place with him. She was the kind of person that would not only understand if I got up and left the room because I was feeling bruised, she would be leading the way. 

That year Lisa Harper spoke and I just loved her. I couldn't tell you precisely what her messages were on but I feel like the crux of the teaching was on the Lord's unwavering love and presence in the midst of hard times. Just a few weeks earlier I had told the Lord that he needed to do the work of changing my heart and turning me back to him because I couldn't do it on my own. It was difficult to balance keeping my heart soft enough to allow him to do the work in me and not trying to do the work myself. But that weekend at the conference I felt the Lord tell me, "I'm doing it. I'm doing the work in your heart. It's not quite done but I haven't abandoned you; I'm doing it." It was also at that conference that my biggest hang-up with the Lord came into focus. There was a song we sang whose bridge repeated the line, "Your grace is enough for me," and I couldn't sing it. I knew his grace was enough to save me, but if that's all I have, his grace and nothing more--no family, no health, no roof over my head--is that enough? That question drove me back to the Lord. When I could say, "yes, his grace is enough," I was ready to trust him again. I realized that he doesn't promise healing from the things that plague our bodies but the things that plague our hearts. This paradigm shift is what brought me to the place where I could risk another pregnancy.

This year my 8-week old daughter will be sitting with me at the conference. She's still nursing on demand so I can't leave her for more than a few hours and I can't help but reflect on the Lord's work in my heart and his faithfulness to me over the last few years. Jen Hatmaker is the speaker and my best friend will be visiting from Chapel Hill with her 7-week old son to attend the conference with me. I know that even if I didn't have the "happy ending" I'm celebrating this weekend the Lord would still be faithful and good and loving. I trust in his goodness not because of my healthy daughter but because of the healing work he's done in my heart.

My daughter's name is "Annia Hope." We didn't come up with it. I know to many people this will sound kind of crazy but we honestly felt the Lord asking us to give her this name. Annia means "inexhaustible grace." To us her name is a constant reminder that the grace of God never ends and there is always hope in the work that he does in our hearts and in this world. We chose the name before she was born, before we knew whether labor and delivery would go well. I have friends and family who have had babies who died at full-term gestation or as the result of complications during labor. Her name wasn't some statement of faith, claiming that she would be healthy and whole-- I still have no guarantee that she (or her brothers) will grow up to be healthy adults--her name is a statement of faith that regardless of what happens to the earthly bodies of the people I love, God is still God. He is still good. And he still loves me.

My hope is in him. And I cannot wait to see what he does this weekend.