The Highest Hurdle

by Kim Wroblewski

  May 18, 2018

  Stopped by today to go over a few things for the “celebration of life.” I had met with Father Denny the day before and he wanted me to make sure I followed up on a couple of things. Danny came home, and we went up to talk with his mom. She asked him to read at her celebration of life. He asked her if she really wanted him to. She said yes. Danny is a very accomplished reader at our church. I talked to him afterward and told him that his mom asked me to be the backup, if he was too upset the day of the funeral. I told him that we would wait right up to the last minute. He said okay, but he really didn’t want to let his mom down. She did not look good today. Her breathing is getting worse and so is her speech. She is developing sores on her ears from lying on them and not being able to turn her head. She is not comfortable sitting up, so she lays down the whole day. We have to be very careful now, so she does not get bedsores.

  May 30, 2018

  I came by for a little bit to help Terri get ready for Danny’s graduation party. MaryFran just seems increasingly frail every time I come. Her breathing is much more, shallow. I fed her a little bit; I still can’t believe she’s able to eat. This is the first time that I really had to decipher what she was trying to say to me. I can see she’s trying to control everything for the graduation party even though she knows she has very little control over anything, and it is so hard on her. Deanna is setting up her laptop so that we can use FaceTime for her to see what’s going on at the party, as she just does not feel she can be physically present.

  May 31, 2018

  I picked up the flower arrangements for the party and headed over to help set up. Deanna and I did a run through with FaceTime again so that MaryFran could stay in her bed and watch. She did not want to have a lot of visitors up in her room and wanted the party to be about Danny. It was working out pretty well; people were saying hi to her via the phone. We had a few stragglers trying to sneak up, and we explained to them that it was too overwhelming for her. There were a couple of people who chose not to listen, and it really stressed her out. They really don’t understand how claustrophobic she gets.

  They had a really great turn out for the party; overall, I think everything went really well.

  June 1, 2018

  I did not stop by, but I heard from another friend that MaryFran had a really rough day and the party took a lot out of her. I just wish sometimes that there was more that we could do to help ease her transition. I know she would really like to attend the graduation ceremony on Sunday, but I just don’t know how she’s going to do it because she cannot even sit up anymore. Deanna talked to the school and they said they would disable the block on FaceTime so that the family could possibly set that up for her, so she can watch it live from her bedroom.

  June 3, 2018

  Graduation day for Danny! MaryFran was not able to attend. Terri stayed home with her while the family attended the baccalaureate mass and graduation ceremony. Megan took videos with her phone, so she could share them with her mom.

  June 4, 2018

  My life is consumed by MaryFran now. As the group-care coordinator, not a day goes by without texts, calls, or emails about Fran. At this point we are all praying for her to die peacefully. It has taken a toll on everyone. Terri and I decided to tour Hiland Cottage, so we can see for ourselves what they offer, and we needed to meet with the funeral director to finalize the details, to make an easier transition for the kids. MaryFran told Terri she does not want to die at home. I think this is for the best, and so does just about everyone else. Her care is too much for our group now. She needs skilled nursing that most of us are unable to provide.

  June 5, 2018

  The meeting with the funeral director went well. He gave us some great advice. He told us that one thing families share with him is they wished they had put their family member in Hiland Cottage sooner. (I encourage anyone with a terminal illness to tour this facility or any facility in your area that is similar, before it is too late.) It may not be what you choose, but at least you will have options. You are also familiar with it before it becomes time to decide.

  June 10, 2018

  Lisa, Deanna, and I are on this week. All three of us are nervous because her care is getting so difficult. Deanna has decided that she no longer wants to feed her anymore because last week Fran almost choked on her. School is now out so Lisa is available during the day, which is great. Natalie came down for a quick visit. I think mostly to say good-bye because; we all know the end is near. She’s only staying ‘til the afternoon. Deanna is going on vacation on Friday, so Lisa and I decided we will stop by the house on Monday morning at 10 a.m. to see what Andy needs for the rest of the week.

  June 11, 2018

  We stopped by to check in with Andy and he assures us he is okay, except for Tuesday, when he works. Lisa will come back after Natalie leaves so that Andy can run some errands with Danny. He needs a vehicle for college. I stay for a little bit with Natalie to show her some of the book. I don’t want to intrude on her time with Fran, as she lives downstate, so I offered to email her what I have. I explained to her that I have shown MaryFran about 95 percent of the book. I have not shared all of my journals, as I am not sure if they will be included. She is overcome with emotion and is so thankful for our support group. I tell Fran I love her and will stop by tomorrow. She tells me she loves me more and gives me a smile. I give her a kiss on the forehead.

  Lisa and I were supposed to come early and bathe her, but Jen and Terri let us know that they will come at 10 and do it. Lisa will come at 12:30 and then I will come shortly after. I have a meeting in the evening and Deanna will come in the afternoon.

  June 12, 2018

  We had a change in plans. Terri decided she’s going to stay the whole day. She texted me in the morning that Fran is having a rough day and told Deanna and me that we can have a day off. Frankly, I am relieved, as I have a lot going on in my personal life, and so does Deanna, as she is packing for her trip. Every day, I am answering texts and emails from the group. I also work for my husband, but luckily, I can do a lot on my trusty iPad.

  Lisa called me that evening and told me that it was very rough. She wished that Deanna and I could have been there to help out, but Fran did not want any other visitors. Lisa cooked and ran errands while Terri took care of Fran. Unfortunately, Fran started to become incontinent and was very upset.

  Terri texted me and asked if I could come at 11 the next day so that Andy could run to the grocery store. I told her absolutely.

  June 13, 2018

  I spoke with Katie this morning. Her week is coming up, and she is nervous about what to expect. I told her that, unfortunately, it’s a day-by-day thing. She is still eating through a straw. It takes great effort for her to speak—it’s barely a whisper and difficult to understand. I told her to pray for a bed to open up.

  I got a text from Andy at 9:12 a.m. that a bed opened up. He said Fran is willing to give it a try.

  I am so relieved for her, her family, and for our group. He asked if I could still come at 11. I told him I would do whatever he needed me to do today to help. I have mixed emotions. I am sad but relieved. I let Deanna and Lisa know.

  I got there a little before 11. I am nervous; not sure what to expect. Terri is with Fran and I go over to say hi. We are waiting to hear what time the transport is coming. I try to stay out of the way but available. Andy comes back with groceries, and the kids and I help put them away. It is agony waiting. Terri and I prepare some food and try to keep things “normal.” I talk to the kids about how great the cottage is; they are ready for her to go. They need to have their house back and to have a sense of normalcy. Meg tells us about coaching volleyball camp and Danny is excited about the upcoming college orientation. I feel like an intruder but feel so very honored to be included. I realize at this moment that as horrible as losing MaryFran is, they will be okay. Andy is a great dad and Terri is a wonderful aunt. I sit with Fran for a little bit and give her some water. She asks Terri and I to get a fe
w more things to bring with her. She has a beautiful Jesus painting she wants, and I run to grab it. Transport gets there around 12:30. Being a small town, we of course know Cal, one of the EMTs. As they load her onto the stretcher, it is everything I can do not to breakdown. I know this is the last time she will be home and is now truly headed toward her death. I cannot lose it in front of her kids. They are doing surprisingly okay. True to form, as they wheel her by us she gives a big smile. She is still directing us what to do and Andy tells her, “Franny, you are still running the show.” The kids follow Andy in the ambulance. Terri, Craig, and I clean up all of the medical detritus so that when the kids come back it is not such a reminder. Andy texts that a few more things are needed, and we will take turns running them over.

  When the kids get back they are happy with how nice the cottage is. They talk about spending the night there and are happy she will be cared for. I tell them that I am putting out the family time signs and they can leave them for as long as they like. They are so happy and relieved. Danny tells me, “Thank you so much.” I tell him everyone needs to knock on the door now.

  I run over a few things she needed and some of the flower arrangements. Just as I get there the hospice doctor shows up. I stop, unsure whether I should leave or stay. Nobody looks at me or asks me to leave, so I just go about putting things away. Fran’s ALS presents differently than typical ALS, if there is a typical presentation. She can still move her legs a little bit but her whole upper body is basically useless. The doctor comments on this. She also goes over her requests regarding feeding tube, vent, and DNR. Fran does not want any of this except the DNR. By this time, I decide to sit on the couch in the sunroom, out of the way but nearby if they need me.

  Dr. Maggie and Andy come over and sit with me. Andy introduces me; Maggie knows my husband—small town! I explain to her about Frantabulous Friends. She cannot believe the size of our group and how we have cared for her. She lays down the “rules” of Hiland Cottage for me to email to the group. She asks that we let the nurses take over her care, but we let them know Fran’s preferences. I go over with Andy and Fran what they would like in the email and she is more worried about Danny’s birthday, which is tomorrow. I give her a kiss good-bye. I tell her I love you! She whispers I love you more! I leave around 4 and I am exhausted. I send the email and I am inundated with texts and emails. It’s all good. I want to reassure everyone; I want to do what I can for their family. My husband and son have been wonderful and patient through all of this.

  June 15, 2018

  I stop briefly. She can barely whisper. She has so many visitors. She loves the visitors, but she is so tired. Maggie found a way on Google forms for people to sign up for an hour at a time to sit and visit. We will try this so someone is with her from 10 a.m.–8 p.m., then Andy can have a break. People can still stop in if they want. It is a steady stream of visitors. Andy stays the night every night with her. He truly is an amazing husband.

  June 18, 2018

  My husband and I go visit Fran for a few minutes. He hasn’t had a chance to see her in a long time. She is tired and restless, so we don’t stay long.

  June 19, 2018

  I have a migraine and debate all morning about going. I feel like something is pulling me to go see her, so I go and there are a lot of visitors. I talk to Andy for a few minutes to see if I need to send out anything new in an email, and he tells me no. I don’t want to intrude on other’s time with her, as I feel blessed to have had a lot of special moments with her, so I just wave hi and tell Andy to tell her I love her and that I will see her when I get back from a short trip to Mackinac Island.

  June 20, 2018

  Andy texted me at 8:20 a.m. MaryFran passed away at 8 a.m. The kids and Andy were with her and she went peacefully. I am sad, yet happy she is now with Jesus. I will miss who she was before her diagnosis. I am glad she is no longer suffering, though she never complained. ALS has changed me and made me a better person, but I will forever hate this disease. Her ALS journey is over.

  June 25, 2018

  Today is her visitation and vigil. I spent the last couple of days fielding texts, emails, Facebook messages from people wanting to know the dates and times of the visitation and celebration. I hope and pray everything will be as she wished. Natalie and Melody worked on the photo boards. Deanna is on vacation and is working on a video that she sends to me at about three o’clock. I email it to Deacon Paul and he is able to burn a DVD so that we can play it on the TVs in the gathering space. I watch it in my car and can’t help but cry and smile at the same time.

  The photos are absolutely stunning. They are blown up and on easels, all through the gathering space. The DVD is streaming, and it is perfect. The flowers are beautiful in her favorite colors. St. Francis Xavier Church is a very large church and Andy is at the front, greeting people; the line is out the door. It stays that way until the start of the vigil. They have her ashes in a wooden box engraved with her name, surrounded by flowers with her wedding portrait, and it is breathtaking. I thought that I could handle it, and my breath catches in my throat. My husband senses my distress and grabs my hand, and I say to him, “I can’t look it at it. It’s too much for me.” He gently leads me away, so I can compose myself. We talk with our friends until the vigil starts.

  The readings are beautiful and Deacon Paul’s eulogy wonderfully sums up MaryFran. He spent a lot of time with her and really got to know her. Andy starts with the speeches. I do not know how he is able to give such a loving tribute. He breaks down several times but gives the most wonderful, loving, heartfelt speech. The love he has for Fran is so evident that I think every woman in attendance is jealous of her! All men could take a lesson from the husband handbook of Andy. Though I am sure he would readily admit all the mistakes he made through their marriage, there is no doubt that Fran was the love of his life. Her parents and sister give touching tributes. My husband is elbowing telling me that I need to get up and talk on behalf of the care group. I tell him that I have not prepared anything and I don’t think I can do it. Those that know me, I am never at a loss for words! Fred tells me I have to. Danny gets up and speaks and it is heartbreaking, yet a wonderful tribute to his mother and the relationship they had. Megan is next and she breaks the ice with a touching and hilarious speech. With her courage and lightening of the mood, I now know I can do it. I make it through and think I do a decent job and hope it comes off as I want. Several more people speak and we finally close. It is a loving tribute to a woman that touched many people.

  I get home, and to unwind I decide to play a few games of words with friends against the computer. I am shocked when the first computer person I play is named Franni. Call me crazy but I do not believe this is a coincidence.

  June 26, 2018

  Today is the day of the celebration of life. Surprisingly, I am not nervous. I know I’ve done everything she wished. I just hope everything goes as planned. It is in God’s hands now. My son John wanted to be an altar server for the service. I know he will do a great job. The family is very close with two priests, and Father Denny will be the main celebrant with Father Mathew as the co-celebrant. I am very surprised to see Bishop Lynch and Father Brad. I almost laughed out loud and thought only MaryFran would be able to get a bishop, three priests, a seminarian, and a deacon to preside over her service! Her niece Dana sings as a soloist and is amazing. Everything is perfect and exactly as we discussed—from music, readings, and Father’s eulogy is simply amazing. She would have loved it. I felt like there was an aura shining through the church that day, an indescribable light shining onto the altar.

  We head over for the luncheon and I hope we can pull off the margarita toast as planned. We gather the ladies from the group in the parking lot and a few others join us. Marie has a five-gallon cooler and Julie brought cups and ice. We were hoping to grab Andy but didn’t want to take him away from his family. But wouldn’t you know, I am pretty sure Fran was watching over us because just as we were almost ready, I see Andy walking a
cross the lot and I wave him over. He asks me, “What are you guys up to?” I tell him MaryFran made me promise to do a margarita toast at the luncheon. He throws his head back and laughs and says to me she would have loved this. We raise our glasses and I give a short but sweet toast and take a sip of our delicious margaritas. It made everything perfect. We decided we needed a group photo with Andy in the center to commemorate the occasion. The lunch is wonderful. Marie wrote a song and some of the ladies in the group sing it at the end of the luncheon. Marie is famous for her little ditties. My son summed it up best. He told me, “Mom, I know you helped plan this, but I have served a lot of funerals and this was the most beautiful funeral I have ever served.”

  June 29, 2018

  I stopped by at the cemetery today. I needed a couple of days to grieve. I tell MaryFran, “I hope you loved everything because I think everything was perfect. I miss you, but I am forever grateful I had this time as your friend.”

  I have included Deacon Paul’s eulogy and Father Denny’s homily. I feel that in this day and age of discord, they are so beautiful that they need to be shared.

  Deacon Paul’s Eulogy