Here is the next chapter in my effort to tell the “whole story.” This part (along with Ch. 5) is the most difficult part for me to write, but I am trying to be as honest as possible in sharing our story.
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I was making sure our diaper bag was packed with enough toys, books, and snacks to keep Micah happy during another long, detailed ultrasound and fetal echocardiogram. Today was our “8 week follow-up” appointment, and I was close to 30 weeks pregnant.
We had spent the past two months in a turmoil of emotion, grieving the loss of our dying baby. This was a reality we had come to accept, a reality we had made peace with. At least he won’t suffer, we told ourselves. We will keep him comfortable while he’s here, and then he will rest joyfully in the Father’s arms. We found some comfort in that Matthew would never have to endure painful medical procedures, he would never have to face the heartache of other’s cruel stares or teasing.
And, at least Matthew’s prognosis was clear. With our medical training and experience, we knew all to well that medicine was so often an unclear science. Doctors and patients have to make excruciatingly difficult decisions regarding medical care, delicatly balancing the burden of the treatment or procedure versus the potential benefit to the patient. Getting all the medical professionals involved in a certain case to agree on an ethics issue was often an impossibility. We were terrified of having to make such a decision regarding Matthew. No parent should have to make a life-or-death decision about their child! Attempt a risky procedure, knowing the pain it causes, even when a good outcome is unlikely? Or, keep your child comfortable at home knowing his medical condition will be fatal? Please, let it be clear, we prayed. Please don’t make the decisions difficult. We just want to do the right thing by Matthew. Please let the right thing be clear. Our greatest fear, spoken only between Aaron and myself, was that we would let the diagnosis of Down syndrome influence our decisions. As scary as it was to have a dying child, it was even more terrifying at times to think about raising a disabled child.
But, Matthew’s medical conditions had made things very clear. None of the babies were still alive, they had said. None of the babies that had hearts like Matthew’s and Down syndrome had survived. We knew what we needed to do. We would not subject this poor baby to the pain of surgery, especially when the chance of him even surviving the 4 open-heart surgeries was slim. We would take him home and keep him comfortable. “Comfort care only,” we had decided. For as long as we had him, he would be loved and and pain-free. He would spend his short life at home with his family, not alone in a hospital NICU.
And we would be o.k. . . . eventually. We could have more kids. We could move on. Maybe it’s for the best, we thought. He would have such a hard life if he did survive.
As I looked up at Aaron to ask if had we brought any juice boxes for Micah, I noticed he had a very solemn and worried look on his face. He had the same look before our first appointment here. “What is it?” I asked, trying to sound cheerful. “It’s not like they can give us any worse news this time. They’ve already told us our baby is dying!” Some amount of sarcasm mixed with dark humor was a coping mechanism we had found.
“It can always get worse,” Aaron said seriously. “It can go from being clear to being unclear.”
I sighed. I would rather not worry about all of the “what if’s” We had enough to deal with as it was.
Our pediatric cardiologist was cute, young and sweet, just finishing up her residency. Her name would be changing soon, she explained, as she was getting married. We were to just call her “Meg” to keep it simple. As she was taking a look at the images from the fetal echocardiogram, we were explaining to her that this would probably be our last visit to Seattle. “We’ve decided to have the baby in Yakima,” we explained. “We’ve been researching all of the diagnoses, and given the prognosis we’ve decided not to attempt any surgeries. We’ve talked to the doctors there, and they are comfortable providing comfort care. It would just be so much easier for us to be at home, with our family . . .”
“Well, let’s not make any decisions too quickly,” she smiled sweetly. I refrained from telling her that we had been agonizing over this for the past 8 weeks, and that didn’t feel like a hasty decision to us.
Twenty minutes later, Meg sat with us at a small round table in the conference room. Her attending, Dr. Chang, joined us for the discussion. Dr. Chang had a stern look on her face, while Meg had a big smile. Micah, restless after an already long appointment, was starting to pull books and magazines off a rack. I turned around to stop him, and Dr. Chang’s look softened, and said, “It’s alright. He’s not hurting anything.” The soft tone of her voice made me think I had mistaken concern, even pity, for sternness.
“Well, we’ve seen some big changes since last time you were here,” Meg began with her cute smile and chipper tone. “The aorta is just slightly larger than it was last time, allowing more blood to flow to his body,” she explained. “This means he is more likely to survive pregnancy, but he will still most likely need a repair soon after birth. Also, the left side of his heart has grown significantly. He might be a candidate for a two-ventricle repair after all. It is very borderline right now. We probably won’t know until after he is born, but there is a chance. We’ll just have to wait and see!”
Both doctors were looking at us now, expecting some kind of a reaction. Aaron and I both stared blankly, too shocked for any words or expression. Meg was looking confused – like this was great news and we were supposed to be smiling like she was. Dr. Chang was studying our faces, looking for any kind of response.
“What?” I managed to say. This time, Dr. Chang took over, and explained the medical changes again. Again, explaining that due to growth in parts of his heart, he was now a very “borderline” case, meaning he might survive with a series of surgeries, or he might not.
“We’ll be able to get a better look at his heart after he’s born,” she explained.
Again, they seemed to expect a reaction. They didn’t seem to realize that the knews had hit us like a bomb, dropped right in our laps.
“But, last time you said . . . ” I stuttered. I had so many quesions, but my mind wasn’t working. I couldn’t seem to form coherent thoughts, let alone sentences. ” . . . you said there was no chance.”
“I know!” Meg exclaimed. “I’ve never seen one grow like this! It is very unusual.”
“Do you have any questions?” Dr. Chang asked
“I’m sure we’ll have a lot later,” Aaron offered. “It’s just a lot right now.”
“Of course. You can call anytime,” she said kindly. “But, this does mean that we will want you to have the baby in Seattle. We will need to schedule an induction date. If we let you go into labor on your own, it won’t be the best scenario. We will need to have the whole team is ready when the baby arrives, just in case.”
I don’t know if the doctors said anything after that. My mind was screaming, No! No, no NO! This isn’t right! Not Seattle. No induction. No surgeries. No! This is NOT what we decided!
At that instant, a wave of fear and shock more intense than anything I had ever felt swept me away. I felt like I was trapped inside an old-fashioned hourglass. We had just weathered a sand-storm, and were beginning to find our footing again, but now someone had turned the hourglass over. Everything was upside-down. The shifting sand we had been standing on was now burying us, falling out from under us. I couldn’t see, I couldn’t breathe, I couldn’t think. We were sinking, and sinking fast.
Somehow we got our little family into the car before the fear spilled out in a torrent of tears. Sweet Micah had fallen asleep in the back seat when Aaron had to pull the car over because he couldn’t see to drive through the tears. We sat in a Burger King parking lot and held each other for what seemed like hours, not saying a word, just weeping.
In an instant, my mind took me back to an earlier time. I was 19, a sophomore in college at Gonzaga University. Life was good. I was dating Aaron Vawter, the cutest Senior I knew, and the love of my life. My biggest worry was whether or not we would have a pop-quiz in cellular biology. I loved the fast pace and the challenges of majoring in a “hard science.” I actually like math, and enjoyed and excelled in my college Calculus class. I liked finding the “right” answers, and I would much prefer a 3-hour multiple-choice exam over the task of writing a paper for a more subjective English class. “Creative writing” was a phrase I heard in my nightmares. Maybe it was becasue I was a perfectionist – and liked a clear “right” vs. “wrong.” I would stress for hours and hours staring at a computer screen, trying to write a “perfect” paper. Phrases like, “There are no right answers” would drive me crazy. Give me true or false; right or wrong; A or B.
But, at the same time, I didn’t feel like I fit the stereotype of the hard-nosed hard-science major. I was really quite soft-hearted. I was outgoing, I loved people, and I was quick to lend a helping hand or listening ear to any friend in need. My best friend and roommate, Theresa, was also soft to the core, which is why we got along so well. She, however, had chosen to major in special education. She wanted to teach at a preschool for children with special needs. And, I couldn’t imagine anyone better suited for the job. She was so patient, so understanding, and she truly had an incredible heart for those with disabilities or handicaps of any kind. She volunteered many hours at a home for adults with special-needs, and considered these folks her friends. I felt like this was great . . . for her . . . but definitely not the way I would choose to spend my time.
Once in a while, we would see Theresa at church, sitting with the “folks,” as she called her friends from the group home. It seemed like such an odd collection of people – some older, some younger; some more alert, some with nothing but blank stares; some with more physical handicaps, and some that looked almost athletic. But, the connection between these folks was obvious. One reaching out a hand to help a friend stand up, another holding on to an elbow, guiding a friend down the aisle. If Aaron was with me, he would sometimes comment about “I wonder how much they can understand. How does Theresa do it?” I would elbow him and tell him to “shush,” even though I secretly agreed with his musings. I didn’t know how Theresa “did it.”
Then, one week Theresa informed us that as part of a special arrangement between Gonzaga and the group home, the folks would be coming to spend a weekend on campus with us! It was supposed to be a lot of fun for them – supposedly they really enjoyed it. “And, Beth is going to stay with us. I hope that’s o.k.?” (I will call her Beth, because that is not her real name.)
“Oh, it’s a sleep-over?” I asked hesitently. She nodded. “But, where will she sleep?” I asked, looking around the tiny dorm room and our two tiny bunk-beds.
“She’ll have my bed,” Theresa offered. “I’ll take the floor. Don’t worry. I’ll do everything – you won’t have to worry about it. Beth is easy to take care of.
Everything was fine until Saturday afternoon, when Theresa really needed a break to get something to eat. She asked if I could watch Beth for just a couple hours. “She usually takes a nap, it should be easy.”
I had pretty well avoided the whole situation until that point, but I was happy to help out my friend. I called Aaron and asked if he wanted to hang out and help me “babysit” for a couple hours. He said he would, but not 20 minutes later, we were both wishing Theresa would hurry and return so we could leave. Beth was an older woman with Down syndrome. She sat on Theresa’s bed moaning and playing with her toes the entire time we were there. She had acutally had all of her tonails surgically removed becasue of his habit, but she would still play with her toes.
“Beth, how are you doing?” I asked cheerfully. I was rewarded with a snarl and another moan. I waited a minute before asking, “Are you having fun?” No response . . . “Do you want to color? Theresa said you like to color.” Another snarl and more moaning. “. . . How about a nap? Would you like to take a nap?” Louder moaning, and still playing with her toes. For two hours, we sat with a woman who moaned, snarled, and played with tonails that were no longer there.
“When is Theresa coming back?” Aaron asked hopefully. I could tell this was driving him mad, and he wouldn’t be able to take much more.
“Soon, I hope. I really don’t know how she does it.”
“Me neither. Amy, I’m no good at this. I’m really not. I don’t have the patience! I know some people like Theresa are really good at this, but I’m not. I really think the worst thing that could ever happen to me would be to have a disabled child. I’m serious. I couldn’t handle it.”