I’ve been praying about sharing some details of our story . . . and while some details are best written in my journal, I can’t help but think of so many of you who have prayed us through these few months not even knowing anything. And then I think about the hundreds of Google searches I did, trying to figure out what was wrong with my sweet girl. If only I had found something, maybe, just maybe the ending to our story would have been different. So, I will write for our prayer warriors who continue to cover us in prayer and for the other Moms, who like me, are desperately looking for an answer.
Peter and I tried to be brave one night in mid-August. Annie had always slept in a pack-and-play in our room. She was supposed to start sleeping with Kate and was doing well sleeping through the night, but we just loved having her with us. So we tried to be brave and we put her in her crib. But when we went to bed, we just couldn’t do it. We scooped her up and brought her in with us. The next night we tried again. Around midnight, Kate cried out and as I went in to check on her, I realized Annie was throwing up. I slept that night with her on my chest so I could hear her little tummy start rolling. I figured she had the flu and started mentally preparing for it to go through the whole family. Poor Annie had never even been sick, not even a head cold. But a few days later, she was still throwing up and no one else was even feeling a little bad. She still remained happy and would seem to “snap out of it” and go for hours without puking. My “Mommy radar” started going off . . . something was not right.
When we went to the Doctor, we discovered she had lost a few ounces over the course of six weeks. Our doctor ordered an ultrasound for a few days later to check for pyloric stenosis (at this point, we thought it had to do with G.I. stuff). Pyloric stenosis has to do with food not getting into the intestinal track, so instead of pooping, babies throw up their food. All her symptoms matched except that usually babies are diagnosed when they are brand new, not when they are 6 months. I clearly remember the ultrasound tech saying, “She is working down there. You’re glad that it’s not pyloric stenosis. Babies have to have surgery to correct it.” If only our solution would have been that simple! Over the next few days, my happy girl returned. No more throwing up, she started sitting on her own a little and reaching out to grab our faces, our hair, her pacifier, still developing normally.
And then the throwing up returned. Not as much as before, but it was still there. We had an appointment with a pediatric G.I. doctor scheduled for a few weeks down the road, but I was not satisfied. Annie started getting more and more lethargic. She would lay her head on my shoulder almost constantly. I’d find her in bed, awake, but laying still. She was just so tired all of the time. We went to see my parents over Labor Day and they were quite concerned. As much as I had been searching for symptoms, I spent too much time with her to get a clear picture of how she was changing. That was the week that I got this knot in my stomach that didn’t go away. I’d wake up many times in the night to check her, crying out to God. Something was wrong and I couldn’t get any answers. I “googled” my brains out, praying for something, anything to come up that would give me a lead in what was wrong. I kept taking her to the doctor, but didn’t seem to be getting through to anyone that I was quite concerned.
So we went to the ER. It was the day William started school– his first day ever. I pray that he never puts all of that together. We had to drop him off early. I didn’t even get pick him up that first week. I wasn’t the sappy Mom I’d envisioned being . . . didn’t even cry at all. We snapped a few pictures that didn’t turn out and hurried out of there. Annie was quite dehydrated when she got there and didn’t bounce back like they thought she should. So we ended up spending the next five days there. Eventually they diagnosed her with Gastroenteritis– basically, a bad stomach flu. I wasn’t convinced. None of the rest of us had gotten it and while she had some symptoms, I didn’t think she had enough to merit a diagnosis. But I could see that we were at a dead end, so when she showed some spunk, they released us.
At that point, I was ready to start some homeopathic remedies. We put her on some probiotics and Slippery Elm, which stopped the throwing up all together. We thought we were on the road to recovery (albeit a slow one). We had friends come over to lay hands on her and pray for her. The knot in my stomach was bigger than ever as I watched her become more and more lethargic. She was supposed to be rolling and sitting and giggling but instead would just look at me with sad eyes . . . I’ll never know why numerous nurses and doctors didn’t see it, why my google searches didn’t have the right combination of symptoms, why the order of our steps were this way. That is where I simply have to choose to trust God.
My very dearest friend Jamie knew minimally what was going on. I just couldn’t write to her or call her– she’s had her share of pain in the “Mom category”. But on the day I noticed Annie’s eyes crossing, I lost it. That was the day the knot in my stomach erupted and I definitely knew we were dealing with more than the flu. Without my knowledge, she bought a train ticket and was on her way to see me that night. I shudder to think of how events would have played out if she hadn’t come.
Saturday morning as she watched Annie, she told me it looked like she was having mild seizures. I’d never seen a seizure, but I knew as I watched her that Jamie was right. Peter and I headed to Mott’s Children’s Hospital in Ann Arbor as fast as we could. I’ve never had such a feeling of assurance– I knew what we were doing was right, but I knew it was going to be bad. Doctors later told me that Annie probably wouldn’t have made it through the day at home . . .
The doctor in the ER didn’t even introduce herself. She came into the room, felt Annie’s soft spot on her head, left and returned with a team of doctors and nurses. At the very first doctor’s appointment a month before, I had brought attention to Annie’s soft spot, but was brushed off. Since then, I had tried to alert numerous doctors that I thought Annie’s soft spot was raised, and they had all assured me that she was fine. But within thirty minutes, as I watched my sweet baby on the hospital bed, I heard the door click shut. With tears in her eyes, the doctor told us there was a large mass on Annie’s brain. The size of a man’s fist. In her tiny head. That’s when my world stopped.
From there, it’s fuzzy. There are lots of details that don’t matter really. Like the fact that the pressure in her brain was 50 when it should be under 15. That first night they fought and fought for her life. But really, my baby was gone by then. She never opened her eyes again. Her movements were strange and she had so many fluids and medications in her she didn’t even look like herself. You know, I’ve never even known anyone with a brain tumor. It was awful. A million times worse than the worst dream I could imagine.
We prayed. We believed. We cried. We rallied the troops. You should’ve seen my facebook page. Hundreds of thousands of people were on our knees praying for us. Nurses and doctors were crying with us. Our family was there, our friends were there . . . we touched her, put lotion on her, kissed her, slept with her and sang to her.
In the end, we were so proud of her. Her body was healthy. It was just this big, ugly thing in her head that took away her life. In spite of it, she had been happy. She had fought and fought even when we didn’t know she was fighting. And our beautiful girl went from our arms straight to her Jesus. It was Tuesday night, September 22, just over a month from when the throwing up started. The doctors believe that was when the tumor formed. So quick, yet it was a month of exhaustion like I’ve never experienced. Just like that, she was gone. We barely even had time to wrap our minds around it.
And now what? I don’t know. I don’t know how to grieve. I don’t know how to adjust to just two kids. I don’t know what to do with her play mat behind the couch and her pacifiers in the drawer and a thousand other reminders of her. I don’t know what to tell my kids. I don’t know what to do when I lie awake at night, imagining how it could’ve been different.
William has this song. It’s “his song” as he says. There’s a line in it that says, “You (God) give and take away. My heart will choose to say, ‘Lord, blessed be your name.'” I’m choosing each day, each minute, to say that. Little did I know five years ago when I became a Mommy that I would sing that song over all of my kids– and how hard it would be. But I am choosing, in spite of the unfairness, the questions, the doubts, to bless the name of my Lord.
And that, my friends, is the beginning of my story. You’ve convinced me to keep writing. As I can, I will.