recently i’ve been reading some of the writings of Amy Julia Becker. she writes about being a mother to a child with special needs, and i have been challenged by her attitude. in her blog, www.patheos.com/blogs/thinplaces/ she writes about thin places. i’ve heard about this early celtic christian concept before, when i was living in ireland, and it has always fascinated me. a thin place for the ancient celts was a place where the boundary between heaven and earth was especially thin and where they could sense the divine more readily. thin places may also be experiences or music or writings or silence…or people. i feel like this year has been full of thin places for me–moments where i feel the touch of God in my life. moments of incredible peace and comfort. moments of intense fear. moments of wonder and awe. and several very real moments where death has loomed near only to be triumphed by more breaths. more moments with her. so now i struggle to find hope in these thin places. these places where i have been forced to my knees, shaking and terrified by what God has asked of me. the past months have been filled with joy, but they have also brought a new intensity of heartache. more waves in the ocean of grief for our little Mikisa.
before, when we lived in uganda together, it felt different. there were no labels, no diagnoses, no healthcare system to fight. i thought i knew what i was getting into. i thought i was ready to accept tidy medical explanations for complicated situations. i thought it would help me feel safe. but everything is not as i imagined. Mikisa’s presence in our family, while an immeasurable blessing, has also forced us to reconstruct our faith and pray in a whole new [more sincere and earnest] way. as the diagnoses pile up and various specialists put labels on what is wrong with her and what surgeries she will need, and we meet with the school system to classify her multiple learning disabilities, and we realize just how far behind she is, i feel more and more crippled by worry and anxiety.
Mikisa’s pain has become ours. her heart is broken in so many pieces there’s no way we could hold them in our hands. the rawness of her open wounds keeps breaking my heart just when i think it couldn’t possibly break anymore. it’s a heavy burden to carry and the road to recovery seems long and full of potholes. i’m not sleeping well at night because i am so petrified that she’s going to have another middle-of-the-night seizure and i am scared i won’t hear it this time. i don’t know if i’ll ever sleep through the night again. it’s exhausting. but gradually through the murkiness of these rainy november days, i am beginning to catch glimpses of hope. as i become familiar with my new life which seems to center on taking her from one specialist to another and multiple therapy sessions each week, i am learning new ways to relate to her pain and new ways to find strength. i remember to thank Him because He is good and faithful.
“the hopes and fears of all the years are met in Thee tonight” keeps running through my head. if my hope is in God, [and it is] then why should i be afraid? oh, how motherhood has changed me. i am terrified and humbled and filled with joy at the same time. loving her has opened me up to such an abundance of life and such a deep joy. but with that comes fear. so how do i hold close that which i love and still let it all go? i am afraid of this release of control…but it needs to happen. i sit here trying to sift through this heartache and joy and i don’t really know what to do with any of it. all my life i’ve struggled with perfectionism. i’ve tried to do everything right and keep everyone happy. in my quest for perfection, i realize i have been missing out on what really matters. to live is simply to love. not to fix, or make perfect, or to have everything together. just to love the people that are walking along the road with us. all of us are broken. messed up. falling to pieces. love is what puts the pieces back together.