Charlie is not in a persistent vegetative state. Charlie doesn’t have a lethal anomaly. Charlie doesn’t necessarily have a terminal diagnosis. So, by law in Wisconsin, we are required to pound on his chest and call 911 and have paramedics do compressions and defibrillation plus administer medications to get his heart restarted.
Charlie experiences apnea, flaccid airways,* and nonepileptic seizure activity when he is in pain. The very activity of resuscitation would be yet another reason he wouldn’t survive the efforts. A “code” is always painful, though it is not always successful.
We are such public figures now that we have been told we could be sued by those who might feel we were negligent in not using full code measures on Charlie. We can’t go back and become just another family on Third Street. But it’s an undue burden for our family to have legislation dictating the extent we must go to bring Charlie back should he have an episode of central/obstructive apnea and his heart stop as a result. I don’t even know what kind of help we need for it to be legal for us to allow Charlie to die as naturally as possible. This is the burden we have been asked to bear on Charlie’s behalf. And sometimes there are no words to describe how heavy it is. Like the example Jesus set of “for the joy set before him he endured the cross” (Hebrews 12:2 NIV, emphasis added), all this pain and heartache will be worth it.
I take the tenth chapter of Hebrews to heart. Verse 39 is one of my favorites: “But we’re not quitters who lose out. Oh, no! We’ll stay with it and survive, trusting all the way” (MSG).
*tracheobrochomalacia
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CRAZY AMAZING ANSWERS TO PRAYER
He comes “to bind the brokenhearted”;
He comes the fainting soul to cheer;
He gives me “oil of joy” for mourning,
And “beauty for ashes” here.
—JOHN G. CRABBE, “BEAUTY FOR ASHES”
After Charlie was discharged from the hospital, I was relieved of the necessity of chasing any and all possibilities of improving his health. We had pretty much run out of curative options. I prayed and asked God to redeem and help heal the sadness I felt over coming to terms with our focus shifting to palliative care.
Our family had come to appreciate the paramedics and firemen who had raced to our home to help us time and again during the past year. I was then struck by the fact that we had called our local EMS more than twenty times through the years. They had responded, done a wonderful service, and the most I had done for them was bellyache over the bill I received in the mail.
What a sad commentary.
I was determined this would change. The men and women both deserved and should be shown our gratitude for their selfless service on our behalf. So we made twenty dozen oatmeal-raisin cookies and invited both the Orange Cross and the Sheboygan Fire Department to our home to have the treats and take a large tray of them back to the station for those who couldn’t come. Most importantly, this allowed us to personally say a huge thank-you for all they had done.
Both emergency services departments were more than happy to accommodate our request. They don’t always get to go to people’s homes for nonemergency reasons. This was a sweet reason to show up at our door. The Sheboygan Fire Department was so moved by our gesture that they asked us to bring Charlie to the fire station, which was ten blocks away and housed the ambulance crew who most frequently responded to our calls. About fifteen of the guys gathered, and these kind men made Charlie an official honorary firefighter with a brief ceremony. They gave him a fleece blanket with a fire-engine pattern and tied edges. They also gave him a onesie with the company logo. Making him their “little brother” was a heartfelt gift on their part. They have continued with this allegiance to him even though they have had to transport him only a couple of times in the two years following his near-fatal coding.
Our foster care agency was touched by the way our hometown heroes reached out and embraced Charlie. Foster kids want to feel as if they belong and are part of the community, putting down roots in the home or city where they live.
The public relations department at Children’s Hospital in Milwaukee reached out after Charlie’s adoption, or “Gotcha Day,” on December 18, 2015, and asked if we would be willing to do a media release about foster care and adoption. We agreed.
Leah Ulatowski, a reporter from the Sheboygan Press, came to our home armed with a notebook and a cell phone. She sat with me and Charlie, asking question after question. I asked her a couple of times if we were done, wanting to be courteous with her time. She assured me we were good. Her compassion and interest were real.
Leah went back to the office and crafted a beautiful article. The website version was released on Saturday, January 2, 2016, and the Sheboygan Press ran it on Sunday’s front page. All of a sudden, the story went viral. Who would’ve thunk it?
Oh wait…. God knew!
We had not anticipated anyone in Sheboygan would read about our baby boy, let alone have our story go worldwide. One of the people who saw the article was Terri Peters at TODAY. Terri was willing to let me further explain why we do what we do. She gathered material from me via email, edited it, and presented the story as an as-told-to segment in June 2016. This story went viral too.
Soon after a literary agent asked if I would like to write a book.
“I can’t not write” was one of the things I said. As much as I would like to shut up and not say anything, Ravi Zacharias affirms my desire to chronicle our journey:
“This pause to remember is indispensable in our sacred memory. Only as we remember and remind ourselves of God’s faithfulness can we even see the pattern God has woven in our lives and learn confidence in His working. That is why, on repeated occasions, God tells the people to place a stone or a marker to remind them to tell the next generation of what God had done.”1
People, Reader’s Digest, Guideposts, and numerous other publications printed various versions of our story. When People asked to interview our family in February 2016 to document a day in the life of Charlie, my response had more than a little, “You’re kidding me, right?” attitude when I told her, “A day in the life of Charlie? Okay, hold on to your hat—it’s riveting material. We change his diaper; we lotion his skin. We suction his mouth and trach. We turn on the CD player so he can jam to the Gaithers or Joey Feek, and we do the same things pretty much over and over again. Toss in a bath and a dance or two in the kitchen, and that’s our buddy’s life.”
After getting off the phone with the reporter, I seriously contemplated not having them come at all. It seemed ludicrous. But God provided perspective.
Mark and I had inquired a few weeks previously about a baby boy named Samuel whose foster care bio asked for a family, not even one to take him home, but someone willing to come sit by his bedside so he wasn’t always alone. He was a couple of months older than Charlie and hadn’t ever been able to leave the hospital. This was not the only kind of life he could have. We had evidence of that fact in our own family room!
Before we could even get any traction to move Samuel home with us, I received this email:
With my deepest regrets I have to inform you the child you inquired about, Samuel, passed away yesterday. I want to personally thank you for opening your hearts and potentially your home.
The social worker included the obituary published in the paper.
The little angel Samuel, Born 11/24/2013—Passed from this earth on 2/9/2016.
Samuel was a permanent-custody child. He was in foster care his entire life and had always been in the hospital since his birth. Due to the circumstances under which he was born, Samuel was unable to sustain any meaningful quality of life. He is now at peace without the pain and suffering he endured while on earth. He now has the eternal quality of life he deserves and is rejoicing with the angels in heaven.
“No meaningful quality” would not be the summation of Charlie’s life. And that helped me to realize that People most assuredly should come and let the world know the difference a family’s love and
a whole lot of smooching and hand holding could make.
Charlie’s life has touched millions of people. Millions. He has had an impact on them in ways we never could have fathomed. One mom contacted me via Facebook and told me that she and her husband had lost a daughter who was only twelve. They had been foster parents, but after their own biological child died, they could not deal with the grief of having to say good-bye to another kiddo, even if it was so that child could be placed back with their birth parents. This couple had been hurt and couldn’t fathom asking for more heartache on purpose. She told me that they decided that if our family could willingly take on this kind of burden with children who were pretty much guaranteed a shortened life, then they could be braver than they thought possible too.
A few weeks later she sent me another note with this excited message:
We did it. Called our social worker and told him we wanted back in the game. We hardly had to wait any time before we were given a little girl in a wheelchair that had been difficult to place. She’s home with us now. Thank you for the push to get us going again!
Countless others have reached out to me to share stories of their children who have varying disabilities. The isolation they have felt isn’t so great after having been able to commiserate and be cheered on, emboldened to speak up on behalf of their child, and empowered to fight for what is needed enthusiastically and a little less fearfully.
One of my favorite quotes is “We read to know we are not alone.”2 I firmly believe that. Reading about Charlie and Emmalynn and our mind-set in caring for the least of these helps others step up and boldly do it too.
What I know for sure is that if God disabled me physically because He desired for me to be at home with the children He had already given me and with any other baby He might bring along my path, I am willing to be faithful there. He had crushed me to remove the self-seeking desires I’d had to do things my own way. Running on up ahead of Him or lagging behind, unwilling to follow cheerfully, had caused me so much trouble. I had endured great heartache trying to do things my way.
I cringe when I hear people brag about how amazing and invincible they are, or when they brag about their physical or mental abilities. In a breath it can all be gone. Consider all the football players who brag about how great they are, only to be seen standing on the sidelines wearing a ball cap and sweats because an injury took them out and revealed they were human and breakable too.
I found this out about myself. God broke my heart, my spirit, and my body. And I’m grateful. I don’t need a job or relationships or any children or material things to make me feel valuable.
He calls me His own.
I’m safe with Him.
I’m accepted.
I’m not too much.
I’m not too little.
I’m not perfect and not expected to be. I’m under construction, and God is working all things together for good because He loves me. I have experienced the shattering He has brought about, not to destroy me, but to make me into the kind of woman who radiates the love of her Savior. Everything in this life I might want to hold on to may be taken in an instant. God had to take mostly everything away in order for me to be able to receive it back in the way He intended.
A portion of the poem “Treasures” explains how I felt:
One by one He took them from me,
All the things I valued most.
Until I was empty-handed,
Every glittering toy was lost….
Then at last I comprehended,
With my stupid mind and dull,
That God could not pour out His riches,
Into hands already full.3
I find it telling that near the end of Rosemary: The Hidden Kennedy Daughter, this is included:
“The interest [Rosemary] sparked in my family towards people with special needs,” Anthony [Kennedy Shriver] claims, “will one day go down as the greatest accomplishment that any Kennedy has made on a global basis….”
[Eunice Kennedy Shriver], however, would be the most powerful moving force behind the cause of the disabled, pushing public and private institutions and foundations to sponsor and provide services, to fund and conduct research, and to make accommodations for the intellectually and physically challenged. Once locked away or institutionalized, people with developmental, intellectual, psychological, and physical disabilities can now participate in life and integrate in communities in ways that seemed impossible when Rosemary was a child and young adult.”4
This is my story—of the redemption (and it’s not even all done yet!) of my beloved sister Amie’s life and tragic death! It is one I have been privileged to share repeatedly with numerous doctors, nurses, therapists, reporters and photographers, churches, and EMS personnel. If folks are only looking at me, they will be disappointed because I’m a deeply flawed human being.
But if they happen to be looking at me and are paying attention, then God willing, what they will see and hear is my making much of a great God who saved a wretch like me and is effecting good in the lives He brings across my path. Not for my glory but for His.
June 2016, a year from the time God answered my Hannah-like prayer and Mark gave me the go-ahead to adopt, I made an appointment for Charlie to get a second opinion from a neurologist. I wasn’t sure whether Charlie’s brain had continued to deteriorate and fill up with cerebrospinal fluid or if it was holding steady. Was he going to die or not?
I know what a person looks like who is actively dying, and Charlie wasn’t exhibiting any of those signs or symptoms. However, he certainly flirted with death at any given time related to the malacia. Dr. E ordered a new MRI of Charlie’s brain and compared it to the one taken the previous year.
He told me what he thought, and then he also showed me the differences in the MRIs and shared his opinion on Charlie’s prognosis: “Your baby is obviously well taken care of. You attend to him quickly and expertly. He’s thriving in spite of his condition. I saw you playing with him, enjoying him. You love him. Period. This child may die at any time because his tracheostomy could obstruct, but you need to also understand, given the level of care he receives, you could also be looking at another ten to twelve years before he’ll be actively dying. At that point his brain will not be able to keep up with the neurological demands his body will place on it.”
I left the office in Green Bay with Charity and Charlie in tow, and we drove home. I felt a little shell-shocked. I had thought Charlie was going to die sooner than later, but I was certainly not wishing he would. I was confused and felt a little stupid. For the nearly two years he had needed assistance to clear his airway and bagging to help restore his oxygen levels, I had assumed something was giving out that would result in death. Thinking that he could be doing this for another ten to twelve years was disconcerting.
I was fifty years old, and Mark was sixty-one at the time. We were looking at a longer timeline of caring for this child, years longer than we had anticipated. The weight of it rolled over me like a tank.
There was no “I quit. Give him back. I didn’t sign up for this.” It was more a matter of, How in the world were we going to be able to care for this baby as he grew in length and got heavier and more difficult to physically manage? One of the biggest obstacles was the expense of a van equipped to handle his wheelchair with him in it. He is one with his chair. A twenty-pound ventilator is mounted on the side. Our van did not have working air conditioning. Now, my usual thought is Don’t whine. Roll the windows down and drive fast and just suck it up, buttercup.
But Charlie cannot handle extreme heat or cold.
We did not have the money to buy a wheelchair-accessible van. It was something we had talked about but felt as if it were a moot point with Charlie’s medical condition being so fragile. When we signed up to adopt him, we didn’t feel as though we were out of our financial league, because he was not expected to live long enough for a van to be an issue.
God has a beautiful sense of humor. He absolutely wanted Charlie
adopted and set that lonely boy in our family by His design. He also knew our hesitation about agreeing to something that we could not foreseeably afford.
As noted earlier, when Mark and I got married, we had sex. Our eldest daughter popped out in February 1989, nine months and four hours after our wedding day. We didn’t have two nickels to rub together, but each of us, separate from each other, came to the same conclusion and felt convicted that we didn’t know squat about figuring out the timing of having children. If we were trusting God with our eternal souls, then in our opinion, we would be just fine trusting Him with the provision of the children He gave us.
I write that now, seeing how peculiar it was to be convinced God would provide for the children He enabled us to conceive but doubting whether He would provide for a child we adopted. How hilariously silly to think otherwise.
As I have read through the Old Testament, over and over I have seen the phrase, “And this has happened so you may know that I am the LORD your God.” Trials, suffering, blessing, fertility, success, failure—everything was brought about so that the people God was dealing with would know He was the Lord. When I read this, my perspective changed, and now I fully understand that God is unchanging. We have biblical accounts of how God has worked to show us that we are not alone, uniquely experiencing random and meaningless trials.
In a conversation with our Palliative Care doctor, I told him, whispering because I couldn’t say it any louder because of the tears, “You know, even knowing what I know now about how difficult it’s going to be to keep Charlie, I still would have suited up and played the game.”
Dr. Jack nodded both in agreement and confidence, “Yes. You would have.”
One story of how God met our ongoing needs in a miraculous way came about through the most unlikely circumstances.
I Will Love You Forever Page 18