by Laura Kramer
The Heart of the Matter
I held my boy tonight as he slept peacefully in my arms. I thanked God for his health…which has always been good and still is. My mind drifted to the children and families I’ve prayed for this week.
Cody, 4 years old has been diagnosed with Ehlers Danlos Syndrome. EDS is a heterogeneous group of heritable connective tissue disorders characterized by joint hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue. In addition, Cody was also diagnosed with a hole in his heart. He will be the first case with EDS to have a specific procedure done to mend the hole in his heart.
Charlotte, 3 years old and always healthy had a virus attack her heart where a blood clot formed and then split off to both her legs. Facing possible double amputation and it is unknown what the condition of her heart will be.
All this within a week.
I was scared. The strength these parents, these mothers are beyond me. And frankly I will always want it to be that way. I don’t want to learn of a new strength by my boy becoming ill or hurt….My spirit reminds me that it would draw me to a new awareness with God, that He makes all things good for those who love Him. But it doesn’t matter. I don’t want that trial. When I started reading the emails from subscribers on our website, I quickly saw a pattern that many people were comforted by the 23rd Psalm. The comfort was needed because of how they were grieving a loved one’s, illness or death. I didn’t understand this grief and I didn’t understand their loss. I haven’t experienced it. And even if it means becoming able to relate to another person in order to bring them to Christ…I still don’t want to experience it. I’m not willing. I’m too scared…too selfish…I used to think through this ministry God was going to prepare me for something awful and then it would be my turn to be comforted by Psalm 23. Forgive me Lord, but I don’t want to ever need that kind of comfort.
So, where do I go from here? Where do I go in my own spiritual journey? Do I cling to my boy in fear; do I cling to my son in desperation? Can I enjoy life with him if I am always looking at his sweet peaceful face wondering if something will go wrong with him tomorrow? Is there sanity in thinking through all the “what ifs”? Is there joy? I fear the only way would be to detach from life, to go numb and not feel anything. But is this joyful living? Is this following my life motto of “choosing life”? What is the answer? Where is the reasoning? Where is the balance?
I keep thinking about the sound of Danielle’s (Cody’s mom) voice on the answering machine. Strong. She’s never doubted her faith in any of Cody’s medical trials. She’s been strong and courageous. I’ve been impressed with her and inspired by her. Knowing full well that Cody has a purpose in his life. And she is willing to accept wherever that purpose will lead him. She has released her boy to her Lord. Maybe that is the difference. I cling to my boy instead of my Lord. No wonder I have such fear. My boy is bright, beautiful and amazing, but he is not and can not be my Life Source. My son has no power to take away the fears in me like God’s Son can. My grip has been tight on Samuel, when I should release my grip and hold tight to my Savior. Profound and True. Yet, easier said than done. Where do I start? Perhaps I start with accepting that this is a process…
And what about nursing my 2 year old son? Is nursing a part of that process? Has nursing enabled me to continue to cling? I told my husband tonight, that it is times like these that I don’t want to stop. Because what if something happens? I would be able to nurse and everything would be better. Emotionally is what I was thinking, but reflecting on it now, I sense a personal power in nursing my child. That maybe continued nursing will prolong anything “bad” happening to him. Perhaps nursing has jeopardized my choice to release him to God. I’ve never connected those things together before. I’m barely willing to do so now. Even though sometimes I’ll talk about weaning Samuel, it’s really all talk. The truth is I can’t picture myself stopping. This is an extension of my mothering. This has in some ways become my identity. One I’ve become proud of. There is no better moment that I love looking at my son completely content when he is nursing. It brings such an incredible peace to me.
I recently read the book, “How My Breasts Saved the World” by Lisa Wood Shapiro. This is the author’s first hand experience of the trials of breastfeeding her baby. I never understood why the author named her book that. But in my own personal reflection maybe that is the stance I’ve taken. My nursing is a protective shield around my boy…in other words, my breasts have power. Maybe that power is meant to come from somewhere else…most likely from Someone else.
This is my journey.
This journal was originally written in November 5, 2005. A whole year has passed and I would like you to know the current status of Cody, Charlotte, Samuel and myself.
Cody had his heart surgery. In layman’s terms the hole in his heart was mended. The surgery was a success and he is doing great. He still has and always will struggle with the affects of EDS, but to know this at a young age will help him not go through any added pains. To learn more about Ehlers Danlos Syndrome log on to
www.ednf.org
Charlotte had a rough go for awhile and a year later her heart is functioning at a strong 60%. It has been tough on the family. They have relocated to a new home and Charlotte was in isolation for a time as to not have additional virus’ attack her. Her legs were saved, and only have a small limp in one of them.
Samuel weaned in June 2006, which was 7 months after the writing of this original journal. Of course my fear was that he and I would suffer emotionally from the disconnect, but the timing was right and he and I were both ready. My Samuel is an emotionally happy and confident 3 year old!
And as for me, I’m still on the journey. Learning to trust. Learning to let go. Learning to live without fear. My newest challenge will be the birth of my new baby due December 5, 2006. And so the journey continues…
Labels: Ehlers Danlos Disease
