Background for those who don't know me: I grew up in this church and in a stable Christian home. I've been married to my high school sweetheart, Nick, for 18 years. 8 years ago, we had 4 healthy, awesome kids, 2 sets of supportive parents, a wonderful church family, Nick had finally finished all of his medical training, got a job as a family physician with Sparrow, and we had just built a new house. Nick and I had spent some time in Romania in college working with orphans, and 12 years later finally felt like things were stable enough in our life that it was time to follow our dream of doing more long term orphan care.
I remember sitting on a blanket in the front yard of our new house with the whole family for a picnic dinner and thinking, this is so great. But I still feel like something is missing. I feel ready to do something hard, to take on a ministry that we know will involve some heartache. We’re mature Christians, we have a stable marriage, we’re pretty good parents, we have an awesome support system, and it’ll be so fun to do a ministry together as a family! So we eagerly entered into the world of foster care.
We thought we were prepared, but what followed was 3 very difficult years for our family, hard visits with biological family, a heartbreaking termination trial, and 2 little boys who had no idea what was happening to them and why. Trauma, grief, and confusion swirled together into an ugly storm of rages, destruction, bizarre behaviors and verbal assaults. Our entire family was exhausted. At this point in my journey, my mental picture of myself is sitting on the ground "kicking against the goad" as hard as I could. I even looked up the exact meaning of that phrase during those years because it was such a strong picture in my head. It was like I could hear the Lord saying, "Carissa, Carissa, it is hard for you to kick against the goad." And I just thought over and over, ok Lord, I know you are sovereign and this is for your glory and my good. But it’s not right! I wanted to do something hard, something good, and it feels like my family is being torn apart. This is what I get? The horror story adoption? This isn’t actually what I signed up for, to feel rejected and heartbroken, exhausted and worried about EVERY person in my family every single day.
So we thought, maybe if we finish off the family with one more biological kid, it’ll be this amazing bonding experience for the whole family, the boys will just feel folded in. And there will be a cute little baby for everyone to play with and focus on.
This is the part of the story where I want to laugh maniacally for about 5 solid minutes.
Louisa was diagnosed in utero with a severe congenital heart defect called Hypoplastic Left Heart Syndrome. Many of you know her story fairly intimately, so I’ll try to keep this part short and sweet, which is kind of a joke when it comes to Louisa! The more we learned about it, the more terrifying it all got, especially when we heard them call the 3 open heart surgeries she would have by age 3 “palliative” (pain relieving or extending, but not curative). We stayed at Mott Children’s Hospital in Ann Arbor for 4 weeks after she was born dealing with her first open heart surgery, cardiac arrest, a brain bleed, ECMO, chest tubes, feeding tubes, and lots of machines, monitors and medications. We were home for a handful of weeks and then she had some GI bleeding which led to a 7 ½ week admission including another open heart surgery, a blood clot on her central line which led to 3 strokes, more chest tubes, feeding tubes, monitors and medications. Meanwhile, things were getting more difficult and concerning with our older adopted son Donavon and it felt like everything was starting to unravel very quickly. At this point, my mental picture of myself was hanging off the edge of a cliff with my hands slipping on loose gravel and all of my kids are starting to fall so I try to grab one, but as soon as I grab one, another starts falling. I’m the mom, I’m supposed to keep everyone safe and fed and happy and all of a sudden I can’t do my job with anyone! Now I was saying, "Ok, Lord, you are in charge here, but the thing is, I ABSOLUTELY CANNOT DO THIS. I’m not angry with you or saying it’s not fair anymore. But I can’t take care of my family, I can’t do my job. I’m dumbfounded with how to handle this situation you’ve given us." It’s pretty much a complete blur, but I know He got us through that year, with a lot of help from our church and families. Things got to the point with Donavon that he needed a different situation for a while, so right before Louisa’s third heart surgery, a year and a half ago, he started at a Christian boarding school out of state. Shortly after that, our other adopted son Kelvin started having a lot of trouble at school and home and he is now in an emotionally impaired special ed room. We got through Louisa’s surgery, things have stabilized with her heart for now (this is what HLHS parents call the “coasting time” before complications start usually in the teens or 20’s). But last October she started having serious grand mal seizures, which she is still having and are probably a result of her strokes. So now she has a secondary diagnosis of epilepsy. That’s where we are today, things have turned out quite differently for our family than we imagined they would 7 years ago!
I wanted to tell you 4 things I’ve learned in my journey of fighting for contentment, which for me has been mainly a fight for joy and hope, and it is definitely a continuing saga. The 4 things are: I need to identify who my enemy is, know who to turn to when I’m afraid, know that I have people to help me in the fight and tools to fight with, and know that the Lord will sustain me until He delivers me by his grace.
1. Know who your enemy is. My external enemies are seizures, IVs, strokes, death, childhood trauma, boarding school, the smell of purell which can sometimes send me over the edge... But I know that actually my biggest enemies are internal - fighting my unbelief, my fear, my feeling of entitlement for the life that I thought my family should have, and my desperate craving for control.
An example of when I struggle with this is when someone is trying to start an IV on Louisa, which gets harder and harder (for me) as she gets older and begs me to make them stop. I can’t remember a time that it was a smooth start on the first try. Her veins are crap, they don’t cooperate and the IV person usually comes in confident they can do it and it happens again, can’t find a vein, she’s screaming in pain and burning a hole through my soul with her pleading eyes and I’m having a faith crisis. Every time I beg the Lord, PLEASE just let the blood start flowing, please let them find the vein and the right angle, please God, she’s been through so much. What good can this possibly be doing? So my external enemy is that stupid needle, but really I’m fighting to believe that the failed IV is good for Louisa, it’s good for me. That the Lord is still upholding the universe by the word of his power. The blood flows when he tells it to flow. The boys’ rages stop when he tells them to stop. Each one of these trials, no matter how small, is producing for me a weight of glory. He shows me again that I am not in control of any of this. I have no strength, no hope, no joy without him. I am his beloved and he is kindly teaching me to rely on HIM, who raises the dead.
-For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. 1 Corinth 1:8-9
2. Know where to look and who to talk to. I have to keep talking to the Lord, looking to him, bringing him my lament and frustrations and fears, pouring out my heart to him, not grumbling with my back to him. He can handle the truth of how I’m feeling and where I am, I don’t have to worry about how I’m saying something or if I’m being too pessimistic and not hopeful enough. He is the God of hope, I can ask him to give me hope when I have none. He is the God of comfort, He can comfort me when I selfishly feel like no human is comforting me exactly the way I want to be comforted.
David gives us such amazing examples of pouring out our heart to him in the Psalms AND beautiful examples of being sorrowful, yet always rejoicing, which we are called to be. Psalm 13 shows this juxtaposition of severe sorrow and desperation, and then genuine rejoicing.
Verses 1 and 2 say,
"How long, O LORD? Will you forget me forever?
How long will you hide your face from me?
How long must I take counsel in my soul
and have sorrow in my heart all the day?"
It ends with rejoicing. Verses 5 and 6 say,
"But I have trusted in your steadfast love;
my heart shall rejoice in your salvation.
I will sing to the LORD,
because he has dealt bountifully with me."
I love how Horatius Bonar describes it as “mingled joy and grief. The eye is dim with tears, yet, behold, it glistens with joy!”
That quote kind of sums up Louisa’s infancy for me. It was so bizarrely different than any kind of infancy I had ever experienced. Everything was so medicalized, the first 4 weeks of her life felt like we were barely a part of her caregiving, we never had any privacy and oftentimes I saw her as more machine than baby. Even after we took her home, she was very fragile and her medical team told us what to do, sometimes I felt like I was just another member of her team. We had to report her weight gain daily, record every ounce of special formula that went in through her feeding tube at exact intervals around the clock, monitor her oxygen saturation levels and administer over 100 doses of medicine a week. I wasn’t allowed to nurse her because that would take too much energy, which she needed to save for other things. I felt like the special bonding time I should’ve had with her in infancy was taken away and it was a deep grief for me. Sometimes at night after everyone had gone to bed, I would pick her up while she was sleeping and just sit and cry while rocking her. They were tears of grief and joy at the same time. I was so sad about all she had been through and the things we lost, but I was awestruck at the Lord’s great mercy to us in preserving her life and our family. I felt so much relief bringing all those jumbled up feelings to the Lord during those nights.
3. Know you’re not alone. I can’t fight alone. We speak truth to ourselves, but sometimes I feel like my tongue is having an allergic reaction to the truth and I can’t get it out. I need trusted friends fighting next to me and with me and for me. They can speak truth to me when my tongue and brain are stuck. I was texting with a friend this past week as I was feeling pretty discouraged after our neurology appointment for Louisa. I was saying that she often sleeps with us right now because her seizures primarily happen while she’s sleeping, but that we put her in her little bed which is at the foot of our bed “when we feel like living on the edge” My friend's response was, “the Christian never lives on the edge, dear Carissa, but it can feel like that” It helped me turn from sarcasm and self-pity toward thankfulness and comfort. I can’t tell you how many times a friend or someone I barely know has given me some piece of encouragement or verse or hymn at the perfect time that helped me keep going.
Pain and fear and chaos can make me feel fuzzy and disoriented, but meditating on short scriptures help me to zero in and focus on what is real and what I know. They are the tools that help me to keep moving and fighting when I feel like I can’t think. Sometimes that’s reading or just saying them to myself over and over, sometimes all I can do is listen to my "Baby Louisa" playlist, which is pretty much one of my best friends.
When Louisa arrested and was on ECMO for 4 days, we had our playlist on 24 hours a day, at the top of her bed, for her and for us. All we could do was listen to it, flip through the little book my mom had made us from various Psalms, and read encouraging texts and emails people were sending us.
Louisa arrested on a Friday and that Sunday we were struggling to find hope that we could possibly leave the hospital with our baby. Her medical team basically told us in different words that we were walking through the valley of the shadow of death with her. I started getting texts after church telling us about the congregational prayer Jon Saunders prayed for Louisa and then someone sent us a copy of it and Nick and I just wept as we read it over and over. In fact I still can’t read it without crying. We so strongly felt our church family holding us up when we had no strength left, it felt like we were Moses with Aaron and Hur holding our arms up in the battle. I remember after reading the prayer and all the messages from friends and family that morning I actually felt a flicker of hope for the first time in a while, “maybe He’ll do it, maybe he’ll let her live." God used his people to force hope upon me when I had none.
4. Know what kind of grace you really need. Pray for delivering grace, but don’t scorn sustaining grace. Praise the Lord for both. (I'm so thankful for what the book, The Scars That Have Shaped Me, taught me about this.)
I want delivering grace that dramatically changes my circumstances, heals my baby, makes the boys suddenly trust my love, makes my life easier. Wouldn’t people see those things and give God more glory?? We have prayed and pleaded for deliverance and he has definitely done dramatic things for us and people have praised him with us. But more often, he has given us sustaining grace.
I can’t tell you how many times in the past few years I have said to Nick, "I just can’t do this." When the doctor gave us Louisa’s diagnosis and told us we would have to do everything in Ann Arbor, I actually started laughing and accidentally slammed my head on the desk (which was quite embarrassing) “You don’t know our family, it is impossible for us to leave our kids right now for 2 weeks" (little did we know what was coming). I have said, “I can’t walk into that bedroom one more time to get him ready for school and have him scream and yell in my face” “I can’t watch her have one more big seizure, it’s so scary, I’m so helpless.” Pretty much for an entire year before her third open heart surgery, I said “I can’t bear to let them take her from me again and wheel her into the OR to crack her chest open and stop her heart, not knowing if we’ll get her back”. Nick likes to remind me, "But you ARE doing it, and you’ve done it everyday for 7 years! He is giving you what you need to do it everyday."
I was checking the results of some blood work Louisa had last week and I noticed it said “result 1 of 728.” She has had 728 tests done on her in her 3 ½ years. My 6 other kids combined have probably had less than 20 tests with blood draws, xrays, etc. Almost every one of those tests for Louisa involved pain for her and/or anxiety for us as her parents. "What is the next echo, lab, EEG, EKG, xray, MRI, going to tell us? What will the plan be? Is she getting better or worse?” I wish we all could have been delivered from having to go through those 728 tests, but instead the Lord sustains us with his grace through one test at a time and he proves he is good again and again with each one we get through.
So, in my fight for contentment, I have learned it’s not about what I have experienced, it is about what I have always known. The Lord in his kindness has shown me what I know more fully and deeply through what he has given me. I know many of you are facing trials or seasons of discontent. If you haven’t yet, you probably will! So, I want to encourage you to know your enemy, know where to look and who to talk to, know you’re not alone, and know that if grace doesn’t deliver you, that same grace will sustain you until perfect deliverance comes, of which we are all promised.
