"It takes invincible strength to mother a child
you can no longer hold, see, touch, or hear."
(From Mother of All Mothers by Angela Miller)
Despite saying that I was going to continue to write privately, after I signed off writing on Jack's blog I stopped writing all together. I need to write, if for no one else but myself. It's what has sustained me through the years by giving me a medium to express what's in my heart. The good, the bad, the joyful, the unbearable. It's also what connected me with the most amazing people who have become my best friends, my sorority sisters, my comrades in arms and my village. After Jack died, instead of continuing to reach out to the very people who have supported me through the thick and thin of Jack's journey, I withdrew. I assumed that you didn't want to walk this leg of the journey with me. It's painful, unrelenting, and uncomfortable. I was wrong. Thank you to those of you who have encouraged me to keep writing, who are still with me, and who are willing to walk with me as I grieve life without Jack and search for my new path.
I was hopeful that once I started writing again that I would be able pronounce to all of you that I'm doing better; I'm moving forward; I'm going to be okay. But the raw truth is that I'm struggling mightily. Each passing month does not temper the pain. Quite the opposite. Each passing month brings more clarity to Jack's last months, days and hours. And with clarity comes tremendous fear, panic and guilt. There are many moments when I can hardly breathe thinking about Jack and what he must have felt during his final days. Wishing so desperately that I had done things differently. The tears are many. I'm not holding it together very well. I'm not strong.
So many times over the last fifteen years I've heard how strong I am. Yet, every ounce of strength I possessed flowed directly from Jack. His grace and soulful eyes filled me with all the strength I ever needed. People have suggested that I find strength in Jack's memory and in honoring him. But the reality is, I draw no strength from Jack's memory or in his honor. Without Jack's physical presence, I am weak. Being strong in the eyes of others is an incredible burden to bear. Part of the reason I stopped writing is because my inability to be strong was so transparent. Having to admit now that I can't walk this grief journey alone is one of the hardest things I've had to do. But I finally had to concede.
So I write again. I ask for help and I reach out and try to connect with other parents who have traveled this journey before me and who have survived. I look to be lead instead of lead. If there was ever a time I needed my village, it is now.
Inching Onward . . . one breath at a time.
So many times over the last fifteen years I've heard how strong I am. Yet, every ounce of strength I possessed flowed directly from Jack. His grace and soulful eyes filled me with all the strength I ever needed. People have suggested that I find strength in Jack's memory and in honoring him. But the reality is, I draw no strength from Jack's memory or in his honor. Without Jack's physical presence, I am weak. Being strong in the eyes of others is an incredible burden to bear. Part of the reason I stopped writing is because my inability to be strong was so transparent. Having to admit now that I can't walk this grief journey alone is one of the hardest things I've had to do. But I finally had to concede.
So I write again. I ask for help and I reach out and try to connect with other parents who have traveled this journey before me and who have survived. I look to be lead instead of lead. If there was ever a time I needed my village, it is now.
Inching Onward . . . one breath at a time.
You are not alone. There are many of us surviving this journey, one breath at a time, and I hope that you can take hope from our existence. I do not think of myself as a leader, but perhaps I could be a companion, of sorts.
ReplyDeleteYou will find your way to live this, step by step. I don't think there is "A way," one way, but as the saying goes, we each make the way by walking. And I am here, seven years later, some days sitting in the path, some days face down upon it, and some days walking with a song in my heart. Some days just "suck oats," as we used to say in the 70s. I hope that they will get fewer and farther between for you.
One thing I find is that I have less tolerance for B.S., and less patience for it, and this makes me rather uncertain company in "polite society." I am much more introverted than I was before Katie got sick. So there can be a sense of isolation, which is another reason why writing is such a valuable practice. I'm so glad that you decided to write again. Sending prayers for light and love to surround you!
Thank you Karen. I treasure your companionship and your words. xo
DeleteGlad you r writing too. We will walk with u as long as u want us too. It's ok not to be strong. Love you!
ReplyDeleteThank you Dana. xo
DeleteThere is a group of bereaved moms who have written a book and a blog together. They call it, "Farther Along" - the link is on my sidebar. Another resource that has been helpful to me is www.griefhaven.org. I hope you'll be blessed by one or both of these. XO
ReplyDeleteThanks Karen. I have looked at the griefhaven site. I'll definitely check out the Farther Along site. xo
DeleteI think my comment disappeared. Sorry if it duplicates. I'm so glad you are writing again and that I'll get to hear your thoughts out loud more often. I don't know your pain, but I want to bear it with you. Love and Light. Jenny
ReplyDeleteThank you Jenny. xo
DeleteDearest Ann - I am deeply honored and proud to call you my friend. Like Jenny said, I do not know your pain precisely, but I have really big shoulders and a bad ass attitude if I can help you to carry it at all. Anytime.
ReplyDeletePeace be with you as you inch. xo
Love you Diane - especially your bad ass attitude. :) xo
ReplyDeleteHi, Ann. My daughter, Lucy, died nearly 5 years ago of a congenital heart disease. In the moment, I thought we were making the best possible choices for her. There were absolutely no good choices to be made, but I felt certain we were making the most loving, humane ones. Her doctors, nurses, palliative care team, etc., were on board with our decisions.
ReplyDeleteMy initial reaction, after her death, was relief for her that she was no longer suffering. I was probably in shock for about a month, because any sense of relief wore off and I just missed her at that point.
Then I, too, started to replay our decisions and her final month in my mind. I question the wisdom of aiming for quality of life. I see other children with incredibly complex heart conditions continue to live and thrive. Did I not try hard enough? Were my decisions selfish? Should I have done something else? These questions played over and over in my head.
We are now nearing the 5 year anniversary of her death. I honestly can't say that I have ever come to a comfortable place with answers to those questions. I haven't regained my previous belief that all of our decisions were the best. But I have gotten to a point where those questions are able to just sit there. They are there, but they no longer consume me. They don't take over my thoughts or interfere with my ability to see goodness and joy in my life.
Like Karen, who posted above, said, I am forever changed. My personality is different, my patience is sometimes shorter, but in other ways my tolerance is greater. But the light that I can give you is that I believe that you will learn to live with your grief rather than be consumed by it. It won't go away, but it will change.
Corri - I can't thank you enough for sharing your story. Hearing you say that you still question your decisions, but with time have gotten to the point where they just sit, but don't consume you, gives me hope. It''s clear that you understand deeply where I am at right now and I trust that I too will get to a place of light and peace. Thank you.
DeleteAnn - The ability to be who you are and feel what you alone feel (your "human-ness"), is strength. May you cope, grieve, doubt, despair, rage, laugh -- feel whatever you feel -- and let the people who love you stumble along with you, the best we can.
ReplyDeleteThank you Anne Marie. xo
DeleteWe have been with you in spirit knowing that unfortunately there was little we could say or do to take the pain from you. I'm glad that you can now see that you are still our sorority sister and nothing can ever change that. I know you can't see it now, but again I think you will blaze a trail for many of us. I suspect that sadly many of us will be in your shoes one day. Hopefully later rather than sooner, but none the less we will. In the same way that you showed us that living the life of a parent to a medically fragile child was hard but but doable you will show us that we can survive the loss of our special, amazing and beautiful children. Allowing yourself to grieve does not mean you are not strong. I am glad that there are other friends that you have whose children have passed on that can reassure you that your feelings are normal. At the same time I am SURE that you made good decisions so I really hope you can find a way to stop torturing yourself with these thoughts. I am so glad that you are continuing to write. I hope your heart and mind find peace. I believe you will. You are an awesome mom and friend. Jack was lucky to have you and you were lucky to have him. XOXOXO.
ReplyDeleteThank you Susan. xo
DeleteAnn...my sweet lady of the Willow. The forgiving tree that keeps on forgiving, bending to the will of the elements and seasons. You are responding completely and totally normal to a horrible, terrible loss that has left you so weak. Fearful, tearful and racked with anxiety. But I see more...for when the weak branches of the willow tree are tested against the wind and rain...ever bending, never breaking...your words. Reach back to that Ann that forged onward with every fiber of her body for Jack and his needs. Ask her to give you some respite and rest. Then with that know that you made the best possible decisions with all the information and resources you fought for...for Jack. Be fragile, be spontaneous, be emotional and be brave. Ebb and flow with this season in your life. That is what Jack would want...he would want you to be kind to yourself and be strong for yourself...in everything including the joy and the grief. Hold on my Lady of the Willow. We love you!
ReplyDeleteJanet