Back in July of 2016, because Stephanie Smith of Lenses For Love out of Maryland saw our article in Today.com, she made the decision she was going to come to WI and do a courtesy photo shoot for our family.
I asked her this before she came, "Charlie is part of our family. He's a team player and knows it's not all about him. He has siblings too. Are you able to roll with that?"
Her reply and attitude totally endeared her to my heart.
She could fully relate because her sister has had cancer and Transverse Myelitis and is paralyzed and wheelchair bound. She knows what it's like to have a great deal of the focus, appropriately so, on the one with special health needs, but in order for the whole family to thrive, it's okay to make everyone feel like they're important also.
She came and fell in love with us and we with her. She took some beautiful photos and as promised included all the siblings who wanted to take part in the shoot.
Stephanie had contacted CHIVE Charities on behalf of her sister. They rallied together and raised the money and manpower to create a home where everything is handicapped access. It's beautiful. Stephanie encouraged me to apply to see if they'd be able to help with getting a wheelchair accessible van for our Charlie.
I filled in the application but was sent a couple of emails that the national CHIVE association would not be able to help us. Nothing ventured, nothing gained so I was not totally disappointed. I know there are thousands, if not more, children and veterans they're assisting so we continue to make due with what we've got.
Fast forward to a few weeks ago, my girlfriend Ana dropped off a Christmas wreath and I went right outside on the porch and hung it above the silk flowers still populating my window boxes. I have Christmas lights on the front of the house all year 'round.
In part, because I am a redneck woman, "I'll stand there barefooted in my own front yard with a baby on my hip" and also to allow the Emergency personnel easy ability to find our home in a hurry when we have to call 911 for their help. There were still fall leaves, spring/summer flowers and now the Christmas lights and wreath. Rolling my eyes, I resigned myself to being decorated for all seasons instead of just the one at hand. This was a post on Facebook.
I also was a little more than incredulous that our medically fragile 2-year-old had not been inpatient at Children's for a whole year. It's not that he's been without troubles. But, somehow, by God's grace, and help from our palliative care/hospice team, we'd managed to keep him home through several crises. I don't take it for granted he's been able to stay home and it's a good thing I didn't.
The day before Thanksgiving, we sent the triplets whom we've had for almost a year off to visit with their mom at 10 a.m.
By 11 a.m. Charlie had received several doses of his rescue medications but was in so much pain what we have here at home was not effective. I had to make an executive decision not to let him continue to suffer but instead to take him to Children's. I am not able to transport by myself when he is sobbing and fighting against his ventilator. I had to call 911 to help me. Our firefighter/paramedic friends here in Sheboygan once again came to our rescue. They call Charlie their "Little Brother in Blue" and they were able to find the house right away thanks to the Christmas lights being on even at 11 a.m. in the morning.
We loaded Charlie and were on our way. While in the ambulance, Charlie continued to sob and be unable to tolerate the breathing efforts of the ventilator. I was sitting at the head of the cart and leaning forward stroking his hair.
He was so miserable and at one point dropped his Oxygen saturations into the 70's. Immediately the paramedics prepared to do more resuscitative measures. I cried and asked them to please hold off on that. You don't call 911 unless you want them to intervene. I understand totally! But, chest compressions and cardiac medications weren't in Charlie's best interest. My instant prayer was "Please God, not like this. I don't know how he's going to die, I just want it to be less chaotic."
I understand the bind this causes our heroes in Blue.
I didn't have the altered code paperwork with me but Charlie rallied again and this gave enough time for the code status to be verified with our doctor at the hospital. After those hasty phone calls were made, I insisted upon moving into the seat alongside Charlie and pulling him into my lap for comfort. I'll be hanged if the buddy was going to die in that ambulance and do it strapped on a cart. I know that's totally unconventional and breaks all the safety rules, but hospice is unconventional and in the name of comfort you do some crazy things.
While I held Charlie he calmed down a little bit and I remembered him receiving nasal Fentanyl more than a year previously on another trip we'd made in the back of the ambulance.
I asked for this medication and the paramedic was quick to attend to our buddy's need. It was still touch and go until we got to the hospital and he was able to get yet another dose. His final diagnosis was a feeding tube issue and the hospital staff worked efficiently and in a timely manner to relieve Charlie's pain and the source of inflammation.
My to-do list to prepare for Thanksgiving dinner the next day was tossed out the window and my girls and husband were on their own to buy the food and prepare the meal. Thanks to yet another friend on FB, Jennifer, who knows me only because of the viral nature of the media exposure we've had, was I able to get a ride from the hospital in Milwaukee to come home for a few hours Thanksgiving day and drive my own vehicle back to be with Charlie.
Caring for a terminally ill, medically fragile child can be exhausting at any time. I do a head to toe assessment each and every time I look at my baby. When he has troubles I cannot diagnose and treat myself, it's like a part of my heart is being ripped out of my chest.
I was shaken with deep wrenching sobs when they came to get him for surgery. We had no idea what would be found when he got there and there is a multitude of risks because of his condition.
I think I'm prepared to have him die, but I am human and frail and I've found I'm left shaking and understanding it will be a painful thing no matter what when he goes. There is no quit however and by his side we shall stay.
Charlie is unable to understand why he's hurting. I can't explain things to him. I'm so grateful for our Palliative Care, Dr. Jack, the Special Needs team and the staff working in the ICU on West 5 at Children's Hospital of Milwaukee. They pay close attention to what I say and what I know about Charlie and we work together to figure out the best course of action. The feeding tube was exchanged for another, the right combination of pain meds was given, and his feedings resumed as tolerated.
Charlie was not actively dying and able to be managed at home with our hospice resources. He needed to be in the ICU to access diagnostic help outside of my expertise. It was a good day when he was feeling better and readied for discharge.
When we arrived home from the hospital, there was no zip left to do any kind of decorating. So we were going to have to be okay with that. Enter Jeremy Forne with CHIVE in Chicago. He contacted me and asked if the Wisconsin CHIVE chapter could come spruce up our house for the holidays.
Caring for hospice children doesn't happen in a vacuum. There are a number of ways we're supported in an expected manner and also in totally unexpected ways. CHIVE being willing to take the job and like Mary Poppins, "add a spoonful of sugar to make the medicine go down in such a delightful way" was how it went.
They came early Saturday morning with a whole crew of folks we'd never have met if we weren't caring for our sweet boy, Charlie. They brought decorations and enthusiasm. We have learned to be gracious receivers as well as givers. We made eggs, sausage, and had donuts available for breakfast and they went to work.
They also shared their hearts and why coming and being with us encouraged them too.
A few years ago we were given some old furniture which was being thrown away by a local hotel. This has been a godsend in the past year because the triplets were terrible spitters and would throw up on anything and anyone for months. Those old couches saw some hard wear and tear. The Chivers arranged with our local furniture store to give us a new set, truly new, not *someone else's throw away stuff new to us*.
Our brand new ones are CLEAN and intact. We've been early marriage for more than 28 years. "Good things come to those who wait" is true, folks. Thanks to Bitter Neumann a million times over!
Day to day, I can get weary trying to keep up. I do the next thing all day long and it's quite basic. Having excess energy for the Christmas season was greatly lacking. CHIVE stepped up and came in and brought with them what I consider the truer meaning of Christmas.
Jesus Christ gave the ultimate gift in laying down His life for us. When we give to others, I think that's the best way to express how thankful we are for what we've been given ourselves.
We've made some new "old friends" as a result of the media exposure and on the whole, our socks have been blessed off by people's kindness and prayers on our behalf.
The weariness of what we do is far exceeded by the gift it is to have adopted Charlie and fostered the triplets. And oh my, yes, our hearts will be broken here pretty quickly when the babies go home, and then when Charlie dies, but there is full reassurance our hearts will mend so we're not too afraid of the shattering. You can go through what we've been through and are facing and be crushed, or you can be confident. We're choosing CONFIDENT God is working all things together for our good.
We believe it's a good thing and one important way God is working all things together, to speak with the media when given opportunity. "Oh, that men would praise the Lord for His wonderful works."
A few of the stories that were run sharing how our caring for Charlie, has brought on a whole bunch of Good Will toward men!
On a sober yet hopeful note, there has been a bit of upheaval for our family in the past several weeks in addition to Charlie-babes being hospitalized.
Mark had some labwork done in order for us to relicense for doing medical treatment foster care.
Cancer markers were added because he's had weight loss, fatigue which he *medicates* by drinking a couple of pots of coffee every day, and his coloring is not great (I'd call it gray, he still declares he's quite good lookin'). One of the cancer markers came back elevated significantly enough that more specific diagnostic procedures have been put on the schedule. A colonoscopy is the first fun thing on the agenda, then we're off to Sanoviv Medical Institute for a couple of weeks of intensive medical treatment to help restore health to his body, and we'll deal with cancer if it is what is ailing him.
Let me say this very quickly, my husband is not afraid of dying. It's never been about living long, but living well, and the *well* has little to do with health. People are diagnosed with cancer or other debilitating diseases all the time. In this world, we're going to have troubles. Some live with it, some are cured of it, and others die. We don't know where he's at right now.
I realized yesterday while sitting in church by myself because Mark had such a headache he was unable to attend, that the possibility exists I'll be taking the kids to church by myself in the future because he might not be here. This is not a dramatic statement or one of a lack of faith. For me, it's a reality I have to grapple with and grieve and with which to make peace. Ignoring it doesn't help. Turning around and roaring right back into the face of that fear takes the scariness out of it.
Thank God for Beth Moore who encouraged me and millions of others to say "If this......(enter your worst case scenario) Then God! Then God! Then God! is faithful and He is good and will be there for me whether what I fear happens or not, there doesn't have to be any exceptions. I cannot live thinking there are.
Most of my life is about waiting. One issue no sooner is wrapped up and resolved than another takes its place and I'm back waiting on God to help me persevere until He says, "Yes, No, or Keep Waiting some more". I don't know how anyone copes in this life if they have to know immediately that all will fall into place like they desire. I've had few times where I can "flip a switch" and my prayers are answered quickly and exactly the way I've prayed them. Most of the time, I have had to learn to wait on God, not on the *Thang*.
Waiting on God leaves me with strength to continue doing the next thing which must be done. Wiping up one poopy butt after another, yet another round of feedings, naps, and baths. I have 4 babies, 2 -years-old and under right now, and a multitude of other responsibilities and people to care for. (This keeps me out of trouble most of the time. I'm too pooped by 8 p.m. to do anything but fall into bed) There are a lot of diapers to be changed. I'm only able to focus on these tasks because God truly does give peace which passes understanding.
Our beloved pastor, Jeff Jaeger preached a message which spoke deeply to my heart. I'm going to include the link because it'll bless your socks off also should you choose to listen to it.
A few of the points he made which impacted me were,
"God is with us. God was with us. God will be with us."
I know, that I know, this is true!
I've had the blackest of times in my life where I could not see the hand in front of my face, and my feelings dictated God was not there. But! He is unable to abandon me no matter how I feel about the situation. He also promises to be close to the broken hearted and can't ignore their cries. Some of my wounding from painful times took years before they were healed and I had a better understanding of why they occurred. Some hard places are not yet redeemed, but I know God will be faithful to do so, this side of Heaven or the other, but my tears will eventually be wiped away, of that I am sure. He promised!
Mark and I were talking this morning. Our hope is that he'll get the treatment at Sanoviv and we'll come home healthy and rejuvenated and ready to roll into his retirement in February and GET BUSY!! We have dreams of seeing a home built next door to us which will be fully handicapped accessible and we'll be able to work together to bring home, even more kiddos like our Charlie, so medically complicated and challenging they're not easily adopt-able. We've been there, done that and by God's grace are good at it! We know it can be done and we won't be borrowing unnecessary trouble. Children like Charlie are NOT trouble. They have troubles.
We are heading into the next couple of weeks celebrating our daughter Charity's graduation from nursing school and the birth of our Savior Jesus Christ. It's not just about the cradle but also the Cross. It is because He lives we have a Hope in this life and beyond.
We choose to worship while we're waiting!
