I am the mother of three children. My two youngest were diagnosed with GM1 Gangliosidosis in September of 2014. GM1 is a rare disorder that gradually kills off nerve cells in the brain and spinal cord. Children with late infantile GM1 aren’t expected to live to adulthood.
My sweet Eli was pretty normal up to age 18 months: walking, approximating simple words, jumping, playing, laughing, and eating. After years of arrested development and regression, he was diagnosed with GM1 at age five. He is now seven years old, on a feeding tube, and has lost his ability to walk and speak.
Evan, at age two, was diagnosed at the same time as his older brother. It broke our hearts to learn that we would have to watch him slowly regress and eventually die.
Evan, after eye surgery to correct strabismus.
Even though our boys are still alive, I had to deal with a sort of anticipatory grief after their diagnosis. Knowing the terrible path this disease would take them on, and the eventual result, was good reason to grieve. I needed to face that grief and let myself be sad about it for a little while in order to process everything properly.
Anticipatory grief can be like a dark cloud that looms over you wherever you go. It can feel like a heavy burden that is always there. I began to talk about my feelings with friends and family, write down my thoughts, pray for guidance and strength, and have long discussions with my husband. Only after I had exhausted myself could I begin to accept.
Once I accepted the reality of our situation, I tried to look for the positives. I began to see the army of supporters all around us—friends and family who were willing to sacrifice their time and effort to help and serve us. I realized that I have a good husband who understands me better than anyone. I became more grateful for each day that I had with all three of my beautiful children.
Finding My Purpose
It became clear to me that I needed to make the most of our situation and turn it around for good. I began to figure out my purpose in all of this.
I realized I needed to focus on putting my family first. I reevaluated my priorities and let go of some work and social activities that were taking too much time away from our family. I started sharing our story through a blog and a Facebook page, as well as through other means, and I found that I gained great happiness and purpose in helping other families who struggle with similar situations.
I know the journey is going to be a long one, but I don’t want to look back on this time with any regrets. I want to look back and feel at peace, knowing that I did the best I could.
Choosing to Act
My sweet boys both need constant attention. That often makes for stressful situations at home. It can be a balancing act trying to keep my marriage intact as well as nurturing our daughter, all while attending to the needs of the boys. Identifying and sticking to my top three priorities helps things run more smoothly.
- Daily one-on-one time. Spending daily, individual time with each of my children has been like water sustaining us. We can’t go a day without it. I spend at least 10 minutes alone with my daughter every night before bed, and often in the morning before school. We talk and read favorite books together. This special time has improved our closeness and bond better than anything I’ve done. I also spend one-on-one time with each boy daily. This precious time will be something I will never regret doing.
- Dating my husband. Going on regular dates with my husband and making sure we spend quality time together is essential for us. Like I said before, life can be stressful. We have to show love and take care of each other every day.
- Using my musical skills for a purpose. I’ve always loved to sing and play the piano and have taught lessons for years, up until the diagnosis. With the encouragement of family, I realized I could combine my love for music with our experiences. I wrote a song called Sweet Angels (Cure GM1) to help raise funds for GM1 treatment and research. It has been a way for us to share our story musically. Writing the song helped me to look at things a bit differently and helped me to realize that we are living with angels.
Rising Above Anticipatory Grief
None of us knows when we will die, but we can all be grateful for what we have. In a way, knowing about a fatal disease is a blessing. It gives you a little more perspective and appreciation for the little things. More than anything, these sweet angels show us how to love better, and they lift us higher than we would have been without them.
QUESTION: Do you have a loved one dealing with a terminal illness or rare disease? How do you rise above anticipatory grief?
CHALLENGE: Reach out to someone who may be grieving in one way or another. Serve them, love them, or just listen. Offer real solutions to help lift and strengthen them.
Edited by Lisa Hoelzer and Katie Carter.
Images provided by the author.
Originally published on April 6, 2017.
Judy Hayes says
Yes, I have an 8 year old grandson, Armand, with GM1. He was diagnosed shortly before his second birthday. I can and do appreciate your post, made even more poignant in that you have 2 children with GM1. The only way I can justify the reason God chose Armand is that he is making a difference and his living with GM1 may mean another child in the future may be able to live without it.
He is part of a trial through the University of Minnesota, and they are learning so much from him. To have a purpose in life at age two is pretty amazing. And he does. Obviously we don’t like to think of losing him. In fact, I can’t imagine a world without his beautiful face. But he has shown us what living with courage, patience and acceptance can be.
These children are remarkable, and though their futures may be shortened, their eternities will be spectacular.
God bless you and your family.
Marilee Leishman says
Thank you for the beautiful comment. I agree with everything you said, especially about how their eternities will be spectacular! I love that. I have heard of your sweet son Armand with GM1. Thank you for sharing. God bless you and your family as well. 🙂
Marilee Leishman says
I just noticed it is your Grandson…not son. He is about the same age as my son Eli! None the less, thanks again!
Sarah Badat Richardson says
My husband has ulcerative colitis and had total colectomy surgery. Unfortunately there have been many complications and I am always wondering what will be next.
I wrote about it here: http://www.sarahbadatrichardson.com/in-sickness-and-in-health/
The only way I know to deal with anticipatory grief is to enjoy each day to the fullest so when I do have to say goodbye, I can have a clear heart knowing that I enjoyed my time with him while I could.
Marilee Leishman says
I completely understand the desire that you have…to be able to look back with peace, knowing that you truly enjoyed the time you had with him. That is a very strong desire for me as well in regards to my children. Thank you for your thoughts and comments.
Angela Ririe says
Thank you so much for sharing your experience and for your beautiful song. Today marks one week until I will deliver my 5th child, a baby girl named Gracie, who has a chromosome disorder and is not expected to live long after birth (it is a miracle she has survived to this point). Your message came at a perfect time for me, helping me to see all the emotions I have already worked through, the strength I have already received through this journey, and how I have been inspired in ways to help my children and grow closer to my sweet husband.
Your song also touched me and it is now added to our ‘Gracie playlist’ to continually bring us hope and courage as music has a way of strengthening me and my family.
Our situations are so different and I can’t even begin to comprehend exactly what your family faces each and every day, but I appreciate your willingness to share your story and offer a measure peace to me at this time. My thoughts and prayers will be with your family as you continue on your journey.
Marilee Leishman says
Oh wow, I am so sorry. Thank you for sharing this with me. I hadn’t even thought of a scenario like yours. Yes our experiences are going to be a bit different, but like you said, a lot of the emotions we have are the same. I pray that you continue to have peace as you deliver your sweet baby Gracie. Just thinking about her and what lies ahead for you is bringing tears to my eyes. But yes, these experiences can help us to see the beauty around us more clearly and to grow closer to our families amidst the heartache and pain.