Anticipating the Loss of my Son and Choosing my Approach to Grief

Michelle:  Well, hey everybody, and welcome back to Qualified - the place where incredible people share their stories of overcoming great adversity and loss to inspire you and give you hope. I'm Michelle Heaton. Well, my guest today was share about the loss of her 27-year-old son, Matthew. She'll tell us about the difficult times and the struggles she experienced while caring for a child with a terminal illness, but more importantly, she'll offer her own interesting perspective and insight on how she managed her grief, that involved writing letters to herself that would be delivered following her son's death today I welcome Elaine to the podcast.

Elaine:  Thank you for having me.    

Michelle: So, to give us some background, tell us about your son's illness and how it was diagnosed.

Elaine:  So, he was in preschool for speech and he was having a hard time riding a tricycle. And so, the teacher just suggested that maybe I might go and have him checked out.  To see if his hips were aligned correctly. So, I did that and at this time this was back in the early eighties and, the doctor ran some tests, and. He actually came to the house to give us the news, that he was pretty much sure that he had Duchenne's muscular dystrophy at that time. They didn't really know what caused it. They didn't know a whole lot about it. And, the only thing that they knew was that their life expectancy usually wasn't past their early teens. So, he was four and a half., he was walking. The disease affects all their muscles. And so, their muscles start to atrophy and your heart's a muscle, your fine motor skills, all of that. So, he walked until he was about eight years old was somewhere between second and third grade. and during that time, , He struggled with, , getting around , and so we just did our best to make his life as normal as possible. 

Michelle: Well, getting the news that your son would most likely only live to be a teenager, had to be devastating for you. 

Elaine: Yeah, that was a very difficult time. The only thing I remember is that there was a six-month period after receiving that. I can't even tell you what happened.   You just go through the motions because I had two other kids. I had a six-year-old and an eight-year-old, so you just go through the motions of taking care of them and doing your daily chores and getting them to school and this and that. So, there was probably six months that I really can't even tell you what I did, you know? Then after that, because they didn't know a lot about it.  They were doing research. With it. And we did the muscular dystrophy, you know, the outreaches.  Jerry Lewis did the fundraisers. And so, we, the family all got behind doing fundraisers and at that time they would help, by. Medical equipment that you might need. So, he ended up going into a wheelchair, and probably second grade, and that was a manual one and, we eventually got him a motorized chair and muscular dystrophy. The association helped purchase that. 

 Michelle: Can you talk about, any specific hardships related to his illness? Anything that was really difficult, emotionally for you to deal with? 

Elaine:  I think one of the hardships was, you're not only dealing with, the difficulty for him getting around and, learning how to read. He had a hard time with this speech. So, he was in a speech communication class and he was in a special resources and, so, for him, it was just always a struggle just to do everything. But the hardest thing was that the disability act wasn't in place at this time. And so, for all the schools I had to fight. To have he had an aide with them. And, her name was Etta, and she followed him from second grade all the way through high school. So, she, was. An extension of me while he was at school. And, we had to fight for him to go to the bathroom someplace because they didn't have the handicap accessible stalls at that time, and that didn't take place until in the early nineties. And he graduated from high school in 98.but Matt had a great sense of humor., I'll just tell you a little story that I heard that they would. Those little packets of ketchup on the floor in the cafeteria, and then they would like them up and they would have mat random over and squirt out the kitchen. So, he had a great sense of humor Yeah. He never really saw himself as being disabled. 

 Michelle:  You said Matthew lived to be 27, which is much longer than doctors would have predicted. And that his outlook and attitude over the years was so positive. Even with his medical team and caregivers. Were there any moments that you remember that were especially meaningful? 

Elaine: Yeah, caregivers. Yeah. We had like five at one time., that would come in between the day and the weekends and they were, a variety of ages. He couldn't turn the pages on his Bible, but he read his Bible every day. And so, either they would read to him or, he would read and then he would have them turn the pages. So, he would minister to those ladies and, a few of them receive Christ.  Matthew loved the Lord and, he was able to share that love to other people around him.  He loved to go to the mall and I have a nephew, Dominic who, was just really special with Matthew. And he would drive up from San Diego in one day and they would go to the mall and they would hang out. And then, they'd come back and I would put Matt to bed around 10 and then Dominic would drive back to San Diego that same night. So, he would do that on a pretty regular basis so they could hang out and he would just have a regular life. He went to prom. there was a girl who agreed to go with them. And so, my other nephew, drove the van and they took him to dinner and, James’s fed him, and so they went to the prom and everything like that. So, he was the, school editor, for their newspaper. So, he loved life and he lived it to the fullest that he possibly could.

Michelle: Well, one of the things that you did to prepare yourself for the end of his life involved letter writing. Tell us about that, why you decided to do it, and I believe you mailed them to yourself and then opened them after his passing. 

Elaine:  I did. I wrote letters to myself because, I think it's a little bit different when you're taking care of someone and you have that anticipatory grief because you know, what's coming, versus somebody who loses somebody, very suddenly you're grieving. This is totally different. So, I had been taking care of Matt, since he was born and I worked while I could, and then I stopped working to take care of him. And so, I decided that I was not going to spend another two years grieving once he went on to be with the Lord. So, I wrote myself, I would journal all the time. So, I wrote myself four letters and, I gave them to my neighbor and I labeled them letter one, letter two, letter three, letter four. And I just asked her to mail the first one a month after he passed away. And then the second one, maybe a month and a half, and then, you know, just go from there. And so, I would get these letters. I addressed them to myself. but the postmarks on them. And so, she mailed them to me. And for me, it was kind of like a pep talk because I have seen other people when they grieve. And I know that grieving is, definitely a process that we all go through. But I also know that people get stuck. Yes. I wanted to go through the grieving process and I wanted to move on and complete., the whole process. And so, the letters actually helped me.

 Michelle:  You said you were out at a coffee shop one day with your husband and that you met a woman there that got you thinking about the different ways people grieve. Tell us about that conversation

Elaine:  My husband and I just went out to get a coffee. And we had our dog with us, which was a Shiatzu and it was Matthew's dog too., and so she had. She had a dog and we've just got talking and she had talked about how her fiancé was killed suddenly in a motorcycle accident. And so, I just asked her, well, how long did you grieve? She goes, well, it took me like two to two and a half years. And so, at that point in time, I just decided I did not want to spend another two years grieving. When I already knew that when Matthew passed away, he was going to be in the hands with the Lord. So, I just purposed in my heart that I was going to write myself pep talks.

Michelle:  Well, Elaine, that's incredible. I've never heard of anyone making a decision like that. You were just determined that you'd done your part to love and care for Matthew. And you knew that he would be in good hands when he left this world. And you wanted to get on with enjoying your life again. So, you told me that you wanted to bring a couple of the letters with you to share on the podcast today. 

Elaine: I did. So, the first, when, I addressed it to myself and I just said the first letter to self. I'm writing you this letter, because I want to help you get through the grieving process of Matt going home to be with the Lord. This is just one of many more to come. I felt it was important to write to myself because oftentimes when we are hurting, we don't listen to other people and end up in a black hole of despair. First of all, if you, or if I am reading this letter, then Matt has passed away and it is probably within the first month of him dying. Hopefully the service. Are all done all the visitors have gone home and it is only you mark and Moses. Moses is the dog. Now, what, what are you going to do each day to get up out of bed? I know you have great friends who will be there for you. Listen to them. Don't try to help Mark get through his grieving process. Only focus on you and getting through your process. I want you to know you took very good care of Matt. In fact, such good care that you extended his life many more years than was expected. You must let go. Matthew is much better off than having with our heavenly father. God knows the right time. For everything in our life. And it was time to release Matt back to the Lord. I know you will feel sad and won't know what to do with yourself with your extra time, but don't waste your time. Having a pity party, take a trip to visit Anthony, which is my son, Marianne, my daughter and the rays, which are dear friends of ours. Remember all the time that you and mark were not able to go away together, go on a camping trip and enjoy the outdoors. Live life with no regrets, living each day. God blessed you with a very special boy named Matthew and you took extremely good care of. And now it is your time to enjoy life. You may not feel like going anywhere right away, but don't let Satan Rob you of enjoying life. You have so much to give, especially to children. This is a gift from God. So, use it. You have work to do places to see and more love to get. So go do it. Remember that God does not give us more than what we can handle. And he always provides an escape. The Lord is walking with you. He loves you very much. Be blessed. I read it this morning. I cried again.

Michelle:  All the things you wrote in there are so beautiful. And they were things that took me a long time to realize, things like you were a good mother. You did raise him well, and you took good care of them. Those are good reminders when we start having regrets, having those thoughts that come and try and convince us that we did a bad job.

Elaine:   Yeah. I mean, one of my mottos that I've learned from taking care of Matt is live each day with no regret.  Because you can't play, the woulda, shoulda, coulda. It's very important that you say, and you do what, you know, in your heart that needs to be done., because when people say, I wish I would have done this, or I wish I could've done that. You don't get to bring back those times. Yeah. So 

Michelle:  I like how you talked about, you know, take a trip with your husband and go outdoors and enjoy it. And, that's really good advice because I have to say, I felt like a sense of guilt., when Sean first passed and we used to always go camping together as a family. And after he passed, I couldn't go, I couldn't go back to that place without him. And I can say now that I have that peace and enjoyment and I live life that way, but it took a long time. So, my hats off to you for accelerating that process.  Okay. So, you brought another letter to read today. And in this one you included scripture from the old and New Testament to help you be strong at this critical point in your grief.

Elaine:  So, I wrote this one in 2006.  It's interesting. It was March 20th, 2006, and Matt passed away, April 15th, 2007. So today is the first day of spring. And the sky, the full clouds. I'm sure it will be rain later. During my Bible study, I made a note to myself to write myself another letter. This will be the fourth one. I have written to myself to help me process Matt's.

Dear Elaine, I'm not sure where you are at in the processing Matt's death, but I do want to make sure that you don't get stuck in the grieving process during one of the Bible studies with Beth Moore, she was talking about faith, Isaiah 43, 1 -3 , but now that says the Lord who created you and Jacob. He who formed you O Israel. Fear Not for, I have redeemed you. I have called you by your name. You are mine. When you pass through the waters, I will be with you and through the rivers. They shall not overflow you. When you walk through the fire, you shall not be burned nor shall the flame have scorched you for I am the Lord, your God, the holy one of Israel, your savior. She talked about how important it is to press through in every situation because God's promises are on the other side. I want to make sure that you know, that you took care of Matt, the best you could. That is why he lived so much longer than the doctors had originally said, don't focus on. His loss, but what Matthew has to give up and heaven, focus on the eternal life with God and the creator, and that God had the perfect time for Matt to go home, to be with him. Matt is whole again, spirit, soul, and body. I hope you and mark are doing fun stuff. If not, I want you to plan a trip for the two of you. I know that your relationship was always different then all your friends who could go and do as they please. Well, now it is your time to enjoy one another Ephesians six, 10 -18, putting on the full armor of God.  You know that Satan is going to try and speak lies to you and mark don't let them take authority over any of his lies. Put on the full armor. Gird your waist with truth. Your breastplate of righteousness shod your feet with, the gospel of peace shield of faith, quench every fiery darts, the helmet of salvation, the sword of the spirit is the word of God. As you read over the different jobs that armor does for us. And just reinforcing the fact that God fully equips the saints. God is the one who created us, even to grieve when we lose a loved one. And he knows that it hurts when we go through, but he also provides a way for us to come out on the other side he is still ours. I know how much you love the Lord. And I hope you have already started the process of going back to school and working again with children. God will use this process to minister, to others who don't have the same kind of relationship you have with the Lord. I hope Mark can process this because men don't share their feelings so, you will have to be patient with him. If he is having a difficult time with things, be blessed. You have wonderful friends call one.  If you feel lonely in Christ Jesus, Elaine. 

Michelle:  Wow Elaine, I know when people lose a child, a lot of people struggle with their faith.  A lot of people have told me on the podcast that they were mad at God, even people of faith., and it took them a while to come back. You already had a strong faith. You continued in Bible study, and then you wrote scripture into those letters to remind yourself that attacks would come against you, but to gird yourself with the weapons of warfare, so, I think that's beautiful. Thank you. Yeah. 

Well, Elaine, you've already shared so many important life lessons with us. From your experience with Matthew, you reminded us to live life with no regrets that sometimes people get stuck in their grief, but that we need to move forward in time and learn to enjoy life. Again, you talked about pressing into your faith and knowing that God's promises are on the other side, and you knew that God would use what you had been through to minister to others who don't have the same level of faith. What other thoughts can you share with someone listening who needs hope right now? 

Elaine:  You know, I think we all go through different situations in our lives. Everybody does. And I think when you don't have somebody who you can rely on that, you know, will always be. And never forsake you. I think it's more difficult. Fortunately for us, we did come to know the Lord early on in the process when Matt was diagnosed., I often wondered if I didn't know the Lord, if I would have, if we would have ended up the same way. Cause I know this can be. Extremely difficult, not only on the parents, whether or not they even stay together, but the other kids. So, my oldest son became a doctor because of this. Wow.  So, for me that was huge. Yeah., that was only because they didn't know anything about it, you know, for such a long time. So, I. I think that you're having faith and wherever that is is what helps you get through things. Knowing that Christ is always. For you, you have people within your family. Sometimes they're not the best ones to minister to you. And sometimes it should be somebody maybe outside of that, your immediate home that, can minister to you. I'll never forget. I had a dear friend that came over and just sat on the couch with us, but knowing Christ, I think really helped me get through it. I know that for a lot of people, blame God for that. I never blamed God because I know that God's purpose for us is always good.  and anything that Satan tries to, to throw our way, God will turn it around to glorify him. So, I, I never did go through the process of blaming God for it., I read my journals and I know, some of the things in that were not the nicest things, but God's a big God. So, I. Right in my journal and share my heart with God that I, wasn't able to share with somebody else, my husband or a close friend, because I knew that God could handle it.

Michelle:  And he knew anyway. Yeah. So, it sounds like your faith might've even gotten stronger as a result. 

Elaine:  Definitely, definitely. I think you also need to focus on yourself. I think when you go through these difficult times, you kind of feel like is that selfish, but I always, during that taken care of Matthew, I always went to the gym and worked out and then, or I would go, to one of the local coffee shops, but that's where I would journal. I would listen to my music and I would journal or just read a book., and sometimes I just went to the beach, just to do something by myself and for myself. So, a lot of times I think, that we can put on the back burner and, bless yourself. God wants to bless you. 

Michelle:  Elaine, you mentioned experiencing anticipatory grief, which is the reaction to a death that is expected or anticipated. And there are other types of grief that we've talked about on the podcast, but there's also a term that we've used in this forum and that’s secondary loss, and those can occur when a significant loss like the death of a loved one is followed by other losses in its, aftermath. You told me about having to put down Matt’s dog last year, and how that impacted you emotionally.

Elaine:    That was really hard because that was affiliated with Matthew. And so that was kind of like the last thing holding on, and so, we, you know, it was, it was time. He was 17 and we got him when he was a puppy. And so, Matthew had the opportunity to train them and, and whatnot. And, so he was a good dog and, Matthew had another dog that was attached to his wheelchair that was trade for the disabled. And we had to put her down in, 2000, I think, but Moses was kind of his cuddle dog on the best, because by now Matthew could only be in his chair for three hours a day. So, he was in bed for the majority of the day. And so, Moses could be on the bed with him because he was so. And then when, I went back to work and Mark started his real estate in the house and made Matt’s room, his office. So now he's home with Moses all day. And so, they became really close. So, it was an interesting bond. 

Michelle:  Well, I'm sorry to hear about Moses, but I thank you for sharing that story as well, because I know there are people out there who understand the pain of secondary loss and who are going through it right now. Well, Elaine, I can't thank you enough for agreeing to share Matt story and for reopening those old letters and at the same time, maybe some of the old wounds for the purpose of helping others. I know it's not easy to do so. Thank you again for being here. 

Elaine:  Thank you for having me.  

Michelle:  Well, you asked me if you could pray for our listeners as we close, and I would love to have you do that. 

Elaine:  Well, I heavenly father, we just thank you for the words have gone forth. I know father that we go through these situations and then you always have a plan. And I know that there's other people that are hurting out there that can utilize the words that I've said and that Michelle has said through our experiences, father, we know that your promises are always yes and amen. So, father, I just ask that you bless those that are hearing., wrap your arms around them. Father, mend their hearts, show them a way, give them people in their lives that can minister to their hearts. And we just thank you for your love and your compassion, your grace and your mercy, which are new every day in Jesus’ name. Amen. 

Michelle:  Amen. Thank you so much, Elaine. 

Elaine:  You're welcome. 

Michelle:  So, for those of you listening, if you're struggling with loss right now, I pray that you were encouraged by Elaine's story of faith and love. Don't lose hope. You will get stronger as a result of what you've been through. And one day you'll be able to help someone else in their time of need.

Thanks for listening.