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5/21/03 God's Hands Immersed Darcy From:
Rob Payne <rob@everydayisprecious.com>
I received some complaints about the popup windows on the last email, so I’ve changed the format yet again. The following highlights take you to the place on this page that has all the details. This is a long email - sorry. If you want to just skim, here are the highlights: Darcy was baptized and Marcy made it to the baptism with the divine help of many generous friends. Marcy's physical improvements. A few of our blessings are getting public exposure and helping others. Our neighbors bring the best to us each morning. We were approved for 2nd grant for respite care. All the details: In our last email, we told you how Darcy felt Jesus come into her heart in the car on the way to Illinois for Spring Break. We also asked for prayer that Marcy would be able to attend the baptism. Those prayers were answered Sunday. Darcy took some classes from church on what to do now that she has accepted Christ and her baptism was scheduled for May 18. Many people wanted to come to the baptism from out of town, so plans were made: my Mom and Dad made plans to come from Atlanta, Marcy’s sister, Laura, planned to come from Southern Illinois to fix Marcy’s hair and help with clothes, Dean and Karen (Marcy’s parents) are here most of the time, but made sure there were no doctor’s appointments in Southern Illinois. We thought that if we practiced getting Marcy into her wheelchair, it might help her get used to it and build a little endurance for the church service. We had three weeks to practice. Getting Marcy Out Before getting too far into it, we want to let you know it is very difficult to get Marcy out of bed, so she has stayed in bed since February with the few exceptions we’ve put on this site. The biggest hurtle is managing her head and neck. When her neck muscles got too weak to support her head, it made it difficult to lift her. With one arm under her thighs and one behind her back, it left her head free to snap forwards or backwards, hurting her and running the risk of breaking her neck. Next is the ventilator. The machine itself is easy – it’s smaller and lighter than a briefcase. But there are two hoses for air (one for inspiration, one for expiration,) three smaller tubes to monitor pressures and volumes, and a fourth tube for oxygen. Power is fairly easy. At home we plug the ventilator in. When unplugged (or during a power failure,) the vent automatically kicks into its onboard battery – it lasts about 40 minutes. We can then plug into a “portable” battery – a marine battery with a handle. Then there are Marcy’s suction machines and tubes – one machine for her lungs, one for oral secretions. The ones she uses all the time are electric. We have one battery powered one that we use when she’s in her wheelchair. Finally, there is her oxygen. We have large tanks of liquid oxygen at home and one small, piggyback tank for Marcy to use when she’s in her wheelchair. We fill the piggyback unit from the large tank and switch her over. All this to say it takes time to set up and transfer her. It is difficult on her physically to be pushed around and she has to wait in uncomfortable positions for periods of time. Also, it is physically demanding for her to sit in the wheelchair, even with pillows and propping. Once in the chair, motion presents its own opportunities for balance and stability for Marcy. The vent, suction machine, and oxygen tank hang off the back and hoses and tubes run from the back to the front. Medicare helped us get a Hoyer lift that makes it easier to pick her up. This is a sling device suspended from a wheeled metal frame. There’s a pump lever that works much like a pneumatic car jack that lifts her easily. After a couple of weeks we also got the proper sling – one that supports her head. This device helps, but is still uncomfortable. The sling is like one of the uncomfortable hammock chairs that were popular a couple of decades ago. Also, the sling makes it a little trickier to keep from getting tangled up in the hoses and tubes. Once in the wheelchair, what do we do? We used to transfer Marcy from the wheelchair to our van’s passenger seat. But with all that is involved now, we wanted to try to avoid as many transfers as possible. We called the Muscular Dystrophy Association (MDA) to ask for a ride to the church. We had talked with Susan before and she has always been kind and compassionate. She called back within ten minutes. She had called an ALS caregiver she knew who has a van with a motorized ramp. Gordon instantly volunteered to drive from the airport area to Franklin to take us to the church. He even offered to come down a week early to make sure the van would work for us. We told him we were sure that if it worked for him and his wife, it would work for us. We practiced on our own only two times. It was very difficult on Marcy both times. Wednesday’s Discouragement Last Wednesday was the last try. As I got her back into bed, she was crying. Since the trach doesn’t allow her to vocalize, her cry is really more a face that shows extreme discomfort. I asked
her if she was in any pain, she shook her head, “no.”
I thought of all the things she used to be able to do and how not
doing them must remind her. I asked her if her pain was emotional
and she blinked, “yes.” She blinked her way through our
message chart and told me she didn’t want to live like this
anymore. We prayed together and remembered God’s
promise to restore her. Her distress and pain did it for me. I didn’t want her to to have to go through this again on Sunday. I didn’t realize it at the time, but Satan was working against us. There was a reason he didn’t want Marcy at that baptism. I did know that we all wanted Marcy to see the baptism, so we starting thinking of back up plans. Mariellen offered to watch Marcy during the service to allow me to go and be with Darcy. The church was already planning to videotape - as they do with all baptisms - so Marcy would be able to see it after the fact. On Wednesday, we asked the church about webcasting the service. We know other churches that do it, but knew there is a quite a bit of work involved and didn’t know if it could be pulled off. Bret, our pastor at Clearview, said a ministry team had been working on it and he would see how far along they were. On Thursday, Bret told us it just wasn’t far enough along yet, there wouldn’t be a webcast for Sunday. Another friend mentioned video phones. I had just seen one advertised and called the company. They couldn’t give me a loaner, but suggested I buy one, use it Sunday, then return it. When I asked the church about a phone line close to the baptism pool, they said the only phone near there ran through the church switchboard. Video phones (so far) don’t work through switchboards. Other friends asked if church officials could come to the house for the baptism. But baptisms with Baptists are full immersion and are “supposed” to be done in public as part of a public profession of faith, so that seemed out. Friday’s Resolve When studying Darcy’s spelling words Friday morning, one of the words was “aunt.” I always use the word in a sentence to help her spell and the first aunt that came to mind was Aunt Laura. Laura had called earlier saying she couldn’t make it to the baptism, so I used this opportunity to tell Darcy Aunt Laura wasn’t coming. It disappointed Darcy, so I thought I had better tell her about Marcy. I told her that Mommy may not be able to come because of how hard it is on her. Darcy became very upset and started crying. She said, “Mommy being able to come was the reason I was so happy about going.” Darcy’s crying woke Marcy and once she knew why Darcy was crying, Marcy started crying. Things were going downhill quickly. I wanted to help brighten things up and remembered Darcy had told me Wednesday night that she had written something in her “Becoming a Christian” class that would make Mommy smile. She had wanted to show it to Marcy that night, but it was bedtime and may have been a grand bedtime stall tactic, so I said we would do it in the morning. Thursday morning Marcy slept in a little and Thursday night we forgot about reading Darcy’s paper. So, here it was, Friday morning and we needed a smile. I found what Darcy had written and read it. Then I started crying. (click here to see Darcy’s “How I Became a Christian” sheet.) On it Darcy had written how Jesus helps her (Darcy) in her daily life: “He helps my mom step by step day by day, he heals her.” I realized that Marcy’s being at the baptism was very important to Darcy. Though very emotional and very upsetting, I had to show the sheet to Marcy to show her just how important. Now we all were crying. After Darcy left for the bus stop, Marcy resolved to make it work. I resolved to let Jesus, not Satan (or me) rule the situation. We prayed away obstacles and asked Jesus to provide the helping hands to make things happen. Darcy’s bus comes at 8:10 but she “has” to leave the house at 7:40 for her socialization time. Darcy goes next door most mornings, to Connie and Jay’s house. She visits, feeds, and entertains their boys - 3 years old and 1 year old. Connie lets Darcy “mother” the two boys and everyone enjoys their time together. The baby gets so excited when he sees Darcy coming, he bounces up and down in his walker. I was able to catch up with Darcy before the bus came, to tell her Mommy is really going to try to go to the baptism. She was fine by the time she went to school. Connie called me soon after Darcy left and told me how upset Darcy was and how it broke her (Connie’s) heart. Connie was already planning on coming to the baptism and told Darcy she would video tape it and bring it home for Marcy to see. That seemed to help Darcy. (I didn’t think to tell Darcy the church would tape it.) But Connie wanted to do more. She asked, “Would it offend you if I made some calls to ambulance companies to see how much it would cost to have them on standby if the wheelchair doesn’t work? My family and friends want to pay for it.” Marcy didn’t want this to be such a huge production and especially didn’t want to pull up in front of the church in an ambulance. But I told Connie OK to which she replied, “Good, because I already have made some calls and am making some progress. I’ll call back later when I have more info.” Two hours later she had an ambulance company that had volunteers willing to give up their Sunday morning to take Marcy to church – for free! They agreed to be on call for Sunday morning. If, as we were getting ready, it seemed that the wheelchair or van wouldn’t work, they would be at our house in 15 minutes to take her in the ambulance. So we had a primary travel plan (Gordon and his van) and a back up plan (the ambulance.) Now came the issue of Marcy’s hair. Laura had been planning to fix it Sunday morning and now she wasn’t able to come. Marcy asked me to call Hannah. She is the only person that Marcy has found that styles her hair the way she likes. Hannah works at a salon called “Hair Above All.” That name sums it all up for Marcy – the appearance of her hair is of primary importance to her! Hannah offered to give up her Saturday afternoon for Marcy and come to the house to fix Marcy’s hair. Saturday Hannah was at our house for an hour and 45 minutes Saturday night and made Marcy’s hair almost as beautiful as her smile. While resolve grew to go to church Sunday, Tim called from the church wanting to test the webcast he was preparing. I went to the computer, keyed in the URL and could see and hear the activities going on in the church worship center. They had gotten the webcast to work, after all! Sunday Gordon arrived at the house earlier than planned – even after getting lost once. His van opened on the side and had a motor operated ramp that came out as the van lowered to the ground. The front passenger and middle seats were removed so the wheelchair could just roll inside, avoiding the need to transfer Marcy. Gordon’s wife has ALS. She is not on a ventilator but is wheelchair bound. Everything was on schedule until about 10 am. The kids were up and dressed. Dean and Karen took them to church so that Darcy could meet at the designated time. But it took so long to get Marcy out, the ambulance company got nervous about the time and came to the house just to be there if we needed them. The wheelchair wasn’t a perfect fit in the van, but we made it work and finally got on the road. We were 20 minutes behind schedule. The whole way to the church, I was praying that we wouldn’t get there after the baptism had occurred. As we walked in the front, I could hear the choir still singing – I couldn’t believe it. We had not missed the baptism. I found out later that Karen had told Bret we were on our way. He held up the service for us. The song we heard the choir singing was actually the second time they had sung it in this service. The song finished moments after we settled against the back wall of the church, trying not to stick out. Bret then announced the witnessing of a miracle – Marcy’s being at church - after everyone said it couldn’t be done. Everyone turned to look at Marcy. They stood and applauded. So much for not sticking out. Afterwards Bret told us it was only the second time in his ministry here that the congregation had given an impromptu standing ovation. He said the congregation knew it was a God moment. Darcy and Shane, the youth minister, entered the baptism pool. As Shane began telling Darcy’s name and how she came to know Christ, Darcy was scanning the crowd. When she saw Marcy in the back, her face lit up like Matthew 5:14 - the light of the world. Her smile made it all worthwhile.
Darcy changed clothes and came to the back of the church to give Marcy a big hug. We left soon after Darcy came back – the day had been very hard on Marcy. Her neck was hurting and she was feeling very emotional. Gordon took us home and helped us get settled in. As Gordon was leaving, everyone started arriving from church: Dean and Karen, Connie and Jay, my parents, and a surprise visit from my brother Ed and his wife, Pam. They rode with Mom & Dad up from Atlanta. Karen and Dean had prepared a nice summer lunch and we all shared a little more time together. All in all, it was a beautifully blessed day. Satan may not have thrown everything he had against us, but he did a lot to keep it from coming together. Thanks to your prayers, he remained and remains defeated. Back
to top. For the last few weeks, Marcy has had an infection in her lungs. We had it cultured and the doctor said there was a bug there but we didn’t need to treat it unless Marcy developed other symptoms. The last few days, the infection seems to have disappeared – her secretions are not as thick and have gone back to their normal, clear color. Marcy’s skin is radiant. Everyone coming to see her comments on how good she looks. She can still open her mouth as far, maybe a little farther and can still operate her call button. Her joints remain limber as we do her range of motion exercises. We thank you for your continued prayer for her well being. A few of our blessings are getting public exposure and helping others. So many people have done such great acts of kindness for us, we wanted to try and give something back. During a hospital stay last February, it occurred to us that there are many people who know someone in need, but they don’t know how to help. If we could put on paper some of the thoughtful, creative things people have done for us, others may read them and it may spark them to do the same or similar for people they know. The Tennesean’s Williamson AM editor agreed and published our column about neighbors bringing dinner - the first of a series of columns that we plan to submit. Click here to read the online version. They plan on running our column each Friday in the Faith and Values section, beginning in June. Our neighbors bring the best to us each morning. Nan and Rodney volunteered to join the neighbors bringing dinner at night, then went one step further. Rod works for Kellogg’s and cleared it with work to bring us cases of a wide variety of individual serving breakfast cereals. Having the variety makes the kids feel like they are on vacation, staying at a hotel. We haven’t done that often, but when we have, the continental breakfasts have always been one of their favorite parts of the trip. Within hours of each other, a freelance web site designer-friend and my brother offered to host this site for us for free. The three of us will be working together to make the site easier for friends to use and easier for me to maintain. We were approved for 2nd grant for respite care. The ALS Association (ALSA) has opened a new chapter in Tennessee. In the first board meeting, they approved a grant program for respite care and have now approved Marcy as a recipient of a grant. This means that once the Ride for Life program grant expires in a couple of weeks, the same nurse will be able to come to our house one day a week for another couple of months. It has been a great blessing for me to be able to run errands one day a week and take care of some things outside the house. Our current specific prayer request: our research finds a wheelchair that helps Marcy be more comfortable for a longer period of time. You may be tired of us telling you, but we really appreciate your thoughts and prayers. Rob
& Marcy |
