Vicki and I have met many wonderful people – some online and some in person – whose lives have been affected by FTD. Some of them share about their lives through writing – books, blogs, Facebook posts. Earlier this month one of our friends, Michelle Sewell Burdette, shared her memories and thoughts on the 1-year anniversary of her father’s death from FTD-Pick’s. We wanted to share Michelle’s story with you and she’s given us permission to post it here. – Jim Coyle
(Posted online by Michelle Sewell Burdette January 5, 2011.) A year ago tonight was the last time I went to bed wondering when I would receive “The Phone Call”. You see, I knew “The Phone Call” would be coming very soon because I had been with my dad at Christmas and realized it was time for the Lord to bring him home. “The Phone Call” came at 3:45am on January 5, 2010. My Daddy had gone home to heaven.
I knew since the day we received the diagnosis of FTD- Picks that “The Phone Call” would come someday. After all, I’m a research fanatic so I had read all about the disease, learned what the prognosis was, learned what the symptoms of early, middle and final stages were. Armed myself with a wonderful online support group for families with a loved one suffering from FTD Picks, bought and read books on the disease, and realized that with no treatment or cure, there would be several last times with my dad. There was the last time that he knew who I was, the last time I heard him speak, the last time he voluntarily hugged me or kissed me goodbye, the last time I played the piano for him, the last time he smiled at me and the last time I told him what a wonderful Daddy he was and how much I loved him and said goodbye and then stood in his room at the nursing home (Dec. 26th, 2009) and prayed for God to take my Dad home and welcome him to heaven.
I’ve learned so many things, some good, some bad, and some just plain life lessons in the past year. As I sit here struggling with the fact that in a few hours, it will officially be one year since I lost my dad; so many things are flying through my mind and I want to write them down and share them with the hope that I can offer hope, growth through what I’ve learned, or just plain make myself feel better because I’ve gotten it out of my system. If you’ve been tagged to this note, it’s because I feel there’s something written here that you can either benefit from, be blessed with, or so I can thank you.
Here’s what I’ve learned:
1. NO ONE can ever replace a little girl’s Daddy. He is a one of a kind person and relationship to a daughter. To the daddies and the daughters out there, realize how important the father-daughter relationship is and nurture it into the beautiful garden it becomes over your journey together.
2. I was extremely blessed to have received the earthly father I had for he taught me so much and continues to teach me even to this day. There are times when my father’s words echo in my head over and over when I’m working through difficult tasks. And, as always, heeding to his advice has served me well.
3. I enjoyed a 41 year relationship with my father that many are envious of. That in itself is a blessing to have such a wonderful relationship with a father. No relationship is perfect and every relationship requires work. However, if the relationship is strong and loving, even the arguments or disagreements can be worked through quickly.
4. Cherish every second you have with your loved ones whether they’re healthy or ill. You will always have the memories and not even death takes those away. Ironically, FTD can, but not death.
5. Treat each moment with people as if its the last time you’ll see them. We all know death can come at anytime with no warning. It’s much better to live with memories then live with regret.
6. No two people grieve in the same manner. Some people choose to ignore the grieving process and deal with the loss by keeping busy. Others choose to openly express their grief. And still others, will remain as stoic as possible and grieve only in the privacy of their homes.
Then, there are people like me. My grief journey is an up and down battle so far. Some days I just burst out crying over a memory and from the longing of wanting to talk to my dad. Other days, I think of things he did or said and smile or actually laugh. For the most part, I try to remain stoic when around others and only allow myself to cry when I’m by myself. I’d rather experience those moments between me, God and my dad.
7. The best advice I received was to create a place in my yard where I could go to just sit by myself and think about my dad, talk to him if I wanted to, or just smile as I walk by. I simply planted two yellow rose bushes on Father’s Day near a large tree and added a memorial stone stating, “Planted in memory of a life well lived”. I’ve spent a lot of time out there over the last 6 months.
8. You cannot, no matter how hard you try, put a timeline on grief. I will always miss my Dad, I will always wish I had more time with him, and I will always love him with all of heart. The loss of such a relationship cannot be resolved by putting a timeline on it. There never will be a “project finished” point. There will, however, come a day when I will be reunited in heaven with my dad. What a blessing it is to know that!
I’ve received many blessings in my life and some of the blessings have come through the loss of my father.
1. I’ve met some wonderful people who have become trusted non-judgmental listeners.
2. My relationship with my brother Mike has deepened and we are in contact much more frequently now.
3. My relationship with my mother (which has always been good) has become so much more than a mother daughter relationship. She TRULY is my best friend.
4. I have met two wonderful people that I have to name on here because they are so inspiring to me. Vicki Wells Bedard and Jim Coyle. Vicki, you have given me what I missed on our FTD journey with my dad because you choose to remain so open about your own diagnosis and blog and share your thoughts, fears, successes, trials and tribulations. I could never thank you enough for sharing your journey with us as well as shedding light on a disease that is in severe need of attention. Jim, the work that you do helping Vicki, your community, the FTD community and your general nature are a blessing to me as well. I truly feel blessed that my life has been enriched with your presence.
5. I have been blessed to be reunited with old friends who knew my dad which allows me the opportunity to laugh over things I’d forgotten he did or chuckle at some of the things he said.
5. Finally but definitely not the least, to the entire Leiphart family, an entire family that’s blessed my whole family over the years. I can never repay or even begin to express my gratitude to all of you for your constant and continued support of my mom and dad while he was ill as well as the open arms you continue to all have for my mom. Sandy, Larry, Mark, Debbie, Julie and all, you have my forever gratitude for being the family for my mom since I’m not in Pennsylvania to be there.
The last thing I want to write is to my Dad.
I know you’ve seen our tears shed because you are no longer with us. But we all know this journey ended as it should and we know we’ll see you again in God’s time. The tears shed are our tears of missing you, loving you, and loving all the memories we each have of you. We are happy that you are at peace with our Lord, but we are human beings and tend to be selfish. I would do just about anything to be able to have one of your huge bear hugs, hear your laugh, or get a call from you to say Hi. But I do realize that you’re in a better place than we are here. On this one year anniversary of your homecoming, I just want to tell you that I love you to heaven and back and always will.
Love and miss you forever,
Your “Missy Boo”
Michelle, thank you for your beautiful thoughts and your generosity sharing them with us @ Vicki’s Voice. You have an insight I won’t have until it is too late to respond. As an FTD sufferer I spend too much time ruminating on what is ahead. I draw my head into my shell, hoping it is all a bad dream. But life is what I can still make of it, and finding you as a friend, and so many others, somehow balances the scale. I believe your Dad is a saint. And those of you who attended him will share the same status. I know, from your writing, you began to say goodbye long ago, and each time a piece of his personality was lost. But he knows you, and he is now totally restored, I believe, and will watch over you, and hopefully his comrades of FTD & Picks. Thank you, Sweetheart. I love you and know you are in all our prayers.
Papa? It’s ok if you spend a bit more time with Michelle than Vicki right now. You are lucky that you have us ;o)
Yes thankyou Michelle for your moving memoir – your Dad was so lucky to have such a wonderful daughter and carer. Hugs freda
Michelle, I don’t even know where to start and I am a terrible writer, which is why I’m a hairstylist! (lol). After I read what you wrote and cried like a baby I decided to try to comment! That was a very inspiring and loving story that you have just shared with us! You never have to thank us for our open arms to your family because the SAMMS family is our family too! I’m so sorry for the loss of your dad, he was truely a wonderful, handsome, loving, cheerful, fun person! When they diagnosed your dad I just couldn’t believe how quickly each time I saw him he just was worse and didn’t know me as well and of course I would still hug him and say you know me Al I’m Debbie and just laugh so he would feel ok with it! That was just the way I had to be able to deal with it! Even though inside it broke my heart into pieces! What you said about spending time with people like it were your last is so true! I think maybe I should read this every morning! We just never know when it will be our last day! Your dad was a great husband, father, grandfather, and friend anybody could ever ask for and I can’t believe it’s been one year already! I can tell it’s been really hard for your mom too! So thank you for all of your kind inspiring words! Your are a great daughter,mother,grandmother and friend even if we don’t see each other often! Thinking of you often! Your mom keeps us filled in with pictures and stories! Much love your way! Deb