This was good to hear, but for heaven’s sake, I wasn’t able to convince my heart to believe it.
She observed my continued hesitation—and perhaps the paralyzed look on my face—and motioned to put the trach back in the container. I did so, stepping back from the bed. I found the chair with the back of my knees and dropped into it with a choking sob.
Caitlin was fabulous. In no way did she downplay my fear; she didn’t make fun of it or tell me it was irrational. She just asked what I was thinking.
I told her with my voice quavering, “I don’t want to hurt him. If I don’t get this trach in correctly, he cannot breathe. I’m not sure I can be what he needs.”
The nurse didn’t immediately tell me, “You loser.” And she didn’t flippantly answer with “You can’t hurt him.” Because neither was true.
She did tell me I didn’t have to do any of it right then, but she didn’t leave in a huff as though I couldn’t do it. She simply let me catch my breath and waited with anticipation and confidence, which assured me that I could handle it.
I contemplated within the space of a minute or two what was at stake if I chose to let fear intimidate me. It was not a little red doll lying in the bed in front of me, but a live child, making removing and replacing an artificial but oh-so-necessary airway more difficult, but the baby under all those wires and tubes would be left simply to exist in the hospital if I focused solely on his equipment.
I stood up, and with my jaw firmly set, told Caitlin, “Let’s try this again.”
And we did it.
And I did not hurt him.
Getting the first trach change out of the way was the hardest. The mental and emotional hurdle I had to jump was done, and Charlie was okay. Fear took a huge hit that day, and I do believe the heavens cheered.
Fear had to continue taking a backseat as time progressed. The training Johanna and I received was completed by December, and we brought Charlie home in time for Christmas.
What Charlie most needed from us was to be treated affectionately and to have his medical cares competently addressed. In chatting with my kids, none of us remembers initially having overwhelming feelings of love for him. Instead, we were mostly terrified because of his breathing issues. It was a decision of our wills to treat him as if we loved him until the emotion joined our actions.
Charlie needs someone with him 24/7 because of his potential airway obstruction issues. This means we have a couple of nurses who help so we can get other things done to maintain our household and care for the rest of the family members. One thing one of our day nurses did was to pull Charlie into her lap and turn on her iPod. She placed one ear bud in her ear and the other in Charlie’s. He appeared to relax and enjoy being snuggled like this, and I encouraged her to spend as much time as possible holding him, not simply doing his meds or suctioning. She was more than willing to comply. Another of our day nurses likes to watch Andy Griffith reruns with Charlie lying against her chest so he can see the screen, and she reads in an animated way to him all the time. Charlie wiggles his way into his favorite comfortable position on her lap and enjoys the stroking she does along his neck and behind his ear as they watch the Kindle. He doesn’t register any response to medical tests for vision or hearing, but he most definitely sees his toys above his bed, because he hits them with his fist with amazing accuracy.
I requested a regular-sized hospital bed for quality-of-life reasons. I realized my husband and Andrew were not holding Charlie. They were too afraid of disrupting his equipment to pick him up out of the crib by themselves, and they didn’t want to hassle with taking the time to get him all detangled and settled in the chair and then have to put him back to bed fairly quickly because the guys have “no sit in them.”
The hospital bed allows anyone to climb in and lay next to Charlie and be as close as they would like without having to move any of his wires or tubing. The little man is hilarious to lie next to. You’ll think he’s sleeping or oblivious, but as soon as you lie down next to him, his left hand comes up and he will repeatedly stroke your face or smack you until you hold his hand and talk to him. He is not content to lie quietly; he wants your full attention and will badger you until he gets it!
One of Charlie’s favorite things is being taken outside in his wheelchair or stroller. When he first started riding around in his stroller, there was an umbrella over the top of it. He swung both of his arms back to knock the canopy out of the way so he could see. I put the canopy back again, thinking it was a fluke, but he did it again. Once more I put the canopy back, and the little booger knocked it out of his way every single time until I finally took it off completely. Because of Charlie’s vision issues, he stares at the sun and doesn’t blink, squint, or otherwise protect his eyes, so we have to put sunglasses on him. He wouldn’t put up with the stroller canopy, but he tolerates the glasses with a better attitude.
I live by faith somewhat in interpreting Charlie’s needs because he is unable to communicate verbally. He typically doesn’t make eye contact, and his eyes don’t light up with recognition or joy even when they are focused. Our knowledge of him and he of us is much more intangible.
Taking a baby to a well-child checkup at Dr. T’s office was a familiar adventure for him and me. Dr. T remembered when I had brought Emmalynn to see him in the office. The nurse that August day asked me to get her undressed, weighed her, and told me Dr. T was supposed to be right in to examine Emmalynn. He got delayed and took longer than expected. I let Emmalynn lie there on the examining table only a minute or two, and then, because I didn’t want to redress her, I pulled up my T-shirt and tucked her in against my tummy, leaving only her little head exposed in the crook of my arm. I was swaying back and forth humming when Dr. T came in and saw us. He shook his head and said, “You’ve gotten attached haven’t you?” All I could say very quietly was, “That ship sailed for sure,” meaning I had indeed fallen in love with that sweet baby. My instinct to keep her warm and protected was in full mama-bear mode. I hadn’t given birth to Emmalynn, but I loved her as if I had.
When I held Charlie so Dr. T could examine him, he saw I had once again fallen head over heels in love with a baby destined to eventually break my heart.
“You’re nuts! You know that?” he said.
“Yep, probably, but I can’t stand the thought of this kiddo dying in the hospital alone without a family. I’m not expecting you to cure him or fix him. I just need a right-hand man up here in Sheboygan, and you’re it!”
Dr. T has taken care of my kids for years, and in spite of his misgivings, he has trusted my judgment and heart enough to continue making house calls when needed, and he puts up with my craziness.
Other health care workers have also supported us in caring for Charlie. One of the most encouraging things a hospital nurse said to me was this: “You know, we can tell when kiddos are cared for and when they are neglected. The parents say they are doing things for their baby, and because the kids can’t tell us any differently, the parents think we don’t know what’s really going on. Charlie is obviously loved, and you’re doing a great job of meeting his physical needs.” Those words affirmed our actions of holding him, bathing him, applying lotion, and massaging his little body. His skin was in excellent shape as a result. His ability to relax was testimony to the fact he trusted us and was pain-free. In the day-to-day business of caring for his needs, those small, loving actions can look inconsequential. What a sweet thing to find out all that mundane stuff added up and made his existence not only bearable but also enjoyable.
In June 2015 the foster care social workers asked Mark and me about our thoughts on adopting Charlie. Life had certainly been chaotic in the six months we’d had him home. He had been hospitalized on several occasions, and he had come close to death too many times to count. My prayers that God would give me a deep love for this sweet baby had been answered, and I had no desire for him to live somewhere else or with anyone else.
The ramifications of making Charlie a permanent par
t of our family were heavy, and we considered our options carefully. If we adopted him, Mark and I were not sure we would be able to financially provide for him. Some of those concerns were allayed when we found out that his health insurance would continue and that we would be given some assistance to offset the extra expenses even after we legally made him our child. As he grew older, however, we would incur expenses that would not be covered.
As a result of my disabling surgeries, I was not working and bringing in a paycheck. I do not get paid to be a mom.
One of my fears in life—a dragon I have had to slay repeatedly—is the fear of looking stupid. I do my best to be informed so events don’t sneak up on me and leave me in a bind. So before we agreed to adopt Charlie, I thought through everything as best as I could. Adopting Charlie meant we might have to have a wheelchair accessible van, a ramp into the house, and a hydraulic lift to pick him up because he would get heavier as he grew. His spasticity can be difficult to manage and difficult to contain. If he’s lying in my lap but doesn’t like that position anymore, he stiffens. He’s also dead weight when being held because he has low muscle tone (called hypotonia), so he isn’t able to make any effort to bear his own weight by wrapping his arms or legs around my neck or waist. Moreover, I hadn’t made time to work out in years, so the muscles in my arms, back, and legs were weaker than I liked.
We could not afford a van or renovations in the house to accommodate Charlie’s growing needs, and we did not want to put our family in a place where we would accrue debt we couldn’t pay.
Mark had other concerns as well. “Charlie isn’t worried about where he’s going to be at Christmas or whether anyone wants him,” he said. “He’s here. He’s loved and taken care of, and that doesn’t have to change. I don’t feel compelled to make that official by adopting him.”
When I spoke with the social worker and explained some of the reasons we hesitated with formally making Charlie our own child, she understood. But she had to deal with the protocol of planning for the permanency hearings, which required finding a home that would be considered the “adoptive resource.” If we didn’t choose to be that family, Charlie could be placed in another home. We’d had no luck finding someone qualified to care for all of Charlie’s needs while Mark and I took a much-needed break. So finding an adoptive home for him seemed to be a stretch, but there was a slight possibility someone would be willing to adopt him.
I knew it was not in anyone’s best interest for me to press the issue with my husband. It’s difficult enough already to do foster care without having one partner say, “I never wanted to do this,” and making the foundation insecure. In our marriage, we hardly have to have a good reason for Mark and me to annoy each other. My insisting on adopting if he didn’t want to adopt would have been a recipe for disaster.
I prayed—and not some trite bullet “God bless this food, amen” kind of prayer either.
One poignant memory I have is of standing for worship at church. I couldn’t find the breath to sing and understood Hannah’s prayer to God for a child in ways I had not known before. The intensity of her prayers, rendering her unable to make a sound, gave the priest Eli the impression she was drunk, but oh, she was not. Fervently praying, yes. Inebriated, no.
My experience and prayer was similar: God, I have no idea whether I’m going to be able to continue to take care of this child in the future. I’m not assuming I’m more capable or better than anyone else. I also am not presuming I personally have the strength and wherewithal to see it through until he dies. What I do know is that I want to be willing to do what You desire. If You are going to continue to provide for Charlie; if You know, because You’ve given me such a deep love for this baby, that any obstacles will be overcome, then here am I, Lord; pick me. I can do all things through Christ who strengthens me. And You work in Mark’s heart. I will not attempt to convince him against his will that this is a good idea.
I did not pray this prayer out loud. The evidence that I was having such an intense conversation, willing to give it all up or continue, was my silent tears. I remember using one of Charlie’s clean cloth diapers to mop my face of the tears, the snot, and the mascara, because the tissue I had was failing to hold it all.
A couple of days later, Mark walked into the dining room where I was sitting and asked abruptly, “You really want to adopt that baby?”
“Yes.”
“Then let’s do it. Call the social worker. Get it going.”
This was one of the most concise, yet monumental, discussions of our married life.
I called Faith right away, not out of fear Mark would change his mind, but because I believed God had directly answered my prayers and had moved in Mark’s heart and mind to be in agreement.
The concerns over the van and house accommodations were still niggling, but we pushed them aside. Every time I would have to lift Charlie and his wheelchair into the back of the van, I would pray, not even prefacing my prayer with God’s name because He knew full well I was talking to Him every time I thought or said it: I don’t know how much longer I’ll be able to lift him, but I’ll have to do it for as long as it’s necessary. You know I can feel impatient, even afraid of the possibility You might not provide, but You want me to trust You, so I’m going to act as if I do.
Most days, having a handicapped van seemed unnecessary because, honestly, our little buddy was not expected to live long enough to get so big he couldn’t be managed.
As the next six months unfolded, Charlie would stop breathing adequately and his oxygen saturations would drop into dangerously low territory. We would go rushing about trying to remedy the situation, not altogether sure what was ailing him and causing the trouble in the first place. How could a child on a ventilator drop his sats out and turn gray? We didn’t get an explanation for his breathing issues* until much later.
When Charlie had his episodes, I had to work with the special needs on-call physician and troubleshoot the issue. The doctors and I would sift through the circumstances surrounding every breathing incident Charlie had with a nit comb. Questions went back and forth until the doctors figured out as much as humanly possible about why Charlie was having trouble. They pointed out what I had done effectively or ineffectively to deal with it. The scrutiny was not meant to be an inquisition even when I was at fault due to ignorance. I learned a lot in the first year Charlie was with us, and each time I would think it was too hard and too scary, but I had to wade back in because there was no quitting. I also learned something each time that helped me the next time he had a similar episode, making it less frightening to deal with. And then came the day when my best efforts appeared to be useless.
* trachea/bronchial malacia
10
STRENGTH MADE PERFECT IN WEAKNESS
Jesus loves me—He will stay,
Close beside me all the way.
Then His little child will take,
Up to heaven for His dear sake.
Yes, Jesus loves me!
Yes, Jesus loves me!
Yes, Jesus loves me!
The Bible tells me so.
—ANNA BARTLETT WARNER, “JESUS LOVES ME”
The first Saturday in October 2015, I had completed all the paperwork necessary to move forward with Charlie’s adoption. It had been as intrusive a process as the foster care application. The questionnaire asks such personal questions as “Describe your first experience having sex.”
Jaw dropping. You’re kidding me, right?
I wrote, “I got married. We had sex. It was fine.”
Good grief. I was not going to go into the fine points for people I knew, let alone people I did not know.
Questions were asked about how I felt about my childhood.
Let’s see. I could go from happy to sad to tearful to mad to ecstatic to irritated—all in the space of an hour. Toss in a monthly period and I could have dramatic changes in how I felt about life in general in the space of a minute.
I answered, “Happy.”
> Once more I was required to detail the events leading up to my night on the psych ward in December 2010. This go ’round I was very careful to fully explain what had happened so there wouldn’t be any misperception about it. We had been thoroughly vetted before being able to be licensed as foster parents, but each and every time you want to move forward with an adoption, you get to go through the inquisition again. For those with only sweetness and light in their pasts, it would be a breeze. I have failed miserably in mine, and it threatens to define me every time my life is recounted and weighed in the balances, and I await the verdict on the human front.
On God’s front, I know my standing. I am a sinner who has been saved by grace. I’m enough because God declares it so. This does not mean that my sinful choices are ignored and irrelevant when people are evaluating them. It simply means I’m complete in Christ.
I ran to the post office and mailed the packet of information. I sighed and thought there should be no glitches with Charlie’s adoption, but I was prepared for the possibility that something unanticipated could pop up.
After I arrived home, I walked through the family room and did the once-over for Charlie, who was lying in bed. I checked the fluids in the humidifier, his feeding-tube pump, his oxygen saturation levels, the vent settings, his color, and his diaper, and I then proceeded to fine-tune from there.
I changed the bud’s diaper, which was wet, and then turned him on his left side since he had been lying on his back for a while. We’d had him for almost a year, and what a ride it had been!
He didn’t need to be suctioned, so my brain wasn’t triggered to look at the suction machine.
This was a mistake.
I kissed his smoochable smooth cheek, stroked his head, and told him for the gazillioneth time, “I love you, baby boy!” Then I stepped about ten feet away through the doorway into the kitchen to get things prepared for lunch. I whirled around abruptly when Charlie’s pulse oximeter alarmed, indicating he wasn’t breathing properly. The alarm can go off if he wiggles the toe holding the probe too much, so I didn’t immediately assume he was in trouble.
I Will Love You Forever Page 16