erin gale & christian vance: November 2013

holding hope for the first time

in the NICU

happy fourth of july...almost.

daddy getting her ready to go home

it has been important to me to write my thoughts about when hope was born. time to sit and write has been less frequent these days. so i've jotted a few notes down here and there over the last five months. i am finally taking the time to write today as the girls nap. so, here is a different kind of birth story that focuses on the emotions we've felt and lessons we've been learning. i kept the enthralling details of my contractions, epdidural, etc. within the confines of my journal. this post is mostly for me. don't feel any kind of obligation to read. i just wanted to make sure and get down some of my memories, thoughts and feelings.

i've read a lot about feelings that new parents of children with down syndrome face. denial, anger, frustration, depression...there is a whole slew of them. my reading included a blog posts and short stories from parents who felt like they didn't want their child at first because he/she wasn't the child they had expected. my heart ached. i cried as i read one particularly intense post. i was so impressed by the honesty of the mother who wrote these feelings. the raw emotion that she shared showed courage. as i read, i felt really grateful that i haven't felt those same feelings. when hope was born there was the initial shock that rocked my world as doctor told us that she has characteristics of a child with down syndrome. there will be no denial of the pure and utter shock that came with those words. the ache of loneliness and uncertainty that flooded my whole being as the respiratory therapist rushed hope to the NICU is also undeniable. at the time christian and i were supposed to be celebrating, goo and gaahing over our sweet new baby, i was left in the labor and delivery room with a nurse i'd met only a few hours prior. i longed to be with them. my heart was full of uncertainty and my head full of questions. however, there weren't feelings of anger. uncertainty was rampant. but, i didn't feel denial. i lay in bed with a ham sandwich in one hand and my phone in the other. reading scriptures, the proclamation to the family and info about down syndrome as i tried to wade through the what ifs. i wondered what christian was feeling, since we didn't have time to talk before they had to go to the NICU. after the longest hour of my life, the nurse wheeled me to the NICU. the moment i saw christian's face, i knew everything would be okay. practically speaking, i wasn't sure what the translation the feeling that overcame me saying "everything would be okay" meant. but, i felt it. there was a stark contrast to the concerned look on christian's face as he followed the respiratory therapist and nurse wheeling our little baby out of the labor and delivery room, to the look of peace and calm i saw on that same face as i was being wheeled into the NICU. everything was as it should be. it was visually apparent.

as we spent the usual time that families spend in the hospital with new babies, i felt that we were different than all the other families on the maternity floor. however, that feeling has changed. hope has down syndrome, but the syndrome is not who she is. the syndrome does not define our family. the syndrome doesn't define hope. the person she is has helped our family. the person she is brings out a lot of good in the world. it brings out the good in people. my brother-in-law, pete, was talking to christian one day and he said, "i just can't help but smile when i am around her." hope brings hope. she brings goodness. she bring innocence and something so pure everywhere she is. both christian and i feel we've been given a gift from God. a gift that allows us to feel peace and understanding about how hope will help us individually, help our family and help the lives of those who allow her to touch them in a way that only a child that has a disability can. we have felt light and peace. we've felt the love of God in our home. we've felt blessed by her little sweet smiles and laughter.

i'm not going to pretend i don't worry. i do. i worried that hope had hirschsprings disease. i worry that helth problems will come up because they are more common in children with down syndrome. i worry that if that is the case, that hope will leave this life before we do. i worry that she will outlive us. then what? who will take care of her? i worry that things won't work financially. i worry that people will be mean and make fun of her. i worry that she will struggle. i worry that i can't fix the struggle for her. i worry that i won't be enough. it turns out i worry with minnie too. but, i am trying to take it all a day at a time. and i realize that worry doesn't help. the Lord has given us the gift of hope. i have no question that He will provide. He always has. why would He stop now?

watching loved ones struggle is a challenge. i anticipate we'll have some hard times in watching hope struggle and work harder to accomplish things that for most aren't quite as difficult. my gratitude is great for her willingness to join our family to teach us lessons. lessons we would not be able to learn were she not in our family. i can't help but believe that hope made the choice to "take one for the team", knowing full well that there would be struggles. but, being willing to join us despite her knowledge of the struggles she'd face. to teach us. to be patient with us. to be what we need her to be so that we can become what God knows we can become. it is a beautifully humbling reality to be in this position.

a vivid memory came to me the other day. it was of a time before christian and i were married. we were sitting in an interview with our stake president. he was discussing with us the importance of the temple. he said that if we were worthy to attend the temple, then nothing in our lives would ever go wrong permanently. there was discussion of commitment. being committed to each other, and God, didn't mean only being committed during the happy times. he mentioned some challenges that couples may face and should continue to be committed to each other in. one of the things he listed was having a child with a disability. i remember thinking, "that would be hard. i don't know that i'd do so well in that situation." at that point, i remember being overwhelmed with the idea of having a child with a disability. i realize now that our child with a disability, is actually perfect in ways that i only dream of being perfect. she has a perfect spirit that is blessing so many. i recognize the beauty in hope's disability. there is an understanding that she is here more for me than i am for her. minnie, christian and i have been given a beautiful gift. the gift of hope.