Dan and I had a rare date night last Friday. We talked plenty about our journey with Danica and our faith. Dan is really a man of few words most of the time, especially in social situations, but when he and I are alone he opens his heart. Like many marriages there is often a disconnect between Dan and I in where we are with our understanding of God and our walk with Him. He knows my faith is often very complicated by theology and too much "head" knowledge. He sees me struggle to find the simple truths that matter. He shared with me his daily experience of late--how when he wakes he feels dread and great pain at facing our life but every night, no matter how hard the day has been, he is drawn to say "thank you" to God. I have thought of this over and over since our talk and realized I have been stuck in a one sided lament and need my gratitude restored.
My old blog was dedicated to the discipline of gratitude. I began losing that focus last fall when Danica was facing her first surgery. I stopped looking for the tiny graces, the quiet joys, and the moments of peace in the long hard days. I have been reading the book by L.L. Barkat, God in the Yard. In week 6 of this book about spiritual practice she focuses on prayer and specifically the role of lament in our prayer life. She writes, "Richard Restak notes that our brains cannot keep more than one emotion in the foreground at a time; too much emphasis on depressive thoughts can send us into a depressive spiral. Isn't it interesting, then, that Psalms incorporate two elements into lament: the truth of our struggle, and the truth about God? It is not necessary to rush past your struggle (go ahead an sit with it for a few days), but you might plan a second lament stage by reshaping your words into the form of a Psalm."
She then references Psalm 118 as a framework. I love this.
(1st lament item.)
(Give thanks to the Lord for He is good. His love endures forever.)
(2nd lament item)
(Give thanks to the Lord for He is good. His love endures forever.)
and so on . . .
Everything I was going to fill you in on tonight as far as Danica's newest scans and surgery are back in limbo. In addition to Danica becoming very sick on Thursday with an ear infection we received a call from Dr. Crawford's office, the orthopedic surgeon at Cincinnati Children's, that he is removing himself from Danica's surgery. At this point we do not know why he made this decision. Even the neurosurgeon, Dr. Crone, was unaware. I spent much of Friday on the phone between the two offices in Cincinnati and also with Dr. Menezes' office in Iowa. I was made to feel it was perhaps his not wanting to step into such a "messy" surgery and the risks involved but also some politics being played out internally that we cannot fully understand. Without a bone guy we cannot move forward at Cincinnati. We should know more Tuesday.
In the mean time I want to lament about more limbo, possible new paths, more appointments, new relationships, more decisions, different timing . . . All this very real upheaval and uncertainty is balanced by the truth, Our God is good and His love endures forever. One thing we can see for sure as we look back at each step we've taken is God is in it all. No meeting has been worthless. No appointment has been on the wrong day at the wrong time or the wrong place. We have made discovery with each doctor we have met.
Tonight Danica is feeling much better. We had a truly joyful time at a cookout at my parent's home this evening. Danica held her first sparkler. The girls played with "hoop-a-loops." We are tucked in our beds safely with bellies full of goodness and hearts full of love and grace. My new discipline of gratitude is to simplify my faith and follow my Dan's example of weeding through the important process of lament but ending with the bloom of "thank you." We are blessed beyond words. The truth of praise answers the doubt of sorrow with a resounding "His love endures forever!"
I have been quietly been following your blog for quite sometime now. I am the parent of a 6 yr old boy with CM1 he had an 18mm herniation. He was decompressed on 6/9 and began almost immediately began having symptoms again. He had a completly blocked CSF flow and after the removal of C1, the portion of his skull and 2 layers of his dura removed he is still only at a trickle, but they did say that the tonsils came up a whole CM (that was my positive of the surgery). So we too are facing the possibility of another surgery. NO where near what you are facing but I read your blog entries and I can relate to them so much. Your peace and Ativan one just really hit me. I too like you rely on my ambien, and klonopin to make it through some days. I, like you have questioned my faith due to much "head" knowledge, asked why my child, why my family. But I have also learned what does not kill us only makes us stronger. Your post on prayer for your marriage I felt too..The day that my husband and I found out they were decompressing was almost a death sentence for our marriage. My husband is a war veteran and has seen some awful things but you just dont mess with his family!!! I am seriously considering purchasing the book that you are reading as I really need renewed faith at this point. I live local where your sister is and I am going to contact her for a few dozen cookies, and in 3 mos when we follow up and see if we need another surgery im going to a Chiari Walk if surgery is not in our cards. I would love to help more because I know first hand how expensive how Chiari is but we are a 4 child family and after surgeries and scans we just are barely making but I want to help you all in out some way. I pray for your family nightly. I know I said earlier I have questioned my faith but I HAVE NOT given up on it!! I still pray and still thank god for the small miracles. Following surgery they put my son on a very high dose of steroids and we weaned him off and his last dose was yesterday so I am terrified of the future. I am speechless about the dr. pulling out on you guys thats just awful. I wish you lived closer our peds neurosurgeon here is AMAZING!! His name is Dr. Ian Heger and he studied at the Chiari Institute. I am just head over heels for him and his professionalism, and bedside manner. You would absolutely adore him and his knowledge. I keep a blog for my son its www.caringbridge.org/braydenwendorff
ReplyDeleteThere is so much more I could sit here and write about all your past posts that have touched me and how much we are so alike. My husbands name is Dan too, Just know that there are people out there that look forward to your posts and that really care from a far even though we dont know you or your family. Im to the point everyone with Chiari is family!!
Hello Monica,
ReplyDeleteI found your blog on facebook from a post you submitted. Danica is beautiful!! My daughter Mylee suffers from a Chiari Malformation also. Mylee was decompressed at 18months old in 2006. She is almost 4 and still suffers from a lot of symptoms that were presented to us when she was initially diagnosed! I agree more research and education needs to be done for this disease!! I am not convinced surgery is the answer, however for those who are in pain it may be the only answer. Mylee cannot walk, cannot eat by mouth and is mostly non-verbal. I too, keep a blog for her at www.caringbridge.org/visit/mylee. I also have a website for Chiari support and information at www.myleegrace.com. I have helped fundraise for ASAP (www.asap.org).
I will follow Danica and keep her and your family in our prayers! You are amazing and humbled by your faith! Thank you!!
xoxo,
Sara (Mylee's mommy)
"Never Give Up"